Tuesday, May 17, 2011

Changes & Close Calls

I've been remiss in updating a while, but I have a darn good reason ... we moved! I've been telling everyone that I'm too old for moving, and that moving is for young college age kids. Then I realize I sound like my Mother! ;) For the sake of our privacy, and because Jenelle's website is internationally famous, I'll simply say that we are in our new home, we love it and the kids are adjusting very well.

That said, our lives have been pretty hectic of late. So much so that we had a small scare a few weeks ago that shocked us into being reminded how fragile Jenelle can be. While busy one afternoon, Jenelle snuck out of her play area, walked through our garage filled with boxes, across our front lawn, to the open front door of our next door neighbor's home, through their living room (avoiding many glass vases and figurines), through their open sliding glass door and into the deep end of their pool. And yes, Jenelle does not know how to swim.

Thankfully, God made sure there were some guardian angels watching Jenelle that day. Our neighbor's relative from Holland was lounging by the pool with his eyes closed. He had just asked the 14 year old if he wanted to swim, and the 14 year old declined because he had homework. As he laid in the sun, he heard the splash and thought to himself that the 14 year old had changed his mind. A few seconds later, he realized that he didn't hear anyone resurface after the splash. He opened his eyes, looked into the deep end, and realized a child he didn't know was sinking to the bottom. Jenelle had instinctively held out her arms, and he was able to grab her arm and pull her out of the pool without jumping in.

After coughing up water, Jenelle did not answer when he asked if she was OK. Because he didn't know her and didn't know that she couldn't talk, he called for the 14 year old, who ran down stairs, recognized Jenelle and scooped her up and took her to Brett. Brett was very calm as he took Jenelle into his arms. He simply looked at her shivering, cold body and said, "sweetie, you know you can't swim silly!" and took her inside to change her.

Not many people can truly say that they have saved a life, but the relative from Holland saved Jenelle that day. If he hadn't been by the pool, or if he had drifted to sleep, she would be dead. And my stomach lurches when I think of what could have happened. We are very lucky, and Jenelle will be taking swim lessons this summer!

Another change that will be happening this summer is that Jenelle will be going to a new school (the special needs program within our school district, not with the County) and to a new daycare. We toured the district's severe to moderate program at Benson Elementary in late May with the District representative, our advocate Janna from Epilepsy Support Net of Orange County, Jenelle's current teacher Joy and her current principal Renee. Two years ago when the District wanted to place Jenelle in this program, Brett and I did not approve. The program was just not right for Jenelle's abilities, and the District didn't even have a teacher! Wow, we were very impressed with how much the program had improved. This school is the perfect fit for Jenelle, and we are very anxious for her to start on June 27.

Another positive for the school is that they have a YMCA after school program on site that will accept Jenelle with a one on one aide. While we love our day care provider, who has taken care of Jenelle since she was 18 months old, this will be a good move for Jenelle as she will be with children her age. Her current daycare has kids ages 5 and under, and Jenelle just towers over the rest. The school bus will now pick up Jenelle from our new home, take her to school, where she will then be transported to the Y after school where we can pick her up. I'm always a bit hesitant about how Jenelle will handle changes, but I think in time this will be a great situation for her. Thankfully we will always be in touch with her current daycare provider through the Internet and Facebook! ;0)

Jenelle is scheduled to see Dr. Shields again at UCLA in the middle of June. I assume we will re-address the issue of the VNS. Speaking of which, her seizures have been about the same. When we started weaning Vimpat, I saw a drastic increase in seizures. Remembering what we had done in the past, I increased her dose a bit to give her more time. Since taking the wean slower, she is doing well seizure wise, but still have more seizures than we'd like.

The official baseball season has come to a close, and the playoffs and Championship games are upon us. Jack's team is playing for first place on Thursday, and Jenelle's Challenger team is playing another Challenger team in the area on Saturday at Curran Field. I can't believe how quickly this year has gone.

Also this Saturday the Epilepsy Support Network of Orange County is having it's annual Epilepsy Walk (formerly the Epilepsy Freedom Walk). Although Jenelle is playing baseball at the same time as the walk, we have started a virtual team (Jenelle's Avocados) in an effort to raise money. Please make a donation if you can by following this link: http://epilepsywalkoc.kintera.org/boocurran

That is all for now. I will update again after our visit to UCLA. Thank you for continued thoughts and prayers, and remember to hug your kids a little tighter.