Friday, August 17, 2012
Medically, she still is going to NIH every 3 weeks to receive her IVIG and exams from the Dr., & the derm and ENT clinics. It is pretty routine by now. Her Hypertonic nebulizers are probably doing the trick for her lungs, but we won't know until after her October scans. Her eyesight has worsened some and the molluscum is causing some infection because it has blocked her tear ducts in both eyes. It is also causing her eyelids to be bulky and swollen. We saw an Oculoplastic surgeon this week in Indiana. He will be trying to put in stints to open her tear ducts or creating a new tear ducts. He will also de-bulk her eyelids. She will be seeing a facial plastic surgeon in Sept. to see if he can successfully remove it around her mouth and chin areas. If so, they will be sharing the OR to get this done in October. She is scared, but oh, so ready to have some relief. Her chest, abdomen, and pelvic CT's will be done in October. This is her cancer check-up and GI scan to see if the steroid treatment has worked with the thickening they found in April. Praying that these will prove to be negative in every way.
As she approaches the school year, the travel to NIH, the surgery, and her every day dealings with this disease, she needs prayer to sustain her emotionally, physically, and spiritually. We thank you for carrying this burden with us.