Spinal Tap Update

Thank you all for your positive thoughts and prayers today. We are home now with Jenelle and her spinal tap went well. Our only problem was that Jenelle started to get a rash of some sort when she woke up from the anesthesia. Quickly, she was given IV Benadryl and it disappeared as quickly as it started. The nurse said the rash was commonly seen with the form of anesthesia they used on Jenelle. Jenelle did not have any breathing problems and we were out of there by 4:00! Jenelle woke up pretty quickly and we really didn't keep her "horizontal" as long as we should. Since being home, she was a little cranky after her bath. I think she may have what they call a "spinal headache", but otherwise is moving around fine.

Unfortunately, Dr. Chang's nurse was incorrect, and we are going to postpone our visit with him until February, as it will take 4 weeks to get the results. The procedure was done in the new "short stay" unit at CHOC in the building we watched them build from our room in the PICU two years ago. The facility is lovely and we were quite impressed with all the changes. It's been so long since our last admission to CHOC (two years) that thankfully we were able to really enjoy the new changes.

Earlier this morning, Jenelle had her annual eye exam with Dr. Ching. If you recall last year he was unimpressed with her tracking skills and said that she was still cortically blind. Today he was thrilled to see her progress and agreed that she is finally tracking! I asked him about the difference between today and last year, and he said that last year she really didn't have much control of her tracking and there was no consistency. Today, she followed the toy he showed her and even reached out to touch it. That was quite a thrill for Dr. Ching. She still has cortical visual impairment, but he thinks with her continued seizure control and maturity, she will start seeing better and better. Dr. Ching will see her in another year.

And to end on a funny note, I told Dr. Chang that we had just visited with Dr. Ching, and he replied, "Well after this, I'll send you to Dr. Chong!" Thank you again for your wonderful thoughts and prayers. I'll keep you posted when we have the results.

Merry Christmas & Happy Holidays!

First, an update - Jenelle will be having her spinal tap to test for Neurotransmitter Disease on December 27! Dr. Chang tells me that unlike genetic test results which can take weeks to come back, we should have these results within days! Jenelle will be sedated for this procedure, so please say an extra prayer for us that she does not have a reaction or complication with the anesthesia. Here's hoping we get some answers, or at least rule out one more thing!

Peace to you all as you enjoy your families this time of year. I want to take this opportunity to extend wonderful holiday wishes and a Merry Christmas to you all.

Click on the photo above to enlarge it.

Jenelle's new school photo.

Her teacher left me a note saying that the only smile they could get would accompany Jenelle's hands on her head in some fashion. Whenever they held them down, she would get very, very serious, like above.

A Special Treat

My parents, Nana and Poppa George, live 4 hours away and because of the distance it is hard for us to travel with Jenelle to see them. She does not do well seizure wise on the drive over the mountains. This weekend, Nana and Poppa came down so we could open Christmas gifts together and celebrate Nana and Poppa's 45th Wedding Anniversary next weekend. We had lunch on Saturday at Crystal Court and Nana got a special treat; Jenelle sitting all by herself without assistance on the chair!

Saturday evening, Jack and I took Nana and Poppa George to the Crystal Cathedral to see the "Glory of Christmas". Daddy stayed home with Jenelle - we didn't think she'd sit through it. It was a beautiful performance and the church was pretty with the beautiful tree outside. We got the tickets for Mom & Dad's Anniversary. Here they are with Jack outside.

And just because I'm sharing photos, I thought I'd share this great one of the kids with Santa and Mrs. Claus, courtesy of our local Police Department. Each year, they drive up practically to our front door and give out candy canes to the kids. What a treat!

We hope you have a wonderful holiday season, with many magical moments like the ones we shared above!

Spinal Tap & IEP Update

Jenelle is doing really well and we are just waiting to hear from CHOC about a date for her admission for the spinal tap. They called a week ago, and I returned their call, and since then we're playing phone tag. Everything is approved, so at least that is one hurdle out of the way. Hopefully we can get it done soon and before our January 2 appointment with Dr. Chang. I'll let you know soon when we get that date.

Onto other things - I met with Jenelle's teacher and principal on November 29 for her annual IEP. Usually the term IEP strikes fear and anger in many special needs parents. I am fortunate to say that Jenelle's IEPs have always gone very smoothly. I am told however that next year will be an "evaluation" year where Jenelle will be re-evaluated and tested, so we'll see how that goes. Her IEP went extremely well - Jenelle met and exceeded all but two of her goals set from her previous IEP! Her goals include things like "holding an object for 5 seconds or more, 80% of the time" and "sipping from a straw 80% of the time", etc. Because she is doing so well we created a lot of new goals, so the coming year should be exciting. One of her new goals will be to keep her food in her mouth, 80% of the time.

Her teacher also asked if we could start purchasing lunches from the school lunch program. Apparently, Jenelle is eating a lot of mashed up table foods for them, and usually shares a lunch with one of the other students. I'm still in shock that she is eating so well for them. I may try to stop by to watch her eat sometime soon. The school would like to keep Jenelle with her current teacher for another year or more. I assumed she would be moving onto a new class next year, but apparently the classes are not under any age-restriction in this program. They feel Jenelle is best fit where she is - I couldn't agree more! It is such a relief to have such a wonderful "working" relationship with her educators - whatever they are doing, it certainly seems to work!

Both Jenelle and I have been under the weather a bit with sinus infections. When I took her to the doctor, they wanted to give me a prescription for an antibiotic to use later if she got worse, but as we talked her nose began to run and the doctor told me to start that evening. She is well now and hopefully we will all stay that way for the holiday!

And speaking of "Holiday", I haven't updated about Big Brother Jack in a while. While picking up Grandma and Grandpa Curran's Christmas Tree with Cousin Trevor at Peltzer Tree Farm in Irvine a week or so ago, Jack was interviewed by the Irvine News! The clip can be seen on the Internet - just go to this link and click on December 5. A new window will open with a media player - at the bottom click on "Jump to" Peltzer Pines, that way you won't have to sit through 6 minutes of the news cast. Jack is doing great and really looking forward to Christmas.

Irvine News

Thank you for the continued thoughts and prayers - I'll keep you posted.

Go Elf Yourself!

We did!

Happy Holidays!