ok. We had to have some cultures taken last week on the toe and we got the results last Friday. She has a Staph infection and seems to have had it for quite some time. We have been fighting this toe issue for a month or more. She has been on and off with fevers for the past couple of weeks and is pretty tired throughout the day. She has been taking a lot of naps now. We know the dangers of the Staph infection in a person taking chemo so we're being super precaucious on people visiting and being around her.
Kris and I are working hard to get her strength back up.
While talking with doctors throughout the day on Friday I was also at the eye doctor with her. She had a follow up visit from her February visit. We went in before chemo started and this was a check up to see how her left eye is doing. In Feb it was 20/25 and now it's at 20/70. The doctor said she had to wear the patch 3 hours a day. Well, I know this won't happen and it's very hard to make her keep it on. So we talked and he decided it would be best to use eye drops. Twice a week we put a drop of this solution in her right eye which in turn causes it to blur so she is forced to use the left eye.
For now we will not use glasses as the doctor would like her brain to start using the eye again. Spoke with the doctor about surgery and more than likely she will have surgery on the eye when her chemo treatments are finished to tighten the muscle.
Today was the first day of the drops and she had a very rough time with it. Not only dealing with an infection and more new medication (that is horrible by the way) but to not be able to see. She was very upset she couldn't focus on the TV and she tried to cut some cards out with scissors but couldn't see where she was cutting. She stomped around saying we were mean to her and that now she can't do anything. Even taking a shower didn't go over well tonight, finally she just asked if she could take a bath to make it easier.
Needless to say, Haven is handling everything as well as she can and we're being super understanding of her needs. We just try as hard as we can to make her happy and to give her big hugs as much as we can.
She sees a Podiatrist this Tuesday to check her toes and chemo is next week. Then we have a meeting with her Endocrinologist the following week. The next MRI is coming up in November and then we're off to the sleep study. It will be a very busy schedule from now through Christmas.
We hope everyone had a great weekend. Happy Birthday to Candy (last week) and my mom (in Korea). We miss seeing the family.
Take care...love to all
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Sunday, October 12, 2008
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