Very, very suddenly I feel like we are making some real progress! I am not sure where credit is due - the alternative therapies we're doing? the occupational therapy? the daily therapies I do with her? just the mere passage of time? Whatever it is, I am feeling so very thankful to see a ray of sunshine. God's grace indeed.
We had a good week. To break it down:
First - We had two doctor's visits this past week, a visit to a pediatric orthopedic specialist and her third or fourth visit to the neurologist. For the first time ever, these were pleasant appointments. Usually appointments are neutral at best (when they are a rehash of known problems) and attempts not to cry at worst (when I'm told new problems).
The orthopedic specialist was very encouraging and told me that her spine looked good and that her tone was "fantastic" considering that she has low tone. He was enthusiastic about therapy and said to keep doing what we're doing. He is a bit concerned about the curvature in her lower back though and he will look at the results of her upcoming brain/spine MRI. We'll check back with him early next year around her birthday.
The neurologist was also very encouraging. She said that it was great that J was progressing so well (we were watching for any regression which would be a huge red flag) and that her tone seemed better (i.e. she is beginning to compensate for it - hypotonia is not something that goes away). We'll see her again in December, after we meet with the geneticist. If there is nothing huge discovered on the MRI or with genetics then I imagine that we will be released from neurology at that time.
Second - I have noticed in just the past week or so that Juliana feels stronger and sturdier. Sometimes she can sit on my lap with minimal support. Just today I laid her on the floor and when I looked over a minute later, she was on her stomach and lifting her chest off of the floor. She's been rolling for some time but she hasn't been very good at it - she gets stuck easily and never before has she been able to lift herself up like that.
Third - We're making good progress with feeding therapy. She is learning how to drink through a straw which is both cute and messy. Today she drank some water and then ate about an ounce of chicken broth "jello." (Yummmm!)
There are still a few things that we are really wrestling with. Always on my mind is what she gets for nutrition. I have a love/hate relationship with her formula (Elecare). I hate that she is on canned nutrition, yet I am so thankful for it because it is what stopped her pain. We've been trying different foods and usually have seen success, yet we're not at a point where I can feed her a diet of entirely real food. I think I would be at peace with the slow progression of things IF she ate orally. However, she does not, and this really presents a problem as she does not seem interested in drinking the formula. I think that she will be tube-fed until she can be free of the formula.
I would appreciate prayer for her upcoming MRIs (10/17) when she'll be under general anesthesia for two hours. At that time she will also have her PEG feeding tube replaced with a Mic-Key button. (Think of it this way: instead of a surgically implanted straw going into her stomach, she will now have a little beach ball valve in her stomach). I would appreciate prayers that this would go smoothly and that the new g tube wouldn't cause any additional reflux or pain.
At this point in time I am not too worried about the actual results of the MRIs. I know that they will tell us something about her condition, and I'm hoping it's more on the benign side of things. She's been doing pretty well lately and life has been fairly sublime (apart from constant therapy appointments, worry over allergies, worry over anesthesia - you get the picture!)