March Update

Amanda is still doing well developmentally. She now likes to hold her left foot with her left hand and play with it. She seems to be babbling more -- Her Papa finally heard her say "Mama" yesterday. She still likes to give hundreds of kisses per day. Yesterday, I called home and my mom put Amanda's ear to the phone. When she heard my voice, she immediately started giving kisses.

She got her little pink AFO leg braces this week. They prevent her from locking her knees when she stands so she has to use her quads and hamstrings more to stand. This will help develop her leg muscles more so that she will be better able to learn to crawl and walk. They also keep her from rolling her ankles in when she stands. She isn't a huge fan of them at the moment but she does handle them well.

She has a gait trainer that allows her some mobility. It holds up her weight and gives her balance but allows her to cruise around the house by taking steps. We have to put a helmet on her and watch her like a hawk when she is in it because she can get up enough speed to jump the fireplace hearth (about 3/4 inch) and run into the fireplace, wall, or other objects. She will be getting a stander that we bought off e-bay later this week that will allow her to get more practice standing on her own. This one retails for over $1500 (closer to $2000 with the tray included) and we were able to get it used for $300. It will allow her to stand and play with toys in front of her. The weight bearing helps to develop muscles as well as her hip joints. (I'll put pictures of both the gait trainer and stander on the blog in a later post).

Amanda had a neurology appointment last Monday which included a 6 hour EEG. The EEG still shows a few spikes but the activity in the right side of her brain looks really good. Previously, she had been acting a little odd as we reduced medicines (we are trying to wean her off 2 so that she is left on only one medicine) and the EEG showed that the odd activities were actually odd reflexes/behaviors rather than seizures. That was great news... so we are back to weaning again. She does get easily overstimulated (which she demonstrates through eyelid flutters and turning away) as we wean meds but that can be as much from the sensation of weaning as anything else (ever wean yourself off caffeine and get a whopper headache?) so we are going to proceed a little slower to try to minimize the side effects. The good news is that there was no evidence of any seizure activity on the EEG! Praise Jesus!

We also had an infectious disease appointment at Duke a few weeks ago and it appears that we are finally having some success against the c-difficile. She had a big relapse with vomiting and diarrhea last month but we retreated with vancomycin and are now on a longer term antibiotic therapy with Flagyl. She is tolerating a once per day dose of Flagyl (which is a low dose) and we are supplementing with about 6-7 probiotics (lactobacillus acidophilus) pills to try to reinstate the healthy bacteria in her intestines. We will continue this protocol for about 3 mos and then try to wean off the Flagyl. This should give her time to get her immune system boosted back up, get her intestinal flora back on par, and gain some weight. She is finally back up over 20 lbs (20, lbs 14 oz to be exact) so it seems to be working.

Katie is doing well and continues to be such a sweetheart. She really enjoys school. She learned to ride her bike without training wheels. After a few spills and some nasty looking knees, she picked it up great and is now riding around like a little pro. She is close to loosing her two front top teeth and is excited about that. She has already lost 4 on the bottom. She is excited about her upcoming birthday and has grand plans for the event! She is quite the party lover.

Thanks for all of your continued prayers. We pray that you and your families are doing well. God Bless!

Susan