Tall Pines Day Camp

They say "Summers are Magical" at Tall Pines Day Camp and I won't disagree. On August 14th, we closed out Drew's 4th season as a camper at Tall Pines and my 14th year as a counselor at the premier day camp in South Jersey.

Drew came home happy every day talking about the adventures with his group (The Yellow Yodas), his wonderful counselors, and his "very best friend" Alex.

Drew grew so much this year as he became more

confident with swimming. He started being an edge grabber and wouldn't put his head under water without lots of encouragement. Before this year, he would mostly run and splash around in the baby pool, but now he is practicing strokes and is comfortable in the deeper pools and is swimming underwater and playing swim tag with the other kids. Thanks so much to Drew's swim instructors, who worked so well with him.

Drew also was more willing to try new things at lunch and grew more comfortable with the sports activities especxially tennis, gaga, soccer, lacrosse, minature golf, and kickball. Drew especially enjoyed participating in music class and dance class where he prepared to sing We Will Rock You and learned a dance to Thriller for the Junior Camp Show. He also performed "Take me out to the Ballgame" in front of the whole camp on baseball jersey day.

It was a great to see Drew grow in his four years at camp. I know how lucky we are that he gets to experience all of this fun and excitement and know that his involvement in camp has improved his confidence and will make him a better

kindergartner when school starts in a few days.

I also particularly enjoyed this season as my group was fantastic and the counselors that worked with me are two of the most incredible young men I know. It's nice each year to get a break from teaching and do something that is also rewarding and in my skill set, but without the pressures of gradebooks and standardized tests.

The following photo is from Drew's first season at camp in 2006 (the date printed on the photo is incorrect) as an active 2 1/2 year old!

How's Emily?

I realize I haven't posted a medical update in a while, and mostly it's because she's doing pretty well. But, also because it's just hard to write about most days. The reality is, Emily is never "OK". She has a chromosome disorder for which a prognosis can not be given. It will never be cured or fixed. She has wrong information in every chromosome of her entire body. She has epilepsy everyday, even though she has not had seizures on a daily basis since March. Everyday she also has hypoglycemia, hypercalcemia, g tube dependence, cortical visual impairment,

kidney reflux, gastric reflux, and constipation issues.

Will some of these conditions get better?

Maybe.

Will she grow out of some of these issues?

Maybe.

Are some of these conditions improving with medications?

Yes.

But any day, any moment, we live in fear that something new and scary could "attack" her and make this stable period we are in right now feel like a distant memory.

As far as right now goes, Emily recently had an EEG, prompted by a few break through spasms 5 days in a row in July. She had one cluster of spasms in May (after being seizure free for 103 days), and one cluster of spasms in June. She has also recently been sleeping more during the day, and having difficulty eating again, so her neuro thought maybe her EEG was getting worse. It turns out that her EEG has changed. She is not in hypsarrhythmia now (for the first time since being on ACTH 12/07-2/08!), but the EEG showed a slowing pattern according to the docs. This could mean that she is developing Lennox Gastaut Syndrome, which means she will probably have some type of seizures for the rest of her life.

The plan was to wean her off of Zonegran, keeping her on Keppra and the keto diet. If the seizures were to start back up again, we would start Lamictal, most likely.

She has been finished with the Zonegran for a week now, and we have seen no seizures, so we are holding off on starting any new meds for now.

In other areas; she is still smiling a lot, laughing some, blowing raspberries some, eating a little bit better, rolling all over the floor, holding her head up pretty well, and sitting fairly well in a supported position.

And as always, she's absolutely adorable!

Trivia Winner!

Well, I apologize for fizzling out on the last week of trivia. But, I did finally get around to putting all of the entries into the random.org number generator from all of the comments from all of the weeks of trivia, and the winner is Julie!

Congrats Julie, and thanks to everyone for playing! I'll be emailing you for your address to send out a prize!