So I mentioned in our last update that Annabelle was dealing with a pressure sore at the point of her kyphosis that was being aggravated by her body brace. At this point, Annie-Lu's skin is fully healed however the plastic surgeon who has been watching the spot closely said that we could not use the body brace until the ortho docs came up with something that does not put pressure there.
We got in to see the ortho and he basically explained that the brace was not corrective in nature. In other words, the brace was not going to make Annie's back any straighter nor would it halt any possible future progression of the kyphosis. The brace was really more for her convenience in terms of giving her more support in sitting upright.
At 14 months, Annie still does not have the trunk strength to sit unsupported. She is fine in anything with a 5-point harness (stroller, highchair) and can kick-stand it for a while by planting her hands between her knees and propping herself up.
The ortho cleared us to not use the brace and said he would like to see us again in two years, barring complications.
I asked the doc how we were eventually going to get Annie's spine straightened out (I assumed surgery once she has stopped growing) and he said that right now there really are not any options for straightening it. So that was discouraging. But we continue to have faith in God's healing, and a focus on Physical Therapy and hope for future breakthroughs in medical science.
So for know we rely on home-made foam cut-outs for padding when Annabelle is sitting with her back against something and sleeping on her tummy instead of her back. And, of course, lots of therapy workouts.
So that is that.
When I was a child growing up in LA, we would take an annual trip to Disneyland. There was always a contest between the kids to see who could spot the tip of the Matterhorn from the freeway first.
As a kid, we would see that snow capped roller coaster come into view and we knew we were THERE! WE'RE AT DISNEYLAND! Well, actually, no. We were still in the car on the Interstate. Then we would pull into the parking lot and WE WERE THERE! Well, actually, no, we were still in the car circling through the Donald Duck and Goofy parking sections. But you understand. As kids we wanted to BE THERE so badly that we started announcing our "arrival" 30 minutes before the tickets were even bought.
For months now I have been saying that we are nearing the end of the medical marathon but now it feels like we are in the magic kingdom staring down Main Street. There is nothing left but to grow at this point.
Most of our doctors are seeing us on a 6-month to yearly basis now. and we have TWO! COUNT THEM ONE - TWO. Doctor's appointments between now and February (not counting 3 therapy sessions every two weeks).
Annie's favorite finger goods are Cheerios, Kix and Veggie Straws (Costco). She seems to laugh and giggle more and more each day (as if it were even possible) and is working on her words. It seems that she has "good girl" and "dada" down fairly well if you listen closely. She has started to laugh at things on the TV that tickle her (videos to be posted eventually!).
Mobility is the next big step and I recently pulled plans off the Internet on how to make an infant wheelchair-cart-thingy out of scrap lumber (no company currently makes them). But more on that later.
As we continue to wind down this intensive time in our lives, we are hoping to give back to others coming along "behind us" for lack of a better term. We have signed up for a pilot program that Mary Birch may be starting to pair former NICU parents with current ones. There are a number of families we are in touch with and praying with who are going through high-risk pregnancies of their own. And of course, there is the SB Guide Blog and our dream for a foundation.
Thank you once again for your many prayers and support!