Blogging about life in Minnesota, raising our six 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 06, 2011

International Adoption Clinic

Yesterday Axel had an appointment at the University of Minnesota International Adoption Clinic.

FUN! was very interesting!

First of all, it's in the Pediatric Specialty Clinic at at the U of M. I have been there plenty of times with Angela, particularly in the last 18 months as her local GI Dr. is there. (Angela has Cricopharyngeal Achalasia ) We have NEVER been treated quite the way we were yesterday. The nurse coordinator came out to the waiting room to introduce herself, and to let us know someone would be out for us in just a minute, and "sorry for the long wait". Umm...we'd been there all of 5 minutes!

Let me back up a bit. She called me two days before to see if I had any specific questions for them. Actually, I did. "Could you get us a referral to peds. cardiology so we can get his echo done ASAP, and...even more important...can you get him into radiology for his AAI screening? We need that done right away before he can be sedated or put under anesthesia, and Special Olympics, and cardiology he needs to be cleared before he can have dental work done." The nurse practitioner wasn't familiar with AAI, and they don't have a lot of kids with DS who come through, and the ones who do are MUCH younger (usually too young for the screening) I had her call down to the U of M DS clinic to specifically ask how to order the xrays, and where to send us that is familiar with doing them.

So back to the waiting room....

Not two minutes later Axel's name was called. First we saw the OT. (Occupational Therapist for those new to the lingo in the disability world.) This is not just any OT. She is an OT the specializes in working with kids who've come from environments causing severe sensory deprivation, such as orphanages and institutions. She did a quick assessment, but not super in depth only because I'd already done many things at home with Axel and gave her my input.

Still, it was interesting to hear what she had to say about those things, particularly the fact that at 10 Axel has not yet developed handedness. (ie, preference for left or right hand dominance) I have been just trying to figure out which side seems stronger to me, and encouraging him to use that side. She told me to wait. (ok, she practically begged.) Because he hasn't had exposure to large or fine motor experiences, 1) he hasn't had a chance to build enough strength and 2) his brain hasn't yet determined dominance. Well DUH! That makes a lot of sense! She gave me lots of suggestions on things to do at home to encourage him to use BOTH sides, particularly crossing midline since that's an issue for him. The difficulty will be with school and encouraging THEM to not force him to pick a side.

That done, the resident Dr. came in and took what little health history we had.'s very little. I know he had an echo at birth and it was clear. (which means nothing in the world of DS. Angela's was clear too, and at 12 weeks old was discovered to have a HUGE ASD!) I know that he hasn't had any vaccines since he was a year old to 18 months old. I know that his foster family has never had to take him to the doctor. He DOES have a small scar on his belly that looks surgical, is exactly at midline and runs vertical. It is only about an inch long. NO CLUE what it is! It reminds me of a scar from a laparoscopic procedure.

Then THE Dr. came in. Her name is Dr. Kang, and I really liked her. (and I am choosy about my doctors, since we see so many of them!) Axel went right up to her to show her what he'd drawn with the OT, and she was very quick to bring him back over to Dean saying, "Lets bring it to Papa. Papa? Is it OK if I look at Axel's drawing?"

In other words, she was encouraging him to NOT just go to everyone, and that EVERYTHING needs to go through mom and dad. This is a bonding issue, and is HUGE! So many kids with DS will go up to anyone for hugs, etc. (if your child is 2 and doing this, please discourage it. It is a very difficult habit to stop and is NOT cute when they're 6 or 7 in school! Been there/done that with Angela, STILL WORKING ON IT at 14!) Between the tendency that so many kids with DS have, plus the un-attachment to specific people that Axel has, we have our work cut out for us. The good thing is, he DOES look to US for approval for things. When someone is obviously talking to him, he looks to us in a "checking in" sort of way. Some of that could be because we're his only source of communication right now, but it also has to do with the fact that we're his security. This is a good thing. She did give us some other suggestions to do to encourage bonding and discourage indiscriminate interactions with others, stuff that Dean and I knew, but we really need to be more insistent on it with family and friends.

Then she did the physical exam, not finding anything that was surprising to me. She also pointed stuff out to the resident (like his rotting teeth) so she could see things that are common to children who have been institutionalized.

Next it was time for blood work. Dean came along just for this! LOL Well, ok he wanted to be part of the whole thing, but I was worried about having to hold Axel for the blood draw so Dean came along to help with that. They took 12 vials of blood! They test for just about every parasite under the sun, particularly those known to exist in the country he came from. They also test vitamin levels (particularly Vitamin D) looking for deficiencies common to orphans. And then there are the titer tests to determine which vaccines he has/has not had. Axel does have chicken pox scars on his face, and he has a small pox vaccine scar on his arm so those should be clear. Axel did VERY well for the blood draw, as well as the TB puncture. He wasn't thrilled, but it wasn't like battling the spider monkey like at the dentist. I think that was only because he had no idea what was coming!

From there we went to Peds Radiology for his neck xrays for AAI. He was very good for those as well, and it took longer to get the paperwork done than it did to do the xray series.

We left with referrals to peds. cardiology and ophthalmology. Having the clinic get these appointments set up means getting into the other specialists MUCH faster than if I set it up on my own! He'll be seeing both of them at the end of this month, plus the ENT next week. That means we can get all necessary specialists in so we can coordinate the ones who will need to do work under sedation when he has his dental work done.

So, we're moving right along! The upcoming medical appointments, combined with school assessment means the month of January and early February are going to be very busy!


Becca said...

Wow, how amazing that a clinic like that exists! That's great, and certainly *does* sound interesting!

Rachel said...

Thanks for posting about this. Did you make your appt after you came home, or before you left?
The head doctor, Dr. Johnson, was one of my son's doctors in the NICU. Maybe we'll see him there. :)

Leah said...

Rachel, yes I made the appointment after we got back. For older kids (I think over age 6) they want them home AT LEAST 3 weeks before they're seen. For younger kids they want them seen as soon as it can be scheduled. They were INCREDIBLY nice, there. I swear, treated us like royalty!