Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, January 12, 2012

Three appointments down!

Wow, it's been a busy week and it's not even over yet! And although tomorrow was supposed to be a "free" day, I had a feeling it wouldn't stay that way. I was right!

Weds we went to the International Adoption Clinic at the University of Minnesota. We really like Dr. Eckerley! She also saw Axel when we brought him home last year. He was the first child with Down syndrome they've had come through the clinic.

The doctors at the international adoption clinic are very knowledgeable about the issues faced by adoptees coming from various countries around the world. Each country has a certain way it treats it's orphans and some give better care than others. Also, certain countries are known to have poor diets, certain parasites, or high incidence of this or that. Also, when being seen through the IAC, it's very common to find the child needs referrals to various specialists, and I've found this is the fastest way to get into them! The last thing is it's comforting to be around medical staff who "get" that this child is working on bonding and to not fall into the "Oh he's so cute!" thing. I don't have to worry about stopping people from hugging him because if I can't intervene quickly enough, they will turn him back to me and remind him that hugs are for Mama only.

Asher had a very brief developmental assessment done by the OT.  VERY brief. It's really to get a general idea where he's at, but mostly to have referrals written for therapy services. I was correct in my guestimate of Asher's developmental levels. He's right in the 6-12 month range for fine motor, 12-18 months in gross motor, with some splinter skills up to the 24 month range. He was given referrals for ST/OT/PT and feeding therapy. The feeding therapy won't be started until his surgery is done and he's feeling back to himself. The other therapies....hmm...I'm not sure when is the right time to start them. The IAS usually recommends waiting until the child has been home 3-6 months so we can establish a good bond. I think that's probably about right based on how Asher is doing now. Also, I'm expecting surgery to cause a little bit of regression.

There were also orders written for a TON of bloodwork, but we also needed to see the GI specialist so this was put on hold until she could add to the list.

The GI specialist agreed that Asher needs a colon biopsy done to rule out Hirschsprungs Disease. Hopefully he doesn't have it. She also ordered blood work to test for Celiac disease, and a script for Miralax so we can start cleaning out his impacted colon.

She did also tell me that if Asher's Celiac antibodies come back showing celiac, and since Angela has the antibodies as well, it would be wise to put them on a gluten free diet.....even if they're not symptomatic. She kind of cringed when I told her Angela is a carb junkie. ;-)

Ok, can I just say right here and now, I am the WRONG parent to have a child on a gluten free diet? It involves lots of planning, not to mention cooking. I suck at both. Really. Anyone who knows me will completely agree with this statement. At this very moment in time there is no reason to go to such drastic measures, but that could all change with the results of Asher's testing. I'll be hiding under my rock until then.

Anyway, when the GI visit was done it was time for to get all that bloodwork done...17 vials worth! Poor Asher! But you know what, he didn't even BLINK. Nope. He is just so used to people doing things he has no choice about that he has NO fight in him. It's sad, really. I'd rather have him kick, thrash or at least cry. Wait...maybe not.

Today was a visit to the pediatric eye specialist. This was a new doctor for us and I really liked him as well. There were supposed to be two adults at this appointment, but we decided that Dean would go to work since it looks like he'll be taking off some days while Axel and I make a trip to Philly next month. So...lets go oldest to youngest, shall we?

Angela: Angela's vision is stable at the moment, but she is on the verge of needing bifocals. I know, right? I know lots of kinds younger than here who need them but it's usually associated with "older" kids with DS. When Angela was born she was completely lacking a tear duct on her left eye. The first time she had surgery on it was at 11 months, and she's had a few since then. The last time was to put a stent in when she was 8 or 9. That newly created duct just doesn't like to stay open. It's time to put a stent in again. Otherwise for now Angela is good and there is no need to change her glasses prescription. She was disappointed since she wants new glasses.

Axel: Axel's vision is perfect. Last year right after we came home we knew his tear ducts were completely blocked because he constantly has tears running down his cheeks. Unfortunately taking care of that problem had to take a back burner to getting his spinal fusion taken care of. Well, it's time to get it done. so Axel will be getting stents as well.

Asher: Oh, this is the appointment I've been most anxious for! I knew he wasn't seeing well, and I was right. Asher's left eye is significantly worse than his right, and the fact he has estropia and nystagmus in that one eye doesn't help. To compensate he's stopped using it and his brain has stopped registering that it's there. Tomorrow I'll be taking Asher to get his glasses, which I'm sure he will want nothing to do with. As we learned with Angela, when a child sees this way and you put glasses on them, they can't see any better with the glasses. It takes the brain as much as 6 months to realize that bad eye can now see and to start processing the information. The key to how long it takes is how long you can keep the glasses on the child, but trying telling a child to keep these things on his face that are interfering with how he sees! For now we're just going to try the glasses and go back in 6 months. Then if need be we'll switch to or add patching.

Since Asher will be having surgery sometime around the end of February, and since Angela and Axel also need their minor procedures done, I think I'm going to try something insane and schedule them all on the same day. Dean is going to have to take off work anyway, so it would eliminate days off if we can do all the kids on one day. Then he can take the other two home afterward and I'll stay at the hospital with Asher who will be in for a couple of days.

I think I'll call the hospital and see if I can get that suite booked now!

We were there for a total of 3 1/2 hours, but we did have a little fun while where there. For about 90 seconds we got to see our friends the Dickens who had an appointment at the same time. Micah is the cutest little thing! He's 4 and about 1/2 Asher's size. All the kids got to get hugs from him. (pictures lifted off Jennie's Facebook page.) I love when we get to run into friends!




3 comments:

abby said...

We love the IAC at the U. Sorry about 17 vials. Milo had to get about 8 or 9 drawn....and he was 5 months and 10lbs....but you want to talk about kicking and screaming and thrashing.....

Hey, have you heard of zennioptical.com? Super cheap sight for glasses...seriously, like $7-$40 per pair, inclusding lenses. My glasses are a serious script...like no depth perception without them, thick as coke bottles, etc. and last summer I ordered 4 pair and paid $80 including shipping. When my kids need glasses, that's where I'm getting them....no worries if they are broken or lost, cuz I'm ordering back-ups!

Leah S. said...

Abby, thanks for the info about the glasses website! Kids with DS are really hard to fit, because they have a shorter than normal distance from their face to their ears, and like NO nasal bridge (though Asher's is bigger than both Axel and Angela's) and a very wide space between their eyes. it makes fitting them tricky. Angela has had two pairs of glasses combined to make one before. LOL It's a good thing Asher has bigger ears than most kids with DS have, because he's likely going to have to fit hearing aids in there too. This is wear we have the biggest problem with Angela! Her ears are SO tiny, there isn't room for glasses and hearing aids, and makes wearing head bands out of the question. (and she can't wear the elastic ones because of bracheolcephaly making the back of her head completely flat, and who would have guessed it's the bump that keeps a headband on? LOL I should blog about that. LOL

Leah S. said...

Ooh but I bet a person could take their kid, try on a zillion glasses, then order from there huh? I'll check it out! Thanks again!