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
     

October 7, 2010

Hello friends,

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

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

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

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

      

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

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

Ps. 27:13-14 

Blessings from the Father to each of you,

Tina