Oh my goodness. What a whirlwind the last couple weeks have been. We rounded out August with a lousy test result. September began with a flurry of doctor visits and more tests.
We opened last week with a visit from Elena’s Nutritionist. She continues to be very pleased with Elena’s weight. For awhile there, we were really pushing the scales! Thankfully, we’ve been able to find the right caloric balance for E and allowed her height to catch up with her weight! She’s still maintaining the 22lb + mark, which still keeps her in the 70th percentile but is nearly 31 inches also in the 70th-ish percentile range. We are so grateful to have found a formula that really seems to be working well for Elena.
Last Wednesday, Elena had an endoscopy. Basically, they take a camera and go down her throat into the beginning of her small intestines looking for clues as to why her reflux has been so brutal. They had to give her anesthesia for this procedure, but thankfully Chad and I were able to be in the operating room for the entire procedure. It was a serious refresher course in anatomy! She had some major irritation in the back of her throat and the beginning of her small intestines. They took blood and tissue samples and we should hope to have those results and more information at the follow up appointment this week. We are praying for some kind of answer that has a medical resolution and not just something that Elena will have to continue to endure.
On Thursday we had a follow-up appointment with Elena’s Physiatrist (her rehab doctor). She was so, so happy with the Botox results! Elena went from being able to move her leg (out to the side) to a 30 degree angle to over a 70 degree angle. That’s pretty much the best result that we could have asked for. She was really pleased with Elena’s continued progress, awareness and mobility. She has started us on a weaning schedule of Elena’s Valium, which we are thrilled about. We have wanted to start coming off that for some time now. We’re hoping that we see more awareness, and less fog as she weans. We just pray that there’s not an increase in irritability…it is a pretty hardcore, dependent drug!
Even though we didn’t get the result that we were looking for on her swallow study, we have had really great encouragement from her other doctors and therapists. We are beginning a huge push in working on Elena’s head/trunk control, oral work and visual processing. These really are three very critical pieces that we MUST have improvement on. We had a new PT start yesterday and I’m already excited to have her on Elena’s team. She came in very encouraged by Elena’s muscle tone and ready push Elena to work even harder. We’re so lucky to have the team of therapists that we do. They all are vested in Elena’s recovery and mean so much more to us than just a therapist who comes once a week. They are our cheerleaders, our encouragement. This journey would be so much harder without them!
Please continue to pray for Elena’s head/trunk control. This is such a critical piece that so much of her recovery depends on. I would welcome a few prayers myself. With our new therapy schedule and new therapy goals, it all can be a bit overwhelming. Our days revolve around therapy and me ensuring she gets a good nap so that she can make the most of each session. That can make for VERY long days! We’ll make it work, we might just need a little patience along the way!
As always, thanks for all your love and support!