(above was taken at the baptism of Findley's cousin's baby boy. Virginia loves a baby almost as much as her mama does.)
I realize that when certain things are going well, I forget to post about them. Here is a little medical update on Virginia.
For of all, it is December and she has yet to get her nasty cough. I look back to two years ago and the utter misery of her having to cough for five hours in the morning to clear up what had drained into her lungs over night and I can't believe it, but we don't have a cough right now. She has had the mystery drainage since the beginning of September and usually the cough appears about a week after. There is no cough. I have no clue why, but I am thankful. I need to be more thankful, actually. So when I am complaining about the next bump in the road, please remind me of God's faithfulness in what was an all-consuming issue and major detriment to Virginia's health and longevity. I know it could come back. I know she is still weak and the basic issues are still with us, but today I am thankful.
We are getting a second opinion on all the heart issues January 21st. Still not ready to go into detail. Any one of the three (if she even has them) could be non-issues or issues now or in the future. Findley liked the guy we saw a few weeks ago. I thought he was a young whippersnapper, but maybe just because he threw me a curve ball I didn't see coming. We shall see....just pray that she doesn't have any heart problems.
And the most fun news is that Virginia is getting a speech device she controls with her eyes. Google Tobii or look at the youtube videos of it. You will cry. It is amazing. When we arrived in Memphis, I was pretty despondent about the speech therapy services. No one had any augmentative communication experience. So I bought Virginia an ipad, picked a speech app, put a switch next to her head she could click to select, and figured I could teach her myself. Ha! I am a mother, not a therapist. Learned that lesson a million times over the last ten years, but can't seem to remember it.
Enter Lauren Lennon. Lauren trained in augmentative speech at Boston Children's Hospital and it is her true calling. She is here for a few years while her husband finishes his residency...and maybe for a little longer;)
Lauren started working with Virginia this summer. Virginia made great improvement, but it is slow and tedious. There are nine words on a page and the cursor moves every 4 seconds. When it gets to the word she wants, Virginia turns her head to the side and clicks her switch. If she selects "Something is wrong", the next page that pops up has nine things that could be the problem- I'm hot, I'm thirsty, I'm lonely, etc. We worked really hard on the layout, trying to guess what might be most important to her.
Now we can put that same layout she is used to on the new Tobii device. In the trial runs, she has done amazingly well. Not a dry eye in the room. Now instead of waiting 36 seconds to get to the last square on the page, she can just look right at it. I will post a video when we get our device. Pestering Blue Cross is my other job. I bet we get it before January 1, but we shall see. If anyone has free time and likes torture, let me know and I'll give you the Blue Cross number and you can call, too!
Last news...we are going to the seating clinic at Scottish Rite Hospital in Atlanta to see if they have any suggestions for a chair that might slow the progression of her scoliosis. There is no medical literature to suggest anything helps. A hard brace doesn't even help, but I feel like we have to try and it's time for a new chair anyway.
Thanks for all your prayers!