A Little Something Extra

Tuesday, October 27, 2009

Day 27 of 31 for 21 - New doctor for Micah

Doesn't this look like the beginnings of a game of "Ha" ?
(no, you didn't miss something... I didn't post yesterday. I was planning to post last night but Micah had a rough evening and ended up crying almost all night long. No fun. He still has a cough today, but no fever.)

Micah saw a neurodevelopmental pediatrician today. She specializes in kids with Down syndrome. We arrived at 8:40 for his 8:45 appointment and we left the building at 12:00. The poor little guy didn't get much sleep last night (nor did I... Mark is away on business), so by 11:00 he was basically past tense.

Anyway, I LOVE LOVE LOVE this doctor. This is one of the reasons I was looking forward to moving here. She is a wealth of knowledge about Down syndrome. She truly read ALL of his records from all of his previous issues and asked me a lot of questions while we were there. And she was very encouraging too, which I definitely needed today. In general, she's very pleased with where Micah is developmentally, especially given all of the health issues he has had. I need that reminder sometimes. It's so easy for me to compare him to all of his buddies that we left in the Valley (who were all walking at age 2) and get sad about how he doesn't bear much weight on his legs yet. But I have to remind myself that most of them didn't spend over 3 months in the hospital their first year of life.

Therapies - We need to focus on eating and speech, and we will look into private services to supplement Early Childhood. He will walk eventually. But we need to get a good foundation for speech sooner rather than later. She feels good about the therapies available through our new school district (Birth to Three services are provided through the school system here in MN, rather than through the county, which is how WI runs Birth to Three). But she also recommended a private SLP (speech and language pathologist) who specializes in muscle-based oral motor skills (Talk Tools... anyone out there have kiddos working with this program?).

ENT - At Micah's August visit to the Feeding Clinic in MKE, he had a swallow study done. The SLP who did the swallow study said that Micah's tonsils weren't affecting his swallow, but her opinion was that they were blocking about 50% of his airway. Dr. M (who we saw today) looked in Micah's mouth (not an easy task, I might add) and she couldn't see his uvula because his tonsils were so big (though she did consider that she couldn't see his uvula perhaps because he was screaming!). She recommended we talk to ENT. It's possible that Micah's tonsils are causing him to breath through his mouth which might be why he doesn't sleep well. We'll see an ENT next week and get his opinion.

Cardiology - We received a referral to a cardiologist from Micah's cardiologist in the Valley. She has a good reputation here, but she's at "the U" (meaning, she's at University of MN rather than at Children's Hospital... there's also Gillette Children's... confusing around here with so many options). Dr. M thought it would be better for Micah to see a cardiologist at Children's since he would likely have most of his care there (i.e. ENT). But the U is known for cardiac surgery. And I do want Micah to be seen by an ophthalmologist at the U (a recommendation from Dr. G in Madison). And since Micah might need eye surgery next year... ugh. Decisions.

Orthotics - Micah was measured for orthotics today. Many kids with Down syndrome have very loose ligaments in their ankles and that can cause pronation. Micah is no exception. So we're getting him some Sure Steps to help support his ankles while he stands. I've heard other parents say that their kids were much more confident in the standing position after getting their Sure Steps. Micah's will arrive in about 2 weeks and we'll go back to have them fitted at that time. For those of you whose kids already have them and you're wondering what pattern we chose, Micah will be wearing the stylish "Traffic Soup" pattern. :-)

That's all the news that's fit to print.


Kris said...

Great news on the developmental ped!! I'm so glad you like her. I wish we had an option like that here. Oh, and we use Talk Tools for Erin, implementing some oral-motor here at home. I like it..they make it fun so it doesn't seem like work :). I hope Micah is feeling better soon. Kris

Andy and Katie said...

WOW! That's quite a medical update! Sounds like an amazing appointment--what a relief, to be finding doctors that you love and feel comfortable with.

SO sorry about Micah crying most of the night--that is rough. Is he better now?

Orthotics.....Jennie...Jayna would not bear ANY weight at age 1 and she does not have DS. When we were finally given orthotics that went up around her ankles, it was night and day--she started cruising etc. I'm excited to follow Micah's progress!!!!

Yay for progress in the important things with your relocation! :)

datri said...

Glad you found a great dev ped! I know how important that is. Ours is useless. I have to drive 2 hours there next week and I know he'll look at my kids (both of them) for about 5 minutes tops and just write out new prescriptions for them. I get nothing out of the visits at all.

ATLKrafts said...

you are amazing to keep up with all of that. I am so glad you are Micah's mommy... ;) I hope that a new set of eyes can lend some insight into his nighttime difficulties. glad you also don't have to drive so far for the medical stuff!