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!

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!

Easter photos!

Loot from the Easter Bunny!

Brother & Sister

Jenelle shows off her walking!
Jenelle and her God Mother Shelly
Jenelle likes her bunny puppet from Aunt Deb
Jack finds eggs
Jenelle was more interested in biting her basket than she was in finding eggs
The cousins

MATCH Day!

Tomorrow, at 1:00 p.m., Eastern Standard Time (10:00 a.m. for us) our friend, Dr. Danielle, will find out where she will is "matched" for her Residency.

MATCH Day, is done nationwide and it is the day all senior medical students get matched to residency programs. It's bigger than Graduation! I never knew about it until I met Danielle - almost 3 years ago!

I can't believe her MATCH day is here already!

Danielle, I know that whatever happens, any program would be damn lucky to get you! I truly hope you land in a place you want as well, and that you get all the rewards in life that you deserve!

Your fans in Southern California are thinking of you today and tomorrow!

Update on Visit with Dr. Shields at UCLA

Jenelle and I made the trip up to UCLA yesterday for our 6 month visit with Dr. Shields. As always, he was thrilled to hear of her recent improvements. To show off for him, Jenelle took three or four wobbly steps into his arms, and he had the brightest smile on his face! It was such a joy to see. After going over all the new milestones and recent test results from Dr. Chang, we agreed to stay the course with no changes to her seizure med Felbatol. As for the Tranxene (valium - Jenelle's "happy" drug), he feels we really need to try to wean her off again. If you recall, we tried to wean Jenelle off this drug last summer, only to have her cry constantly when she went through withdrawal. Now that she is back on it, she doesn't cry like she did. This means she is on it because she's addicted, and for no other reason, so we need to get her off it. He told me to take it slow, for as long as it takes. Our last wean was almost 6 months, so we'll see with this one.

The Tranxene wean may be a little easier this time in that we decided to add a new behavior medication. While Jenelle is usually a very happy child, those of you who know her in person know that she is in constant motion and often bites herself or anything near her mouth. Dr. Shields says this is behavioral, and that she is doing it to self stimulate. In order to counter this, he is prescribing a drug called Risperdal. This drug will hopefully take the place of Tranxene, so the wean could be easier than it was last time once we add the Risperdal. Please keep your fingers crossed for us that this works!

We discussed our recent visit with Dr. Chang at CHOC, and I gave him the report from the Neurotransmitter Disease Results, and we discussed Dr. Chang's request for an MRI/MRS. Dr. Shields didn't think the MRI would show anything new, but did feel the MR Spectroscopy could be useful. I know very little about the MRS, other than it provides a measure of brain chemistry. Dr. Shields is going to put in an authorization request for the MRI and an MR Spectroscopy to be done at UCLA (which is what Dr. Chang wanted.) Jenelle will need to be sedated and the procedure is usually done as an out-patient visit. From past experience, I know this could take a month or two to get scheduled. I'll keep you posted once we have a date.

Jenelle is doing really well in baseball and had another great game last week. She gets tired easily when she walks, but is improving greatly each day. Now she can walk the distance from our living room to our stove very quickly! I really need to do some baby-proofing of the house this weekend.

As always, than you for your positive thoughts and prayers. I'll keep you posted!

Small moments of normalcy

I just want to share this small moment with you. I am sharing a bowl of oatmeal with Jenelle. Regular oatmeal, not baby food oatmeal. She even has her own bowl (and not a plastic baby bowl like I usually use, a real cereal bowl.)

Her eating has greatly improved in the last two months, and finally, she can manage chewing the texture of regular oatmeal. Her drinking/sipping needs improvement, but this is awesome.

As I took out two bowls to pour the oatmeal it felt so good, to make a "regular" meal for Jenelle, and enjoy it with her. I added milk and sugar to mine, she has yogurt and maple syrup in hers.

Just wanted to share.

Opening Day for Little League!

Yesterday was awesome... and emotional! Opening Ceremonies started with all the other division Angels Team on a knee making a tunnel for the Challenger Team. Tears were flowing as we entered the field! After the key note speaker Rex Hudler inspired us all, the first Challenger Game began! This smile says it all...

Here is Jenelle and her buddy taking the ball to 1st base!
After the game was over, Rex Hudler (the red haired guy on one knee) interviewed some of the Challenger Players. Rex's 13 year old daughter sang the national anthem, then his 10 year old son (a Challenger team player) decided to sign like his sister!
Then each kid wanted their opportunity to use the microphone!
After Jenelle's game, we went to Jack's first game where he played catcher. He did well until he took one on the toe -ouch!
And here is Jack in full swing. He thinks his swing looks like Vlad Guerrero.
Daddy and Jack, who was not very smiley at the time.