1. Eye clinic: right eye isn't any better, but no worse as far as prescription is concerned. The patching isn't improving her vision, but if we weren't patching, it would be so much worse. The short end of it...original cancer surgery caused the brain to shut that eye off when they crossed. Some vision came back when we began patching 4 years ago. It is a significant vision lose, only near sighted, she can't see far away. The right eye veers off more and more often. We will do some exercises to try to strengthen it, but we are possibly looking at eye muscle surgery.
2. ENT clinic: No good news here. We are stuck. Ivee suffers from radiological chronic sinus issues. Radiation has affected her sinus passages causing her secretions to be thick and it will be this way. That's it. We will continue doing what we are doing, but we will keep a warm humidifier in her room from now on as well. We will treat her as infections come and go with antibiotics. She will find it easier to deal with as she gets older, and she learns how to clear it. Either by blowing her nose, coughing, learning how to spit, etc. all which is difficult for her due to vocal cord paralysis and the inability to control throat and tongue muscles.
3. Scan: Yesterday Ivee's blood pressure and pulse were high. This is probably due to the albuterol treatments and Sudafed. Both can increase heart rate. As we went back for her scan we checked her stats, and she was a tad bit lower, but Ivee's O2 stats began around 85 and would pretty much stay there. There were times I had are her cry or made her cough, he would come up to the mid 90's, but she falls right back down to 85 or lower. So, without intibation, it wasn't happening. I didn't want to inibate, because it makes it very hard on her vocal cords. Dr. Merchant wasn't to keen on sedating her as well. He has nothing against intibating, but with all the damage/issues to Ivee's brain stem, he didn't want to chance anything with her respiratory system. He stated that he would be comfortable waiting a few months to scan being that there was nothing significant of concern on the last scan. Emmett and I are less comfortable waiting (Emmett for sure!) but we are trusting that she is healed any way. So, I'm going to keep in touch with nurse Christy, and we will try to get her up here for scans when she is having a good week with her sinuses. Yea...let's see how that works out.
4. Tomorrow we see GI and Endocrine. We will address the constipation and stomach issues.
5. In good news. She has gained 2+ pounds since November and grown 1 inch. This is since she started GH on December 6th.
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