At Travis' clinical trial exam in January, the geneticist recommended Travis see an opthamologist in the group at Primary Children's. I called in January and the soonest appointment we could get was mid-March. No big deal. Unfortunately Travis got sick yesterday morning and was sick enough to have to reschedule the appointment, now the end of May. We can call and see if someone has cancelled between now and then.
Travis feels better today than yesterday and has been playing up a storm. :) Hopefully this stomach bug will leave the rest of us alone and not return.
Travis has been asking to see the reflexologist again. We had him scheduled for yesterday, now he's scheduled for the end of next week.
Travis sees Dr. Lor Randall next Tuesday. He is the orthopedic surgeon added into the mix and would be the one doing any surgeries, if needed, regarding the plexiform. Monday, after physical therapy, Travis will see the orthodic people at Shriners to add more to the lift on T's right shoe. I'm not sure if they can make the additional part during the visit or after we leave.
The US Congress votes to fund the Congressionally Directed Medical Research Program (CDMRP), the rapamycin clinical drug trial is funded through the CDMRP. Without such funding, many advances in NF research would not be possible nor the chance to slow down T's plexiform growth. Please consider using this link CDMRP Funding Support to fill out a form to send Congress a message of your support for this program.
We appreciate all the prayers and support for Travis and our family. Thank you.
You are constantly in my thoughts.....I hope today is a good day. Much love and strength, Nickie.
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