Ava's echocardiogram this morning showed absolutely no sign of any heart defect! Whether it closed up on its own, or whether she never had a defect in the first place, we will never know. What we do know is that we can scratch "heart surgery" off our long to-do list. (The tech did say we will get the official report on Monday, but as far as she could tell, there is nothing to worry about as far as her heart is concerned).
The earliest speech and feeding specialist appointment we could get is the end of March (bummer), but we were able to see two physical therapists for an evaluation today. They were so great with Ava, and very optimistic about her potential. No promises, of course, but they both really felt the same thing that so many others have told me. She has not been given a chance to grow, develop, crawl, interact with other human beings. Once we can get her nutritionally stable and bonded to a family, she will flourish. Meanwhile I am giving her Pediasure four times a day (man, that stuff is expensive!)
The therapists showed me some floor positions to start working with her on, encouraged her to sit up on our laps, forcing her to strenghten her upper body muscles, practice her balance, even bear weight on her knees. They gave me some ideas for what kinds of toys to get for her too. I was amazed at how excited she got just entering the therapy room. She started breathing really fast and flapping her little arms. It was colorful, bright, very well lit, and there was a giant mirror on one wall. My house is too dark. This is a problem. Because we have high ceilings, we have no overhead lighting and we just use lamps. I could see that she will really respond to a brighter room. I'd gladly take suggestions. I'd even move, but things are going to be a little too busy for a move anytime soon, I think.
We are going to start therapy once a week (PT for now, OT and ST later), and gradually work up to twice a week. We plan to take advantage of the public education special services too to help with the cost. It was a great day! We have a plan now, plenty of helpers, and a hope that Ava will indeed reach her full potential. We consider it an honor to be such an important part in helping her reach her fullest potential. She is a gift from God, a jewel, worth every cent and every bit of effort it takes.
11 comments:
Wow! "heart surgery" is a big thing to cross off of your list!!I'm also so glad that you were able to see get Ava in to see Rachel and the gang today. Such a flood of good news! PTL!
How wonderful, I'm so glad you got such great news!!!
About the high ceilings-dark rooms; you could put in a "fake ceiling" and run a cable on the top of it and through a hole, to hang a light. A know people who have done this. You could only do it in one or two rooms, and use those rooms as "therapy" rooms, when you want Ava to be stimulated. I don't think it would be very expensive...
Anna
That's great news. I've been following your story via RR. Ava is a beautiful little girl and will just blossom in your family. I have found that Walmart brand of pediasure works just as well and is about 3 dollars cheaper than Pediasure. Good luck on therapy. The school system has helped us with ST. They are not so good with PT but with lots of kids to follow around, I suspect Ava will be motivated to do her own PT.
Jan
Try making some PUREE of some Mexican beans to put in that bottle with the Pedisure. Looks like you've got a plan and Life's Race has begun!
Charissa-
Hello. I have been reading your blog since prior to Ava's adoption--hooked up through a friend's adoption site. She is beautiful and I am so thrilled to see she was welcomed into such a loving family. About pediasure, I am also a registered dietitian and have worked in both WIC and w/dev issues through our local hospital. WIC can provide pediasure for Ava if you have a doctors rx for it. Also since you are pg, you qualify for the program too through out pg and up to six mos to a year after delivery(a year if your are nursing). Any child you have under 5, can also qualify. I believe you would qualify as a family of 8 w/new babe and the income limit is 63555/yr. Here is a link to the program
http://www.fns.usda.gov/wic/aboutwic/
if you have any ?'s put them w/this post and I would be glad to respond. hope this helps.
Anonymous dietician,
Are you saying that we would only qualify for this if our income is less than the stated family income?
I appreciate your input. I will look into it more.
Charissa
my email is charissaurban@yahoo.com
I was going to suggest WIC too, sometimes the kids may qualify on their own, regardless of income. Definitely look into it, that's how we get Timmy's Pediasure, we feed him a 6-pack each day. Always use the kind with fiber! We feed him via g-tube so the Walmart brand doesn't work as well for that, but by bottle it should be fine.
It's a miracle Ava doesn't have to have heart surgery, Thank you Heavenly Father!
Dolores
This all great news! It only keeps getting better!
Charissa,
Xander got his Pediasure through WIC too. We got a prescription from the doctor. That, along with the "failure to thrive" label made it a done deal. So, you need to check into that for sure! Your doctor will need to include on the prescription how many cans she needs per day and how long she needs to take it. Our pediatrician put 3 cans a day indefinnantly. It kept us from having to get a new prescription every month. Also, make sure you buy the Pediasure with fiber!
Great news about Ava's heart too! She'll be sitting and moving all over the place before you know it!
We were a little over WIC's qualifications for income but because Mercede was so tiny we still got to receive it and that is how we got her pediasure.
Now they did require I attend nutrition classes because Mercede was so underweight, but hey free pediasure was worth it. I am not sure you would qualify but it is something to look into. I would call their office.
Great news on her heart. That is just such wonderful news.
Oh, this is great news! Yay, no heart defect! Whew!
I'm so excited you are starting therapy ... I can't wait to see how fast she excels!
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