Monday, April 21, 2008

Wednesday, April 16, 2008

We're home from the MRI/MRS

We're home from UCLA and the MRI, MR Spectroscopy procedure went well. I'm not sure when we will have the results. We met with a lot of unexpected traffic this morning so we felt a little stressed and rushed when we arrived a half an hour late, but thankfully that was our only problem. Jenelle was given a med to calm her by g-tube called Versed, and they got lucky with the first poke for her IV. The procedure took an hour and a half. I warned the nurses that Jenelle usually wakes up from anesthesia quickly and I'm not sure they believed me. The plan was for us to meet them in recovery so we could be there when Jenelle woke up.

When we arrived, she had 3 nurses holding her down on the bed because she was up and wiggling on the bed ready to play! One nurse said she couldn't believe how quick Jenelle could move and dubbed her as "Houdini". I was ready to start taking declarations from the nurses to give to our insurance company (who keeps insisting that a bed with 36" guard rails aren't needed for Jenelle!)
After holding down apple juice and some bites of baby food, they let us go home. Jenelle stayed awake for the entire drive home and is wobbling around like a drunken sailor. Although she fasted for the procedure, she isn't interested in food right now, which we were told was to be expected. We were also told to expect that she would be rather wobbly for the next two days. I'm not sure how that is different from her norm.

Thanks for your thoughts and prayers. I will keep you posted when we get the results.

Monday, April 14, 2008

MRI on Wednesday & New Shoes!

We finally have an appointment at UCLA this Wednesday for Jenelle's MRI and MR Spectroscopy. Jenelle will need to be sedated and we're told the procedure will take more than an hour. Once she wakes, she'll need to stay at least 2 hours for observation. Jenelle has done well in the past with anesthesia, but you just never know. We're expecting a long day. Please keep us in your special thoughts that day that all goes well without any complications.

This past weekend was the first scorcher of the season here in Southern California with 90 degree weather and up. Thankfully the kids had 9:00 baseball games on Saturday and we were able to get out of the sun before it got too hot. Unfortunately, Jenelle had a bad seizure weekend, especially on Friday night. She has been doing really well recently in not having a lot of seizures so this was a bit of a bummer. It was very noticeable to her Coaches and Buddies at her game on Saturday. Last weekend she was walking to first base holding her Buddy's hand, and this weekend she couldn't even stand at the tee. Seizures can really wear you out, even the quiet ones she has. I thought to myself that this was just another lesson for our Baseball Buddies I suppose. For a child with special needs, with each step forward we take a step back. That while one week the child can do so much, and the next can be so limited. It's a hard lesson to understand, especially when a normal child never expects set backs like this. And then again, that is why we're in this program. So our typical buddies can learn from our kids.

And on an up note - our kids are growing like weeks! Jack had complained that his baseball shoes were too tight, so I took him to the store this weekend to get measured. Turns out he's grown from a size 2 1/2 to a size 4! I had Jenelle with us, and knew her shoes were getting difficult to put on so I had her measured as well ... size 9 1/2 to size 11! New shoes for everyone! I felt really bad because Jenelle isn't able to tell me when her shoes are too tight! Poor little thing - hopefully it hasn't been that way until recently. And speaking of which, she's almost to the toe of her AFOs, so I better get going on with insurance to request new ones!

That is all for now! Please keep us in your thoughts for Wednesday. I'll keep you posted!

Tuesday, April 08, 2008

Latest update & Freedom Walk 2008!

I've been meaning to send out an update on Jenelle, but have been waiting to hear from UCLA with a date for our MRI/MR Spectroscopy. The good news is that procedure has been approved by insurance - unfortunately the UCLA radiology department is having some difficulty getting the order from Dr. Shields' office. Hopefully, (and now that I've posted this) we will have a date soon and I will keep you posted!

Jenelle is just amazing us with her walking these days. She can now walk from the front door at daycare to the car - meaning no more lifting for me! YAY! We had a small accident the night before Easter when Jenelle walked up to the stove and put her hand on the pot of boiling Easter Eggs! Ouch! Luckily, it was a minor burn and she was OK. Knowing it could have been so much worse, we've now installed a gate blocking her from the kitchen. (We never needed gates during Jack's toddler days, so this is new to us!) Jenelle pretty much wants to walk everywhere, and at her 4th Challenger Baseball game this past weekend, she successfully walked all the way to 1st base! Her Buddy was very proud! I'll try to get some more video when I can.

In other exciting news - the 2008 Epilepsy Freedom Walk benefiting the Epilepsy Alliance of Orange County is coming up on Saturday May 3, 2008 at Heritage Park in Irvine, CA. Because of our involvement with Jenelle's Challenger Baseball Little League Team, Brett and I knew a while ago that we were going to have a scheduling conflict this year. With me as Team Mom and with Brett coaching and with Jenelle having a game at the exact same time at the walk, we decided that we just can't "physically" be at the Freedom Walk this year. Instead, we've started a "virtual" team and we hope you can help them out with a donation in honor of Jenelle's Avocados.

This was a really hard choice for us to make this year, especially now that Jenelle could actually be "walking" in the Freedom Walk for the first time this year! We hope we can count on your donation!

The Freedom Walk is the biggest fundraiser for the Epilepsy Alliance, raising much needed funds for epilepsy programs in Orange County. More than 10,000 children are affected by epilepsy in Orange County. Please help and sponsor our virtual Avocado team this year or attend if you can!

Click here to find Jenelle's Avocados to make your donation.

Thank you for the continuous thought and prayers. I'll keep you posted!