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
Monday, February 7, 2011
Sunday, December 26, 2010
December 26, 2010
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
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
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