Elizabeth continues to do well at home. Her oxygen requirement has increased and her saturation was fluctuating alot so we called and took her in to the Dr today. We think it may be related to weaning her steroids, so her dose has been increased a little and we will remain at that dose for a while until we can see endocrinology again. She will start physical therapy at home tomorrow, she has made lots of progress meeting some of the developmental goals that were set for by the hospital PT. I am hopeful that once we get home PT started she will "catch up" more to where she needs to be for her age. She is still about 14 1/2 pounds, so she is gaining weight but very slowly. Also hoping that being home and having a regular schedule with her feedings not being stopped for tests/lab work she will be able to gain more quickly.
Our newest "issue" is that our there was some miscommuication regarding our medical insurance and we no longer have home nursing care benefits. SO that means that one of us has to be awake all the time to care for her. Talk about stressful! We just found this out on Thurs/Fri and our nursing care officially ended Monday night. We applied for SSI and TennCare but will be denied based on income (since we both work), but are hopeful that she can get SSI based on her actual diagnosis instead which would automatically qualify her for TennCare. I have also taken out medical insurance through TriCare (with the Navy Reserves). But there has been continous drama with not having the proper paperwork for Tricare, and not being able to get anyone to really help at SSI or TennCare. Frustrated is not even the word to describe the past few days. Thankfully my sister came in town and is staying with us for the next week, so hopefully we can get something in place. I would really like to go back to work soon, but caring for Elizabeth is a full time job in itself and not having nursing care makes a big difference!
Elizabeth celebrated her 1st Halloween this past weekend. She was too cute as a lady bug or Izzabug as we call her :)
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