For Mothers' Day, I bought myself three new lawn chairs for our new home. Two chairs for me and Brett, and a smaller one for Jenelle. They are an Adirondack knock off, and were on sale at Target. I love them because they fit beautifully in our yard, and having a place to sit and relax in the front is something I wish we had had at our old home. I always told Brett the only thing missing in that home was a porch, with chairs to sit in to sip some wine, read a book or watch the kids play. So when we moved, I bought the damn chairs, and our good friend put them together for me on our first day! I've used them quite a bit, and have met many new neighbors in the process (the chairs are on every lawn on our street), but lately we've been so busy, the chairs have been neglected.
That said, we're long over due for an update. I'll start with the youngest in our family and bring you up to date on Jenelle.
Jenelle has had a rough couple of months seizure wise. We had weekly grand mals and increased to every other day grand mals as we continued to wean Vimpat. We had a follow up at UCLA with Dr. Shields on June 20. At that point, I was 6 days away from completely getting Jenelle off Vimpat, and her seizures were almost out of control. It was hard to tell if the increase in seizures was due to to the wean itself (sometime kids can have increased seizures when a wean goes too quickly) or from the lack of Vimpat. I had been taking the wean extra slowly often adding weeks to a dose to get Jenelle to stabilize. With this information, Dr. Shields felt the increase in seizures was from the lack of Vimpat, and decided we needed to "wean" her back onto an increased dose. It also didn't hurt that Jenelle had had a 4 minute grand mal as I was driving 70 mph in the car pool lane on our way to UCLA. I was almost to the point of deciding to cross a double yellow when the seizing stopped. She slept in her "post-ictal" state through her entire appointment with Dr. Shields, so he was very concerned that things had not improved.
Since increasing Vimpat, her seizures have stabilized. Knock on wood she has gone a week without a grand mal. Once we have Vimpat to the therapeutic dose (100 mg twice a day), we will start weaning Jenelle off Banzel. Right now, she is on 3 Anti-Seizure Meds, and we'd like to get her back to mono-therapy. Dr. Shields is going to recommend Jenelle to their neuro-surgeon for the VNS implant, and wants to see Jenelle again in two months.
Jenelle started her new school on June 27, and she has been handling the change in routine pretty well. The school bus now picks her up at our door, but after school care has been held up a bit. The YMCA has an after-school program for special needs kids, but it would require that Jenelle have a paid one on one aide to be in the program. The YMCA has done an evaluation of Jenelle, and will try to incorporate her IEP goals into their program as well. This is exciting and wonderful news because the extended school year program with our District is much shorter than the program she had with the county. Everything is in place except for the funding, which will be done through Regional Center. Jenelle has been in school two weeks now without after school care. Silly me, expecting all the agencies to work together on time. We are still waiting on Regional Center, so Jenelle will not have after-school care again this coming week.
Now, onto Jack. Jack has had a fantastic summer so far, and it's not even the middle of July! Baseball is his life and passion right now, and we are enjoying every minute! By the way, Jack now goes by the name "JD" - it is a nick name he has had in sports (because usually there is more than one Jack on a team), but when he changed schools this year, he decided to take on the name for good. It's been hard for me to use it, but slowly I use it more. This is how my parents must have felt when my sister went from Leigh to Norma.
Jack's AAA team, the Cardinals, won an amazing Championship game against a team that beat them twice during the season. They took first place, then went on to win the District 30 Tournament of Champions while defeating other leagues in our District. It was an amazing run, and we really enjoyed the families we got to know on the team. As the regular season ended, Jack was voted onto the 9/10 Pool Play All Star Team - aka the Tustin Eastern 9/10 year old Red team. The All Star run was not as exciting as last year, and his team did as expected winning 2 and losing to our rival Tustin Western. Tustin Eastern had the unique opportunity to field two 9/10 year old Pool Play Teams this year, and the second team, the White team made it to the Championship game - only to lose to Tustin Western in an extra inning heart breaker game 10-9.
Just prior to the last week of school, Jack had the biggest thrill of his life as he was selected by his Grandfather (District Administrator for our District) to throw out the first pitch at the Angels Game on Little League Day! Our nephew, and Jack's cousin Trevor was also selected by Grandpa to be the honorary Bat Boy. It was a perk Grandpa Denny had been waiting for the last 6 years, and it was such an amazing experience for the family. Both boys were announced on the big screen, and JD's pitch was a perfect strike from the mound! Three days later, JD received an award at school for being "Fantastically Physically Fit", and two days after that, JD's team won the Tournament of Champions. It was a pretty amazing week for all of us.
Jack and I recently took a road trip just the two of us through Santa Barbara, San Luis Obispo and Visalia. Jack "video logged" most of the trip and we really enjoyed some special bonding time, even though he missed his Daddy, and I missed Daddy and Jenelle. When we got home, Jenelle gave me a huge smile and hug, and jumped up and down for what seemed an eternity. It was a good trip for all of us as it always feels like Brett and JD are doing things together, which leaves me and Jenelle. It's nice to be home and having some time off to relax was good.
Speaking of which, here is my latest update. On July 5, I finished my last ever dose of ATRA, the chemo pill form of a massive dose of Vitamin A for 15 days. This was my last ATRA round ever! This part of my chemo happened every three months for a duration of 15 days. The side effects included horrible head aches, dehydration, itchy skin, and of course, fatigue. I make an effort not to drink alcohol when on Vitamin A, and to increase my water intake. The side effects this last round were not as bad as it has been in the past, so that is good.
I had a follow up appointment on June 16 at UCLA, and my doctor informed me that my maintenance chemotherapy would be finished the next time I see her in August. My blood work was OK, but showed that my red count was low. This could mean many things, and she said they would not know more until getting my chromosome results. Of course, this had me a little nervous as sometime your counts are low because your cancer has returned (thus taking up room for healthy cells). At the very least, it would explain my increased fatigue over the summer. I did not get a follow up call, so I assume all is well with the low red count.
Brett is great and work has been busy for him. Now that Little League is over, he has been focused mostly on the Travel Ball Team he manages for JD and other 10 year olds. We had a quick tournament just before the 4th of July, and we are preparing for another one next season. The team's just became a 501c Non Profit organization and we are gearing up our fundraising to help raise funds for a trip to Cooperstown for the Travel Ball World Series in Summer 2013. Like I said, it's always about baseball in our family, and we wouldn't have it any other way! The team is the Tustin Rampage, and you can check us out at http://www.tustinrampage.com/.
That is all for now. I have some wonderful photos of late to share with you all, but wanted to get the "update" out. Hopefully in the coming weeks, I'll have more time to enjoy my new lawn chairs, and in meeting our wonderful new neighbors. Thanks again for the thoughts and prayers - as always, I'll keep you posted!
Sunday, July 10, 2011
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I just came across your blog tonight (my cousin has Rett Syndrome) and my best friends cousin also has LGS. I wanted to say that you seem like an amazing mother and that i hope through all of your struggles that you will never ever give up. I hope your angel is doing better, and that you are feeling good. You're in my prayers<3
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