Sarah saw the geneticist this week. She was originally diagnosed with neurofibromatosis 12 years ago. Back then there was no genetic testing available. At the time she had the bare minimum symptoms to be diagnosed with NF1. Over the years she has seen many specialists. She also had annual MRI's for an optic glioma. Several years ago she developed an allergy to the contrast that is given during the MRI. The optic glioma didn't change in all the years we had the MRI done. One technician even suggested that perhaps it was just a thickening of the optic nerve and not an optic glioma.
Well, after Sarah developed the contrast allergy I decided that she would not get any more MRI's unless her eyesight changed rapidly or she developed other symptoms. We also stopped going to the neurologist and endocrinologist for annual check ups. They just seemed pointless since nothing new was ever going on.
Since it had been so many years since her diagnosis we (her doctor and I) thought that she should be reevaluated. So Sarah and I got to visit the geneticist. Sarah had a group of 4 doctors poking and prodding her. They said that she definitely has NF1 but it is a less severe case medically. They do believe that her LD are a result of the NF1. She has about 10 cafe spots, just a few lisch nodes, couldn't tell if she had freckling in the right spots because she is thoroughly freckled all over. She also has one small neurofibroma on the sole of her foot.
So, in the end they agreed with our course of action. They said not to worry about the optic glioma unless her eyesight changes rapidly. Don't worry about all of the specialists unless she has a new problem crop up. Don't worry about the neurofibroma unless it starts to grow and causes problems. They said that they would send us a reminder to come for a recheck in a year but that if we had no new concerns don't bother to come in. Apparently she has a chance of developing high blood pressure so we should have that checked annually....that one was new to me.
Sarah did well when they were talking about everything. She has heard it all before and has always known that she could give it to her children. However, when she came home she looked up neurofibroma and realized that it was a tumor. She panicked at that point. I explained to her that it may never grow and typically they are not cancerous. Apparently having a neurofibroma is not as scary as having a tumor.
I also had Joselin in to see the doctor this week. She is now officially 18 years old so she had to have a medical statement done for foster care. Next she has to get fingerprinting done. Seems like there is always something that has to be done with foster care.
I received a call from an adoption social worker this week. I asked her my rote question; will my 5 and 7 year old children be safe with your child(ren)? So far I haven't gotten any further that that. It still saddens me every time. I don't know how I will react if I ever get a positive answer to that first question.
Other then that I have been doing laundry, preparing paperwork, making arrangements, prepping the house and pets for our vacation. Our doctor was kind enough to give us motion sickness patches just in case. I hope we don't run into any hurricanes.
Tomorrow I will be packing. I am running out of time so I guess I should get packing. I did get the suitcases down. I know....procrastinator.
We also received a package in the mail from http://casselcrew.blogspot.com/ I won a contest on her site and received some books in the mail. The kids are really enjoying them. Thanks...
I just realized that I need to cancel the paper and mail. Oh, and get my oil changed. Yea, tomorrow will be a busy day.
Have a great night!
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