Friday, March 13, 2009

Update and prayer requests

This will be a repeat if you got an email from us. I'm never sure who reads our blog and/or if those same people are on our email update list.

It has been a while since I’ve updated about Micah, and I have meant to for a month or so and now it seems important. Not that it hasn’t been important, but things have gotten quite stressful in the last couple of weeks so I feel an urgency to ask for prayer.

Micah has been having some major tantrums/meltdowns/fits (take your pick) for the past couple of weeks. It has been almost daily with the exception of one or two days. He gets upset often in mornings as we are all getting ready for the day and in the evenings just before bedtime. His teacher at Kids First says his meltdowns at school are becoming more frequent and lasting longer. He cries, screams, and often thrashes around when we try to hold him or contain him. He was having such a hard time on Wednesday that the school called me to come pick him up mid morning. Sometimes it seems (though we aren’t sure) that it’s noise bothering him (the TV, the stereo, etc.) because he will bang on the TV or push it with his hands (and would push it off the entertainment center were there not a wall preventing it). Other times it is outside when the wind hits his ears. The nurses at his school have checked his ears often and I’ve taken him to the Dr. who all concluded that there was no ear infection. So, I’ve called his new pediatric neurologist and am waiting to hear back. Wayne and I are very concerned and are wondering if something might be going on internally, either beyond an ear infection or if something might be happening with the tubers (growths) in his brain.

I’m trying not to be anxious and worry about it as Scripture says (Philippians 4:-6 and 7), but it’s hard. It’s so hard to see your child so upset and not know why. Dr. Raja (his Dr. out in San Francisco) had told us that kids with Tuberous Sclerosis often exhibit behavioral problems and it may be that we are just now seeing that happen in a major way. There have been times that Micah has been hard to deal with in the past few years, but he has generally been a happy kid, and you know this if you’ve been around him.

We saw Micah’s new pediatric neurologist on March 2 at Arkansas Children‘s Hospital in Little Rock. It was an hour and twenty minute wait in the waiting room before we got in to see Dr. El Nabbout and Micah was no longer in a happy mood. He was too upset for the Dr. to examine him so he just asked us a lot of questions. We liked him, but he seemed a little too laid back to me. I think we will always compare other doctors to Dr. Raja because he was so good, caring, and really took his time with patients. He said that Micah will need to have an MRI of his brain and ultrasounds on his kidneys, heart, and possibly other organs once every three years after the next ones. The MRI is supposed to happen in six months, but we are pushing to get it sooner.

It was actually a good thing that Micah had a meltdown in front of the doctor. He is referring him to a developmental center connected with the hospital to be seen by a behavioral specialist. He thinks Micah may have a mild to moderate level of autism. We have been told there is a long waiting list to get into this center, so pray that it won’t take too long!
Gabriel is doing well, he has been sick for the past two days, but is on the mend, I think. He is doing a great job pivoting around with his arms on the floor and rolling everywhere. Crawling is probably not too far away. He has four teeth now, two on the bottom and two on the top. He laughs easily and is getting quite active.

I wrote most of this yesterday while Micah was at school and he had a good day…not a single meltdown!

So, if you are still reading, please pray for the following:

-Micah’s tantrums to decrease for his well being and ours, and so that he can benefit from his preschool
-for the MRI to be scheduled soon, in case that might reveal a reason for his behavior
-the process to get into the developmental center won’t be too long
-patience for Wayne and me as we care for and love him
-wisdom and patience for his teacher and caregivers at school as they deal with him
-please pray for me on Sunday morning, I’m running the Little Rock half marathon and I haven’t felt well today. Pray that I feel well Sunday morning and have strength and endurance for 13.1 miles!

We would love to know how to pray for you as well.

2 comments:

On the Eastern Journey said...

Thanks so much for this update. We are praying for your family and hope that you can get the necessary appointments sooner than later. I can totally understand how you would miss Dr. Raja. He was so kind to your family for such a long time. We love you guys!

Renee Folger said...

Hi Kelly,
I'm your second (or third) cousin. I'm your Aunt Lou's grand-daughter (Beverly's daughter). I've been following your blog for almost a year and think about you often. My heart goes out to you & Wayne and I will continue to keep you in my prayers. I really admire your strength.

xoxo
Renee (Jones) Folger