Road trip - Part 2

**Posts will now have no more than 5 pictures - Blogger is such a pain!**

We spent a lot of time swimming at Meme and Pepe's. Did I mention it was hot? ;)
Drew loved showing off his new swimming skills in the big pool and the little ones loved splashing around in the baby pool and being sprayed by Pepe too!

Meme and Pepe gave the babies their Birthday presents, a pink school bus for Brenna, a Little People car wash set for Carter, and a piano for Em, plus oodles of new clothes!!!

I think she likes it!

Drew is still the only one big enough to do sparklers!



Stay tuned for Part 3 . . . . .

Road Trip - Part 1

As soon as camp ended in the middle of August, we packed up the van and the kiddos and headed up to Maine to visit my parents and my sister and her family. We started out at 4am, and drove straight through, only making about 4 stops, and arrived in Maine 13 hours later! Mostly the ride was smooth, the kids are really well behaved in the car and didn't complain hardly at all. Unfortunately Carter still has MAJOR motion sickness issues and got sick more than a dozen times on the way, yuck! Poor guy, but he is so sweet, as soon as he gets it out, he is smiling again. :)

We had a fun week planned at Meme and Pepe's house. We had a BBQ the night we arrived, and my Dad had painted a baseball field for Drew in backyard! They put up their pool which was great, because it was actually near or above 90 degrees everyday we were there! In Maine!! Even the evenings were hot, but we sweated it out and made sure we visited a few places with air conditioning.

Enjoying some cool popsicles!

Carter actually started off with an orange cream pop and then went for the fudge!

Brenna and Carter chasing the tennis ball by the barn

On our second day, we went to Swan Lake State Park, just a short ride from Unity. Everyone, including Emily, enjoyed swimming in the lake and playing on the playground.

Drew loved being tossed up by Uncle Joe!


Aunt Nicole and Sierra - what a sweetie!

Brenna, Carter, and Sierra stayed close to the lake's edge and had a blast picking up handfuls of rocks and dumping them back into the water. Brenna was saying, "Mommy, rock, wa-tah!"

Watch out for the shark!

Mommy and Carter

I was very nervous about bringing Emily in the water. The only water she is used to is during her bath, which she hates! But it was very hot, and the water was not cold, and she seemed to really like it! Gee-off is holding her in this picture.

The cousins playing in Meme's kitchen

The Carusos

Punch Balls!

Stay tuned for Road Trip Part 2, coming soon . . .

Summer Catch Up

I'll be playing catch up forever! But, I am seriously dedicating some time this week to posting about our busy and super fun summer.

Here are some highlights to look forward to:

Road Trip to Maine to visit my family

Carter, Brenna, and Emily turn 2 years old!!!

Family Birthday Party

Aimee and Gee-off's 10th Anniversary trip to NYC!

Day Trip to the Wonderland Pier in Ocean City

Camping at Hospitality Creek

and everyday fun around the house!

I (I mean YOU) could win this beautiful bag!

Kelci is giving away one of her gorgeous bags!! Check it out here for your chance to win!

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!