Monday, March 23, 2009

Monday Madness

So Jude woke up several times last night with seizures or twitching. About 3:30am he woke up twitching, but never went into a full blown seizure and he was wide awake. I had been up and down with him so Mike got up this time, and went and placed Jude's paci back in his mouth. Mike then went and got back into bed, and Jude decided to have no part of the paci manipulation and I heard him spit it out. I then got up and opened the door to the bathroom to shed light on Jude's bassinet so I could see him. Suddenly he saw me, and got very excited (like a regular baby would) it was great to see that! So I scooped him up, and explained I didn't mind if I was tired at work today I would hold him. I fed him a bottle and cuddled him for awhile, and Jude went back to sleep....until he woke up with his next seizure.

So Jude's big doctor appointment with his neurosurgeon is today. I am not going to be able to make it due to work so Mike will be making the long trip out to Plano today. I just emailed him some questions to present to the doctor. Here are a few. ...

1. Is there a way to have ECI increase the amount of therapy Jude is getting from once a week to twice a week?

2. In the doctors opinion which is worse the seizures or the seizure meds and why?

3. Would it be beneficial to check Jude's liver enzymes prior to giving him the depakote (it can cause severe liver issues)

I will be sure to update when I heard back from his visit.

So it's Monday again, and I am back at work. I am going to make it a good week though. I am getting back into my work out routine tomorrow and not deviating from it. I am going to work on my garden at home, and just relax with the family.

So I did take some pictures this weekend. While we were at Em's softball practice Mike snapped a picture in the car showing how well Jude is starting to hold his head up on his own:
Image and video hosting by TinyPic
Mike also decided to teach Jude how to drive:
Image and video hosting by TinyPic
Then Emily decided to help Jude learn how to walk. The fact that Jude lifts his leg is a very good sign.
Image and video hosting by TinyPic

Well my phones are ringing off the hook so I better go


Mara said...

HE seems to be doing great ! He looks wonderful ! Talk to your ECI person and request an increase ! and if they dont seem open to the idea go over thier head : ) Long story, but we are getting a new ECI person -meeting her tomorrow- because the other one did not see eye to eye with us.

And YES ! we have to meet ! But sadly, no we arent going to DDA :(. Am I nuts to put Kayden in her first pageant ? thinking about it for nent month at UR !!! Pageants are too much for us to travel for right now- but maybe we can make a special trip to Dallas area -Jude up to the zoo or soemthing by then- maybe ????

Cjengo said...

DDA is the only one we attend just to help out because it was originally mine, and I love the Demerses.

The zoo sounds fabulous!!! I will be sure to talk to ECI and see if we can up the therapy.

andrea said...

Jude is doing so well!!!! i already said this a million times, but so adorable!!!! have a good work week.

jocalyn said...

We had the same issue with ECI...they were only able to offer us PT 2 times a month! That's why we also added therapy through Cooks. Your Dr. can write a script for something in addition to ECI. I've heard good things about Our Children's House Baylor and there is one in Grapevine. Once you get on MDCP you won't have to pay anything, but if you do it now your co-pays can get pricey. Hope you have a great week!!