Tuesday, December 6, 2011

An update

I haven't been in the mood to blog much lately as the holidays approach and Jebriel is still stuck in Ethiopia, and haven't had much time either, but here are our updates:

We were cleared to go pick Jebriel up-except that our fingerprints expired 2 weeks before so now we're trying to get USCIS to expedite our case and figure out the system that makes no sense at all (every person we speak with gives us a different story). There is still a tiny chance that he'll make it here just before Christmas, and if not, it will be shortly after. We decided to 'postpone' our family Christmas until he gets here so his toys aren't sitting sad and unopened. Santa will come late, and we'll do presents and stockings and all of that fun whenever he gets home.

Which brings me to Christmas cards. We are going to send them out, but since we always do photo cards every year, we couldn't bring ourselves to go get pictures done without him, so it will be more like New Year's or Valentine's cards. But we will send them :)

Journey had her appointment with the genetics doctors where they inspected every inch of her and asked lots and lots of questions. It's a LOT of words I don't know but he did notice a difference in her hands that our hot shot hand surgeon was too busy to notice. Basically where we have knuckles, then a bit of webbing, and then our fingers, Journey has knuckles, more hand, then webbing and fingers. I tried labeling in this picture, clicking the picture will make it bigger, but BE WARNED this is from a couple of weeks after her surgery so there are some stitches! Once he pointed it out it became soo obvious but nobody else had ever noticed before.

The genetics doctor confirmed what I already knew, she definitely has some kind of genetic syndrome, but not an obvious one. So he gave us a lists of tests we have to do to help narrow it down. We already did the ultrasounds of her kidneys and bladder and her full body survey, which is x-rays of every part of her. She still needs a blood draw and hearing test and tomorrow we go in for an echo-cardiogram-checking out her heart. They need to check all of her organs because a lot of genetic syndromes come with issues on the inside as well as the outside. He may also want to do a brain MRI but wants to wait and see if they can narrow it down before that because it requires her to be under anesthesia. 

He also said that based on his evaluation she should be getting help from Early-On, so he called and had them schedule an appointment with us. I wasn't really worried about her language delays, he said she was 5 months behind and she had only been home for 5 months, but she also has eye and hand issues that they might be able to help with so we scheduled an appointment for an evaluation.

Yesterday the worker came out to do her evaluation. She was really nice, and an adoptee herself. She asked a few questions and I had filled out a giant packet beforehand, then she had a bin of different activities to see how Journey played and responded to things. She did pretty well, and at the end she told us that she wouldn't call her language delay an actual delay, more like she's just catching up from spending her first 15 months in another country. She did recommend we get an appointment for occupational therapy and physical therapy evaluations to see if she has any developmental delays and if they can help us help her cope with her missing fingers, and maybe her eye issues. She has almost no depth perception and it worries me, and I don't think glasses are going to help much because the glasses won't be under her eyes. But that's another appointment :)

Jenavieve has been sick for the last few days :( but other than that has been great! She is completely 'potty trained' -not that we trained her, it was all her- and will have mayyybe one or two accidents a week if she's having too much fun to stop what she's doing. She still wears 'sleeping diapers' at night but is almost always dry in the morning. 

She is loving dance class and doing really well with it. She also loves the other girls in her class and talks about them all week. A couple of weeks ago there was a new girl named London and she was so excited to have a new friend and to show her the ropes.

We have been getting ready for Christmas, decorating the house and trying to explain Santa. I used to think we had a decent amount of decorations until I unpacked them at this house. There are more rooms here and all the rooms are bigger. We'll have to work on that! I'll do another post of tree pictures.

I just got over a bad cold that left me feeling drained. I'm enjoying having my energy back! And Eric is good, as usual. Busy with work, school, and church stuff and working on doing various projects around the house. He's becoming quite handy, installing doorknobs, shelves, and smoke detectors!

So that's our update, and I'll try to be better at updating more often so you don't have to read a novel every time I slack for a month ;) Hope you're enjoying the season!

1 comment:

  1. So I haven't read your blog in forever, but I wanted you to know that my older sister has no depth perception. She has glasses for other eye problems, and they don't really effect her depth perception. She has however learned to judge depth in other ways and she does fine (aside from a few car accidents, but those could easily be contributed to being a teenager just as much as her eyesight).
    She says she first learned to judge depth by observing shadows and how light moved around objects. I wish I could explain it better, but it's not like I can say I've experienced it. I assume she uses the shadows to gauge how far away one thing is from another.
    Anyway, I just wanted you to know that just so you didn't worry too much. There are plenty of fully functional adults with very little or no depth perception. If she can overcome everything else she needs to (and she will!), that should be a cakewalk.
    Good luck, and I hope Jebriel finally comes home soon!