Overall Ms. Josie seems to be doing very well. She has a lot of energy, and I saw something new just the other day - muscle tone. Jose is such a skinny kid she has little toothpick legs without much muscle on them. But, although they are still skinny, her little legs have developed a bit of definition and she loves to run and climb. We are not expecting marathons, but she is having a good time most of the time.
On the not so sunny side, Josie's little body is still struggling with the subcutaneous medication she needs. We have just about run out of good spots to place the delivery site, so have made the very hard decision to switch to a central line.
A central line will be much more comfortable for her once it has healed, but it has higher risks we really wanted to avoid.
We will be working on scheduling her surgery.
One ray of sunshine is that an oral version of this medication has been approved for adults, and we are very much hoping Josie can be part of the pediatric trial for the kids version.
So we are hoping a central line is a very short term solution indeed.
We would appreciate prayers and kind thoughts for wisdom for us and the docs, for safety, for everyone's learning curve, and ESPECIALLY that the trials for the oral medication start soon and that Josie is an ideal candidate!
Thanks all!
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