Friday, May 30, 2008

Arkansas, here we come!

Micah loves plastic; it must be a texture thing.
Suds gotee.
Micah with his backpack; Wayne was lucky to get a few pictures along with this great shot in the thirty seconds he had the backpack on!

Most of you know we have been trying to move closer to our families since Micah was diagnosed with TS. Many of you have been praying for that and though we have very much enjoyed the bay area, we are moving on.

Wayne accepted a job earlier this week at University of Arkansas, Ft. Smith as the registrar there. Though this is a somewhat similar position as he is doing now at GGBTS, there are about 7,000 students there and he will have some different responsibilities. He is excited about the new challenges.

As far as location, Ft. Smith is in the northwest part of Arkansas right on the border with Oklahoma. Though I grew up in AR, I’ve never been to Ft. Smith. Wayne was there last week for his interviews and said it is a pretty city located in a valley on the Arkansas River. I have been a little further north in the Ozark Mountain area and it is very pretty part of the state. It is almost centrally located between our families; Wayne’s parents are about 3-4 hours away in OK, and my parents are about 5 hours away in northeast AR. We are excited about being able to see our families more than once or twice a year. Ft. Smith is the second largest city in AR, so we are hopeful that there will be good services for Micah.

When is this happening? Glad you asked. The job starts August 1; Wayne plans to work at Golden Gate until mid-July and we will likely move in the few days or week following.
The baby is due July 8th, but I really think he will come early. At my last Dr. visit, she said if I can “make it” to week 36, that would be ok. I am at week 34 now. Please pray that he stays in until week 36 or 37, I just want him to be as healthy and “cooked” as possible! Though there is much to do, I am trying to take it as easy as possible.

Friday, May 16, 2008

Praying for Micah's speech

This past Monday Micah had an EEG followed by an appointment with Dr. Raja. The great news is that the EEG revealed no seizure activity. He hasn’t had the horrible infantile spasms (which he had since 4 months old) since last April of 2007. On occasion he has some staring moments and other suspicious looks that have made us and his teacher at school wonder if he might be having what are called petit mal seizures. Anyway, so none at this point (at least none that happened during the EEG), Praise the Lord.

The appt. with Dr. Raja was fairly typical with the usual examination and questions about his development. He asked about Micah’s speech, if he had any words yet, and we said no. When we probed a little further, in terms of timing, his future development, etc., Dr. Raja said that if he has no speech by age 5, it isn’t likely he will get it because the brain is fairly set at that point when it comes to speech. My mind immediately went back to the first week of his diagnosis in August of 2005, when we asked what life would be like for Micah. Dr. Raja had said, “Oh, these kids (with Tuberous Sclerosis) walk and talk, though it’s often slow to develop.” So, needless to say, we were a bit surprised by the possibility that he might not develop speech.

This was very upsetting to me and I feel like I have been processing it all week. We have such a longing even now to communicate with Micah. We want to know what he’s thinking, what’s going on in his mind. We want to know what he’s so obsessed with outside that he stands at the sliding glass doors saying “EEEEEEEE!!” and flapping his arms for minutes at a time. We want to know what is making him so upset when there seems to be no obvious reason, as well as what makes him laugh so suddenly. I realize that even if he could say a few words right now, he probably wouldn’t be able to communicate these things to us. Yet, I never considered that he may never talk at all.
He is getting some speech therapy within his class at school, but we may be looking to get more one on one therapy for him in the near future.
What I want to ask of any of you who may read this is to consider being committed to praying for Micah to develop speech in the weeks and months to come, or however long it takes. I know many of you pray for him anyway, but it never hurts to pray for something specifically. I feel like Wayne and I have sort of lived between a tension of faith and reality. We absolutely believe God can do anything and we can and have prayed to that end for many things concerning Micah. We also believe, and have seen, that God sometimes chooses to give a “no” answer. So, we are going to pray and ask for God to do this in him with the understanding that it might not happen for reasons we may never know.

I have been reading (slowly over the past several months) “Prayer” by Philip Yancey and would highly recommend it. In a chapter called ‘Unanswered Prayer: Whose Fault?’, he says “…prayer does not work according to a fixed formula: get your life in order, say the right words, and the desired result will come. If that were true, Job would have avoided much suffering, Paul would have shed his thorn in the flesh, and Jesus would never have gone to Golgotha. Between the two questions “Does God answer prayer?” and “Will God grant my specific prayer for this sick child or this particular injustice?” lies a great pool of mystery.’

Thursday, May 08, 2008

Better school days

Micah with friends Madeline and Lillian ( friends' Ryan and Marian's girls)
Micah and Olivia on Easter Sunday (Olivia is 4 month old daughter of friends Stacey & Elijah)

The boy sure loves bath time!

Sporting his shirt that friends living in India sent.

If you read the last post, you know that Micah was having a hard time adjusting to school. Thankfully, he is doing so much better at school. In fact, his teacher called me last week to say that Micah had a great week. He said he was engaged in what was going on, was grabbing books and pointing to pictures in them (pointing is very new, and he doesn’t do it a lot), and that he had laughed some too. He still gets a little upset when he first gets into the classroom, but they have a little routine for him now. There’s a cow puppet in the classroom he’s attached to that they give him and they put on some classical music. He sits in a certain place for a few minutes and then he’s fine. So, thank you for praying for this!

Another note of encouraging news is that Micah is learning to do some things on his own. He has started to feed himself with a spoon and fork. I went to his class for an open house two weeks ago and the parents were to have snack with their kids. So, I started feeding Micah his yogurt like we always do at home. One of the teacher’s aides looks at me and says, “Oh, Micah had been feeding himself the yogurt.” I was so surprised and said “You mean he knows how to dip the spoon in, get some out and everything?” To which she replied “Yes, it isn’t always pretty, and doesn’t always completely make it to his mouth, but he’s getting it, he understands the concept.” So, we have been so excited and have let him feed himself more and more. He still isn’t great with the mechanics and coordination, but that will come!

He is also understanding how to help us when we are putting his clothes on. He isn’t quite coordinated to pull his pants up yet, but likes to try and thinks it’s funny. He also understands what it means to brush his teeth though it will be a while before he can do it by himself.

All these things are very encouraging and hopeful to us. I think Wayne and I have both wondered how long it would be before Micah could have some self-care skills, just like we wonder how long it will be before he can talk. What I’m learning is to be thankful for little bits of advances and progression. I have to say, I think him being in this half-day school has been great for him. It’s been since he started that we have seen all these new developments. I was also reminded recently of what one mom said in a book called ‘The Elephant in the Playroom’. It’s a great book about raising kids with special needs. She said “I need to remember that my son didn’t ask for this. I need to remind myself that it is harder to be a child who struggles with a disability than it is to be that child’s parent.”