MICAH UPDATE

September 10, 2011

2011-09-10T16:07:00.002-05:00

Hello friends,
Two years ago today at this very hour was the most horrifying day of my life. I didn't know if I would make it through the day, but God in His infinite mercy gave me Isaiah 26:3 to sustain me.
"I will keep him in perfect peace whose mind is stayed on Me..."

That verse was a record in my head and heart for a week straight at least. A promise that I was not going to have a nervous breakdown and that God would see me through this if I concentrated on Him. It is no easy task to stay focused on God when your child's life is hanging in the balance. In His grace, God sustained us these two years and more than that has given us joy in the midst of the trials. Without joy in the Lord we would be a miserable lot. Psalm 16:11 says, "In Your presence is fullness of joy...". To me, that means that if we are spending time with our Lord we will be joyful. Joy has nothing to do with our circumstances in life. It does not mean that everything in our life is perfect and going just as we had planned. Joy is not dependent on our feelings, but on our relationship with Jesus. There are many times that we are not happy, but there is always joy. If you feel that there is no joy in your life then maybe you need to check on your relationship with Jesus.

As for Micah, he is doing well. We got moved into our new house (still in some boxes) and he has just started back to school. He still struggles to do the most basic of movements, but has been making more noise and eating more. Since moving to the new house he has eaten many things: fish, peach pie, banana, ice cream, country ham, fried potatoes, candy, etc...
He has not eaten a lot of it, but has had several bites of each and thoroughly enjoyed it. This morning I made him some garlic cheese grits, one of his favorite things. I told him that I believe one day he will marry a southern bell since he likes grits so much! He laughed, but I really do believe that. We still hold on to the promises of God for Micah. He is a most happy child when we are praying and singing to God. He will preach one day, of this I am sure, and tell people of all the wonderful things God has done for him.

Blessings,
Tina

February 7, 2011

2011-02-07T21:36:00.000-06:00

Hello friends,
     I pray that all of you are doing well and that our good Lord is keeping you in good health. We are all doing well and have been enjoying the snow lately.   We are closing in on the computer device for Micah.   Bids have been sent out by the school for pricing, but today we were called to the school to look at a new product, not sure which one we'll get yet. They are all quite amazing.
    The school recently purchased a new device for Micah called a gait trainer. It's basically a huge baby walker that supports him under the arms and around the chest. His first time in it he pushed himself around a bit with his left leg and drug the right one, but after a while they said he pulled the right one up and tried to use it too. His second time in it he went down the school hall and into the gymnasium. Third time he didn't want to do much.
     Micah has been showing more interest in food lately, we can't give him much, but he really enjoys what we do give him. He had a swallow study done at the local hospital and passed. This means that the speech therapists can start working with him on his swallow at school.
     Micah goes to Franklin again on the 9th for a pump refill. This time the meds will be given in the same dose, but will be diluted. When Micah had his pre-pump surgery trials the meds were dilute. The docs are wondering if this may help. Being dilute, they will be forced to spread out faster and over a broader area. This will of course mean that I would have to make more frequent trips because part of the pump would be full of water and so would go faster. If this has no effect on Micah then both the Franklin doc and the St. Louis doc want us to take him to Indianapolis to visit with another doctor there. He has worked with patients like Micah that have had good trials and then had no effect after the pump placement. This would most likely mean another surgery to move the catheter again. Not something that either of us want to do.
     Pray that God would give us wisdom and that we would hear what He wants us to do. He will have to speak very loud and clear if it's surgery! We are doing well, still have our ups and downs (don't think that will ever change), but I believe that we have more ups than downs. God knows our hearts and our desires for our son to be well again and so we each day keep laying Micah at His feet and wait for His perfect will to be worked out in our son. Thank you all so much for sticking with us and lifting us up in prayer. God has truly given us strength and joy beyond what is natural.
Blessings,
Tina

December 26, 2010

2010-12-26T16:57:00.000-06:00

Hello friends,
     A very Merry Christmas to each of you and a blessed New Year! I'm so sorry to have kept you all in the dark for so long and I will do my best to let you know what all has happened since I last wrote. We are enjoying our Christmas break and the snow that has been falling all day today.   Work on the house is progressing as Thomas has taken a long break for the holidays and has been taking the boys and a few friends and getting some things done there. We are still a ways off from moving in, but it will happen.
     We have been to see the Neuro Dr. several times since I last wrote and are at approx. the dose we were trying to get to. We were able to get there faster than originally thought because Micah was handling it better. Unfortunately we have not seen much of a difference in him. We are trying giving the meds in a couple of different ways to see if the way it is delivered makes a difference. The first way has not made any difference, the second will not happen until the end of Jan. If we still see no difference, the Dr. wants us to go to IN to see a Dr. there. He would see what Micah's condition is like at the dose he is getting and then most likely would give him a lumbar puncture to see what the meds are capable of doing for him. Then if he agrees with the St. Louis & Franklin Drs. there would be the possibility of another surgery, done in IN, that would once again move the catheter. The IN Dr. has had several patients like Micah, who upon testing seemed like they would benefit from the pump and then when they get it there is no difference, he has been able to help them. I don't know when any of this will take place, but will do my best to let you know ahead of time.
   As for the computer device I mentioned before, we do not have it yet, but all is going according to plan. There is a 30-60 day red tape process that has to be worked through in order to purchase it and the first hurdle has been overcome. Now we just wait. Micah is doing well in school still, but he gets frustrated with trying to communicate. It really takes a great deal of physical effort to do anything, constantly fighting against the tone issues.
     We recently had a meeting in church where various people held up signs for things that they were believing God for in this new year. They asked our family to do a sign and I felt very impressed that we were to put unity of the body on ours. I wondered why not put Micah's healing on it, but then God quickly showed me that they are the same thing. Micah needs unity in his body just as God needs His people/body to be in unity. Micah's head knows what his body needs to do. His brain tells it what to do and the body hears, but there is so much tension holding him back that he simply cannot do what his head is telling him to do. The body of Christ is no different. God speaks to His people, some of them hear and listen, some just hear. Those who listen try to do what is right, but sometimes there is so much tension and strife from the rest of the body that they cannot do what God has asked of them to do. Why do we needlessly bicker with one another when we should be lifting our brothers up and encouraging them in the word. Imagine what our world would be like if the body of Christ worked in unity with our brothers. Imagine the good that could be done, the lives that would be changed... It would probably look something like a 12 year old boy - healthy, full of hope, full of joy, no obstacle too big for him.
God bless you all,
Tina

October 7, 2010

2010-10-07T11:56:00.000-05:00

Hello friends,

I pray that all of you are doing well and are enjoying some cooler weather as we are here in TN. The kids are on Fall break this week and have been enjoying themselves. We took a few days as a family and left town for a little R&R beside a lake. It was a very refreshing time. We just enjoyed each others company and God's creation.

Micah is enjoying his break from school also, he doesn't have to get up at 6 a.m.! We recently had a meeting at his school discussing how he is doing and what goals we/they have for him. His teacher has moved up several of his goals because they are learning that Micah understands very well what they are saying to him. He is still going to the reading/language arts class regularly and last week started going to a math class also. He does so well with his eyes (when he wants to) that the school is planning to purchase a computer system for him that uses his eye gaze (it tracks his retina movement) just like we use a mouse. With this system he would be able to do his school work and could also use it to communicate with others. The system would be his as long as he were in school and he would be able to keep it with him at all times. It is quite amazing!

We took Micah to see his Neuro Dr. yesterday for a refill on his pump. This is going okay, but we are not seeing as much change in Micah as we had hoped we would. The Dr. said that we need to get to a certain dose before we make any decisions as far as whether or not this is a help to Micah. It will take us until Feb. to get to that dose as we cannot go up too quickly. At that point we will decide what needs to be done.

As far as Micah's spirits go, he is doing well, much better than when I last wrote. There are still times when I see a little disappointment in his eyes, I guess that is to be expected. He does enjoy watching his siblings play and having fun, he will watch and laugh at them. I'm glad that he finds joy in this, but it also grieves my spirit to see him so healthy and so confined at the same time. He knows what he is missing out on and I find myself asking, "How long, O Lord...", but

I am still confident of this:
I will see the goodness of the LORD
in the land of the living.

Wait for the LORD;
be strong and take heart
and wait for the LORD.

Ps. 27:13-14

Blessings from the Father to each of you,

Tina

Sept. 8, 2010

2010-09-08T13:33:00.000-05:00

Hello friends,
   Wow, I missed a whole month!! Sorry. It's been a busy time for us around here getting everyone ready for school. Micah is in the public school system where he gets all of his therapies on a regular basis, works on computers using either a switch or a toggle and has started going to a reading class. He has had two vocabulary tests and scored a 100 on both of them (he wanted me to tell you that)! Many of you are probably wondering how that works so... Micah has an aid that goes with him to class. He uses his left hand to point at things or push buttons and he also uses eye gaze. So he can either touch the answer or they can hold them up and he will stare at the answer. Micah also wanted me to tell each of you, "thank you so much for praying for me" and he had a huge smile on his face at the time.
   During this past few weeks there have been times that we believe Micah was struggling with depression. It will be a year on the 10th since his accident and he knows that. He is doing much better, but prayers would be appreciated for this. I had a dream and someone was telling me that we have to get Micah to a point that he is consistently believing that God has something special for him. He has to believe in the promises of God.
   As for the rest of us, we are doing well. We decided to put the 3 younger ones in a private school run by our church and they are doing well. I still have the 3 older ones at home with me, it's been really quiet during the day.
   We are thankful to God for saving Micah and pray every day for his healing. We pray always that God would bless those who have been a blessing to us.
Blessings,
Tina

July 28, 2010

2010-07-29T00:41:00.000-05:00

Hello friends,
   Here I am again apologizing taking so long in between blogs, oh well. Micah is doing well, though he has been having some difficulty going to sleep this last week or so. We resorted, on a few days, to giving him some of his leftover sleep meds. We can only handle so many days of staying up til 2 or 3 in the morning!! I took him to see hi TN Dr. on the 19th to get his stitches out and get his meds bumped up a bit more. We are seeing some progress, but mostly on the left side. He has a lot more control over his leg and arm and is quicker to respond with them. The right side is still not moving much, but on the whole he is more relaxed on a regular basis. The Dr. programmed his pump to increase its dose tomorrow so maybe we will see some change on the right side too. My birthday was a few days ago and on that day Micah turned his head from left to right several times and also pulled his head up several times! That was a great birthday present, but I haven't seen him do it since then. We just keep praying.

     I have felt lately that I need to share more about how Thomas & I are doing, but haven't wanted to. It's not that I don't want to be open, but more that I don't want it to seem like a pity party on line. Trust me, we have plenty of those and they're usually not very pretty! At the moment, we are doing well, but it usually doesn't take much to reduce us to tears. We seem to take turns on the "doing badly" times, God is good. A week or two ago I was having a really hard time. I was crying every day and bedtime was difficult too. I know that all we can do is depend on God and I do depend on Him greatly, but I had gotten to a place where I didn't want to spend time in His word. The reason for this was because every time I did God would give me something that brought me hope, then progress for Micah is so slow that it was disappointing. I'm thankful for every little thing he does and try to cheer him on, but when your hope is built up over and over and the answers you're looking for are not seen it is painful. That is one sermon I have never heard about hope, the painful part of it. What else can I do though? I can't not believe, I know all too well how much God loves me and how much He loves Micah and wants the best for him. It is a struggle to hold on to hope, to keep believing in what God has said again and again when you don't see the answer. The easy thing to do is to just settle for what the world has to offer and let go of that hope, to let go of that pain.
     A rose bud is a beautiful thing, but when the flower opens and lets the fragrance out it is so much more beautiful. You do not get the full fragrance of the flower unless it opens. If a rose had the choice of whether or not to open, it may choose to stay shut. It could choose to stay a bud, but has to open to reach the fullness of its beauty. In doing so it has to bear the sun, wind, rain and pests that go along with it.
     This is how I see our walk with Christ. We have to open ourselves up, even though it may bring us pain, so that we can be that fragrance of Christ that draws others to Him. We've come too far with Him to not trust Him with everything. Though at times we feel that we cannot go on we must trust that He knows our frames, our weaknesses, everything about us and He knows what we can bear. It is much more than we think possible if we keep our hearts and minds stayed on Him. I hope that this is an encouragement to those of you who are also struggling.

Much love to you all and blessings from the Father,

Tina

July 12, 2010

2010-07-12T11:36:00.000-05:00

Hello friends,
   So sorry for being away so long. I did not have computer connections for most of the time that I was in MO & IL. We ended up staying on longer as the Dr. wanted us to be near by in case there was a problem. We stayed with my parents in IL until Micah reached 10 days post surgery, then went for a check up with the Dr. and came home the following day. Everything went well, the old catheter was removed and a new one placed in a different spot. We do not know the full results yet as we are still tweaking the dose. His Dr. cut his dose back by half so that there would be no chance of overdosing him. He has bumped him up twice and we will go to the Franklin Dr. next week to get out stitches and most likely get the meds bumped up a little more. We have noticed that Micah is moving himself more, but he is not any easier for us to move. As far as medicine goes, this is the end of the road for Micah as there is really nothing else medically that can be done for him. So, as from the beginning, he is in God's hands to do with as He pleases.
   We got a chance to stop by Ranken Jordan while in St. Louis and see a few of our friends there for a few minutes and also took Micah to do a bit of shopping with us. He enjoys getting to do more than go to the doctor or church!
   Yesterday Thomas picked Micah up to take him to his room and before leaving the room he spun Micah in circles and Micah laughed and laughed! We do love to hear him laugh. Another night we were getting him ready for bed and decided to stretch him out a bit. He never likes this and tends to tense up a lot which only makes it harder. On his own, he can almost put his left leg flat on the floor (I've only seen him do this since the surgery), but the right one he doesn't use much. While we were stretching him his sister told him jokes and funny stories, every time he laughed his leg would go out more. We ended up getting the right leg stretched farther than it has been in a long time. "A merry heart doeth good like a medicine".
   Staying in IL was a bit challenging because Thomas was not there and my parents house, though bigger, did not have all the conveniences that we have here to help with Micah. We took him downstairs to sleep one night, but when we carried him up the stairs the next morning we decided that once was enough and he would sleep upstairs the rest of the trip!!
   By next Saturday I will once again have all of my children under one roof again!! I'm really excited about that!
   Oh, I almost forgot, Micah will have therapists coming to the house a couple of times a week starting tomorrow. He most likely will not enjoy it, but it is good for him. Also, he ate several bites of pancake yesterday. That is more the type of therapy he likes! Thanks for your prayers.
Blessings,
Tina

June 28, 2010

2010-06-28T15:58:00.000-05:00

Hello friends,
Just wanted to let everyone know that Micah has been officially discharged and we will be headed to IL for a few days before going home to TN. We'll see how this works for Micah when all of the dose adjustments have been made. Thanks for your prayers!
Blessings,
Tina

June 26, 2010

2010-06-26T15:23:00.001-05:00

Hello friends,
Just a quick note to say that the surgery went well, we are in the PACU with Micah and he is just starting to wake up. I will need to stay here with him until at least Monday 28th so that the doc can watch him and adjust his med dose according to what we see happening with his tone. At the moment he is cut back to half the dose he was getting. By this evening, or at the latest tomorrow morning, we should know which direction (up or down) we need to go with the dose. Thanks for your prayers!
Blessings,
Tina

St. Louis trip

2010-06-25T10:57:00.000-05:00

Dear friends,
We got to Tina's parents house on Wednesday night. It is a little over an hour east of St. Louis. Josiah, Elizabeth, Matthew and Daniel are with Tina's parents. Abigail is gallivanting around somewhere in Kerala, India with my parents and Samuel is somewhere on a beach in St. Simons Island with some friends!
Tina and I were in St. Louis yesterday for a contrast study CT scan and bolus through the pump (extra dose of Baclofen). The CT showed that the pump was functioning properly but the bolus had no effect. So today we are back in St. Louis to do another trial with direct injection of the Baclofen. This will be administered through a lumbar puncture (kind of like a reverse spinal tap). He will stay in the hospital for observation over a period of 6 hours. We are not sure if we have to stay overnight. If we have positive results from today we have a couple of options. Change in dosage and/or repositioning of the catheter inside the spinal column (involves surgery). As you can see it is a try and see what happens method! So that's what is going on today. Surgery could possibly be tomorrow or Monday. I will probably return after the weekend to Jackson to get back to work (we drove separately just in case this happened). Please continue to hold us up in your prayers.

"I will lift up my eyes to the hills. Where shall my help come from?

My help comes from Jehovah, who made Heaven and earth"

Shalom

Thomas

June 22, 2010

2010-06-22T21:10:00.000-05:00

Hello friends,
Just a quick update to let you know our schedule for the weekend. Micah is scheduled for a CT (dye injection) and also the comparison test that I mentioned before on Thursday afternoon. The surgery will be the following day in the late morning. Thank you for your prayers for him, I will post results via the blog and FB also.
One other thing that I forgot to mention in the last blog was that I had gone to pick Micah up from school one day and all the teachers told me that I needed to pursue a different class for Micah as he was too smart to be put in their class : ) It's always nice when someone else sees what you knew was there. So, we have started the process of moving him up. That's all for now.
Blessings,
Tina

June 14, 2010

2010-06-14T08:39:00.000-05:00

Hello friends,
   It seems it has been a while since I was last on here, sorry. Life is busy these days. I don't have time for too much this morning, but I wanted to update you on a couple of things.
   First, the summer school for Micah is going well and he seems to enjoy it, but the bus rides are a little much. The mornings are okay, but coming home it has been really hot. He rides for almost an hour each way and the bus has no AC and with the high temps and humidity it's been difficult for him.
   Second, we are headed to St. Louis on the 23rd of this month. We will take Micah for an outpatient test on the 24th and then on the 25th he is scheduled for his surgery. He will have to stay in for 2-3 days depending on how he does. If he is not in too much pain we will come home, but if he is then we may stay at my parents an extra day or so. Please pray that all would go well with him and that he would heal quickly. I must admit that I'm a bit worried about the surgery because after his last one he quit doing everything he had been previously doing. It was a long time before he tried to use his hands again.
   Many blessings to each of you and thank you in advance for your prayers.
Tina

May 24, 2010

2010-05-24T12:54:00.003-05:00

Hello friends,
Good afternoon, I pray everyone is doing well today. I just talked to the Dr. in Franklin and he, thankfully, canceled tomorrow's appt. as we have not noticed any difference in Micah since last week. Five hours of driving for a 20 minute appt. is a lot. They are going to start the processing for Micah's trip to St. Louis and I will let you know what is going on as soon as I hear back from them. This month we are going to put Micah into a summer program through the public school system. He will go Mon. - Fri. for 4 hrs. and will get all the various therapies he needs each day. If this goes well then we are looking at putting him into to this program (a program for the medically fragile) during the regular school year. They will pick him up and bring him home, he will get his therapies, there will be nurse on hand if necessary. We met with the people (at least a dozen) last week and were very impressed with them and the program. Before leaving Thomas prayed for all of them (not one of them protested), principal included. One of them told us later that that was the first time they had ever had a parent to pray for them. Micah will start the summer program on Wed. morning and probably the most difficult part of this will be getting him ready to go by 7 something in the morning and once again trusting him into the hands of someone else : (
While in church on Sunday, I felt impressed to share something with you back from the St. Louis days. I have lately been asked by a few people how I am able to handle this happening to Micah. In their eyes, I seem to have just taken everything in stride. Well, this is not so. I have days where the emotions are nearly uncontrollable, the least little thing can set me off to crying. For example, at the end of getting Abigail ready to leave I had a meltdown and mainly because I was realizing the feeling that I am already missing one child. That's what it feels like to me most of the time, the Micah we knew is not here and we miss him terribly. Most of the time, if I stay busy, I am fine. Anyway, what I experienced during that time was an overwhelming sense of security. Honestly, there were times that I felt like I could have driven through rush hour traffic in St. Louis blindfolded and I would have arrived at my destination unharmed. I believe that God knew that I was stretched as far as I could go at that time and I needed that sense of security to just be able to function. Even now there are times when I start to worry about something (finances, time, you name it) and it usually does not go beyond the starting point because God has proven Himself more than able to take care of us far beyond anything that we could ever do on our own.

"Therefore I say to you, do not worry about your life,what you will

eat or what you will drink; nor about your body, what you will put
on. Is not life more than food and the body more than clothing?

Look at the birds of the air, for they neither sow nor reap nor gather

into barns, yet your heavenly Father feeds them.

Are you not of more value than they?"

Matthew 6:25-26

For those of you that do not have the answer to that question, it is yes. You are, no matter what you think, of great value to your Father.

Many blessings,

Tina

May 17, 2010

2010-05-17T15:12:00.001-05:00

Hello friends,
     I sorry I've been away so long. It's been a very busy few weeks. We didn't have any damage from the flooding that was going on here, though we did have a lake that reached from the neighbors driveways to within 15 ft. of our front door. Our prayers are with those who have lost everything during this time.
   My eldest is just about to get on a plane headed to India to spend the next couple of months with her family there. She will be visiting both India & Nepal. She will be greatly missed here, but I'm so glad that she is getting this opportunity.
     Around here, we are trying to finish up with school, fix up the new house & get this one ready to sell. It has been busy & I don't see that ending any time soon.
   Micah has been doing well and is still enjoying being around the house with us. I took him to the dentist the other day for a cleaning, he did pretty good. The good news is that most of the teeth he has lost (other than the 2 front ones) have been baby teeth! I was so happy to hear that.
     As for his pump, I think I said in the last blog that they weren't able to see any leakage. His Dr. in TN called the Dr. in MO (that did the pump surgery) to talk about Micah and they are both in agreement that it is not working. The surgeon asked if we would first try changing his dose before doing the last test which will end (no matter the outcome) with a surgery. Tomorrow, 2 pm we go to Franklin to let the Dr. reset the pump. Instead of getting a continuous amount all day he will get a large dose every few hours. If there is no noticeable difference with this then most likely we will be headed to St. Louis for the other test.
     Lastly, I wanted to share something that I read today:

When something big happens - a blessing or a tragedy - we recognize it immediately and respond with praise or pleadings to God. But, in the little things - the routine, the mundane, the details - it's easy for us to overlook that He is working.

   "You are great in counsel and mighty in work, for your eyes are open to all the ways of the sons of men, to give everyone according to his ways and according to the fruit of his doings."                         Jeremiah 32:19

     As in a forest, the big stuff which is visible and colorful (the partly decayed organic matter of leaves and sicks that covers the forest floor) is an important part of the forest, but if you dig a little deeper to what is beneath you will find all sorts of important little things happening. It is here among all these little things that God is building the future forest.

      It is in the little things of our lives that God builds us as His people. The everyday routines of life, the mundane tasks those jobs that seem to go on in an unending cycle of boredom, these are the things that grow us and test our character. Our whole lives are an offering to God, an act of worship to our Creator. God built our physical bodies out of small things, so we too are to take the small things of our lives and build, with His help, something beautiful that will bring glory to God. Don't think that you have to be a pastor or a missionary to do the "important work", everything we do is important in the building up of the kingdom because everything we do affects someone else. Maybe, we get the chance to do these little things over and over everyday because God knows that those are the things we need the most practice in doing to the best of our abilities.
May God bless you today with the opportunity to do a little thing well.
Blessings,
Tina

April 28, 2010

2010-04-28T22:41:00.001-05:00

Hello friends,
Today went well. Unlike our last trip to Vandy, when I walked in the door there were people waiting on me and they had already checked us in! They were really embarrassed by the last trip there. Micah went through the test and CT with no problems or complaints, but thus far they have not noticed any leaking. They were going to study the pictures more and let us know if they find anything. Our Dr. told us that this test may not show anything, but he wanted to do it first as it was the least invasive of the tests. Our next step will be a comparison test. Micah will spend the day at the hospital for this one. They will first give him a large dose of his med via the pump and then watch him for a few hours to see if they notice a difference in him. Later in the day he would get an injection of the same med right into the spine and the again they would watch him. If we see a difference only in the injection, then we will know that the pump is not working properly. He got an injection like this when they did the trial before the pump was placed in him. Had the trial not gone well Micah would not have gotten the pump. We don't have a date for this test yet, but I should find out something in the next few days. Thanks for your prayers!
Blessings,
Tina

April 27, 2010

2010-04-27T17:23:00.001-05:00

Hello friends,
Well, Micah has continued to do well off of his meds and tomorrow morning we once again head to Nashville to see about the pump. Hopefully this time there will be someone there to do the test! I'm not sure how to pray about this except that God's will be done. I'd love to have him off of the meds, but I'd also like for it to not be working, get it fixed and see him be able to move more. His appt. is at 10:30 am and will take about 1 1/2 hours. I'm keeping this short and will try to get back on here tomorrow evening to let you know what we find out, if anything.
Blessings and thank you for your prayers,
Tina

April 19, 2010

2010-04-20T00:02:00.001-05:00

Hello friends,
   Well the birthday went well and Micah got a new friend whose picture I hope to get on here soon. He was a happy camper all day! My parents came for the weekend and were very happily surprised with Micah. They had not seen him since we left St. Louis and he has changed a lot since then. This afternoon I was called to his room by Abigail who found him with his leg hanging over the side of the bed and the rails were up (left leg over the right rail)! I have not seen him do that since before his pump surgery in Nov. I think. At that time he was doing that so often that they put him in a bed that was like a tent so he couldn't fall out.
     He is still doing well off of the meds, no vomiting etc... He was on 8 different meds when we came home in Feb. and now we are down to 2, praise God! The last one he has only been off of for 2-3 days and so far there is no problem. On the 28th we will have the test done to see if his pump is working properly.
     We are all doing well by the grace of God. We are keeping busy with work, school, Micah & the new house. Renovation is going well and we have been blessed to have a lot of friends (new & old) to show up and give us a hand. We've been taking Micah with us also and I think he enjoys getting out and seeing all the people and there is always something going on for him to occupy himself with.
   I've been thinking a lot lately about hope. My Bible defines it as: the expectation of future good. Future good, that means something isn't good now. We all know the popular verses about hope, but there is one much less quoted,
     "Hope deferred makes the heart sick, but when the desire comes, it is a tree of life."
      Proverbs 13:12
What I like about this verse is that it says "when" the desire comes, not "if". My desire is obvious, sometimes though, I catch myself thinking that it would be easier to just accept things the way they are. Why would I think that? Well, because hope is painful. To continually put my hope & trust in God, believing Him for Micah's healing opens me up to all kinds of pain. It's okay for me/us to hurt and to cry out to God, the balance is to not live in that pain. If I live in that pain then I am not trusting God and there is no room for joy in my heart. God does not work on the same schedule as I do, if He did Micah would have been healed a long time ago and all the prayers of different people around the world, answered. So, what do I do? Should I quit hoping so that I can avoid the pain that comes with it? I think not, and you should not quit hoping for whatever your desires may be either. Don't be afraid to cry out to God, but take time also to praise Him & thank Him. Praise Him and the joy will come.
Blessings,
Tina

April 15, 2010

2010-04-15T01:28:00.006-05:00

Hello friends,
Well, I am happy to say that Micah is off of his muscle relaxant with not problems. We started this process last Tuesday, since that time he has gotten more relaxed and has not thrown up in a week now. Oh, and Micah's birthday is tomorrow, he will be twelve. He is very excited, maybe we will get a new picture on here of him on his birthday. Praise God from whom all blessings flow!
We went to church this evening and had a wonderful time of worship. One song in particular really touched me, I've put the words below (emphasis mine). I pray this will minister to you as much as it did me.

Blessings,
Tina

Desert Song (Hillsong)

Verse 1:
This is my prayer in the desert
When all that's within me feels dry
This is my prayer in my hunger and need
My God is the God who provides

Verse 2:
This is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flame

Chorus:
I will bring praise
I will bring praise
No weapon formed against me shall remain
I will rejoice
I will declare
God is my victory and He is here

Verse 3:
This is my prayer in the battle
When triumph is still on its way
I am a conqueror and co-heir with Christ
So firm on His promise I'll stand

Bridge:
All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

Verse 4:
This is my prayer in the harvest
When favor and providence flow
I know I'm filled to be emptied again
The seed I've received I will sow

April 7, 2010

2010-04-07T23:15:00.001-05:00

Hello friends,
As I sit here listening to the rain and the thunder I'm reminded of the awesomeness of God. He is in control of everything. He makes the plants to bloom, the pollen to spread and the rain to wash it away. If we could see the "big picture" through His eyes we would see that nothing is early or late.

"There is a time for everything, and a season

for every activity under heaven" Eccl.3:1

Since my last blog, Micah has gotten off of the nuero-stimulant with no problems. Thank you all for your prayers. Coming off of that particular med caused a little bit of upset to his "system" and so we have taken him off of another med to see if that helps to make things more normal.

Today we had Micah's appt. to get his pump refilled so we made the trek to Franklin to see his Doc. Thomas couldn't go so I took a friend along to help me out and we had a good time. This was my first time to take Micah anywhere without Thomas along to help so it was a big day for me also. We were feeling so proud of ourselves that we decided to try taking Micah into a restaurant with us instead of eating in the car. This was actually quite risky as Micah was not keeping things down well today, but we made it through lunch and all the travelling with no mishaps.

As for the Dr. appt. itself, it went well and the refill didn't seem to cause Micah any discomfort at all. We are also starting to wean Micah off of his last (outside of his pump) major med! This happened because I didn't get to the pharmacy to pick up a refill on Friday and didn't realize that they were closed on Saturday. When Monday came around I was out of this particular med, it is a peripheral skeletal muscle relaxant. By the time I got everyone up and was able to get out and back it was way past the 8 o'clock dose time. After weighing the options I decided to skip that dose rather than push him back to the wee hours of the next morning to get his evening dose. Around noon or later Thomas came for lunch and we had just put Micah in the bed and his legs seemed so relaxed to me. I called Thomas in to see what he thought and he agreed that he was much looser than normal. Now one would tend to think that if you don't take your muscle relaxant that you would be more tight, right? We decided to skip that dose again the next day just to satisfy our curiosity and again he was more relaxed, so when I told the Dr. about this he said to start weaning him off of it and we'll see how he does. It will take about a week and if we see no adverse effects we will be done with that one also! We praise God for every little step!

Thank you so much for sticking with us and praying for Micah and the family.

Blessings,

Tina

April 1st 2010

2010-04-01T12:25:00.005-05:00

Hello friends,
   Welcome to April and I pray that you don't have to deal with any fools today! We are doing well here and gearing up to start on the new house. If you didn't notice the link to the left on my last blog, please take a look. Thomas has started a blog for the house. We had a lot of people tell us that they wanted to help with the work, but had trouble keeping all those names in our heads, so we started the house blog to let people know what kind of work is going on any given day. If you are one of those people and we haven't contacted you, we do want your help. You can respond to the email link to let us know what you can help with. We are excited about the new house because it will be so much easier to move Micah around and to get him out of the house. We have so many dinks in the walls in this house from his chair it looks like someone has been throwing rocks at them!
   Our appt. for tomorrow has been rescheduled again to April 28th. The Dr. had wanted to check the pump before refilling it, but as it turns out, we are going to have it refilled on the 7th but are not going to be able to see if it is working properly until the 28th. Seems a bit backwards to me : / We have recently gotten Micah off of the sleeping med he was taking without any trouble. This week we are weaning him off of another med, a neuro-stimulant. Our prayer is that we will not see any regression in him so that he will be able to stay off of this one also. He should be off of it by Monday so please pray that he will do well.
   We have been enjoying the warmer weather and getting Micah outside more. He had a teacher come by to visit this week and until she knows more about what to do with Micah, where school work is concerned, she will be reading to him twice a week. She brought a Hardy Boys book with her this week and he seemed to enjoy that. I think the next step will be the therapists coming to the house. It could get a little crazy around here with therapists, teachers, new house and homeschooling, please pray for my sanity!
   One other thing that I've noticed lately with Micah is that his laugh is starting to sound more like he is laughing instead of just some random sound coming from him. Did that make any sense at all? I'm hoping that this is just a beginning of him getting control over the tongue and vocal chords. I have not been consistent with giving him things to try to chew and swallow, but his tongue has been more relaxed lately and staying forward in his mouth so we will try that more. I did buy him some very tiny peanut butter cups the other day and he was very happy about that. He doesn't always get all of it down, but he tries. We need a consistent swallow from Micah, he chews fine, but the swallowing is the hard part. To have a consistent swallow he needs more control over his tongue. Oh, that we all had that, that tiny little member causes us all trouble!
   As for the rest of the kids, they are doing great. I've have been pleasantly surprised how they have rallied around Micah and pitch in to help with even the most unpleasant of jobs without complaining. Sometimes those "unpleasant" tasks are taken care of before I even know that they happened! I am truly blessed with these children and a wonderful husband to share them with! May the Lord bless each of you with His presence today in an uncommon way. Please take time to enjoy this weeks many opportunities to celebrate Jesus. Many churches will be having Good Friday services and Easter Sunday services also. If you don't have anywhere to go, we would love to have you come to our church.

Blessed is the man who does this,
       the man who holds it fast,
       who keeps the Sabbath without desecrating it,
       and keeps his hand from doing any evil." Isaiah 56:2

I want men everywhere to lift up holy hands in prayer,

without anger or disputing. I Timothy 2:8

Blessings,
Tina

March 26, 2010 10 PM

2010-03-26T23:16:00.000-05:00

Hello friends,
   Well, we just got home about 2 hours ago and I wish that I could tell you that we were really excited about the tests. We took the 2 hour trip to Nashville this morning, got there right on time, were called back on time and then waited from 1:50 (1st appt. time) until 3 (2nd appt. time) just to find out that the person that was supposed to do the test was not working today and that the only other doctor available (they don't have many that work with these pumps) was in surgery until late. Even if he had the time he would not have done the procedure because he had never seen Micah before. They did call me yesterday and confirm the appt. to make sure we would be there on time, if only we could charge doctors for things like this : (
   Thomas did take the day off of work, but it was not a total waste as we got some good quiet time in the car. Micah did enjoy getting out of the house and had no problems in the car. We also got to spend some time with a good friend that we had not seen since Sept. when Micah was at Vanderbilt. All in all it was a good afternoon though we spent 4 hrs. driving and will have to repeat this again next week. I don't have a date yet, but will let you know when I find out. Thanks for all of your prayers.
   As for life around here, we are getting better at keeping the house running (not always smoothly). The kids have been a great help for me, plus a few dear friends that have been helping out a lot. We finally have Micah signed up through the school system and soon we will start having some therapists/teachers in house to work with him. He has been doing really good for us, but hates when we stretch him out. Another bit of good news is that (I said that I wasn't going to put this on here) hmm, how to best put this? He is regaining some control over certain bodily functions : ) We are very excited about this, he may not be happy I'm telling you, but it makes him feel good too!
   The next news item we have is that we are going to be moving into a bigger home. One that we can easily get Micah in and out of. Many of you already knew this and have been offering help with the "getting the house ready" process. We do appreciate all of the offers, but I cannot remember all of your names so please send an email & contact info to: tvhouse@eplus.net. Please send us your name and what you are capable of helping with from childcare to skilled labor and everything in between.

Blessings,
Tina

March 18, 2010 10 AM

2010-03-18T09:45:00.000-05:00

Good morning friends,
   There was a last minute change to the schedule. Micah will not be having his test(s) today, but has been rescheduled to Friday the 26th, 1:50 in the afternoon. If I understood correctly they will be doing the dye contrast and then possibly one other test that day.
   Micah has been doing well since the last post, and has been going outside some lately since it has been dry. He loves to be outside so the warmer weather has been a blessing. Thomas & I have been having some serious talks with him lately about the way things are for now, how his friends respond to him, how his siblings love him and care for him, God's promises for his life, etc... The response is always the same, he listens carefully, but the emotions always win and he cries & cries. I hate to see him cry, but am always happy to see that he does understand what we're talking about. I have, of late noticed a stubborn streak emerging in him. When we are asking him to do something specific to answer a question that he doesn't want to do he will totally ignore us, not even look at us. What to do, sounds like any other kid.
   This is from my reading this morning:

O God, You are my God;
         Early will I seek You;
         My soul thirsts for You;
         My flesh longs for You
         In a dry and thirsty land
         Where there is no water.
  So I have looked for You in the sanctuary,
         To see Your power and Your glory. (PS 63:1-2)

“Most assuredly, I say to you, he who believes in Me, the works that I do he will do also; and greater works than these he will do, because I go to My Father.  And whatever you ask in My name, that I will do, that the Father may be glorified in the Son.  If you ask anything in My name, I will do it. (John 14:12-14)

Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us.  And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.   (1 John 5:14-15)

   We keep asking and we keep believing and so must you dear ones, whatever the situation.
Blessings,
Tina

March 14 10:30 AM

2010-03-14T10:59:00.000-05:00

Hello friends,
   Well, it's Sunday morning and I'm at home with Micah : ( I've been (along with some of the other kids) sick and Micah really wanted to go to church. We were getting him ready, but shortly before Thomas left with the kids, Micah threw up and there was just no time to get him cleaned up and ready. He was very upset. What to do? There seems to be no way to calculate when this is going to happen and cleaning him up takes a lot of time. Okay, I'm finished whining today.
    We've (despite the above) had a good week and had some wonderful visits with some special people. We will be headed to Vandy with Micah on Thursday the 18th for the dye contrast test that I mentioned in the last blog. I will try to get on here that evening and let you know what the Dr. says. No promises, but I will try to do better at keeping you updated with what is going on around here.
     I've put a link here of a song that I was listening to this morning and if you don't have time to listen then the lyrics are below the link. A good message for all of us to remember is that God's love is unending. No matter the situation or what it feels like He is still there. Be blessed today and enjoy your family.

Blessings,
Tina

http://www.youtube.com/watch?v=Wm8Pq4hDTlk

On and On by Chasen

Awake tonight
I’m breathing the air of the night sky
Listening and wanting
An answer to questions You’re wondering
I never thought it ever would be possible
To cross the lines we drew
That govern what we say and do
But no height and no depth could separate us

CHORUS
Some say we need a miracle
Some say there’s no hope at all
But I know Your love is strong, it goes on and on and on and on
Rise up when it gets us down
It’ll be the voice in a blaring crowd
Because we know Your love will lead us home
It goes on and on and on and on…

VERSE 2
I tried my way
It always ends up being a mistake
But You’re right when You say
That You set the time for the plans You make
I never thought that I could ever learn to let it go
Somehow its better when I follow in the paths You show
So I’m here I’m waiting
Cause I believe

CHORUS

BRIDGE
There is no fear of belief
There’s just this cold reality
That wants to take me away from You
There is no doubt in my mind
That in Your perfect time
Your plans and Your ways will unfold.

March 2, 2010 10 AM

2010-03-02T10:08:00.001-06:00

"He who refreshes others will himself be refreshed." Proverbs 11:25

Hello friends,
   Sorry it's been so long since my last post. Sometimes I just don't want to get on here and write and other times I simply can't. I've had both of these "times" since the last post. My excuses were that either I was feeling too emotional or too angry or I don't have time..... My only good excuse was that for a period of 5 1/2 days we had some virus sweep through the entire family. Micah and I were the last ones to get it. I had to call in recruitments to help me. A big thank you to those who came to help and to those of you (though you probably thought nothing of it at the time) brought us chicken soup! Just what the doctor ordered. If I haven't said it before, thank you all so much for taking time from your schedules to help us out with food or service. It has all been very much appreciated. That goes out to all of you from the beginning of this whole ordeal. Julie, if you are reading this please pass this on to those wonderful co-op ladies in MO/IL whom I've never met. Maybe one day I'll be able to thank them myself, but until then.... The bible verses throughout this note are promises for each of you, whether you are in need of refreshing or not. When it's needed God will send it your way if you're faithful to refresh others (whether you feel like it or not). Sometimes we need to be that refreshing source even when we feel like we should be on the receiving end. What I'm finding out is that when we feel like we have nothing to give, that is the time that God wants us to give. It will not only lift up those on the receiving end, but also those doing the giving.
   We can be so fearful to share our struggles sometimes when that is the very thing needed to get us out of the despair that we feel. There are many people that struggle with the same issues you do and when you share others will then begin to open up and share also. This is particularly true among moms. We can get so down on ourselves about how poorly we are doing as mothers that it is downright depressing. I remember one day when I was feeling this way, I had gone to a friends house that I thought was the most wonderful, patient person I had ever met. When I walked in she was really getting on to one of the kids & I felt so much better knowing that this great woman was not the "perfect" mom that I had set her up to be.

"If you...satisfy the needs of the wretched...the Lord will satisfy your needs"   Isaiah 58:10-11

   Sometimes the person you need to refresh is someone that you don't want to give the time of day to, but they are created by God too. It may be that the refreshing you give to them is what will change their hearts. We are all wretched people at one time or another. Don't think so highly of yourself that you can not help your brother in need.
   As for Micah, we went to meet his Dr. in Franklin yesterday. This is the doc that will be taking care of his pump. We both really liked him and he has set forth some things to take a look at and possibly change. The first is a simple brand change in one of the meds for 1-1 1/2 wks. and if we see a change we keep it. If not, we will wean Micah off of it and with that will go the med that is given to protect his stomach from the first one.
   The next thing to look at is the pump itself. He wants to make sure that it is not leaking. As I said before, we really have seen no difference in Micah since the surgery. The first thing will be a contrast study (dye) done in Nashville to see if the catheter running from the pump to the spine is leaking. If it is, it will be fixed. If not, the next step is to do another test which would be done by the doc that put the pump in (St. Louis). This would involve giving 2 doses (via spinal tap) of baclofen to Micah. One in the morning and one in the evening to see if we see a difference in his tone. This was done during the trial that he had before the pump was placed in him. There was a very big difference in his tone at that time, but nothing since then which is why the doc is wondering if it is functioning properly. If there is no progress after the spinal taps then we will know that Micah has built up a tolerance to the med and he will be weaned off and the pump removed. We will keep you informed as to the times of these tests.
   The rest of us are doing well and trying to get back into some sort of schedule around here. Thank you for praying for us & please know that we are praying for you also.

"Lord, be as the dew to me today, as You were to Israel, that I may flower like the lily" Hosea 14:5

   Much Love & Blessings,
Tina

February 20, 2010 11:30 PM

2010-02-21T01:00:00.004-06:00

Hello friends,
   We had some friends over last night and were sharing with them a lot of things about the last several months and while talking with them I felt that I needed to share a part of our conversation with you. This is stuff that has been in previous blogs, but I need to pull from the past and add some of the present so that you will get a picture of the situation and be encouraged as I was.
     Back in September, right before being discharged from the PCCU (on our way to the regular floor) at Vandy we had a care conference with all the Drs. and therapists there. What they told us basically was that what we saw in Micah then was what we were going to be stuck with and that it would not get better and would most likely get worse. At that point, Micah sometimes would make eye contact (but usually not), he made no purposeful movement, he showed absolutely no emotion except pain once in a while, you get the picture... The Drs. actually told us that we should not go to the in-patient re-hab as they would do nothing for him.
   Well, Micah's eyes miss nothing & he uses them to answer questions, he lifts his left leg to help every time we start to put on pants, socks, shoes, etc... and tries with the right, but it is harder for him to use, he will bump knuckles with his brothers, he laughs (at people, TV, jokes, etc...) smiles, cries, makes noise when he wants to get out of his room..... I would say that he has already exceeded the Vandy Drs. expectations for him! So for this, we thank the Lord because we know that God is not done with our son yet.

"being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ; " Philipians 1:6

God is not done with any of us yet, thank goodness! I'm glad to know that He is not going to leave me as I am, but is always leading me in a better way, raising me up to walk with Him and teaching me to know and do His will. God has a purpose for each of us, and He is constantly drawing us towards that purpose. Some things we are all called to do (love our brother & sisters, be a servant, etc...), but then we each have our own calling also and it is ours to fulfill and no one can do it for us. We each must be confident in the Lord that He will not leave us without help, but will strengthen and give us all that we need to fulfill His purpose for our lives. His work for you may not look or feel like anything you had in mind, but know this, He will complete His work in you dear one.

Blessings,

Tina

February 17, 2010 2:45 PM

2010-02-17T15:50:00.000-06:00

Hello friends,
   I pray that this blog finds each of you doing well. We are enjoying our last few days with Thomas' parents here. They will leave on Friday afternoon to go to PA to spend some time with their daughter and her family and we will miss them. We have been having some concentrated prayer time for the family before they leave.
   Micah has been doing well the last few days. We took him to meet his Dr. and a couple of therapists yesterday and I got the okay to start weaning him off of his med that helps with sleep. Last night he got half of his normal dose and slept wonderfully so we will continue this for a few days and then hopefully get him completely off of it. He is also on several meds to help move things through the intestines. We are praying that we can reduce them and eventually get him off of them. The reason for them is that his pump med is a muscle relaxer and it relaxes muscle. The St. Louis Dr. said that this problem would get better in time. We don't want to have him on any more medicine than is absolutely necessary so your prayers are appreciated.
The rest of us are doing well and the kids have been great help and entertainment with Micah. God has truly blessed me with these children, I can't imagine not having even one of them. God is changing all of us during this time and challenging us and it is our prayer that you also are being challenged and changed into more of His image through you prayer time with Him. Blessings to each of you.
   Still believing the promises past & present,
Tina

February 9, 2010 12:00 AM

2010-02-12T00:21:00.002-06:00

Hello friends,
   I don't remember the little boys' name, but the book was titled, " (Alexander, I think) and the Terrible, Horrible, No Good Very Bad Day", - this was our day today. Micah did not keep much of anything down today and I was an emotional basket case, the two do not go well together. It was a long, hard day and I'm glad it's over (well almost, Micah is not asleep yet). Kudos to my husband that came home a little early to help me out and of course the kids. Also many thanks to those friends that came or called with timely encouragement. We ended the day by watching the film "Faith Like Potatoes", if you haven't seen it you really should.

Feb. 11th 12:00 AM

   Well, the last two days have been much better than the previously mentioned one. We've all been calmer and Micah has been happier. I believe that he had some congestion that day and that is was preceded by a bad headache. I had noticed that he had not been as happy as before, but thought that maybe he was getting bored with the house and routine around him. It is so difficult to know, since we really don't have any consistent way to communicate yet. He has the last couple of days gotten better at using his eyes to answer us, we just have to know what to ask. Since he was using his eyes today, I would ask him to look at some specific thing or person to answer yes. When I asked if he had a headache his eyes didn't move. When I asked if he had a headache yesterday he immediately looked at the thing I asked him to look at. Pray for us that Micah will continue to use his eyes to talk to us and also that he will start to talk. He has gotten a lot more noisy since we brought him home and if he could start making noises consistently to communicate then words wouldn't be far away. Some of the nurses told me that when he didn't feel well he would say, "mom". Oh, what I would give to hear that myself! We keep praying and claiming the promises and words spoken over Micah from his birth. Thank you all for praying for us, we couldn't have made it this far without those prayers!
Blessings,
Tina

PS - I forgot, Micah lost yet another tooth yesterday : ( due to grinding. Not sure if it was a permanent one or not.

February 5, 2010 12 AM

2010-02-08T11:16:00.000-06:00

Hello friends,
   Well, I can't say we're doing great, but we're doing okay. We are not getting everything done with Micah that we need to, but we have been working through 5 months of clutter and rearranging rooms also. We're getting close to being done with the upstairs and then will move downstairs. Thanks for the prayers for Micah, he fell asleep last night and tonight before we ever took him to the room. Once asleep, there is not much that will wake him. We're slowly working his food schedule to something manageable for our lives which means not having to be up at the crack of dawn or up in the middle of the night. He did throw up this morning a little, but nothing the rest of the day so I'm praying that it will stay that way.
   A big thank you to all of you dear people that are bringing food, I honestly don't think I could have made it through the last few days if I had had to cook also! What a blessing!
   Micah is doing good and is really enjoying being home. Yesterday I think he laughed most of the day! At one point (or more) I had to make the kids leave him alone because they had him laughing so hard he had tears rolling down his face and I thought he needed a break just to breathe! The kids have been great with him and have been a good help for me also.

Feb. 8, 2010

Hello again. The last few days have gone well. There has been no emesis, Micah is sleeping good and we actually made it to church on Sunday! That was my first church service in 5 months outside of our family worship with Micah at the hospital. It was wonderful to get to see my family again! A lot of time was given over the weekend to training the kids in doing what they can to help with Micah. They can do more for him than make him laugh, which according to scripture, is great medicine! I believe that our biggest task now is to get into a routine that works with Micah's routine. He takes a lot of time and if we're not careful , nothing but taking care of him gets done. Please add this to your prayer list for us. Blessings to each of you!
Tina

A merry heart doeth good like a medicine: but a broken spirit drieth the bones. Prov. 17:22

February 4, 2010 8:30 AM

2010-02-04T09:24:00.000-06:00

Good morning friends,
   I can't begin to tell you how nice it was to wake up this morning in my own home and have a cup of tea in my kitchen. Our trip home was not uneventful, but we did ok. Right after leaving the hospital we were caught in traffic due to a wreck after a few miles (not even out of town) Micah threw up everything he had just been fed : ( Not an easy clean up job in a van, in a parking lot. We did what we could and traveled on. About an hour later it happened again though not as much. At this point we decided that he did not need to eat while in the car so we shut everything down and put a movie in for him to watch. The rest of the trip was uneventful.
   When we got home the kids had decorated the whole front porch and hung welcome home signs on every door! Getting Micah inside was a bit of a chore due to the very wet ground, but not too bad. Once inside I think he smiled almost constantly until we put him to bed. He wanted to be in bed, but he wanted his brothers to be in bed also and he cried until they did. This is something I would appreciate prayer for as today we are shifting the house around and Micah will be in a room alone. It's just not going to work any other way with all of his paraphernalia.
   Thomas and I stretched his legs out good before prayer time and when we let go he kept them stretched out for I think almost 30 minutes, that never happens. He slept well and is still sleeping now. I think that I will enjoy not having to leave my house today. The whole agenda for the day is organize, organize and then if we have time we will organize some more.
   May the Lord bless you all with a beautiful day (a day is made up of more than the weather during that 24 hr. period).
Blessings,
Tina

February 1, 2010 10 AM

2010-02-01T10:03:00.000-06:00

Hello friends,
   Only two days left! I'm getting ready to go spend some time with Micah, he has cooking and speech therapy together this morning. I got to spend quite a bit of time with him yesterday as I was here alone. While talking to Micah last night about how much God loves him he made a "g" sound which I've not heard him make before and so I took that he was trying to say God and agreed with him and he seemed completely satisfied that I understood him. That was the only sound he made last night. That's my story and I'm sticking to it. The last two days he was also helping me with putting his splints on by moving his legs. He has not done any of this since his surgery. I think he was also trying to get his foot over the side of the bed again the other day! As soon as the nurse put the side down he swung his foot straight to the edge of the bed. We're praying that being at home will only increase his healing and movement.
   My verse today was Ps. 37:5:

"Commit your way to the LORD, trust also in Him, and He shall bring it to pass."

Here is the lyrics to part of a song that has been very special to me the past few months. I don't think I've shared it with you, but if so, it's a good one to repeat. I know that there are many besides my family struggling right now, crying out for a loved one and this song voices those cries. If you want to see the whole song I have the artist's name at the bottom.

Hold My Heart
How long must I pray, must I pray to You?
How long must I wait, must I wait for You?
How long 'til I see Your face, see You shining through?
I'm on my knees, begging You to notice me.
I'm on my knees, Father will You turn to me?

One tear in the driving rain,
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breaking heart?
One life, that's all I am
Right now I can barely stand
If You're everything You say You are
Would You come close and hold my heart
              -Tenth Avenue North

Be blessed dear ones,
Tina

January 30, 2010 12:30 AM

2010-01-30T00:58:00.000-06:00

Hello friends,

Well, we had a good party today and Micah was very happy. The last two days he has been very happy, I think he knows he's going home. The hospital got him a couple of books, a very nice blanket (they call them "hugs") and a video MP3 player with a set of headphones. I was quite surprised. They do this for all of their patients that have been there at least 3 months. If for nothing else, this place has been a blessing to us in that we have learned a great deal from them on how to care for Micah. The patience that the therapists have with him never ceases to amaze me.

Thomas arrived safely this evening and will be headed out with the crew on Sunday. Then he will be headed back here on Tues. evening. I have quite a mix of emotions over the whole ordeal right now and am not quite sure I could put any of it into words, but I'll try. I'm very excited about going home, but sad about how we are going home. Sometimes I feel overwhelmed at how much more is going to have to be packed into one day and then there are days (self-induced, I think) when I am quite unfeeling about the whole situation. I feel like my feelings are swinging on a pendulum, back and forth, back and forth. The good part of that is that a pendulum always stops in the center and in that calm time I can hear my Father speaking to me.

A dear friend sent this song to me, I don't know the title or who sings it, but I wanted to share it with you anyway. Also, a verse from a another dear one. Two words on faith from different sources just a day or two apart. Jesus help us to have faith to keep believing...

You probably know this: The root meaning of "faith" (emunah) is "steadiness" (as in Ex. 17:12). God's still at work in Micah and in you. Hope to see you soon in Jackson.

I may not hold all the answers, but I know you're faithful God
I will wait... and believe for a miracle

I may not see through the darkness, but I hold Your hope in my heart
I will stand and believe for a miracle

I believe my God is stronger, God is greater
I believe His goodness will prevail

I believe His love and mercy go before me
He is my hope; I will not be moved

I will trust in You with all my heart, my everything

Nothing on Earth, nothing I know can separate me from Your love
I love you Lord and I confess my heart belongs to no one else

Blessings to you all,
Tina

January 27, 2010 8:30 PM

2010-01-27T20:24:00.000-06:00

Hello friends,
We went for the upper GI today and the results were normal, nothing wrong so we will proceed with the original plan which is to return home on Feb. 3rd. We are both excited to get home and sad that Micah has not progressed further than he is at present. For the time being he will need a great deal of care which will take a great deal of time. The Dr. feels that he will progress a bit more being with his siblings, but not as much as we believe he will. Once again, they have reached their limits and we are in the best place of all - the hands of the one who created us. Please pray for us during the transition. I will still try to keep you informed on Micah's progress at home if you would like me to.
Blessings,
Tina

January 20, 2010 10:30 PM

2010-01-26T00:11:00.001-06:00

Hello friends,
   Well, since the last post we have had some good and bad days. Thankfully, we are in the good ones now. This last week the Doc has gotten Micah off of the blood pressure that he was on, adjusted his pump more and started reducing the meds that help him sleep at night. I think all of that combined was too much at one time and his system didn't handle it well. Two days out of the weekend he just looked like he was stoned, no expressions whatsoever, that was difficult.
     His PT had been worried about his right leg, thinking that it had lost some of its range of motion, but on Tues. she told me she got it completely straight (first time since we've been here)!! He has also gotten more vocal lately. Up to this point, the only noise we have hear out of him has been when he is mad or upset and even then it wasn't every time. Any noise from him is a welcome noise. One of the kids had told me they couldn't remember what his voice sounded like anymore   : ( The last two nights have been good sleep nights for him so he was much happier and we have not had any emesis the last two days. He has had enough though, that he is going to be making another trip to St. Johns soon to have an upper GI to see if they can find a reason for it. I don't have a date for that yet, but they were hoping to do it this week.

     The rest of us are doing okay here, not great, but okay. The kids have been counting down the days to go home, I hope that the date doesn't change as they will be very disappointed. We are all missing home and friends terribly. By the way, "Girlfriends" thanks for that great message the other day, you cheered me up and made me cry all at the same time!

1-25-2010

     Sorry it's been so long, we have been busy and have had some good company. Micah's good days have continued and we will be having the upper GI on Wed. morning around 10:30 and we should have immediate results. If they find nothing wrong then we will be staying with the previously mentioned discharge date. We are all very much ready to be home.
     After Micah's pump surgery he had lost some of the movement in the arms that he was doing, but the last two days he seems to be trying to use them more again. He has been more relaxed lately also. The therapists have been working hard on getting the legs and arms fully straightened out when they work with him. When he is asleep he is more relaxed and we can stretch him out better. Today one of the nurses told us that the last time she had him that he was so relaxed in his sleep that they thought something was wrong with him and they checked all his vitals and called the Dr. to look at him also! The Dr. said nothing is wrong, this is beautiful!
     Outside of the total healing that I know you are all praying for (and I thank you for that), please pray about his head. We are trying hard to during the day and night at least prop it up where it is supposed to be. There is nothing at all wrong with the muscles, and he used to hold it up very well, but now it is usually on his right shoulder. Looks very uncomfortable! Also pray that his swallowing would be consistent. He chews things, but swallowing is a problem.
     Prayers for the rest of us are also welcome, lol. We are doing well and the kids have been great, but we are ready for the move. I have my days when I feel like I'm living in Ps. 38, but God always manages to pull me out and keep me going. I'm very thankful that He loves me even when I am unlovable!
Blessings,
Tina

January 16, 2010 12:30 AM

2010-01-16T01:11:00.000-06:00

Hello friends,
   I'm sorry I didn't get back on here when I said I would, I ended up making a short trip to IL and didn't have the computer with me. Anyway, the MRI results came back good, no swelling or bleeding anywhere. This is good, but though he didn't come right out and say it, I know they were looking for a reason as to why Micah has not responded to the medication as they thought he would. So, they were actually kind of hoping that they would find something there. As I said previously, I didn't believe they would find anything. So, this is the reason that we have a tentative discharge date, they've run out of options. They still believe that Micah will make more progress and that being at home with his family will prove to be good medicine for him.
     Where does this leave us? Right where we have always been, trusting God for a complete healing. We have known from the beginning that there was nothing any of the doctors could do, there is no magic pill for healing a brain.   So if we know this, then why are we here? I don't know if we'll ever know the full ramifications of our being here, but we do know that this is where God wanted us to be during this time of getting Micah stabilized. This has been a whirlwind for us that sometimes it seemed would never end, but "the end of all things is near" and soon we will go home.
   Everyday we pray and claim God's promises over Micah and bring to remembrance all of the things spoken over his life since before he was born. There are promises made for this child since before Thomas & I were married and we are claiming them and standing firm believing them. We still have our "moments" of sorrow and acting like whiney children, but that's okay, God didn't say to come to Him as a well-behaved child, just as a child.
   I'm sure there are some of you out there thinking that we need to quit getting our hopes up and just learn to accept the circumstances as they are. Well, I don't want to. I will always hope and pray for better for my child. If we cannot have hope for Micah to get any better then what is the point of praying. "Our hope is built on nothing less than Jesus blood and righteousness..." I serve a God that is not bound by circumstances and has proved Himself over and over again. We are actively praying that God will use this to change each and every life that has prayed for Micah or even just read a blog entry. "We want to see Jesus lifted high!"
Blessings,
Tina

January 12, 2010 10:50 PM

2010-01-12T22:54:00.000-06:00

Hello friends,
For all those of you on the other side of the world and the night owls here in the US, Micah will be having an MRI at 6:45 AM on the 13th. I will let you know what the results are when we get them. For those of you wondering what this is about you can look at the previous blog.
Blessings,
Tina

January 11, 2010 6:30 PM

2010-01-11T18:25:00.000-06:00

Hello friends,
   It has been a cold week for us, but today it warmed up a little. I don't remember how many times I heard, "It's really nice today". I even said it myself and the temp was around 25 with a "feel like" in the high teens! Not even warm enough to melt some of the snow we had. The kids will be wanting to wear shorts when we get home.
     Speaking of home, we got a tentative discharge date of Feb. 3rd today. So, possibly we will get to come back home, that would be nice after almost 5 months away. There are days when I feel like I will never again see my home or the people there that I miss so much, but the end is near. Wow, I just remembered that my New Years verse started out with those very words!

The end of all things is near. Therefore be clear minded and self-controlled so that you can pray. Above all, love each other deeply, because love covers over a multitude of sins. Offer hospitality to one another without grumbling. Each one should use whatever gift he has received to serve others, faithfully administering God's grace in its various forms.   I Peter 4:7-10

     We had a care conference today for Micah and talked about many things. There are so many things to consider with bringing Micah home and none of them any thing that we want to even think about.   The Dr. (no surprise to me) did not get the response to the pump that he was hoping for. There is some good from it: Micah is more relaxed, tone is better, vitals are better and he has been able to get off of some of his meds. We will be having another CT done this week just to make sure that there is nothing amiss that would keep Micah from having the progress that they expected. Honestly, I think they will find nothing, but we will wait and see.
     I don't know why we are having to go through all this or when it will all end, but I do know that there is a purpose. God has a purpose for Micah's life and this period of his life is going to be a huge part of that.
     I will blog again in a couple of days after the CT results come in. May the Good Lord bless you all richly, thank you for your prayers and cards!
Blessings,
Tina

January 5, 2010 10:30 PM

2010-01-05T22:33:00.006-06:00

Hello friends,
   I trust that all of you had a good Christmas and a Happy New Year. As Thomas said before, we had a good time with Micah and family here. We are doing well in our new residence and I now have my in-loves (Thomas' mother says it shouldn't be in-laws) with me. For those of you who don't know them, they worked in Nepal as missionaries/teachers for years. So I now am blessed with help in the school department.
     Thomas family has a tradition of every New Year drawing a verse for the year.   His parents will pray and choose more than enough verses for the family and then take turns drawing out the verses for each person and reading them. This year since they were with us we did all the drawing and sent copies to the rest of the family. I wanted to share Micah's with you.

   Micah: Ps.66:8-12

Praise our God, O peoples,
       let the sound of his praise be heard;
he has preserved our lives
       and kept our feet from slipping.
For you, O God, tested us;
       you refined us like silver.
You brought us into prison
       and laid burdens on our backs.
You let men ride over our heads;
       we went through fire and water,
       but you brought us to a place of abundance.

   Thomas & I both drew the verses that dealt with comforting others, loving others unconditionally and giving to them out of what God has given to us. It is a good tradition and
God always gets the right verse to the right person.
   Micah has been doing well this last week, sleeping good every night and having a very minimal amount of vomiting. His Dr. said that he feels that it is due to muscle tone being affected by the meds and it will get better. He has been much happier and has been smiling a great deal. Today I went for his therapy sessions and when I got there I had to laugh because Micah looked like a mummy all tied down to the incline/standing table! He had straps all over him! When the therapists saw me coming they started laughing too and told me that they hoped I would show up for this. Oddly enough, his body was almost completely straight and he was sound asleep. They said that this was the most relaxed they had ever seen him. When the took the strap off that was holding his head up, his head stayed up! It stayed up for 3 1/2 hours straight, hands down in his lap and him sound asleep! He missed speech therapy because we could not wake him up. It was so nice just to see his head up. Unfortunately he slept most of the day and it was due to his pump meds, but the Dr. wanted to let it go for the day and he believes that his body will adjust to the dose. The good news about this part is that he will most likely get to come completely off of another of the old meds that was being given for blood pressure. The less meds we're on the better I feel.
   I took both sets of grandparents up to see him this afternoon and once they had him up in his chair we were able to keep him awake for a little while. When the kids aren't with me the adults have to act like idiots or lower our standards to the level of 11 yr old boy humor (need I say more?) to get the kid to smile, but once he starts then they come easier. We have had a lot of fun with him lately.
   A couple of days ago I was praying and God gave me a verse out of Ps. 63.

"Because You have been my help, Therefore in

the shadow of Your wings I will rejoice." vs. 7

This was in my mind the rest of the day and what God spoke to me was this:
He is always there protecting us, watching over us. We go through nothing without Him. During those "seemingly" dark times we need to understand that we are not in darkness, but His shadow. What safer place could there be than this? Does it still seem dark? Yes. Is it still scary at times? Yes. But we must learn to recognize His presence and choose to not live in fear, but to rejoice in His protection over us. There are days when I feel like I am walking through a dark tunnel that never ends, and each day God strengthens me to keep taking another step and another and another... Every day we ask like a child and keep reminding God of the promises given long ago, we keep believing and we keep loving our Father who knew we were going to be here before the foundation of the world. If we can't trust our Father then we can trust no one.
Blessings to you all,
Tina

December 29th, 8:35pm

2009-12-29T20:36:00.001-06:00

Hello dear family and friends,
Sorry for the delay in posting. We have been busy. Yes I know - I am posting at a normal hour, instead of some funky time in the wee hours of the morning!
Micah is looking better each day. He has gotten over his bout of vomiting and fevers. We are still looking for more response from the new medication. His Baclofen dose (the medicine in the pump) is still being increased slowly to arrive at the right dosage. Since the medication is very strong, we have to be careful when increasing or decreasing dosage. It has to be done gradually. This is the most normal we have seen him looking as far as his appearance goes. On the whole he is more relaxed. Thanks to some dear friends in Jackson, I was able to borrow a vehicle to transport him on Christmas Day to the house. We had a really good time. My parents, brother and sister and their families came in to stay with us during Christmas week. We are so glad we had the large house, as there was room for everyone. Micah had a great time hanging out with his brothers and cousins. We just took him to the boys room in his chair and left them alone for a while. The boys were making goofy videos and he smiled and laughed pretty much the whole time they were doing that. In fact the effect of the visit carried over to the next day. He was really happy all of the next day. His disposition affects the therapy sessions greatly. As far as the therapy goes, we need to see more improvement with extensions of his arms and legs and swallowing. He seems to comprehend everything we are saying and recognized all his relatives. So that is a great blessing. We still do not have a consistent method to elicit responses from Micah. We continue to pray for his healing and every little thing he does is a great encouragement.
We moved out of the house on Monday Dec 28 and are settled in the hotel suite. Surprisingly we all fit! Really nice place. Complimentary breakfast and dinner during the week. Really helps us with regards to meals for 10 people! My parents are staying with us for the time being. I am in St. Louis for the rest of this week and will return to Jackson on Sunday Jan 3. We are hoping to move back to Jackson in the near future and continue with whatever Micah needs at home. Of course we pray every day for complete healing and that all this other stuff would be unnecessary. Until that happens we are dealing with what we have. We are more than likely looking at a change in residence as our current home is very inadequate to accommodate Micah in his current condition. At some point I may prevail on some of you construction type folks to help me during that process.
This much for now. Very cold and snow, on and off, in St. Louis.
Shalom
Thomas

December 22, 2009 12:30 AM

2009-12-23T00:59:00.000-06:00

Hello friends,

Thomas family just arrived a couple of hours ago so we are all still up having a great time. Even those that should be in bed are still going strong! Thomas visited with Micah this morning and I went for a while this evening. A few days ago they had a Christmas party at the hospital for all the kids. The local police dept. came sirens blaring and brought Santa with them and they had presents for all the kids. A good time was had by all and Micah got a very cool all terrain remote control vehicle. I took batteries up with me today and he and I played with the car. After I showed it to him he got the hang of it and got it going a few times and ran it into me once. It was a little tricky for him as he has only been pushing down on big buttons and this one has small buttons that have to be pushed forward or backwards. He wasn't smiling today, but was not sad either. Sometimes these days are harder when you see almost no emotion.

As far as his meds go he is still not up to his full dose of the new one but seems a little more relaxed in his arms today. There was no vomiting yesterday and only once this morning so maybe that is on its way out. We will not know for sure that Micah gets to come Christmas day until that day so please keep praying for that. Family gatherings are hard. Just tonight we were praying after everyone arrived safely, thanking God for us all being able to get together after so long, and I just wanted to cry because we weren't "all" there. What to do? We wait, we pray, we cry, we keep going..... There are days when I think I cannot bear to go on one more day and yet, God comforts me and gives me the strength to go on that one more day.

For those of you wondering, the hospital has worked out for us to stay in a very nice suite until mid Jan. if we are here that long. This option was here from the beginning, but leaving my other kids at a hotel all day did not seem wise to me so we have been very thankful for the use of this great house we have been in. I honestly don't know what we would have done without God's people reaching to love us. Thank you all so much.
May the Lord bless you and keep you,
Tina

December 21, 2009 11:30 AM

2009-12-21T11:59:00.000-06:00

Hello friends,
I'm sorry it's been so long, trying to get ready for Christmas. Micah has been up and down with getting used to new meds and getting rid of old meds. He has been having some bouts of fever and vomiting also. We're not sure what is causing that and all tests have come back normal. They even took him for some x-rays and imaging of the stomach area to make sure they were not missing anything. If he is still doing this on Christmas then he will not be able to come home with us for his visit. God directed me today to Luke 5:12+.

"While Jesus was in one of the towns, a man came along who was covered with leprosy. When he saw Jesus, he fell with his face to the ground and begged him, 'Lord, if you are willing, you can make me clean.'
Jesus reached out his hand and touched the man. 'I am willing,' he said. 'Be clean!' And immediately the leprosy left him."

This is a good prayer for all of us, not just Micah. We all have things that we need to be cleansed from and we all need Jesus to do that cleansing for us. I want to encourage each of you during this season to take time to let the Father cleanse you from all the worldliness that has come to be associated with Christmas. Strive to put Christ at the forefront of all that you do. May the Lord bless you and keep you all in the center of His will.
Love,
Tina

December 17, 2009 12 AM

2009-12-17T00:42:00.002-06:00

Hello again,
It's been a long day and I didn't get to spend much of it with Micah, but what time I was there was good. The surgeon came and said that everything looked good, no throwing up today, and several timely smiles. Micah was looking very relaxed when I got there (almost too relaxed). We went for a walk and took the book with us again and read another 2 chapters today. Today's reading had some things in it that any boy his age would find funny (no more explanation needed I hope). While reading those parts I would look up and every time Micah had a big smile on his face. It's so nice to see him finding humor in things! He also smiled when I told him I knew what Grandma got him for Christmas. It was a short, sweet visit. I pray with him before I leave for the evening and try to always remind him of how many people love him and are praying for him.
I may have put this song on here before, I'm not sure, but it is ever present in my heart lately. Almost every time I get in the car I hear it and it never fails to bring waves of emotions. So, hear it is again (maybe). If God has put something on your heart to do or to pray for, don't give up. Remind God of those things that He has spoken to you and of the promises given in His word. He tells us to come to Him as a child and if yours are like mine they are not bashful about saying, "Mom, you said......." It drives me nuts when they do that, but it doesn't drive our Father nuts, I guess if we're coming and telling Him what He said then He is happy to know that we have been listening to Him. Wow, I've never thought of it that way before......
Love you all, keep hoping
Tina

That's What Faith Can Do

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
chorus:

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

(chorus)
Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!
(chorus)
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

- Kutless

December 15, 2009 11:30 PM

2009-12-15T23:57:00.000-06:00

Hi friends,
   Well, the rush is on. Is everyone ready for Christmas? My kids keep reminding me how many days are left. Shopping here has been a whole new experience for me. Each exit between the house and the hospital is like its own little town which creates a whole lot of choices. I don't really like having too many because it is too hard to make a decision. Focus, focus, focus.....
   Micah had a good day today, busy, but good. I only saw him late in the afternoon and stayed for a few hours with him. He was very relaxed looking today and stayed that way the whole time I was there. He usually wants to be moving the whole time I'm there also and gets really agitated when we stop for a bit. Today, we sat and I talked to him for a while then read 2-3 chapters from a book that I had been reading to him. He was calm and focused the whole time. He is still not holding his head up, but is holding it more to the side now rather than down on his chest.
   The Dr. has him completely off of one of his previous meds and is down to a half dose on a second. He will be off of his post surgery pain meds ( which have possibly been the cause of some vomiting lately) in about 2-3 days also. The pump meds are up about halfway now. His surgeon is coming tomorrow to take a look at him.
   One thing I would like you to pray for is that Micah would not get depressed. I know that he understands what I say and that he gets frustrated when he can't get his body to do what he wants it to. Some times I feel like he gets down and I am encouraging him to keep trying and not give up. Sorry this is so short, but I think that all the latest news is here, it's late so I'm getting off.
Love you all!
Blessings,
Tina

December 14, 2009 10:00 AM

2009-12-14T10:24:00.001-06:00

Hello friends,
   12-12-09
   Thomas & I just got back from the hospital and we had a very good visit with Micah. He was very sad when I first walked up to him, but calmed down quickly and was happy. We took the computer with us and Skyped with the kids at the house which he really liked. He smiled a lot this evening. He also used his left thumb to open a present that someone brought him today. We started the paper tearing for him and got him to grip the corner and he pulled a little then realized that he was actually able to tear the paper and his whole expression changed. It was a beautiful sight to see for the parents. He continued to pull until he got all the paper off and was very proud of himself.
   We got an okay to take all of the kids inside for Sunday mornings so we will be able to have church together! It is way too cold here to be having church outside anymore. I think the most difficult part for Thomas & me is the balancing act of the kids. They are all important, they all have feelings and they all want to be with us. The kids have been great at the house, but I'm sure that they get tired of being there all the time. They have grown closer to each other during this time, which has been good to see and I just keep praying for God to give them an extra measure of grace during this time. I try to make sure to every week get the kids out and do something with them, but even that is hard. Every time we take them out we're thinking how much Micah would like what we're doing and how much we want him there with us.

12-14-09

"My hope is built on nothing less

than Jesus blood and righteousness.

I dare not trust the sweetest frame,

but wholly lean on Jesus name.

On Christ the Solid Rock I stand,

all other ground is sinking sand,

all other ground is sinking sand."

Christmas is almost upon us, it is bittersweet this year. We are going to get Micah for a few hours one day while some of Thomas family are here. Thomas himself will get to be here for a long time, which we're all very excited about! We had church with Micah yesterday and afterward took him outside for a short jaunt as it had gotten near 40 and he wanted to go out so badly. Josiah brought a handheld game with him and got it out for Micah to see, he really liked it and actually played a bit using the side of his hand. When the little guys got too close he used that same arm to push them back as he wanted to play, and was not letting them in!

We have seen the tongue make a few more appearances, but he does not have control of it yet (do any of us?). He is still not holding his head up either, he can, but doesn't. Most of the time it is practically laying on his right shoulder, looks painful. If we hold up his head and massage the spine (between shoulder blades) he will relax a bit and hold his head up for a bit.

We have had several ask us if we have noticed a difference in Micah since the surgery. We have a bit, but mainly it has been that he seems more relaxed. The Dr. is in the process of tweaking his dose right now and at the same time reducing other meds. He is completely off of one of the meds and another is now being reduced. The pump started at a dose of 150 (mcg, I think) and we are currently around 250. It can be increased minimally each day and with a kid like Micah the Dr. said that we can easily expect to go over 600. This is why he wanted at least 3 weeks after the pump placement to work with Micah.

The 26th is our "move out of the house" date so please be praying about that for us. We are not sure where we will be staying after that and honestly don't have time to worry about it. We have all of you praying for us and a God that loves us so why should we worry? We thank you for your prayers and support and are praying for you also.

Blessings,

Tina

December 11, 2009 8:30 AM

2009-12-11T20:30:00.000-06:00

Hello friends,
Micah was looking good today, and was up in his chair from 8:30 in the morning til around 6 this evening! I took three of the kids up to the hospital with me and he made a noise of greeting to them. He smiled at them several times and he even tried to push the mouse button on the computer to try to play a game. Yesterday I was with Micah during speech therapy and has graduated from getting stuff rubbed on his tongue to getting candy sprayed into his mouth. The therapist has a small device that she can record something like, "more please" with a big button on the other side to make it play. He did excellent yesterday with the device and when he quit pushing she recorded, "I"m done" and then he pushed it again. At one point, his room mate came in (he's 7) to see what Micah was doing so the therapist asked Micah to show him how it worked. Micah pushed the button and out came, "more please". Then the therapist gave him another squirt of candy. The little boy stood with his mouth & eyes wide open, completely astonished! He said, "how does it know what he wants to say?!" We had a good laugh over that one.
I'm keeping this short this evening as Thomas just got here, and we are going to watch a movie with the kids while eating some of those scrumptious cookies from the co-op ladies in Jackson, Thanks ladies!
Blessings to you all!
Tina

December 5, 2009 11:00 AM

2009-12-10T11:30:00.000-06:00

Hello friends,
Well, we got Micah settled back into Ranken and he looked so relieved to be there. I can't say yet that we have seen much difference in him yet. He is on his pain meds still and they make him pretty sleepy, but he is definitely looking much more relaxed. I was only with him a short while yesterday as the wind and temps here were pretty bad and I couldn't stay out long.
The Dr. has started weaning him off of his other meds, one will be gone tomorrow and the will take them away one at a time so that he will be very "clean" as the Dr. said. Sounds simple doesn't it. I was just thinking that it is also that simple with our Great Physician. We can take any problem to Him and say "Lord, I've done this", "Lord, I can't do this", "Lord, (fill in the blank)" and He will answer.

If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness.

I John 1:9

We may not always get the answer we want and we may have to wait at times, but when it comes to forgiving our sin, there is no waiting! Instantly done, instantly His. Never think that your sins are too bad to be forgiven.

   The therapists started him right back into the therapy routine like he had never left. All the nurses and aids were coming to "check out" their boy as soon as he got there, it was like a homecoming for him. They are really good to him there, I can't count how many times I've seen them hug/kiss/"I love you" Micah.
   The rest of us are doing okay. We put up a Christmas tree the other day and spent a couple of evenings stringing popcorn and cranberries. A good time was had by all. The little people have been making snowflakes and hanging them in the windows. Thomas' parents and a brother & his family got into the states yesterday and are currently in PA with a sister.
   I am going to see Micah now and will try to get on later and let you know how that visit goes. Know you are loved and once again thank you for your prayers.
Blessings,
Tina

Sunday, Dec 6th

2009-12-06T21:44:00.000-06:00

Dear family and friends,
It's been a while since I have posted. I have been letting Tina do most of it since she sees Micah more than I do. We had a fairly good, but long weekend. As you know by now Micah has been through a surgical procedure to install a pump in his body to administer medication. Let me give you a brief run -through as to why we are at this stage. Micah has been at Ranken-Jordan (rehab facility) for over 60 days now. During this time he has gone from the initial stage of being still and unresponsive to his current state of alertness and and movement of head, legs, arms, mouth and tongue. Every small increment has come with tremendous effort. This has involved several hours of therapy each day, playtime and interactions with the family each day and medication and of course lots of prayer and love.
So far all the medication Micah has been receiving has been administered generally - they are oral and go through his feeding tube. This means that he receives large amounts of medication which eventually trickle down to affect the parts that need it. The response time to the medication varies with each one. Some take effect within 30 mins and some over several hours and then there is a cumulative effect over a period of days. So you can see that it can be a slow process. He has basically maximized the potential of all the current medication. The surgery was done to administer a medication that is more aggressive and is at the end of the line as far as medications go. We did not want to cross this line as it meant a long term and more permanent resolution. But we are here. The surgery involved installing a pump under his abdominal skin on the right side. A tiny catheter is run subcutaneously from the pump to the small of the back. Here it is inserted into the cavity in the spinal column and run up to the neck (all inside the spinal cavity). The pump itself is round in shape, about 3 inches in diameter and just over 1/2 inch thick. It is like a small hockey puck. It has 6 months worth of a medication called Baclofen in it. It is programmed with a computer (using wi-fi) to administer very small doses directly to the spine. Different doses at different times of the day. This will have an immediate effect on his nerves. They will be tweaking his dose over the next few days to arrive at the right amount. Too much will make him too loose and floppy and too little will be ineffective. All the medication is given with the intent of getting his body loose enough to a point so that he can progress in his therapy. He has some big hurdles to cross, the main one right now being his ability to swallow normally. Anyway that's the clinical side of things (from a non-clinical person albeit!)
We are doing fairly well by the grace of God. We know that the healing and restructuring of his brain is solely in God's hands. Tina and I are both pretty sure that Micah can comprehend everything we are saying! It's a matter of communicating - both from his brain to his body and his brain to us! It has been particularly rough for me as it is hard to leave not only Micah but the rest of my family each week. I am discovering that the well of tears has no bottom! BUT! God's grace is proving sufficient for us. This matter of finding out the sufficiency of God's grace can only be discovered one way - through trials! Everything I have said about what I believe, even the smallest thing, is being put to the test. Do not utter idle words about what you believe and don't believe. Every thing you say will be put to the fire. So my dear ones, let me encourage you to keep your words few and your actions greater as you work out your walk with the Lord!
Finally, we continue to be grateful recipients of so many of your prayers, love and service. May the Lord, Jehovah Jireh be your provision too.
Grace and Peace to you in Jesus.
Thomas

December 5, 2009 11:00 PM

2009-12-05T22:51:00.000-06:00

Hello once again,
Thomas just told me that someone else looked at Micah's chest x-rays (which were not very clear) that they did not agree with the "fluid in the lungs" theory. They think that the x-rays were just unclear. The quality was bad because Micah had his arms clenched across his chest and someone was trying to hold them out and keep him covered while taking the pics. Maybe by tomorrow we'll know for sure who is right.
Blessings,
Tina

December 5, 2009 9:00 PM

2009-12-05T21:02:00.000-06:00

Hello again,
Micah is doing okay, but he has some fever which they believe is due to some fluid collecting in the lungs during surgery. Thomas is staying with him tonight and they will be moving him frequently to help alleviate this problem. Deep breathing & coughing will also help, but he is not taking real deep breaths and coughing hurts so please pray for him. He is a little puffy from surgery, but otherwise looks good and very alert in spite of the meds.
The other kids were real troopers today having to be in all day, but they did good and we didn't get any phone calls due to arguments or anything like that. Thomas and I are doing okay, but are both in the crying/complaining mode with the most frequent cry being something like, "Lord, how long.....?" or, "Lord, this is enough...." You get the picture. This is all for now I need to spend some time with the kids. Thank you all!
Blessings,
Tina

December 5, 2009 3:40 PM

2009-12-05T15:47:00.000-06:00

Hello friends,
The surgery is over, it all went well and we have just gotten back to Micah's room. He is awake, but is still a bit groggy. The Doc said that we won't see much difference until later this evening or tomorrow. He is looking good and watching our every move. I will update you more later, I just wanted you to know that the surgery was over.
Love you all, thanks for the prayers.
Tina

December 4, 2009 10:30 PM

2009-12-04T22:34:00.001-06:00

Hello friends,
   The trial went well today. I was surprised at how loose Micah's joints got. We were with him most of the day, but he slept most of the day, was up a little this evening and just went back to sleep again. Dad is staying with him tonight and tomorrow around 10 or 11 Micah will be headed to surgery. I think it's only supposed to last about an hour. Dr. Anderson will be doing the surgery so keep him and his team in your prayers. This surgery will place a small pump into Micah, just under the skin on the lower abdomen. A very small catheter will then be run around his side right to the spine.
   The docs ask, "Are you excited about tomorrow?" What kind of a question is that? No, I'm not excited, but this is where God has us and He knows what we can handle. He thinks we can handle a lot more than we do! My brother just called while I was writing this (from a live concert) to let me hear "I Will Praise You In The Storm", sigh. I love that song, but it's hard for me to make it through. We're still loving and believing, but we'll have to work harder on the praising part.
   For those of you that read the comments, and were not sure what the "Kotel Wall" is, here it is:

The Kotel
The Western Wall also called the Wailing wall, is the western retaining wall of the Temple Mount,
the one that was closest to the Holy of Holies when the Temple stood.

   Thanks so much Mitch for doing that. It truly amazes me how many are praying for Micah. I pray that God will build the faith of all of you through this and that He will bless you for praying for us and for our needs.
   A bit of good news, I just found out last night that we will get to be in this house for Christmas. We don't have to move out until the day after, yeah! After that, not sure yet, please keep that in your prayers.
   Another bit of news...some time back I had mentioned Micah's previous roommate Frank, well Frank has found his voice all of a sudden is talking like crazy and begging for McDonald's and Pepsi! PTL! We have been praying for him and his family so this was good to see.
Blessings to you all!
Tina

December 3, 2009 10:30 PM

2009-12-03T22:48:00.000-06:00

Hello friends,
Well, I was going to say that the last two days have not been the greatest for Micah, but when I get away from him and think about the days I see them differently. I'm always telling Micah that until he can talk we have to find a way to communicate with each other. And I believe that the last two days he has been trying his hardest to make me understand him. I also believe that all of the "unresponsiveness" that I think I have seen is due to him trying so hard. He has used his arm to push or hold to get my attention, he has started using the thumb of the left hand to grab small things, his face brightened every time I got a phone call because he wanted to listen too, he tried his hardest to make noise on the phone, he lets me know when he uncomfortable and when he wants in bed and he is always more relaxed when he can go outside. Those outside days are getting less and shorter, it's cold outside! So, when I look at these things I would have to say that the days have not been as bad as I originally thought.
Tomorrow morning is the trial, 7 a.m. Not sure how I feel about the whole thing. I want to have high hopes, but I also don't put much hope in the medical system. I know that I want Micah healed & continue to believe that he will be, I'm just wish I could see the whole picture. Why are we in St. Louis, why has God chosen this time, place, home, etc...? I have a lot of questions and not a lot of answers right now.
I was crying on the way home about the surgery and how I don't want to do this and telling God how much easier it would be if He would heal him or at least let us not do the surgery (funny how we're always telling God the best way to do things isn't it?). He said, "I know child, my son has scars too". I'd like to say I didn't say anything else to that, but I can't. It's good to know though that God can handle my drama, He can handle yours too. Don't even try to tell me you don't have any!!
I'll try to let you know how the trial goes ASAP after it is done.
Blessings dear ones,
Tina

December 1, 2009 10:30 PM

2009-12-01T22:32:00.001-06:00

Hello Friend,
December, wow! I feel like I am living in a bubble and the world is passing me by! Everything seems sooo far removed from where we were a few months ago. How to explain what I am feeling escapes me.
We are doing okay, the trial for the new med is scheduled on the 4th and the Dr. has said that if it goes well he wants to do the surgery the next day. I'm sad and happy all at the same time. Sometimes I just don't know what to feel at all. We will be at St. John's Mercy hospital for the trial and procedure (if the trial goes well) and will stay until the following Mon. or Tues. after which we will return to Ranken Jordan for a minimum of 3 weeks. If we return home then it will be because God has healed Micah or the med did nothing for Micah except relax him (believe me, relaxed would be good). If Micah starts doing more than relaxing then the Dr. wants to keep him as long as possible (that means as long as insurance permits)for therapy. I'm not sure how long that would be, but we will probably need another place to stay after Christmas as they are trying to sell this house and they do have someone very interested.
Micah had a different speech therapist filling in today and she felt that he answered (not verbally) several questions for her. She took him to a dry erase board and would write things on it then ask him a question. He answered by pointing to the answer with his foot! She wants me to try with him tomorrow to see if he does it again. Some of the things he told her today were that
1. He understood her
2. He couldn't talk
3. It frustrated him that he couldn't talk
4. He felt trapped in his body
5. His name
6. His school grade
I can't remember the other things, but I will try to do this with him tomorrow. For those of you that like names when you pray, Micah's Dr. is Dr. Evra and the one that will do the surgery & trial is Dr. Anderson.
Thank you so much for sticking with us through this and praying for us. This is the word God gave me for Micah:


'Who of you is left who saw this house in its former glory? How does it look to you now? Does it not seem to you like nothing?  But now be strong, O Zerubbabel,' declares the LORD. 'Be strong, O Joshua son of Jehozadak, the high priest. Be strong, all you people of the land,' declares the LORD, 'and work. For I am with you,' declares the LORD Almighty.  'This is what I covenanted with you when you came out of Egypt. And my Spirit remains among you. Do not fear.'
  "This is what the LORD Almighty says: 'In a little while I will once more shake the heavens and the earth, the sea and the dry land.  I will shake all nations, and the desired of all nations will come, and I will fill this house with glory,' says the LORD Almighty.  'The silver is mine and the gold is mine,' declares the LORD Almighty.  'The glory of this present house will be greater than the glory of the former house,' says the LORD Almighty. 'And in this place I will grant peace,' declares the LORD Almighty."

Haggai 2:3-9

May the Lord bless you and keep you!

Tina

November 27 10:30 PM

2009-11-27T22:17:00.000-06:00

Hello friends,
I hope that everyone had a wonderful Thanksgiving! We had a good time here with most of my family coming to visit and talking with most of Thomas family via the Skype camera. Our last company left this morning. Thomas got here Tuesday evening and will be here till Sunday, yeah!! We've enjoyed having him around for so many days, I just hope that Micah doesn't get upset when he leaves. We decided to not bring Micah here with so many people in the house and it turned out to be a good decision as he did not sleep the night before. He slept most of the day on Thanksgiving, 17 hours straight!
Today was a good day for him, we took all the kids up to see him late afternoon and even though the sun was going down he did not want to go in until it got very cold outside.
December 4th is the date of the trial for the new medicine. We will be going down the road to St. John's Mercy Hospital and the trial is at 7:30 AM. The trial will last 6 hours and if it goes well then Micah will be scheduled for another surgery as this medicine would be given via a pump. I'm not excited about that part of it, but God is in control and He was not surprised by this. I'm quite certain that if this is not a part of His plan for Micah then it will not happen. Also, if we have the surgery, we just found out that the Dr. will want to observe Micah for 3 more weeks! If his surgery were to be scheduled immediately after the trial, that would push us to the beginning of January. I was really hoping that we were going to be home before that : ( Please be praying for us that all will go well and that we will keep trusting and not worrying or doubting.
Most of my kids will be going to my parents again this week, one will be with Thomas and I will be here with Micah so pray for our safety during the travel times.
I'm so thankful for all of you out there that are praying for us, we are praying the Father's blessings on you all everyday. We do not take for granted all the wonderful extended family that God has blessed us with. I'm thankful that God is walking with us through the dark tunnel that we are in right now and I'm looking forward to walking "through" that tunnel with Him. God does not take us to a hard place and leave us, though at times it may feel that way. He takes our hand and encourages all along the way and I pray that I can pass that encouragement along to you. As He gives to us, we must give to you. This is true for each of you also, our trials are not just for our own sakes, they are to build up the body of Christ. God has given us each something to share so let's not be stingy, share.
Love you all,
Tina

November 24 11:30 PM

2009-11-24T23:55:00.002-06:00

Hello friends,
I'm sorry I've gotten behind on my blogging. I had a big distraction over the weekend in the form of a surprise visit from a friend! I was a very good weekend. Since the last blog Micah has only had one restless evening which makes a big difference in how he responds to everything. That "tiny member" the tongue is still giving him trouble, but he is doing a little better with it. The speech therapist tries to get him to swallow something every time she meets with him. Usually he will only swallow a few bites out of several given to him. With the problem of differentiating between muscle groups this starts with first getting the mouth open, then getting it closed, next moving the tongue around to get the food where it needs to be then finally swallowing. We do this all without a second thought, but Micah, at times, will break out in a sweat (sometimes sweating through his shirt) trying to do this. Today, Micah was given 6 bites of yogurt and he swallowed all 6 of them!! I really wish that I could accurately describe to you how much effort he puts into everything he does, it's astounding to me at times. Also, the patience with which the Therapists will wait on him! I am quite sure that therapists are a totally different species than I've ever met before. So many times I want to rush and help Micah or do for him and they just wait and see every little move he makes, they see the struggle he is putting forth when I don't even think he is moving. They are also very good at being cheerleaders for every little thing he does, these people are truly a blessing to watch.
Last night I went to the hospital to make sure that Micah got to bed peacefully and on time as the night before had been the restless one. When I was praying with him God just broke my heart over his voice, we have no consistent way to know what he wants or what is hurting etc... Today, after therapy was over I was talking to Micah about his voice. He has been making more sound and I was trying to encourage him to try to use it more. I had him watching my mouth and showing him how "hi" was such an easy word as it doesn't involve much movement etc... I told him that even if he couldn't say it properly that he could try making the noise when people come and they would understand that he was greeting them.   Around 7:30 this evening I went to the hospital with the older 3 kids and had completely forgotten about our talk. He was very relaxed when we walked into the room where his brothers were already sitting and then got very (what I thought was) agitated to the point of breaking out in a sweat! All the sudden he makes this loud noise and then was completely relaxed again. It was just a noise, but both of the boys knew that he had just greeted them! He tried again when his sister walked in, but was getting so worked up that we told him it was okay and that he didn't have to do it again.
He has also been using his left arm as a defense. He will push your arm away when you're holding his head up or (like tonight) push the nurse away when she is trying to give him his medicine! I had a hard time not laughing!
Sadly, we will most likely not have him at the house for Thanksgiving Day, but it may be better for him. We are going to have quite a few kids running around the house and I think that it may be a bit overwhelming for him. Too much of people or noise or movement is hard for him to handle right now. We can all go to see him in shifts that day and maybe sneak in some pumpkin pie (or whipped cream)!
We are doing well, Thomas is here from today til Sunday so we are all very happy about that. Keep praying for that tongue as it still causes problems, also the muscle tightness. He is getting some better at relaxing, but not as much as he should be by now. Oh, I almost forgot, he bit the inside of his mouth yesterday and it got infected! This morning when I got there he looked like someone had socked him in the jaw. He is on an antibiotic for that and it was down some this evening.
Thank you all for all of your prayers, we covet them (I think it's okay to covet in this case : ). Just in case tomorrow is crazy, have a wonderful Thanksgiving and enjoy your time together with your loved ones. Each of you has something to be thankful for so don't forget to thank the one that created you and gave you life!
Much love & blessings,
Tina

November 19 9:40 AM

2009-11-19T09:43:00.000-06:00

Hello friends,
I have had a better yesterday, thank you for your prayers. Micah also had a good day, I think he has enjoyed having mom all to himself. What I ask you to be praying for is that Micah would be able to differentiate between muscles or muscle groups. There is a lot of confusion for him in this area and God is not the author of confusion. What happens is when he tries to stick out his tongue or pick up his head etc... that he has to move many other things at the same time. If I were to hold his legs still and ask him to stick out his tongue he would not be as successful in getting his tongue out past his teeth (which he did yesterday, first time!!). So please be praying for this confusion to be gone and replace with the peace of Jesus.
Micah has also been making more sound the last few days. We've all almost forgotten what his voice sounds like. I know that several times he was trying to say something, but just couldn't get the tongue to cooperate with him. "The tongue is a little member..." need I say more about that?

If we could get our tongues to cooperate with our hearts imagine what could be done. So many wonderful things are in my heart that never come across my lips, sad. I'm sure that I'm not the only one with that problem. Then there are also those with the opposite problem, they have too much crossing their lips. Lord help us all to use our tongues to glorify you and bring the rest of the body along with us. A closed mouth and an open heart are just as dangerous as an open mouth and a closed heart. Neither one will convey the love of the Father.
"Lord empty me of me so I can be filled with You!"
-don't know (if you do, please tell me)
Blessings,
Tina

November 17 10:30 PM

2009-11-17T22:45:00.000-06:00

Hello friends,
Last night Thomas took some kids with him to Jackson and I took the others to my parents so that I could have some good time with Micah this week. Micah had a good night and a good day, I on the other hand had a very hard day. My family is in 3 different states and it is so hard. I want nothing more than to be together again in our home. I drove back to St. Louis this afternoon alone. I haven't had any alone time lately so it was good for me. Yes, I cried almost the whole way, but it has been good to release some emotions that have been bottled up. I played praise music the whole way and let God speak to me.
I got home this evening and had a song waiting for me. I've put the link below, it's 5 minutes long and worth taking the time to listen to. Thanks for sharing Melbelle I'm clinging to this though I feel so weak.

http://www.youtube.com/watch?v=YsXMiysZfNQ

May the Lord bless you all richly,
Tina

November 14 1:30 PM

2009-11-14T13:32:00.002-06:00

Hi friends,

(11-12-09)
I just got back from Micah's therapy session and wanted to let you know that he used his right arm four times today to push a button that activated a car! I had seen him use that arm a couple of times, but that was the first time that any of the therapists had seen him use it purposefully. I am praying for God to increase his movement greatly over the next few days because the Dr. is not seeing as much movement as expected from the injections. On Wed. of next week another Dr. will be coming to evaluate Micah for use of a pump. It is a pump that would have to be put inside of Micah and it would deliver meds straight to the spinal chord and would not affect the brain. Micah's Dr. believes that he would benefit greatly from this device (which is totally reversible), but I just don't want him to have to go through another surgery and have more meds added to his regimen. Please be praying about this with us, and thank you ahead of time for those prayers.
The rest of Micah's day was good also, I took the kids to visit in the afternoon when it was warmer so we could be outside. We went on the swing and for a walk around the garden area. Micah likes the walks because that's the time that the kids run with him!

(11-14-09)
Yesterday was an okay day for Micah as he was up and down through the night, but did good for his therapist even thought he was sleepy. God blessed us with another beautiful day so we went up and played outside with him and took him on his run down the ramp that always makes him smile.
I've had a bit of an emotional struggle lately, being with Micah everyday and trying to hold on to what I know the Lord has spoken to me. I'm sure some of you have felt the same way or maybe are now. We know that it is hard sometimes, keep holding on and surround yourself with others that can believe with you and hold you up.
One thing I wanted to let all you know is that we have heard from more than 1 person that they didn't want to bother us with their problems with all that we have going on. Please bother us, we love you and want to be praying for you also. If God puts us on your heart during a hard time, call or write. We want to be one of those holding you up before the Father just as more people than I know are holding us up. I want to leave you with a song that came on the radio just as I was typing this and struggling.
Love all of you,
Tina

What Faith Can Do Lyrics

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise
-- Kutless

November 11 10:30 AM

2009-11-11T10:44:00.000-06:00

Hi friends,
Yesterday was not a very good day for Micah, no sleep, fever, etc... He made it through his therapy sessions, but did not have a good time at all. I stayed with him for several hours, prayed with him and shared the scriptures God gave me for him. He did calm down a bit before I left and fell asleep. He woke up once, but slept through the night his temp coming down all the while. This morning when I talked to the nurse she said that he was up in his chair smiling at everybody! He didn't smile at all yesterday. I'm headed out to see him in just a bit and will let you know how the day goes for him.
The Bible says that a merry heart doeth good like a medicine, so I'm always glad to see Micah smiling. Now, so that the rest of you can have a little "medicine" today I want to share a story with you. I talked to a friend yesterday who has been keeping up with the blog. Her 4 yr. old wanted to know who that boy was and why he was on their computer. Her mother told her that she had a friend with a boy that was in the hospital and they were praying for him to get better. That night while they were praying her 4 yr. old said,"...and I pray that mommy's boyfriend will get better..."!
Be careful what you say to your children! Have a laugh with a friend today it will do both of your hearts good.
Blessings to you all,
Tina

November 9 10:30 PM

2009-11-09T23:27:00.001-06:00

Hello dear friends,
Sorry to keep you all waiting, the birthday visit went very good! Micah was happy to see everyone and even got to get on the Skype camera and see his grandparents in India. They had not seen him and had been anxiously waiting and even blew them a kiss (minus the hand motion). It was good, but short and we are looking forward to the time when we get to take him home for good. Micah has not been sleeping well again and I think a lot of it has been due to the issue of "regularity" which they have been working on. Last night they decided to start giving him something to help him sleep for a while so that he can get into a routine. He slept very well last night and had a great day today. He was happy and alert when I took the kids to see him. I was trying to find a way to get him to stick that tongue out and I may have an answer. I only tried it once so far, but I took a sucker with me (we're not really supposed to put anything in his mouth) and put it just outside the teeth. Once he got the flavor, he wanted the sucker! Eventually, with some visual aids his tongue did touch the sucker several times. Poor kid, I don't know what he's thinking when several of us are standing around sticking out our tongues and then cheering when we see his, lol!
Micah used his eyes several times to answer questions for me today, looking at certain people or things as a yes or no to a question. He had not been holding his head up, and thought the OT said that we may see more of this as he tries to use his arms more, it just looks so uncomfortable. Even when he is just sitting, his chin will literally be on his chest. We would pull his head up and hold it putting pressure on the shoulders to get him to relax the neck. I noticed there is also a knot on his neck and when I would massage that spot he would relax and lay his head back. I asked him if his neck hurt to look at a certain person and he turned his head and looked right at her. After a couple of minutes I asked again just to be sure and he looked again. I think he needs an adjustment, so if anyone knows of a good chiropractor in St. Louis please let us know. He smiled at me quite a lot after this, I don't know if he was just happy or happy that I understood him. I'm sure he gets frustrated trying to communicate with his eyes only.
One other thing, his right arm is doing much better, more relaxed and he is even trying to use it a little, praise God for that! That arm has been a real point of concern for me for some time now. Now if we can get that tongue moving....
That is a lesson for me all in itself. Our tongues can easily get us into trouble due to too much use, lol. I sometimes, and I'm sure I'm not alone, get into trouble from lack of use! God speaks to us all the time, we don't always listen, but when we do He is speaking. Sometimes it is only for our own growth, but sometimes it is something to be shared and when we don't share..... TROUBLE. I've heard it said that when you share, even the smallest kindness that it can cause a ripple effect (like a rock dropped into water), this is also true when we aren't kind or don't share what God has given to us for others. It always affects more than just one, ripples. We get fearful and don't want to speak and so the word given to us rots in our mouths and becomes a stench. I use this picture because I see firsthand with Micah what happens to his mouth when it is not used as it was made to be. The only thing that seems to make a difference in the smell is when he actually swallows something, when it is used properly.
We all have something we can share, we don't have to preach a sermon. Sometimes the word may not make sense to you, well, if it's not for you don't analyze it just share. It will make sense to the one that needs it. Other times it may be as simple as letting someone know that you love them, that God loves them or that you have been praying for them. Be the breath of life, not death.

A word fitly spoken is like apples of gold in a setting of silver. Proverbs 25:11

A man has joy by the answer of his mouth,

And a word spoken in due season, how good it is! Proverbs 15:23

“ The Lord GOD has given me
   The tongue of the learned,
   That I should know how to speak
   A word in season to him who is weary.
   He awakens me morning by morning,
   He awakens my ear
   To hear as the learned....." Isaiah 50:4

We love you all are so touched by stories that we hear about how God has touched someone through this struggle that we are going through and it makes it somewhat easier for us to know that Micah's life is being used for God's glory. We still hurt, we still cry, we still want this to be over, but knowing that God is working helps us to keep going.

Blessings abundant,

Tina

November 6 11:30 AM

2009-11-06T11:07:00.000-06:00

Hi friends,
I posted last night about Micah's progress, but wanted to put this up so that you all can be praying for his visit to the house tomorrow. When I left last night he was doing well and was very tired. When I called this morning they said he did not sleep all night and was having a horrible morning and they were going to get him back to bed right after his PT. Please pray this lack of sleep doesn't snowball into a really bad visit tomorrow. Thank you.
Blessings,
Tina

November 5 11:30 PM

2009-11-06T00:28:00.000-06:00

Hello friends,
I just wanted to give a short update on the day as it is much too late for a long one! I think I mentioned before that Micah has been getting agitated because he is more alert to the fact that he can not get his body to do what he wants it to do. The same held true today, he had a good day and is moving, moving all the time. I, and his nurses, think he is trying to get out of his bed! He was in a bed that was like a tent because he was moving so much, but he was not sleeping well in that so we changed the beds. The current bed lowers almost all the way down to the floor and has pad around it and on the floor on both sides. I asked today, "Can we just put some pads on the floor and let him sleep there?" The nurse said, " Knowing him, if we did that he would be trying to scoot out the door!" The Dr. is happy with the movement that he is seeing as it is all new and things that he is doing "purposefully", not just spasms he cannot control. He believes that Micah is moving into the next stage of recovery and the agitation we see is a part of that stage.
The next two days will be busy ones for him so please keep him in your prayers. Tomorrow I will visit with the kids in the morning, he will have therapy, grandparents will visit, Dad will visit. Then the next day will be the birthday party here at the house and Micah will get to come be here with us for a short time. The hospital will transport him to and from the house.
Something that I may not have mentioned before is that I had been noticing for some time now that Micah was making less noise and then the last 1-2 weeks it was rare to hear anything unless he was crying. Previously he would make noise when we talked to him or when Thomas talked to him on the phone. I don't know why he got quiet, but the last two days he has started making a few noises again. One of the kids just told me yesterday, "Mom, I don't remember what Micah's voice sounds like." I'm struck at how quickly we can forget a voice if we don't hear it for a while which, as every other lesson we learn as moms, translates into the spiritual realm. If I am not careful to speak with my Father on a regular basis how easy will it be for me to forget His voice. Maybe I need to be more quiet like Micah and learn to listen more closely.
Love you all,
Tina

November 4 11:30 PM

2009-11-05T00:17:00.000-06:00

Hi friends,
The last two days though not the "smiliest" for Micah have been pretty good. He has been moving his arms more each day it seems. Yesterday they got a different chair for him and so he is staying in a better position when he is up. I took the kids for some outside time in the afternoon and they had fun with him, & he with them. He loves the fast rides they take him for! The OT came out while we were there and worked with his arms a bit and with his swallowing. He did manage to get down a couple of spoons of chocolate pudding. One thing that I had noticed with him lately was that he was not holding up his head as well as he was doing previously, in fact he hardly holds it up at all. The OT told me that we would most likely see that for a while as he is working so hard on moving his arms that he is only able to do that one thing. She said it is very much like watching a small child try to use scissors, they can only cut if their tongue is sticking out. Micah can only move his arms if he keeps his head down.

Today I went to his therapy session and he did okay, but was a little distracted and agitated. He moved a lot and tolerated the different positions well. He got his leg splints today, very cool camo design, and seemed to tolerate them well also. Tomorrow he will have them on quite a bit and if he tolerates them then he will start using them during his standing sessions. He was also molded for his arm/hand splints today and should have them soon. He will not have to wear them all the time, but will have a schedule so that his arms & hands can get used to being opened up more. When I was alone with Micah today I talked to him a great deal about what the Lord had told us about him and reminded him of things that had been prayed over him for years. I reminded him of God's love for him, something that we all need to be reminded of on a regular basis. It's really hard to leave him, but he seems to understand. I tell him each day that I have to go and take care of the other kids as they don't have all the nice nurses around them to help, sometimes he will cry for a bit, but he will usually settle down before I go.
Before I left today, I was bent over his bed talking to him and he reached out his hand straight towards my mouth staring the whole time to get his arm where he wanted it to go. He almost got it straight out and I kissed his hand and he did that several more times. Then he brought the hand down lower and did the same thing. His brothers had been trying to get him to bump knuckles with him so I did that with him a few times also and told him that he needed to do that with them tomorrow. We'll see if he remembers that. I prayed with him & we specifically prayed for his sleep. I just talked to his nurse a while ago and she said that he stayed up until a little after 11 then he went to sleep so he may be down for the night. Praise God! He has been sleeping better, but not as good as he could be.
As for prayer, the tongue and the tone are the main ones right now. If I haven't explained the tone someone please let me know and I will. I'm too tired to write any more this evening.
I love you all and thank God for each of you every day and ask for His blessing in your lives.
Remind someone today how much God loves them.
Blessings,
Tina

November 2 11:30 AM

2009-11-02T20:11:00.000-06:00

Hello friends,
Wow, I can't believe that it is November already! The last few days have been busy ones for Micah. This is the third time I've tried to do this post. Since the last time I blogged Micah had not been sleeping well at night and would be tired during the days wanting to sleep in his chair. Saturday we got his bed changed (he had been in one that was more like a tent because he moved so much) and that afternoon he fell asleep around 3 pm and slept 16 hours straight!! We went to see him on Sunday and he was happy, but not as happy as usual. After we left he fell asleep again and slept from 5- 8 PM which means he stayed up again last night. So, we are working on getting him straightened out again.
Today we had a care conference today for Micah with a rep from each branch of his care and therapy at the hospital, it went very well. His PT/OT are happy with his progress and think that when his tone gets better that they will see him do a lot more. He has been doing well with his sitting and standing. During therapy sessions they will have various things that they attach a large red button to for Micah to press usually with his head and it will turn on whatever they attach it to. Today, he actually used a hand to push the button and once held it down and watched what it was working. Sometimes they hook the button up to kitchen appliances so that all the kids can help with cooking. Today they made lemon squares and Micah got to push the button that made one of the appliances run.
Speech is still working on his swallowing which is consistently inconsistent. He does though follow commands well. Micah has lost about 20 lbs. since the beginning of Sept., but they feel that he has stabilized as they have gotten his food/bowels tweaked where everything is working as it should be, so hopefully he will not lose more.
His main Dr. said today that this week they are going to wean him off of one of his meds as he doesn't need it anymore, yeah! And they decided to let Micah come to the house this week for a few hours as we have 3 birthdays this weekend (I'm thinking gift cards would be a great gift : ) Another bit of great news is that they have decided that my kids can go visit Micah!! They can all go to visit outside anytime and if I call ahead I can take 2 kids with me to one of the conf. rooms or meditation room for up to 2 hrs. each day! We went and got them immediately after the meeting and took them out to see him, he was very happy to see them. We couldn't stay out to long as the sun was going down and it was getting chilly, but we enjoyed the time we had. The reason they chose to do this was that they saw such a difference in Micah when his siblings were around him that they felt it was necessary for him.
God never ceases to amaze me! We were so disappointed that Micah couldn't see them and He has worked it out perfectly.
Micah did get his injections on Friday late afternoon and we will see in the next few days if they will help or not. I think they already have as Micah is stretching out his left arm more and the right has been more relaxed. Much to my delight, yesterday while I was talking to him he smiled at me then reached his arm over to me and put it on my hand and left it for quite a while. After this he would look at my shoulder then try to move his hand over and over. Micah is the kid that comes to hug me several times a day so I believe he was trying to get his hand on my shoulder and just couldn't get it up there. He was trying to hug me, that's my story and I'm sticking to it! By the way he tried again today : )
Thomas just left and is headed back to Jackson, those of you that read this tonight please keep him in your prayers, I'm sure the long drives back and forth are tiring. We are doing well despite missing all of our friends & church family, the kids are learning more each day to love & respect one another. My parents have also been frequent visitors, which has been good for all of us.
If we have learned nothing else through this time, we have learned that even when we are enduring hardship God is good. He has not forsaken us, He has not forgotten us. Each day is new & God is there with us holding us up and helping us to walk, speaking life and hope to our hearts. Each day He gives us opportunity to praise His name before others and the choice is ours to make, will we lift His name or hide in shame?
Sing until the whole world hears!
Blessings,
Tina

October 28 8:45 PM

2009-10-28T21:39:00.001-05:00

Hello friends,
Today was a bit of a disappointing day for all of us. The hospital we're at is a small specialty hospital and they place great importance on patients socializing, spending as little time as necessary in their beds. Families are a big part of this which is why we all moved here so that we could all be a part of the process. Most of Micah's improvements have come in response to his siblings being with him. That being said H1N1 has forced even our hospital to take drastic measures to keep their patients safe. Starting tomorrow no one under 18 is allowed to enter the building unless they are there for therapy. I was very sad as were the kids and Thomas. I totally understand and had even thought myself that this was the only way they had to contain things, but it was still quite a blow.

We will talk to one of the doctors about the possibility of Micah still coming to the house on outings which would make things better for the kids and I have already decided that I will take the kids right to his bedroom window so he can see them. Thankfully all the bedrooms are on the ground floor! Please pray that this does not have an adverse affect on Micah as he really perks up when his siblings are around.

Micah had a good day today, with his therapy etc... As far as his sight and hearing goes he doesn't miss a thing he sees everybody and hears everything, which can be quite a distraction during therapy sessions! He is supposed to be getting some injections on the weekend (I think) to help relax the shoulder and elbow muscles so that he will be able to do more with them and will most likely get some splints on his elbows shortly after that to keep his joints opened up.

We're praying everyday for God to intervene and believe that he will, but there are days when the process seems more than we can bear. At those times, I start telling God what a mistake He has made and remind Him about what His Word says about not putting more on us than we can bear. I never seem to win those arguments, but I always feel comforted and loved at the end of them. Goodnight to you all.
Many blessings,
Tina

October 27 8:45 PM

2009-10-27T21:40:00.000-05:00

Hello friends,
It has been a rainy several days here in St Louis. Abigail said that if she didn't know better she would think that she were in England due to the grey skies and rain. It's a good thing we like rainy days as we have to get out in it every day and God has been faithful to protect us as we travel back and forth each day. Yesterday due to various wrecks my 7-8 mile trip took me 30 minutes : (
Yesterday Micah was rather tired while I visited him due to waking up at 4 in the morning, but today he was wide awake and very happy to see everyone. Grandma & Grandpa were also there with us today. Micah, several times today stretched his left arm to touch several of us and when he saw how pleased we were, smiled and did it again when we asked him too! When he got tired of that Samuel laid his hand on Micah's lap and asked him to "give me 5" and he then did that for a while.

We still have not seen his tongue make an appearance, but a couple of times today he did suck up what was coming out of his mouth and swallow it! Sorry, that was gross, but it's progress also. It went into the Doc's notes.

We found out that the hospital is glad for us to take Micah on outings. As long as they know ahead of time they will transport him wherever we want to go. One big plus for this is that he can come to the house for the upcoming birthday parties! We are very excited about that!

As for the rest of us we are doing alright, but hate being apart. We do have some very down times which are not always portrayed on the blog as we usually don't feel like blogging during those times, but are keeping our eyes focused on God. One thing I have found is that no matter how deep of a "funk" I get into, if I can start singing praise to God He is faithful to pull me out. Sometimes getting myself to sing takes longer than others, but eventually I get there. He is the Far Out Friend that Frees Me From Funk and gives that joy down deep in my heart. Thank you all for hanging with us and encouraging and praying for us. We have been praying God's richest blessings for all of you!
Love you all,
Tina

October 24 11:30 AM

2009-10-24T12:10:00.000-05:00

Good morning friends,
The last two days have been a little busier for me as I had some travelling to do and had only the 3 youngest ones with me, but we are all together again. Micah is doing well and the last couple of days has been trying to do more with his left arm. He reaches out a bit with it like he wants to do something with it, but after it goes so far then his tone will tighten preventing him from doing more. His OT told me that she was going to speak to his doctor about giving him a med that will help with the tone issue. She feels that since he is trying that there is probably a lot more he could do if the muscles could stay relaxed. Yesterday morning I was with him in therapy and they were working on sitting up. He did very good and his OT said that while he was relaxed she was giving him very little support! He is also holding his head up very well and practically turned it around backwards to look at his grandparents.
Thomas is with Micah right now and he just told me that they have a little petting zoo there right now and he is taking him out to see, that should be fun.
Still no sign of the tongue yet, but he is trying at least.
We are doing well here, though we do miss everyone. I just realized last weekend that I have not been to church since Sept. 6th! That's quite a while for someone that grew up going every time the doors were open. I have been trying to understand how people without a church family function in times of crisis, I honestly don't know. You all rock!! I would not function as well without the encouraging notes and kindnesses shown to us. We have truly seen the "body" (not just our church) at work during these past weeks and it has brought us to tears again and again. It hasn't mattered what the sign out front said, only that we have the same Father. Isn't this as it should be? We should always be ready to lend a hand to our family members. None of my siblings live with me, not even in the same state, but I would help them out in a heart beat if I knew that they needed it. The same is true spiritually....God has a lot of children, we don't all live/worship in the same house, but we still have the same Father and should treat each other with love and respect. A church with all the same type of people in it (i.e. all arms or feet or eyes) is not going to be a church that functions well. We tend to argue or disagree with others because of our differences, but that doesn't mean we should go find a group that thinks just like us. We NEED to have all the parts of the body in each church.
Right now, a lot of churches function like Micah. Sometimes a few things work, sometimes nothing works, sometimes we know what to do but cannot get it done. Micah has a perfectly functioning body as far as the physical body goes, but his problem is that his brain cannot make sense of everything right now. So even if we get all of our "body" parts together we still need a good head to get the whole thing working properly. Someone to make sense of it all and help each of the various parts understand that they can & must work together with all the other parts because "All these are empowered by one and the same Spirit". If we cannot do this, then the body will just be all over the place. Arms trying to be legs, legs trying to be eyes etc... We all have a part to play and we can't play it well if we trying to tell everyone else how to play there part. I guess that this can be your sermon if you don't get to go to church tomorrow : ) Blessings to each of you, I wish I could meet every one of you!
Play your part,
Tina

PS For further reading on this check out I Cor. 7:17, 20-24, 12 - all of it

October 21 7 PM

2009-10-21T19:59:00.002-05:00

Hi friends,
I pray that you are all doing well and have been able to avoid the swine flu. We are settled back in the house and it is so good to be settled somewhere even if we are not all together. I think that is probably the hardest thing for us right now, being split up. Don't ever take time with your family for granted.
Micah is doing well. He has slept well the last two nights which always makes for a better day! Yesterday we spent several hours with him as he was in a grand mood and it was beautiful outside. He smiled and laughed, the kids took him for walks (and runs!) around the garden area. He was very relaxed while we were there and ended up being out with us most of the day. Today was good also, but not as good as yesterday. He was a little irritable today but still managed to have fun with the kids. His arms are becoming more relaxed and he is not so bad about drawing them up every time someone touches him. The left arm will go almost straight and the right is still a bit tighter, but better than it was. I have not yet heard if/when the doctor is thinking of giving the injection to help them further relax.
We have been praying much for him while we're gone as we don't know who will be with him or what show they may park him in front of. One funny thing he did the other day.... His Nurse Practitioner had brought him out of his room so that he could be around people, she took him to one of the TV areas and started flipping through channels trying to find something he would like. In the midst of her search someone came and asked her a question which caused a pause in the search. She said that Micah screamed at her and when she turned around Jerry Springer was on and he was mad! She apologized to him and let him know that she didn't find that appropriate for anyone to watch!
He is more and more frequently stretching his left arm out when he does not like what you are doing to him, purposeful movement. What we have been trying to get him to do on a regular basis is to stick his tongue out, yes you read that right! We are encouraging our son to stick his tongue out at us. It is all a part of the process of getting him to use all his facial muscles with the hope that he will start swallowing "purposefully" not just as a reaction. If he can swallow then he may get to eat some food via the mouth. So along with the arms please start praying for Micah to stick out his tongue and to swallow. Sounds like a strange prayer request doesn't it!
We are praying every day for a miracle, for Micah to get up and walk, but are also taking time to rejoice in the "little things". It is so easy for us to look over the little things in life, isn't it? I don't know why, they are just as much a miracle as the big things. I believe that if we cannot marvel at the "little things" that God does for us each day that we will never truly be able to fully appreciate the "big things". Think about our bodies, made up of so many "little, amazing things", if those little things don't work they can cause big problems.
I see how much effort it takes for Micah to stretch his arm out or make a noise, how much more would be involved in picking something up or talking. Honestly, if I went to see Micah tomorrow and he said, "Hi Mom!" I think I might quite possibly pass out! I was reading in Ephesians today that God has predestined us, according to His will.... to be to the praise of His glory. Even at this stage in our lives when we want to whine and complain (yes we do) we are to bring honor to the Creator. No matter who we are or what we are going through we were all created to do one thing, to praise the One that created us. To bring honor to His name is our ultimate high calling, don't miss it. Thank God for a "little thing" today.
Blessings to you all,
Tina

October 20th, 1:15am

2009-10-20T01:14:00.001-05:00

Dear Friends and Family,
Sorry for the long pause on the blog. It's been kind of like that with our life the last few weeks. I have just arrived at the house in Jackson after a couple of days with the family. We just had to pause while we were making all these transitions. Everyone is in St. Louis and more or less settled in the house. I have made two trips on the weekends from Jackson so far. It's a long but easy drive. The time factor varies depending on the heaviness of the foot, but it is about 4 hours or so!
Micah is doing well. Since I see him only on the weekends now, I tend to notice the differences more so than Tina. This weekend is the most alert I have seen him. His face looked more like his old self and he has lost a little bit of weight. Micah is making progress in very small amounts. It may not seem like much, but the fact that he actually notices everything and everyone around him is a huge step. His eyes can pretty much track anything he wants to. He is beginning to hold his head up more and more and also turning it from one side to the other to look at things. He is on some new medications that help to increase neural activity so his brain can maximize the benefits of therapy. On one hand we want to reduce the medication that is given for the thalamic storming and on the other we want to add medication that helps with recovery. So a good bit of his alertness is due to the new medications. In time he will be able on his own. It is a delicate dance. None of the medications are meant to be used long term. They are just being given to help his brain learn to reprocess functions. He still has thalamic storming but nothing like before. Both the storming and posturing are much decreased compared to even 3 weeks ago. He is sleeping well for the most part. I will try to give you a brief description of what goes on with his schedule day to day.
Physical Therapy (about 1hr)- this is mostly stretching and flexing his knees, hips, ankles, elbows, shoulder etc to retain flexibility and muscle tone. They also stand him up with the aid of a standing table. He is laid flat on the table and it is slowly raised up till he is standing on his feet. Today he was up to 60 degrees of inclination. His knees have to be strapped in since he is unable to lock his knees, but he is able to take his body weight.
Occupational Therapy (about 1hr) - This is geared toward getting him to do things and respond to commands etc. A lot of the time the PT and OT are done together since they overlap.
Speech Therapy (about 1hr) - This involves trying to get him to swallow, stick his tongue out, stimulation of his lips with ice, stimulation on the tongue with flavors.
In addition to this, another group takes him to a group session where they use cooking to stimulate the brain. They will get the kid's favorite recipes and cook it for them. Depending on their ability, the children help with the activities. Micah's job today was to try to push a big red button that makes a motorized scoop put flour in the pan.
As you can see they keep him busy! These sessions are split up, so some are in the morning and some in the afternoon. After all this he is quite tired. We try to get some or all of his siblings to spend a couple of hours with him every day. Tina is trying to adjust her schedule so she can be there during the therapy sessions. He does much better when we are around.

Today is 40 days since Micah left our home for the hospital. We don't know what the Lord's timetable is for Micah's recovery. We pray constantly for speedy and full healing. We are so blessed with all the small steps of recovery. We are so grateful for the all the things the Lord has done for us during this difficult time. In big things and in small things He has provided for us abundantly. So many of you have blessed us, so much so, that is impossible to thank you adequately with mere words. May the Lord bless you all for the kindness you have shown to us. It is quite difficult for me to leave the rest of my family and come back to Jackson. My drive time is mostly filled with weeping and/or praising. In all these things God has not abandoned us. He has made us strong and able to handle the difficulties that have come our way. In many ways I feel privileged that He has trusted us with this suffering. It is easy to dishonor the Lord in the time of our sufferings. But we consider it an honor that He trusted us to honor Him with this difficult season in our life. I will share more about this later. This is a very long post for me! Good night or morning or whatever time it is where you are!
Grace and Peace to you,
Thomas

Ocotber 11 11:30 PM

2009-10-12T00:07:00.000-05:00

Hello friends,
It has been a good and almost normal weekend for us. It was nice to get to be together as a family again even if we had to go to the hospital to do it. Micah has had a good last couple of days. Since the decrease in meds I think that he has done a little more posturing (mild), but will most likely adjust to that in the next few days. He is not saying anything yet, but has started mimicking some of the faces we make and has started holding his head up pretty good. A couple of weeks ago that was not possible at all. When we got to RJ today the speech therapist was working on his swallowing reflex with him, he wasn't doing much for her. When she was done we took him to the meditation room and had church with him. We had communion and Thomas gave him a cracker crumb and put drops of juice into his mouth, none of that came back out, it was swallowed! Also during that time he reached out one of his arms (he has done nothing with his arms yet) halfway to his sister then pulled it back when she touched him.
When we were done singing/praying we took him outside for a bit of sunshine. He watched the kids playing and we took off his headrest and made him work his neck muscles, he did really good! Later when one of the kids was standing by him a bee started flying around and he followed it the whole time, his eyes didn't leave the bee until it flew away! These may sound like small things, but they are wonderful! The therapists are very pleased with his progress.

Yesterday when we took him outside one of the little boys wanted to push Micah so dad let him. He took off running! When Thomas caught & stopped them Micah had a big smile on his face!
This next week is the week that we have to be out of the house for a few days so I will be taking the kids to my parents on Tuesday evening and then I will be going back and forth some so be praying for us. Micah may have one day where I don't get to see him, not sure yet. Also, not sure how much I will be able to get on the blog. Thomas is headed back to Jackson tomorrow after a meeting with the doctors and others tomorrow morning.

The song, Amazing Grace, by Todd Agnew has taken on new meaning this week with all the rain we had! It poured here and I have felt that God has poured out His grace on us just the same. We pray everyday for Micah to be healed completely and are still able to be excited about the small things we see each day. We know that all of the small things add up to bigger things. Swallowing and making faces and opening the mouth are little things, but Micah is relearning to use muscles that he doesn't know how to use anymore. When he learns to use those then eating and talking will be in sight. Each day we thank God for the little things and give them to Him to work His wonders with because we know that God can do anything with nothing at all. A friend told me that she was talking with someone about Micah and that person told her that if there really were a God, that little boy would not be lying in the hospital like that! I can see how that could be a tempting place to go, but she is so wrong. What satan meant for evil, God will use for good. God will not let this be for nothing, of that I am sure. We still miss our boy and long for the day when we here his voice again, but we also thank God that he is with us and that He is working for our good every day, just as He is yours.
We love you all and covet your prayers!
Blessings,
Tina

October 9 10:40 PM

2009-10-09T23:02:00.000-05:00

Hi friends,
Today has been a good day for us as we are all 9 of us in the same town for a few days after a month of being apart!! Micah had a pretty good day, not too happy with the therapists, but very happy when I showed up with a couple of kids with me. We had a good time talking to him, trying to get him to mimic faces that we were making (he tried) and arm wrestling (a cover up for stretching out his arm muscles)! Later this evening Thomas & I went back to see him and pray with him before going to bed, he was a bit fussy, but was smiling before we left. His doctor and nurse practitioner are very happy with his progress and have said that the family involvement is a big part of that. I'm so thankful that God has made a way for us to be able to be a part of this, there are many here who are not able to have family around them due to distance or work.

I've had this song in my head for some time now upon waking this morning it was there again and most of the day. This is one that I frequently play for Micah also. I figured that since I couldn't get it out of my head that I would share it with you. This song has helped me through a great many teary days so it is my prayer that it will speak to you and help each of you through whatever difficulties that you may be going through.

How far is too far for You
How hard is too hard for You
How much is too much for You great God

There is nothing, no,
There is nothing You can't do

There is no wilderness,
No desert place, no sickness
There is no sinking ship,
No history, no weakness
That You can't save me from
That You can't save me from

How high is too high for You
How low is too low for You
How can I say thanks to You great God

There is nothing, no,
There is nothing You can't do

There is no wilderness,
No desert place, no sickness
There is no sinking ship,
No history, no weakness
That You can't save me from
That You can't save me from

When I can't find strength
I'm needing to get up
I'm not outside Your reach
You rescue me with love

There is no wilderness,
No desert place, no sickness
There is no sinking ship,
No history, no weakness

There is no wilderness,
No desert place, no sickness
There is no sinking ship,
No history, no weakness
That You can't save me from
That You can't save me from
- Rush of Fools

I must admit that I feel very much removed from life as we knew it and though we are going through a great struggle right now and sometimes it feels as though the world has stopped, it hasn't, life goes on all around us. There are so many people struggling in this world, you don't have to look far to find them, but it is very easy to ignore them. We're trying, as should each of you, to keep our hearts open and sensitive to the Spirit. He speaks everyday to us if we will take the time to listen, time is a very precious commodity. Use yours everyday to let people know that you love them and that God loves them.

We love you all,

T-N-T

October 8 9:00 PM

2009-10-08T21:27:00.000-05:00

Hi Friends,
Sorry it has been a while since I have been on here as I forgot to take the computer to the hospital one day and didn't have internet connections at the house until this afternoon. So, the kids are all with me now and we have spent the day not doing school, but settling everyone into the house and playing or reading. We are all doing well and are enjoying being together again after such a long time. Yesterday I actually cooked something, I haven't cooked in a month! We have had so much rain here the last couple of days that if the creek behind the house were wider I think we could have gone whitewater rafting! Thomas will be coming up again this weekend and then we can all be together for a few days again, we're very happy about that!
This afternoon I took one of the kids with me to visit with Micah for some time and had a very good visit. He slept well again last night and did very good with all of the various therapists that he meets with on a daily basis. I can't remember if I already told you about the med reduction the other day so forgive me if this is a repeat. He is currently on 4 different meds regularly, 2 of them he has been on from the beginning. 2 days ago one of them was reduced from 4 times daily to 3 times daily because his BP has been regulating itself very well. Today when I came they had reduced the other med also for the same reason again. A third med they have reduced to every other day so Micah is improving every day, praise God! The doctor has also noted that his posturing has calmed quite a bit and he says that this means his brain is starting to calm down.
The last two days have been a bit of an adjustment for both me and Micah as I am not a part of his wallpaper anymore. That being said, he was happy to see me today, but before he smiled, he squinched his face up and braced himself for kisses! He knew they were coming, it was quite funny.
God has proven himself faithful over and over so much so that it's become really difficult for me to worry. Sometimes I feel guilty that I don't feel so badly about what is going on. This must sound horrible, but I don't know how else to explain how I feel. I have cried more lately over God's grace and provision for us than I have over my child. I know that I should not worry, I know that God provides for all our needs, I know that God loves us, but His provision has so overwhelmed us that, well I don't know what to say or do. There is a Twila Paris song from some years ago that talks about when we grow up in the faith you would think that we would be used to the things that God does, but I never get used to what You do. Just when I even star to worry the least bit about Micah or the others, something else happens that takes my breath away and pulls me back to the Father that loves me so much and knows how I feel. He just keeps proving Himself over and over again, His grace is simply amazing.
I've been praying for all of you that God would bless each of you for being such a blessing to us, we love you dear ones.
Blessings,
Tina

October 6 2:00 PM

2009-10-06T16:27:00.000-05:00

Hello friends,
When I got to RJ this morning I got to Micah's room and he was gone. I went to the nurses station and asked our nurses assistant where to find my boy she said, " Oh, we lost him." Most of our nurses have this same sense of humor, which is a good thing for us. When I found him one of the PHRS (activities people) had saved him from being parked in a chair in front of the Barney show. I thanked her profusely as Micah can't stand to watch Barney and then we went for a stroll around the building stopping to look at anything that caught his attention. Most of it was caught by Sammy, a golden retriever that was here with one of the volunteers. Sammy came to see Micah and slobbered all over his hands which he liked a lot! Micah has been very happy today, smiling at everyone that comes to the room. He just finished his lunch and had his OT here, we are waiting on the ST to come and then we will go for another walk, possibly outside if it doesn't rain again.
We bought him a St. Louis Blues shirt since we're here and found out that he might get to meet some of their players while we're here.
Tomorrow we are supposed to get to start doing therapy in the gym here so that should be great fun for Micah as they have all sorts of neat things around here. I will have to get back to you as Micah is just about ready to get back in his chair.

4 PM
We did not get to get back into the chair for long as Micah's blood pressure was low so he didn't get his meds at his regular time as they both will affect the BP. He had a little posturing, but that has calmed down. The good news with this ordeal was that his BP is leveling out good and they are reducing one of his meds because of that, yeah! The less meds we have the better it is in my book. Right now Micah is getting his hair cut by the charge nurse who is also a beautician, then he will be headed to the whirlpool tub. Clipped, lathered & lotioned then he'll be lookin' good! Sometime tomorrow his brothers and sisters will be coming to see him, I think he will be very happy as he looks at the picture of them all the time.
Micah slept through the night again last night which, I think, is one of the main reasons that he has been so happy the last two days. They are getting ready to change his food and then start increasing the daytime feeds and decreasing the night time so that he will be on a regular eating schedule. Thus far he has adjusted well to all the changes they have made and we keep praying for a miracle while taking care pf the daily needs. Gotta go, getting ready for the bath. God keeps providing for every need we've had, He is too good.
Blessings,
Tina

October 5 1:00 PM

2009-10-05T13:16:00.000-05:00

Hello friends,
Well, Micah slept from 4:30 pm yesterday until this morning very soundly. That was his first good nights rest in I don't know how long. When we got here this morning he was looking quite handsome and very rested and alert, also a little like a jack-o-lantern due to the lack of teeth. As he doesn't have a chair yet that we can wheel him around in we rolled his whole bed out into the open area today where some of the therapists were doing a test checking for his responses to touch, smell, tickle, pain, command, eye tracking and light. This is a test that they will frequently repeat. He has done everything, to some degree, on the test, but hasn't yet done all of them at one time. After that we rolled him over by the windows to get some sunshine and see the outdoors then we parked him in front of a big aquarium for a while and let him watch the fish swimming around.

Mr. T is getting read to head back to Jackson to see his kiddos before they move to St. Louis with me. God is too good, Micah just got smiley right before time for his daddy to leave. It's still hard for him to leave but at least he will get to go with smiles. Love to all of you and many, many blessings.
Tina

October 4th, 7:20pm

2009-10-04T19:43:00.000-05:00

Hello everyone,
Today has been a quiet day. After a few hours of restlessness in the morning Micah has finally decided to sleep. This is first proper sleep he has had in a few days. The last two nights he has pretty much been awake. It seems he still does not have his nights and days straight. We went out to get a few items because he had fallen asleep. He was still asleep on our return a couple of hours later. So we are heading to the house a little early. Tomorrow morning will be the first full meeting with all the re-hab team. Over the next few days they will try to develop a plan of action. We are hoping to move the rest of the family up this way the latter part of the week. I will be working in Jackson during the week and travelling to St.Louis on the weekends. The Lord has some reason for us to be here and we are trying really hard to listen to the prompting of the Holy Spirit. Thank you again for your continued encouragement and support through this difficult time. If you want to send cards to Micah you can do so to this address

Micah Varughese
Ranken-Jordan
11365 Dorsett Road
Maryland Heights, MO 63043

Shalom
Thomas

October 3 4:45 PM

2009-10-03T17:27:00.000-05:00

Hello friends,
Well, today has been a very quiet day for us. As Thomas mentioned last night I slept at a friends house (1st real bed in 3wks) and I think I slept almost 10 hours! Thank you B&K for the B&B! We spent some time with Micah & various therapists and looking around the facilities. Hopefully during the next few days I can sort of get a handle on how things work so that I can work out some sort of schedule with school etc...
I have said several times that God is good and I was soooo wrong in saying that. What I have learned is that God is too good. Though this has been a horrible thing to go through with Micah and emotions have gone wild at times, we have not had to think much about the day to day stuff. At each step of the journey God has provided over and over again.
Today we met the person that offered us a house to stay in. We almost cried right there in front of her. Here's a list:
-huge house
- good neighborhood
-10-15 minute drive from Micah
-fully furnished
-no rent
-we're trying to pay for the utilities
-lawn is taken care of
-exercise macine
-jacuzzi if we want to mess with it
-washer/dryer
-a table our whole family will easily fit around
-backyard with a creek
-loaner van until I get mine here
-shopping all within 5 minutes from house
-games, ping pong
-etc...
quotes:
-please make yourself at home
-please, please, please use the stuff in the pantry, fridge & freezer so I don't have to take it to my
house

After all this, she felt bad that we would have to be out of the house for approx. 5 days, can you believe that. Who else but God could work out something like this? We are completely bumfuzzled!

Micah is starting to calm down a bit, getting used to a new place, people & more noise. They will slowly start integrating him into the social activities here as they don't want to overwhelm him with people, but also don't want him to be recluse sitting in his bed all day. Gotta get off now as we're going to see if we can sit him in the window seat with us for a while.
Love to all of you!
Tina

Oct 3, 12:10 am

2009-10-03T00:11:00.000-05:00

Hello everyone,
It's been a long day today. I left home in Jackson at 7am to Nashville and headed for St. Louis from Vanderbilt about 10:45am. 5hrs on the road brought us to Ranken-Jordan (Pediatric Specialty Hospital) in St. Louis. The ride was uneventful (thank the Lord!). Micah has been admitted here and we spent the first couple of hours talking to the doctors. The hospital is the coolest looking building inside and out. The doctors were really good to talk to. Micah shares a pod with 3 other people. His bed is near a window as we requested and he seems to like looking out the window. Once they get a routine going for him he will spend very little time in the room except to rest. I think there are less than 30 patients in residence, so he will be getting lots of attention from the doctors, therapists and nurses. As you know by now, his time with the rest of the family Thursday afternoon was really great. It was good to see those dimples again! The plan here is to slow down the thalamic storms and provide the right environment for his brain to relearn how to function again. There is no magic bullet here. Only the Lord knows how Micah will progress. Of course our prayer is that he gets up and says he wants to go home. So as he starts this new phase we expect the Lord to continue working miracles.
One other item of prayer and concern has been answered today. We had been looking for a place for us to live for the short term. Through some contacts with family and friends who came to see us in Nashville we were provided with a fully furnished house, rent-free, to use for our time here! It is only about 15-20 mins away. Praise the Lord, He has prepared for our needs in advance! We received the word about this just as we were pulling out of Vandy this morning. So again the Good Shepherd leads us to still waters and makes us lie down in green pastures. Praise His name! Our family been so blessed by so many people through prayer, words of encouragement and gifts of service and in kind. May the Lord bless you richly for your kindness to us during this difficult time. I am spending the night with Micah so he will feel better in the new place. He seems to have settled down a little better after I came back from dinner and talked to him. I am very tired and will try to get some shut-eye. Maybe he will let me sleep!
Shalom,
Thomas

October 2 9:40 AM

2009-10-02T09:50:00.000-05:00

Hi everyone, I just wanted to take a minute to say we're loading up the car, Micah is bathed, dressed and looking good. Thus far everything is on schedule so we should be heading out shortly so unless we run into some WiFi along the route this will be it for the day.
Blessings,
Tina

May the Lord bless you and keep you, May the Lord make His Face to shine upon you and give you peace.....

October 1 10:00 pm

2009-10-01T22:01:00.001-05:00

You all are so encouraging to me, thanks for all the comments. Today was a good day for the whole family, my parents included. Micah is definitely headed to St. Louis tomorrow ( unless he listens to me in which case we would be breaking out of the joint in the middle of the night and hitching a ride to Jackson : ) the caravan leaves Vandy at 10 AM. Thomas and I will follow the ambulance, get Micah checked in and then try to decide what we're going to do about the rest of the family For those of you who do not know me as well we have 6 other children that are home schooled so we are trying to find a place that would be suitable for us, nothing extravagant, just a space to keep our stuff for a while. Not knowing how long we will be there we are also trying to find a place where we would not be invading on others, not everyone can handle that much noise for long amounts of time.
Enough of that on to the good stuff. I got to see all my kids today!!! It was a good time for all, even Micah. I have thought several times that he is bored with all of these women around all the time trying to get him to look at them or squeeze their hand, etc... I was right. Gretta, one of the PT's had gotten him into a chair before the kids came did her therapy and left him there so he would be better able to see his siblings. They all came in and gathered around him on the floor and started talking. When he finally got his eyes and head headed in the right direction you would not believe the reaction! He was sooo happy I almost cried, he could not stop smiling at them, obviously he recognizes them. Since they were so loud we decided to go down the hall to the "quiet room". We were down there for quite a while talking and hugging etc... Samuel, being Samuel decided to act goofy in front of Micah and he started smiling at him and didn't stop there, but went on to laugh at that point we were all laughing so hard that we couldn't stop then Micah was laughing at us laughing at him, it was great! What a blessing that was. After that Micah was tired so we took him back to the room and to bed then we took the others out to the Mellow Mushroom for some of th best pizza and root beer that I've ever had in my life. They had a good time and we were all sad when it was time to go, but hopefully this time we won't be apart quite so long.
I don't know when I will get to post next as we will be on the road tomorrow and I'm not sure where we are sleeping tomorrow evening, but I will be back on here the first chance I get. I love you all and am so thankful to you for all the encouraging words. Keep praying!
Blessings,
Tina

October 1 10:40 AM

2009-10-01T11:09:00.000-05:00

Wow, I cannot believe that Oct. is already here, time flies even when you're not having fun. I don't have a lot of news this morning. Micah has been taken off of the antibiotics as his blood cultures being clear was finalized and the surgeon has cleared him for take off. So, now we wait again to see when exactly we will leave. It could be as early as tomorrow or maybe not until Monday, I have to wait to see what the case manager says and she is off today. If today, Thomas will be taking off tomorrow to make the 5 hr. trek to St. Louis. Micah will be going via ambulance and one of can ride with him.
Thomas is bringing the kids (all of them) up here to see me (I'm very excited) & Micah today so be praying that that goes well as Matthew & Daniel have not yet seen Micah and it may be difficult for them to understand why their big brother cannot talk to them or play with them.
We still don't know where we will be staying in St. Louis but are trusting God to provide the perfect solution for that. We will be going to Ranken Jordan, I don't have the address with me but I'm sure if you need it you can find it on their web-site or I can send it to you once we get there. So depending on what happens the next day or so I will probably have a day where I may not be able to give you an update.

Well, I just got interrupted by a phone call and if the hospital has a bed open for Micah we will be headed to St. Louis by 10 AM tomorrow morning, wow that was fast and our heads are whirling! Okay I have to get off of here and think for a minute and start getting all my stuff together. I'll try to get back on here this evening and let you know how things transpire today.
Love you all, thanks for sticking with us through this.
Blessings,
Tina

September 30 9:20 PM

2009-09-30T21:39:00.000-05:00

Hello friends,
Here I am once again at bedtime trying to fill you in. We had a pretty peaceful day today, except for the fact that Micah did not get time in his favorite chair today as it had been taken to another floor. He was a bit upset about that. He did though get to go to the therapy room which was full of all sorts of interesting things. I found the room much more interesting than Micah though all he wanted to do was sleep because he had just had his medication and had just eaten - not the best time to do PT. He is still on an antibiotic, but the preliminary blood results have come back negative for any infection. He will stay on this until the final results are in. This is a carry over from the Sunday night fiasco we had when they were checking everything they could to make sure there were no infections anywhere.
Here is a small miracle for you - we were told that the docs wanted to take Micah for some x-rays on his neck at 3 PM today and they actually showed up at 3 PM!!!! They were doing some flex & extension x-rays to check the part where he had the swelling and I believe that we still had four weeks left with the C-collar (neck brace) on, but by 5:30 ish it he had been cleared and the collar removed! Thank God, that collar has been a great source of irritation for me from the time it was put on.

I wanted to share with you a response that I got to the green olive tree last evening, I went to bed on this one so I'm hoping that it will be a good one for you to go to bed on tonight...

Just this thought: When God works slowly, he is also working grandly. Olive trees grow slowly, live hundreds of years, still bearing fruit.

Goodnight to each of you and God bless you all richly!
I'll try to not keep you all waiting so long tomorrow.
Much love,
Tina

September 29 6:30 PM

2009-09-29T18:51:00.000-05:00

Hi friends,
Sorry I've kept everyone waiting all day. I was in an ill humor this morning and then had guests today so I'm just now getting to this. I must admit to you, that this morning I told God, "God, I'm tired of blessing everyone with this blog, I just want my boy back!" That was horrible I know, just trying to be honest. I got over my pity party though and was able to bring my focus back where it was supposed to be to begin with. One thing I have noticed when I'm trying to deal with Micah is that I always want to fix what is hurting, and when I can't I get frustrated and then just want to find something to distract me from his pain. Did that make any sense? If I can't fix it then I want to pretend that it is not there, sad, but true. Funny thing is, when I pretend it's not there, it doesn't go away! So today I was trying to pretend it wasn't there and God said, "why don't you focus on me instead. It may appear that your son is in pain, but in reality he's with me, so why don't you spend that time with me also?" Ouch! So guess what I did? I got still and listened and what I heard was
Ps. 52:8-9
"But I am like a green olive tree in the house of God; I trust in the mercy of God forever and ever. I will praise You because You have done it; And in the presence of Your saints I will wait on our name, for it is good."
I don't know if this is a blog repeat, a repeat for me or if it is something that someone else gave me, but it is not the first time this week that I had this verse. So I'm wondering what it means to be like a green olive tree in the house of God? I'll tell you what I have learned thus far and if you have any insights into this then please share. Olive trees will grow where other trees cannot, hard rocky soil for example. There is not a part of them that is not put to use, wood for furniture, leaves are medicinal, fruit for food and oil. The olive straight from the tree is inedible unless something is done to change or transform it. For example, if it is crushed we can get the oil from it and we all know how good olive oil is for many different things. Or it could be soaked in a brine to make it edible. Either way it has to go through some sort of transformation to be usable. What I'm getting from this is that we must be cut down, pruned, crushed plucked, etc...in order for God to be able to use us. None of that sounds like anything I want to have done to me, it all sounds painful. But if the ax or pruning shears (whatever) are in the hands of the Master then we know that whatever pain may come is going to be used to bring more life than was there before. So therefore we must trust in the mercy of God forever and ever. If He is doing it then it has to be good no matter what it looks or feels like to us. So though it is hard and we cry (a lot) we wait on You Lord, for You are good.

As for Micah he has had a good day pretty peaceful today. Almost got a smile, but not quite. He did try to do some gymnastics in his bed while I was out of the room and I think that the nurse was a little worried that I was going to bite her head off when I found out. She looked a little sheepish and conveniently disappeared while someone else told me about his tricks. I was nice and he is tough so all is good.
By the way thanks so much to whoever it was that mowed the grass for us, may the goo Lord bless you!
Love you all,
Tina

September 28 3:30 PM

2009-09-28T15:47:00.000-05:00

The good news: We are back from the OR, there was no leakage from the stomach but they did go ahead and put in a few more stitches to make sure everything would be secure and they replaced the long dangling tube with a more secure button. They thought they were going to have to redo everything, but did not have to and he had actually done quite a lot of healing, so much so that the doctor said that he could go ahead and resume his feeds instead of doing the normal work up to it regimen of IV fluids one day, pedialite the second day and so on.

The bad news: he lost another permanent tooth : ( and a few others are loose so we are trying to get some help in saving them.

Thanks for the prayers we truly appreciate them.

September 27 1:00 PM

2009-09-28T12:59:00.002-05:00

headed to the OR

September 28 8:10 AM

2009-09-28T09:15:00.000-05:00

Good morning friends,

Not much has changed since Thomas' post, I didn't realize that he posted til just now as, strangely enough, after registering all my complaints with my Father last night (and they were many) I had one of the most restful nights sleep I've had since I've been here. Isn't that just like God? Thomas will be going to the holding room with Micah this morning despite his lack of sleep, he said that he would sleep later. He does much better with lack of sleep than I do so today he is going to be here for the surgery he missed a week ago. As of 4 in the morning we were first on the schedule, but we still have to wait for the night shift to finish up there stuff and if there were any emergencies that came through in the evening then that will push us back also. So as usual, we will have to sit & wait.

Last night I was getting angry because we could see our son was in great distress and we couldn't get anyone to take care of the problem. Even when we could get someone in the room, they honestly did not seem to know what to do and most of them said nothing. I kept thinking how different it was in the PICU (almost wishing we were back there for a few minutes, that's scary) because I knew that if we were there they would know immediately what was wrong and what to do. When our doc finally came and saw what we were seeing she immediately said, "I'm going down to the PICU to make sure that we are doing everything we need to be doing" then I breathed easy for the first time. The brought this big velcro wrap to put around Micah's midsection so that he could not move the tube any further, which miffed both of us. Why was this not done after his first surgery when I told them that his arms were a source of trouble as he kept them on his abdomen since getting his operation??? All of this could have been avoided. Anyway, the PICU doc came up took one look and told them what was wrong and fixed the problem. For those of you wondering, an NG tube is the feeding tube that goes through the nose.
So you can see now why I was wanting to be in the PICU last evening, instead the PICU came to us. What our nurses & doc struggled to control over hours they fixed in 5-10 minutes. That difference was in my thoughts the whole time we were waiting on someone to do something. I knew that PICU could fix it because that was their specialty. So this morning I am wondering what, as christians is our "specialty"? I believe that it would have to be breathing life into dead things. We all have our own ways to do that, just as each doctor had his specialty. A surgeon cannot help with neuro problems and a regular floor doctor cannot help with critical care no matter how upset I get about it. So I believe that the appropriate verses to go along with this would be found in I Cor. 12 where it talks about the diversity of gifts. I'm going to quit now because I don't feel like preaching, I'll let each of you take what you want from this.

Blessings,

Tina

Monday, September 28th, 3:30am

2009-09-28T03:37:00.000-05:00

Today has been a rough day. We started out this morning trying to get some physical therapy going but Micah wasn't responding too well so we decided to let him rest. He was restless and kicking in a rhythmic fashion pretty much all morning. We had some company who prayed some heartfelt prayers for us around noon. In the afternoon his temp began to rise slowly but steadily. Around 5pm Micah gets his dose of medicine that keeps his posturing under control and he was somewhat calm. They drew some blood for cultures, spinal fluid to check for meningitis and urine to check for infection. He accidently pushed on his G-tube and it is not where it is supposed to be. They cannot get anything in or out through his G-tube. This causes another set of problems since all of his food and medication and going in that tube. So after his dose at 5 (which we are assuming went to the right spot) we are in a state of limbo while trying to figure out what to do without the G-tube. Meanwhile his temp has been climbing and he is hyperventilating (heart rate over 180) which goes on for about a couple of hours. Finally the floor docs go for help and get a doc from critical care (who happened to be the one who was on call most of the time when Micah was in the same unit). The G-tube is unusable till surgery re-operates so they get permission to put an NG tube in just for meds. He is finally back on his cycle of meds and stabilizing. His spinal fluid, urine all come back negative for infection. He is first on schedule for surgery in the morning if all holds steady. I have been on my feet from 5pm to past 2am, most of the time holding Micah's hand to prevent him from further stressing his G-Tube. It has been a long day! I sent Tina to bed a while ago. The Lord is blessing her with sleep.
During all this time I have been having a conversation with the Lord about how He thinks this particular episode is supposed to bring glory? I don't have an answer. But I do know one thing - I can trust Him. See, I hear this undercurrent in conversations here about how we need be realistic in our expectations and plan to see normal results with Micah's situation. You see, I am not content with that. If all I can expect of God is what normal can offer, I should hang up my Christianity and move on to something else! If all we can expect of God is what man can see and do then we are of all men to be pitied. Jesus call us to believe that all things are possible and our first expectation should be to see the impossible happen. Even if we don't see it, we should not expect or believe any less of Him. Our calling is always to excellence and to the supernatural. So I have faith and believe that my Lord with work everything out for good - for He is good. It may not always be the results or methods that I prefer but as long as it is His doing, IT IS GOOD. God is faithful and He can be trusted to do the best thing for us and with us.
I am going to try and get some sleep!
Shalom
Thomas

September 27 12:20 AM

2009-09-28T00:55:00.001-05:00

It would seem that for the last 40 min. that we have started having some more of the thalamic storms. Not as bad as when they first started, but not any easier to watch. Heart rate is going wild, posturing, laying on a cooling mat and sweating. We're afraid he is going to hyperventilate before they can get some meds to him.
The surgeons said that the tube is in the stomach, but they cannot tell if it is in the right place so they have put him on the schedule for tomorrow (sometime). They are going to make an incision in the middle so they can look to see if the tube is where it is supposed to go. Scratch that last sentence, they are going to redo the g-tube.

I want to sit in a corner and cry, but God won't let me. We are begging for mercy just to calm this child. I don't think I've ever done anything harder in my life than to watch my child suffer, it is gut wrenching. Our doc has just gone down to consult with the PICU docs, please keep praying for us.
Trying to trust and not be anxious,
Tina

September 27 11:00 PM

2009-09-27T23:06:00.000-05:00

The spinal tap is over, no results yet. It was done as a precautionary step in finding out where the fever is coming from. The tube is still in the stomach, we are waiting on a surgeon to come up and check on it. One has already been up and when he checked it it leaked on the outside so I still don't know what the steps are to fix the problem. Hopefully it will be non-surgical. He has been given some pain meds just now and we are very anxiously waiting on them to take affect. He is in a great deal of pain right now, heart pounding. We are having to hold his hands until he relaxes so that he doesn't do any further damage to the tube.

September 27 8:50 PM

2009-09-27T20:59:00.000-05:00

Morphine & a spinal tap on the way. Next will be a contrast study, sending dye through tube to see where fluid is going, then depending on the results, down to the OR. Please pray, he is in a lot of pain.

September 27 8:30 PM

2009-09-27T20:35:00.000-05:00

The tube has definitely been pulled back so now they are checking to see if the inside parts are still in place, if not, then he will go back to surgery tonight.

September 27 6:30 PM

2009-09-27T18:38:00.003-05:00

Dear friends,
Our little guy has had a rough day today. His temp. has been slowly climbing and he has not been very alert. He became agitated in the night and it has slowly increased also. There is some concern that there is a problem with his G-tube. Not sure what is going on, his feeds went well and his meds went in well, but now the tube is not working and there is a slight bulge around it. We have to wait on someone from surgery to come look at it. It is either clogged or leaking. Clogged can be fixed, leaking will require more surgery most likely. I will try to let you know when we find out what is going on.
Thanks for your prayers,
Tina

I just heard the nurses say that they have ordered an x-ray. I forgot to mention they have been checking for infections due to the fever. Urine was clear, white blood count was high, but could be due to the surgery. Doing a check for flu and Thomas just said that they are thinking of doing a spinal tap (I hope not).

September 26 10:15 PM

2009-09-26T22:23:00.000-05:00

Hi friends,
I have a prayer request, more for the parents than the child. Though the days have gotten a little better for us, the nights have been harder. I don't know if Micah has his times confused much like a baby would, but we are not getting much sleep. It seems about the time we want to lay down he sill wake up and usually not in a good mood. It's always one of his times when we can do absolutely nothing to please him and he will make his noises and kick his feet, he hurt one of them he kicks so hard! Tonight we are trying to wedge pillows everywhere we can to prevent him from further harming his feet and legs. If we just lay them around him he kicks them all off in the floor so we are trying to get creative with where we put them. This goes on for a half hour to an hour at a time, several times a night. Thomas got up with him most of last night, but I was so tired this morning that I literally could not see straight. So, please pray that this would end, all three of us need more rest. Thanks again for all your support.
Love you all,
Tina

September 26 3:00 PM

2009-09-26T16:07:00.002-05:00

Hello friends,
We are having a good day thus far, despite the lack of sleep last night. We got more smiles today, yeah!! He even smiled at our visitors this afternoon and she thought that he tried to say "hi". The doctor has changed Micah's feeding schedule so that there are times during the day when he is hooked up to nothing and we can take him out of the room and roll him around in the therapy chair that he seems to really like being in. He is getting his PT in his chair right now and they are going to try to stand him up right now (assisted of course) so I will try to give you the play by play.

He likes the relaxing the arms exercise, smiling and watching Dad play peek-a-boo behind the PT.
All belts off and we're getting his back off the chair to see if he will help sit up. She is holding under the arms and wanting him to hold up his head, which he is not wanting to do right now. She is trying to teach him that he can hold his head up without kicking out his feet.
Up we go........smile, grimace, he can't decide. Sit back a little, smile, that was fun! He liked it!

Now we're going to try again with one person on either side (r&l) instead of front & back. I had to go straighten his foot and hold it down as the right one wanted to roll to the outside and he wanted to put most of his weight on the left leg. With stimulation to the backside in the form of a pat or goose to the bum he would straighten himself up and pull up his head. He definitely liked that a lot! Lots of smiles! I hope it was the standing he liked and not the patting and goosing LOL!

Well that was a lot of fun I wish you could have seen it with me, but hopefully that play-by-play will do for now until you can see him yourself. By the way he is still smiling, every touch is funny today, what a blessing.

This is a little long, but my hymn for the day was a version of the 23rd Ps. called "The King of Love My Shepherd Is" so I'm going to include it.

The King of Love My Shepherd Is
Whose goodness faileth never;
I nothing lack if I am His,
And He is mine forever.

Where streams of living water flow,
My ransomed soul He leadeth,
And where the verdant pastures grow,
With food celestial feedeth.

Perverse and foolish, oft I strayed,
But yet in love He sought me,
And on His shoulder gently laid,
And home, rejoicing, brought me.

In death's dark vale I fear no ill
With Thee, dear Lord, beside me;
Thy rod and staff my comfort still,
Thy cross before to guide me.

Thou spread'st a table in my sight;
Thy unciton grace bestoweth;
And O what transport of delight
From Thy pure chalice floweth!

And so through all the length of days
Thy goodness faileh never:
Good Shepherd, may I sing Thy praise
Within Thy house forever.

-Henry Williams Baker (1821-1877)

Blessings to you all,
Tina

September 25 10:30 PM

2009-09-25T23:10:00.000-05:00

Dear friends,
Sorry I did not get to this sooner, it was a busy day today. Filled with therapy, talks with docs, nurses, case managers & good friends. Even now it is still not quiet as Micah has decided to wake up from what I was hoping was going to be an all night sleep : ( He had a very good day that I was hoping would tire him out as he did not sleep well last night. Everyone that came in today was commenting on how good Micah looked today, how alert, etc... That was good to hear from others, mom's can be a bit prejudiced about their kids. My biggest source of frustration right now (for him also) is that he cannot tell me what is hurting. All he can do is make noises, we can usually tell if he is angry or hurting or simply making noise, but that's about it. Sometimes it seems like his frustration comes from being trapped inside a body that he cannot control. There is nothing I can do to make it better so we pray, we cry and we pray some more. Only God understands what is going on inside that boy and I have to believe that it is for the glory of God though it may seem like he is tormented at times.

One of the main things that I'm bothered by, besides wanting complete healing for Micah, is that this weekend is sort of a deadline for us. The hospital has done all they can do for Micah and if God does not intervene then we have to make a decision. They want us to do an in-patient therapy for Micah and from what we hear it is a great thing. The problem is that there is not one in the state of TN. The closest ones are St. Louis & Atlanta and with somewhere between a 4 - 12 week stay that would require me and the kids to move to that locale while Thomas stays here for work and visits us on the weekends. So we would be looking at another 1-3 months of are family being split up. At this point we have to do what is best for Micah, but the thought of it makes me very sad as all I want is to be together with my family in my house. Please keep praying for us as it has already been so hard for us being split up for these 2 weeks.

"For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? But if we hope for what we do not see, then we eagerly wait for it with perseverance. Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered. Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the will of God. And we know that all things work together for good to those who love God, to those who are the called according to His purpose." Romans 8:24-28

May the Lord bless you all,
Tina

September 24 10:32 AM

2009-09-24T10:35:00.001-05:00

I just went back to the bed and Micah was still looking pleased and I talked to him and he smiled with dimples more than once!

God is doing something, pray, Micah is crying.

September 24 10:30 AM

2009-09-24T10:27:00.001-05:00

Micah just smiled at us, not quite big enough to show the dimples, but definitely a smile!!
Thank you Jesus!

September 23 9:00 pm

2009-09-23T22:16:00.002-05:00

Hi,
I just wanted to let you know how Micah's day went. The morning started with him kicking so hard that he was rocking the bed, there is nothing wrong with his legs!! He was a little irritable most of the early morning, understandable after a surgery. When the PT came in to work the muscles in his legs I was a bit worried that he would give her a kicking, but he relaxed and did quite well for her. We then got him up in his chair and thank God I was watching because his whole face changed when he sat up!! It was so wonderful to see, his eyes were happy which made mom very happy. He got a good scrubbing today too which made everyone happy! He is still experiencing some discomfort from the G-tube surgery but all in all he had a good day. I was in the room almost the whole day today & had a friend with me and what I noticed was that he seemed to be more aware of his surroundings. He was looking all around the room and at one point got a bit upset, I think that he maybe realized his room was pink!

We have received cards form all over and from people we have never met. I try to read them all to Micah when he is awake. We appreciate so much your love for us and the prayers that are being lifted to our Father in heaven on behalf of the son that He has entrusted us with. There are literally thousands of people around the world praying for Micah! That alone blows my wee little mind!! Imagine what would happen if we could unite people to pray like this for the lost or for a city? What kind of change could we make in our own little towns if we were to unite with our brothers despite the names in front of our churches and pray in agreement for our cities. I think much more could be accomplished this way than boycotting a product or store would ever do. We pray and change the hearts of the people one by one.

When the neurologists were checking Micah they were always looking for what they called purposeful movement. It's not a reaction, but a purposeful response to a given situation. They did not want to see him pull away when hurt, they wanted to see him go after what was hurting him. I think that there is a good lesson in that for all of us. We need to quit reacting to all the things happening around us and start making some purposeful responses. In our case that would be purposeful prayer. I'm going to attempt to explain this in "sporting terms": A good defensive player will block the offensive players, but will most likely be giving up a little ground each time as he is waiting for the play to come to him. A great defensive player will be ever watching and able to anticipate the offensive teams moves as they unfold and thereby keep them from advancing. They will make purposeful movement to keep the opposing team from advancing. When fighting a battle we cannot take a stance and wait to be hit, we must come out swinging.

Sorry, I didn't mean to get so long and preachy, but I've had this purposeful movement thing stuck in my head for the last couple of days and thought I should share it. May the Lord bless each of you with the warrior spirit that you will need to fight the good fight each day.
Blessings,
Tina

September 23 9:30 AM

2009-09-23T09:35:00.003-05:00

Good morning to you all,
I'm a little tired this morning, but will be alright. Micah later into the evening was a bit restless and kept getting his legs stuck down the side of the bed. He also slept with both arms across his belly last night, his protective stance. The surgery doctors came in around 7 and said that everything looked good so the nurses would start feeding him again today, yeah! I think his problem right now is that he is hungry, which is making him quite irritable.

Someone had asked about our other children. They are at their grandparents in IL right now having a great time. They love to visit there and have been fishing and I think were going to go to a lake and go out on a boat. Abigail caught a 2 ft. long catfish the other day! I asked her if she ate it and she said, "No, gross! I put it back in the pond!" Her Ammachi will be heartbroken when she hears this. Sometime this weekend they are going to go to my sisters house and visit with their cousins that they hardly ever get to see. They are very excited about that! I tried to talk to all of them yesterday, but then the surgery team showed up and whisked us away so I will try to finish that today, after Micah has had something to eat. Maybe he won't be so grouchy on the phone then and can make some of his nicer noises. I'm going to get out of the room for a minute before another doctor or therapist catches me.

How sweet the name of Jesus sounds
In a believer's ear!
It soothes his sorrows, heals his wounds,
And drives away his fears.

It makes the wounded spirit whole
And calms the troubled breast;
Tis manna to the hungry soul
And to the weary, rest.

- John Newton

Blessings to you all!
Tina

September 22 8:30 PM

2009-09-22T21:22:00.000-05:00

Good evening friends,
I had thought today was going to be spent sitting in the room with Micah waiting on the docs. but it turned out quite different. Thomas left this morning at 7:30 to head back to Jackson as we thought that it would be late afternoon or even tomorrow before Micah's surgery came around. Instead, about 9:30 (just as Thomas got back to Jackson) a bunch of ladies showed up at the door, no warning at all, and said we're here to take Micah to the O.R. I was a little upset with them, but what to do. By 10 or a little after we had gotten to the holding room and did not get back to surgery til 12:30. He was done by 1:50 and after another 1 1/2 hours I got to go back and see him. By 5 we were back in out own room. Everything went well, the tooth had already dislodged itself which I had suspected and to quote some scripture for you, "this to shall pass..." : ) Micah has been resting fairly comfortably since the surgery and will probably do so until tomorrow morning sometime.

Probably the hardest part of the day for me, besides the waiting, was when I saw a little boy being wheeled out of the hospital in a wheel chair with a big smile on his face. That's what I want to see, my boy leaving the hospital with a big smile on his face. Micah is a very smiley boy and 12 days has seemed like an eternity. " How long O Lord...?"

I have to believe that He sees my darkness
I have to believe that He knows my pain
I have to lift up my hands to worship
Worship His name
I have to declare that He is my refuge
I have to deny that I am alone
I have to lift up my eyes to the mountains
It's where my help comes from
He said He's forever faithful
He said He's forever true
He said that He can move mountains
And if He can move mountains
He can move my mountains
He can move your mountains too
I have to stand tall when the wind blows me over
I have to stand strong when I'm weak and afraid
I have to grab hold, hold of the garments
Garments of praise
I have to sing praise when the hour is midnight
He unlocks the chains that bind up my soul
My sin and my shame He has forgiven
And made me whole
I have to believe

- Rita Springer

Blessings to each of you,
Tina

September 21 10:20 PM

2009-09-21T22:52:00.001-05:00

Hello friends,

We have had a busy day today talking to many doctors, case workers & friends. Today was to be the day of the tooth removal, etc... but and emergency case came in so we were bumped to "maybe tomorrow". It turns out this was a good thing as the doctors had forgotten to run a trial on Micah to see if he was going to be able to tolerate food going directly to the stomach before putting the feeding tube in! Our nurses caught that, we really like the nurses a lot. They did the trial today and it has gone very good, he showed some signs of discomfort at first but that quickly resided and he has been at rest then rest of the evening. We had a good visit with a couple of families and then later in the evening our doctor friend came in to visit bearing coffee, thanks Clay!

We are trying to take our days one at a time. Today I helped change Micah several times and did not cry once. Last night I learned to give his meds to him and tomorrow I plan on learning as much from the nurses as I can. We see small improvements (in our eyes) each day, different ways he responds and tries to communicate to us. He gets frustrated and a lot of times we do to because we can't always find out what is bothering him. It's how a lot of you have expressed your feelings for us, "we want to help, but we don't know what to do". Believe me, knowing that you want to means a lot to us and we hope that Micah understands that we want to help but don't always know how also. Just now he was frustrated and I couldn't figure out what was wrong, a minute later his food kicked on and he go quiet. He was hungry I suppose, but he couldn't tell me that.

This is the first time in ten days that food is going into his stomach and it is going well, but at midnight he gets cut off and goes to fluids (in case he gets to have his surgery late afternoon tomorrow) Pray for his comfort as I don't think he is going to be as happy with the fluids tonight & tomorrow as he is with the food today.

We are still praying and trusting God for complete healing and still trying to do the day to day things that have to be done. Reminding God of His promises to us while changing a diaper and His promises for Micah while calming him. God is good, this is the verse that was shared with us today:

"The Lord is righteous in all His ways,
Gracious in all His works." Ps. 145:17

The Good Lord bless each of you, I wish I could hug all of you for your encouragement to us.
Tina

September 20 11:00 PM

2009-09-20T23:18:00.002-05:00

I know I just got off of here, but God just put a song in my heart and I wanted to share it with you just so you can see how He keeps encouraging me to praise Him. Praise is the only way that I can have any peace at all, He created us to worship Him. If we're not doing everyday what we were made to do then how can we please Him. Granted, music is only one of the ways that we can worship, but it one of the ways that I most enjoy.

How great are You Lord
How great is Your mercy
How great are the things
That You have done for me
How great are You Lord
Your loving kindness
Is filling my heart as I sing
How great are You Lord

How great is Your love
It reaches to the heavens
How great is the heart
That sought and rescued me

How great are You Lord

How great is Your mercy

How great are the things

That You have done for me

How great are You Lord

Your loving kindness

Is filling my heart as I sing

How great are You Lord

- from the album Revival In Belfast with Robin Mark

I pray the Lord will wake you with a song in your heart and give you more throughout the day.

Blessings,

Tina