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
Tuesday, December 29, 2009
Wednesday, December 23, 2009
December 22, 2009 12:30 AM
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
May the Lord bless you and keep you,
Tina
Monday, December 21, 2009
December 21, 2009 11:30 AM
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
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
Thursday, December 17, 2009
December 17, 2009 12 AM
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
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:
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
Tuesday, December 15, 2009
December 15, 2009 11:30 PM
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
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
Monday, December 14, 2009
December 14, 2009 10:00 AM
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
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
Friday, December 11, 2009
December 11, 2009 8:30 AM
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
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
Thursday, December 10, 2009
December 5, 2009 11:00 AM
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.
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
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, December 6, 2009
Sunday, Dec 6th
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
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
Saturday, December 5, 2009
December 5, 2009 11:00 PM
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
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
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
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
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
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
Friday, December 4, 2009
December 4, 2009 10:30 PM
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
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
Thursday, December 3, 2009
December 3, 2009 10:30 PM
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
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
Tuesday, December 1, 2009
December 1, 2009 10:30 PM
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
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."
May the Lord bless you and keep you!
Tina
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