Jessica, Chris, Lauren, Sandra and James
What better time to provide an update than Lauren's 17th birthday? Its been a long time since I posted last. People keep asking me to provide updates, but literally, no news is good news.
Things are good. Lauren went to Camp Cranium and loved it. Looks like she will be attending again next year. Since the school year has ended, Lauren has been studying for the ACT's, catching up on missed Algebra II online, babysitting and generally enjoying her summer.
Her walking is about 95%. If you saw her walking you probably wouldn't be able to notice anything out of the ordinary. She had the wheelchair for about three weeks after school was out but really never used it at all. She used the cane a little bit but abandoned it quickly. The MAFO lasted about a month. Now she uses nothing. I don't even know where the MAFO at this point (just informed it is in her laundry basket). When she gets tired she has a slight limp, but like I said, if you didn't know you wouldn't notice.
Probably, some of the most traumatic events so far this summer have been swim meets. At 16, Lauren was in the Unlimited events and even occasionally went to practice. Face it, now that the kids are getting older, their dedication to the team is not what it used to be. And frankly, we have not been that strict with their participation. Teens are hard to motivate to jump into a cold pool at 9 am on a summer morning. Anyway, we were simply proud of Lauren for competing. She finished respectably, nowhere to her championship form when she was younger, but she did it. I suppose it was the spectacle of the whole thing. Getting in the pool and doing it in front of the whole community, many of whom read this blog. Pity, pride, tears, exhaustion. She did it, she has done it, we are so proud of her.
She has been done with Dilantin for about a week now. We slowly weaned her, 50 mg at a time, every two weeks. Now she takes 200 mg of Vimpat and 60 mg of Phenobarbital every morning and night. No seizures if she sticks with her meds, which she has been better about, especially now that we have a fixed dose and are not tapering. Her next appointment with the Neurologist, Dr. Dlugos, is in September. I assume at that time he will try tapering the Phenobarbital. The analogy that comes to mind is the old western where the poker game goes bad and the cowboy has to back out of the saloon with his hands on his pistols. We are backing out of the saloon.
The hospital bills are done. We haven't gotten one since the $453,000 one. I must assume that either the Children's Seashore House is either terrible at billing, or a case manager at Cigna has taken over. The man behind the curtain is working the levers.
