Tuesday, March 9, 2010

Neurologist update

Jude had his neurologist appointment today, it didn't go poorly, but it didn't go that well either. The doctor can tell Jude is still having spasms. In fact to me it seems he has a constant level of seizure activity in some way, shape, or form. So therefore, he put him on a new medication which will be combined with his Depakote, I believe it's Sabatol?? I am not sure if that's the proper spelling, because I haven't had any time to research it yet. Jude has also lost some weight, so the G button is now inevitable. We are trying to hold off until after May, and then we will schedule the surgery. The doctor was not overly worried about the weight loss because it was only a pound and a few ounces. We have been fighting with the insurance company to replace the Pediasure with Boost because it has more calories, but they have been resistant. Jude, and Mike have another doctor appointment with the pediatrician tomorrow, and he is going to help get that situation resolved. Mike said the doctor commented that Jude is not progressing in development because of the constant spasms. Although, he cannot promise Jude will develop any further than he has. He wasn't negative, he was just honest, and it's sad. Mike said today that he hopes Jude will develop further, BUT he is a realist, and he knows there is a possibility he won't. So all this is a bit much to take in, but I am processing it all.

Yesterday I looked at some pictures of the kiddos in the mommy group I was in prior to having Jude. I was so happy to see them all smiling, walking, and running, but it made me sad too. I wondered what Jude would look like standing upright, and holding miscellaneous items in his hands. I wondered what he would look like playing ball with Mike, or chasing the puppy around the house. I wondered if he would run and jump in my lap yelling, mommmmmy. There are still those fleeting moments that cause that deep dark pain the the pit of my stomach to rise. Wondering is a word I try to avoid.

On a more positive note I have been tossing around the idea of holding an Emily's Smile Box picnic in the summer to fundraise. It's fairly easy to rent a facility in our area, it's just coming up with activities to go along with the picnic. I thought I might could get people to donate cotton candy machines, etc. Any other ideas?


Katy said...

Is it Sabril? I know some families that have been very happy with that. Other families I know have had to go on to ACTH or another steroid. I do hope they can find something to help little Juders. I DO think he's learned some stuff recently, though--I mean, he learned cause and effect recently which is huge.

I think a picnic sounds like a great idea!

jocalyn said...

if its sabril (vigabatrin)...I have 3 bottles of it you can have. we ordered it from canada before it was FDA approved, and then Kendall got off it to start the diet. it is super expensive.

gilda said...

Jenn, your post today helped me remember not to take anything for granted. My 10mth old son,Omar is constantly getting into everything since he is crawling and pulling himself up. And just the other night he broke a glass picture frame which should have been out of his reach in the first place. I was not upset because it got broken I just simply picked it up and trashed it. I am at loss for words for your feelings about little Jude limitation to his mobility and development. I can say is Jude is so special and has won the hearts of so many as myself just by his gorgeous eyes and smile. God always blesses us with our children and Jude is truly a great blessing to know him through this blog. My thoughts and prayers are always with you.

Holly Mackerel said...

I love the picnic idea! I wonder if we could get the Lion's Club involved?

Jamie said...

I know this post was more about meds than Pediasure but I just wondered if until the insurance will cover the Boost if you could add carnation instant breakfast to the Pediasure. It will add something like 150 calories without changing the consistency of the drink. BTW, do you go to Cook's or Children's for your care? If you do not already have a good GI doc and use the Cook's system, we use Dr. Ogunmola at Cook's and he is FANTASTIC!!!!