Friday, November 27, 2009

November 27 10:30 PM

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,

Tuesday, November 24, 2009

November 24 11:30 PM

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,

Thursday, November 19, 2009

November 19 9:40 AM

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)

Tuesday, November 17, 2009

November 17 10:30 PM

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.

May the Lord bless you all richly,

Saturday, November 14, 2009

November 14 1:30 PM

Hi friends,

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!   

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,

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

Wednesday, November 11, 2009

November 11 10:30 AM

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,

Monday, November 9, 2009

November 9 10:30 PM

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,

Friday, November 6, 2009

November 6 11:30 AM

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.

November 5 11:30 PM

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,

Thursday, November 5, 2009

November 4 11:30 PM

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.

Monday, November 2, 2009

November 2 11:30 AM

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!