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!"

Friday, December 30, 2011

3 weeks home: Asher's Update

Wow, where do I start with this? How about a couple cute pictures?

Let's tackle the medical first, shall we?

Eyes: Asher can't see much. We don't know how much is "not much" but we know it's not a lot! He LOVES shows like Sesame Street or Sid the Science Kid because they have super bright colors. But, he only likes them if he's within three feet of the tv. He will laugh like crazy at the characters moving around on the screen but if he's any further away you can tell he can't focus enough on them. Also, see how his head its tilted in the picture above, and one eye is focused and the other is not? That's because he needs to tip his head to focus one eye, while the other is basically non-functioning. When he walks his very toddler-ish walk with hands in the air its not for balance but a protective reflex so he can kind of feel his way around. All three kids have eye exams together on the 13th. They told me to plan on being there 4-5 hours! Dean will be taking off work that afternoon to join us. ;-)

Tonsils and Adenoids: OMG I have never seen tonsils so huge!!! These are not Asher's, but they look similar:

The difference is that Asher's are BIGGER! So big, in fact, that they're overlapping instead of pushing against one another. This would be why Asher cannot eat solid food. There is nowhere for it to go. It's also why he has to create an odd sucking system between his palate and tongue because the food has to move ABOVE his tonsils, which is the only place for it to go since his tonsils are too large for the food to move below them. So my attempts to get him to chew solid food have been put on hold and he's left with applesauce consistency until we can get these removed! Obviously the thrashing around in his sleep is what I suspected...obstructive sleep apnea. Asher also came home with strep, and now everyone on the house has it. Yay us!  Asher and Axel will be seeing the ENT together. (and yes, kids can get strep without tonsils. Angela has it, and she had her tonsils removed when she was 9.)

Urology: I wasn't going to talk about this on the blog, but its relatively common among little boys with DS, and there are a lot of parents of new babies or soon-to-be adoptive parents of kids with DS here. Little boys with DS have a high incidence of urological issues. Nuff said!

Hearing: Asher's hearing appears to be 100% fine! Even so, we'll be doing an ABR in combination with the procedures above. Because we can.

GI: Asher will also need to have a colon biopsy done. He has many of the symptoms of Hirshsprung Disease  Hopefully we can combine this with the other surgeries mentioned above. (We call these "Tune-ups" by the way. With Angela we often did several procedures at once to decrease the number of times she's under general anesthesia. Even with combining things she's been under more than 30 times!) His appointment with the GI doctor is coming up soon!

Speech/communication: Asher is not talking at all, and still just playing around with making sounds. He was largely silent in the orphanage, and I would put my money on him  having been medicated while he was there. Now he is making all kinds of silly sounds. Our personal favorite is his loon laugh! (Sounds just like a Minnesota Loon!) He is signing quite a bit, though now I realize his funny handshakes are because he can't really see us! Still he can sign more, all done, bath, eat, milk, hot, mom, daddy, milk, bye bye and hi. He's doing GREAT! Can't wait to get some glasses on him so he can SEE Signing time! I think he'll really like it. He tries to imitate now but he cannot see what they're doing on the screen. Here's a video of our own personal Loon!

Dogs: Asher loves the dogs now. Let me rephrase that...Asher loves to use the dogs now! LOL One day shortly after we came home he was standing in the kitchen with a dangly toy. He hadn't really noticed the dogs at that point. Dudley happened to stand next o him, wagging his tail, only his tail was bumping Asher's dangly thing. Asher thought this was pretty funny and started laughing. Dudley moved a bit and Asher moved with him so he could keep using his tail. From then on the dogs have been under Asher's constant surveillance! He has discovered that when you're tired, dogs make a great place to stop for a rest.

Sometimes when you need to get a good look at the dog, it helps to get underneath him.

All in all, Asher seems to be adjusting quite well to being in a family. He is loving moving about the house at will. At first he didn't acknowledge the other kids unless he wanted to be picked up. Now he seeks them out and will hold a dangly toy while he watches them play, often laughing hysterically at their antics. He loves when Axel takes out an easier toy and shows him what to do with it. We think part of the reason he doesn't play with toys much on his own his because he can't see them. There is the whole issue about never having learned HOW to play with toys, but we suspect there is more to it than that.

So there's your Asher update at three weeks home!


Sheila said...

Masha's vision is perfect now that her direction and alignment have been adjusted. She can see but she was seeing double and at an angle! No wonder she couldn't walk a straight line! Does Asher tip his head constantly to one side? Masha's facial structure was changing due to this. Asher sure is a cutie, I hope we can meet him soon but it may be better if he can see first because I can see Masha swooping in for cuddling on him. (She torments her cousin Chase, who she also thinks is too cute!

Deborah said...

Leah, he is just beautiful! The video of Asher and Dean totally brought tears to my eyes! Dean is such a natural daddy!