Having problems with message search?
Well, I believe we have hit a nerve.....hives!!!!......it is probably the one symptom of our children that people (even parents) can not accept. Alice has hives, always. They are on all parts of her body. Sometimes they are light but other times they are raised, itchy and they hurt. I can only think of 1 time when she was completely clear and that was when she came out of surgery from having her G-tube put in. She was 1 1/2 yrs old then. We have tried lots of Rx but nothing works. I'm praying that the new drug that the NIH wants to start the children on will help!
When we were at the NIH we also had a very busy, but good week. We started at 7:30 by giving blood. They took from me as well as Alice. Near the lab at that time of the day there was always a continental breakfast (juice, coffee, danish, fruit, yogurt, etc......). That was helpful since labs were sometimes "fasting". That week we saw dermatology, neurology, ophthalmology, audiology.....she had an MRI of her knee, MRI of her head, a skin biopsy, bone density test, x-rays, she saw P.T& O.T collected a 24 hr. urine and pictures of Alice in her bathing suit. We did a lot of hurry up and wait. In each clinic there was always juice and crackers. We had a base in the clinic/hospital at 9 West. We would go there after blood work to get vitals, etc......if there was a break in our day we would go back there, there was a playroom with crafts, videos......Also on 9west you would order off a menu for your child. Parents and other children were on their own for food. During the whole week, we did a lot of hurry up and wait. Janet Jones did a great job of facilitating each day. This was our schedule yours might be different.
Like you have heard, going back to the Children's Inn was your "reward" for the day. For the children they looked forward to playing, I always looked forward to chatting with the adults. I felt blessed having the Griffins there the same week we were there. We did a lot of comparing notes!
There is a shuttle from 2 airports to the Children's Inn with specific times. Check into that. We have not heard when we will be going back yet. Next time will be easier. Hopefully this has been helpful.
Blessings to all,
Camille Lieffers
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.449 / Virus Database: 251 - Release Date: 1/27/03
Offline 
Send Email