Tuesday, March 25, 2008

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

Wednesday, March 19, 2008


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!

Friday, March 14, 2008

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!

Thursday, March 13, 2008

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.

Sunday, March 02, 2008

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.