A Little Something Extra

Thursday, August 5, 2010

Quick Micah medical update

Micah saw his wonderful neurodevelopmental pediatrician, Dr. M, today.  She had some preliminary results from his immunology workup and his PSG (sleep study).  There were apparently a couple of things a bit "off" with his immunology labs, so it appears he might be in for another blood draw.  But I have yet to hear from the immunologist myself but all of the lab results were not back, so that's probably why she hasn't contacted me for a follow-up.

Micah's overnight oxygenation was very good, so it appears he does not have any apnea issues, praise God.  But as I mentioned the other day, Micah would have nothing to do with any electrodes on his head.  So we don't have any EEG readings.  The technician noted that Micah moaned and rolled a lot overnight, which is what he does at home.  Because we don't have the EEG stuff, we don't know whether he actually gets the deep sleep he needs overnight.  I'm waiting to hear back from ENT about what his plans are going forward.

Micah's height is now a concern.  He has only grown 1/2" since he first saw Dr. M last October.  So we get to add some more bloodwork (to check some growth hormones) and a visit to an endocrinologist (Micah also has hypothyroidism, fairly common with Down syndrome, so he probably needed to see an endocrinologist anyway).

We are probably going to add some private physical therapy to Micah's weekly regimen, not because I have any sort of opening in our schedule, but because he needs it.  He is 2 1/2 and not standing independently, let alone walking, and that is definitely "late" by today's standards for "our kids."  I've heard some parents say that the average age for walking is 3 years, but recent data does not show that to be true.

I'm so thankful that we have someone who has a holistic concern for Micah as it relates to Down syndrome.  We are blessed to have had an opportunity to get Micah in to see Dr. M when we first moved here.  She knows many specialists in the Twin Cities and knows which of them have a strong knowledge of "our kids."   Micah's medical issues are a bit more than the average kid with designer genes, so it has been especially helpful to have someone to help me coordinate his medical and therapy needs.  Micah's pediatrician is great too.  I've been impressed with how well Micah's doctors and therapists communicate with each other.

On a separate note, it was sort of an emotional day for me.  It was the first time we had seen Dr. M since Micah's toxic shock experience in April.  It brought back a lot of not-so-good memories.  I've tried to fill my mind today with thoughts of gratefulness that our sweet boy is still with us, rather than dwell on the horror of that experience.  But I even remember it every time I look at his toes.  Why toes?  Well, Micah lost all of his fingernails last month.  They broke off about halfway down the nail bed.  A few of them bled.  As you may know, toenails grow much more slowly than fingernails, so Micah is going to shed all his toenails soon too (he's already lost one... I'm not looking forward to the big toenails coming off, so I'm trying not to let him go barefoot very often in hopes of protecting the toenails).  Ugh.  Anyway... it was a rough morning, re-hashing some of the April events and the pending bloodwork, etc.

Then the memories came flooding back again this afternoon when Children's Hospital posted a link on Facebook to the now-completed renovation of the Emergency Department.  They featured the trauma room.  Curious?  Click here to see where Micah's life was saved.  Would you believe 13 medical professionals (and I) fit in that room?

On to more pleasant thoughts... For your viewing enjoyment, here is a video of Micah going a bit crazy over a toy in Dr. M's office (if you're reading this post in an email, you'll have to click through to my blog to see the video).

And some photos too


Jonathan said...

Thank you for the big update. Jeff has wondered how the overnight went, so I'll share it with him. I'm thankful for the doctors you are working with and hope that you are able to get answers for the other questions that are coming up, too. Love the video. :)


ATLKrafts said...

Cute video! I love how excited he is. Sorry about having to re-live the April experience. He is doing so great!

Rena said...

Micah is a good dancer! I love his happy smile.
Thanks for the update. I will continue to keep you all in my prayers.
Loved the Orlando pics too. I'm so glad Nathan had such a fun one on one time.

Emily said...

Thanks for the update. He really does look great! We'll continue to keep him in our prayers!