Business, as in busy-ness

Usually I spend the summer getting all the kids medical check ups done so I don't have to do them during the school year. This year several kids need some things done under anesthesia and I was trying my best to get it so each kid only had to go under anesthesia at once, AND so I could spend as little time at the hospital as possible.

That was a fail.

Instead, I couldn't get everything scheduled until this month, and Abel's are all spread out over a couple of months.

So here's what the line-up looks like.

August 29th, Angela and Axel will be having stents put in their tear ducts. Well, Angela is also having reconstructive work done on one eye lid (she's missing both upper and lower ducts on that side) so hers is a little more involved. She had this same surgery done when she was 7 but she pulled the stents out after 2 weeks so we decided to wait until she was older to try repeating it. Two kids but minor procedures so we should be in/out of the hospital relatively quickly. Angela is excited she's getting an I.V. (yes...she loves to have an I.V. Goofy kid!)

September 12th Abel will be having all of his dental work done. Many teeth pulled, some restored, and what's left will be cleaned. I cannot wait to get this done! I wanted to do it a couple months ago but we were trying to get all the specialists coordinated and it just didn't work out.

October 14th Axel will be having minor dental work done under anesthesia. He's petrified of the dentist so this is much quicker. We should be in/out of the hospital in a couple of hours.

October 22nd Abel will be having his tonsils and adenoids out. I am not expecting an easy recovery for him. He'll also be having an ABR (hearing test) done. His hearing appears to be fine but it's good to get this done since he'll be under anesthesia anyway. Unlike my other kids, he does NOT have a high pain tolerance.

We have a couple things coming in November too, but I'm waiting to get the dates.

And Asher? Well he just lucked out, didn't he?

Shriner's Update

Today was our appointment at Shriner's Hospital.

It was Axel's 2 year post-op follow up. He is doing just great and the surgeon is pleased.

Asher had his c-spine and then full-spine X-rays. He has horrible kyphosis but it is completely positional and not something we need to worry about for now. His AAI is...well...not really AAI.

AAI is movement between the C1 and C1 vertebrae. Last year Asher's was borderline, but now it looks fine, measuring at 4mm which is within normal ranges.

And then there is AOI. That is the movement between the Occipital (the head) and C1. That measurement needs to be under 10 mm, and anything over that needs to be fused. Ashers measures 8.5-9mm. Most kids don't get worse after age 8, but Asher has delayed bone development. So, we're going to recheck him in 2 years and see where it's at. For now he has no restrictions. YAY!

The List

When a baby is born with Down syndrome there are several medical specialists they will see over the course of several years. Some kids only see one or two, some will see cardiology but only once, and others - like Angela - have a large team of specialists is put together.

When you adopt a child with Down syndrome, it's necessary to play "catch up" with all those specialists. Given our history with our kids with DS, there are some specialists my kids see even if they don't have any symptoms because my kids are known to hide things. ;-)

The first thing on the agenda is dental work!!! Check out all the teeth squeezed into his mouth! What you can't see is how many are rotten, or the ones that are fused.

It's very common for kids with DS to not loose their teeth without intervention. When this happens the adult teeth come in wherever they can find space, including the roof of the mouth.

We'll get that scheduled as soon as possible. Since we know it needs to be done under general anesthesia we'll schedule and ABR at the same time. I'm pretty sure his hearing is fine but since he'll be out anyway it's better to just get it done. We also know he needs his tonsils and adenoids out but I don't' want our summer totally messed up so we'll wait and get that done when school starts in the fall.

Last week I made a goal to get all of the medical and educational specialists scheduled that Abel needs to see. Here's who we're seeing in May and June:

Dentist
International Adoption clinic
Ophthalmology (he had surgery for strabismus when he was 6, but one eye is still crossed.)
ENT (tonsils and adenoids need to come out!)
School assessment (so he can start school right away in the fall.)

June:

Urology
Craniofacial (Both Abel and Asher will be seen with a question of submucus cleft or VPI)
Gastroenterology (he has really bad reflux and rumination syndrome.)
Cardiology (he has a history of self-resolved ASD and something with the mitral valve.)

Medical Update

A few years ago, Angela started a medication that caused her to put on a lot of weight very quickly. She'd always been super tiny, and barely on the growth charts for children who have Down syndrome. I remember, just a few weeks before starting that medication, our developmental pediatrician told me we'd probably always have trouble getting Angela to gain weight.

Four months and 22 pounds later, (and 4 inches in height!) with stretch marks all over the place, Angela no longer needed to gain weight. Eventually we got her medication dosage just right so the weight gain slowed. She continued getting taller. She went from 9 years old and 42 pounds/42 inches to 13 years old 115 pounds and 55 inches.

In December her medications combined with her seizures became a problem, so we made some adjustments. The neurologist told us her new seizure medication would not only stop the weight gain, but she'd probably drop back down to her natural weight.

We've definitely been seeing her weight drop, but I haven't stood her on the scale in quite some time. Clothes that were tight on her in December are falling off. Her behavior specialist was here the other day and said in the two weeks since she'd seen Angela it appeared she'd lost even more. Yesterday as Angela was getting in the shower I ran and grabbed the scale.

99.5 pounds! She's lost 16 1/2 pounds! Wow, that's a lot for the small person that she is. No wonder her clothes are falling off! She now sits right at the 50% for both height and weight on the DS growth charts. Since she'll be starting swimming again soon, she'll probably loose a little more, which is fine. If you see her, she has a lot of "junk in the trunk". LOL She has so much more energy though! She'll run around the yard playing all afternoon, and a few weeks ago she ran the mile at school for the first time ever!

Let me just say, I'm liking this seizure medication! Oh, and her seizures have been well controlled too! LOL In fact, since December we've only seen two that we've recognized (one at home and one at school.) and one episode that we questioned if it was a seizure or not, but it was very short so we weren't sure. She also hasn't complained of a single migraine since starting this medication.

Summer is ramping up, and I have most of Angela's free time from now until August 5th all planned out. Remember, a bored Angela does not a happy household make!

Swallowing is back to being a problem. Ok, who am I kidding? Really the dilitation she had done in December only lasted about 3 weeks, but I just wasn't sure how much to pursue it, and finally have decided it's time to stop putting it off! ) We'll be getting some re-testing done, and planning another visit out to Boston Children's sometime around the middle of August to discuss the next option.