May 2006 Update

There have been a lot of positive changes since our last posting. Amanda has had several doctors appointments (neurology, neurosurgery, infectious disease, nephrology/urology). We have also set up her summer appointment with UCLA. She also continues with her physical, occupational, speech and community based rehabilitation (educational/learning) services therapies. The major points related to all of the therapies and appointments are...

1. She is progressing well physically and mentally. Each of her therapists feels she is making steady progress. In terms of specific areas of progress .... She is walking in her gait trainer very well; she is trying to pull herself up in her crib, she does 500 sit-ups a day while playing (she loves this for some reason -- I wish I did because it would be nice to have a six-pack stomach like her); she rolls all over the place; she is holding the crawling position better; she is showing some signs of standing balance; she continues to think biting is fun (and has actually drawn blood so we are working on discouraging that); she is increasingly vocal (mama, baba, bye bye, ball, papa, abba); she is the only person I know who can laugh herself into hiccups on a daily basis (she can laugh for an hour straight without pausing -- she thinks a lot of things are funny and has a very happy personality); she is picking up finger foods and self feeding them to herself; she is consistently sleeping through the night (yeah!!!); she pushes a button, spins a ball etc to get some desired result and she is just all a lot of fun to be around.

2. She no longer has kidney reflux so we were able to stop one of her antibiotics much earlier than expected.

3. Her subdural hematoma (from December) is gone and her CT scan looks good. She is scheduled for an MRI next week which is a requirement for the UCLA visit. (We still do not have all the parts for the stander yet so I don't have a picture of that).

4. She continues to be seizure free. She does appear to struggle with migraines when big storm fronts come through and the barometric pressure drops too quickly but we have seen no sign of any seizures. We now know to give her some tylenol before any big weather changes and that has helped a lot.

5. She has weaned half way down on one of her anticonvulsants and we will continue the weaning process with the ultimate goal of ending up on only one anticonvulsant for the long haul.

6. Her c-difficile appears to be under control. She is down to one dose of Flagyl daily and gaining some weight. The infectious disease doctors are very pleased with her progress and are optimistic that dropping the kidney antibiotic will only make things better. The plan is to continue with Flagyl until June and then try to wean. In the meantime, we continue to give her lots of probiotics to boost up the good bacteria in her system.

As you can see, Amanda is doing really well!! We feel very, very, very blessed! God has definitely been good to us!!! We do not have to go back to urology/nephrology anymore. Hopefully, we will be done with infectious disease soon too. We will continue to see the UCLA neurology and neurosurgery team each summer, the Duke neurosurgeon each winter, and our neurologist in Raleigh on an ongoing basis. Her neurologists and neurosurgeons have cleared her to start receiving immunizations again so we will start that process soon.

All in all, it has been a wonderful month. Thank you all for the continued prayers. They do make a huge difference and God is definitely hearing them! Now that the semester is winding down, I hope to be more diligent in my postings. God Bless and take care! We hope all is going well with you and your families.

Love,
Susan

P.S. We still don't have all the parts to the stander so I didn't post a picture of it. I will try to get my act together and post some pictures soon.