Tuesday, March 2, 2010

The news, seizures, and moving around

Well I can tell you that my daughter possesses a talent of talking to others, and the media that I do not. I get so nervous that I feel like my head is shaking like a bobble head, it's not a pretty sight I am sure. Besides my issues the interview went well yesterday, and we can pray that this segment will bring in more donations for Em's boxes. I said before that the demand is dwindling our supply, but it's great Em can spread so many smiles. After all these boxes are finished, and dropped off Emily will have passed out more than 700 boxes! I enjoyed the journalist that showed up, and he was good at what he did. He asked me what I thought of Emily and her friends working on these boxes, and I told him I am not only proud, but that I admire them! Emily is finding the positive in a negative situation which is what I have always asked her to do. So here is a picture of the friends that make Emily smile.
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Jude got very upset when the camera crew was there, and they got a great shot of him in his fit of glory. He was just tired tho, and he fell asleep on my shoulder after he was done crying. Mike said it's because I did not negotiate his contract, and give him more money to be on TV, haha! Mike is always the jokester. Joking or not, Jude does have his tantrums, but the nurse seems to think those are good. She said it means Jude is resistant to doing things he doesn't want to do, and she explained she has nursed many kids that cannot express that emotion at all. Jude is also getting even more frustrated with not being able to move, or get up. You can see him twisting his body while moaning trying to make it work. I am unsure if his mind is telling him he wants to get up, but I believe it is. Yesterday in therapy Mike said they held Jude up on his hands, and he actually brought his knees forward and lurched like he wanted to crawl. Although, Mike felt Jude's muscle quivering down the middle portion of his body, and Jude would collapse. It seems like the low to no tone is in his middle, and neck, which was key parts to making everything work. Last night Jude got pretty frustrated in his bed, because he was trying to turn and adjust his body. Mike started getting teary, and made a comment that despite the good work Em, and I do it doesn't make it easier that Jude cannot move. I explained that's not why we do it, but I knew what he meant, and it touched my heart.

The nurse told Mike yesterday that she is going to have to find a place where she can get more hours. We are hoping it's another part time job, becaue we really want to keep her.

Jude is still eating well, but eventually we are going to have to face the fact that Jude is not eating enough solids. The nurse recognizes he is very thin, but she also understands why we have not gotten the G button. She agreed that in some circumstances the button decreases the child's drive to learn to eat on their own. So for right now Jude is still G button free, but it looms around the corner. I was able to get some chicken with fruit down Jude Sunday ........ prior to our dog Bigs knocking it off the table, and eating it. He was in so much trouble that he hid in time out in Emily's room. Jude's seizures have GREATLY increased in my opinion, and it almost seems like he is in some constant seizure state to me. Even when he is sitting still his eyes are fluttering, or his mouth is opening and closing. He has another neurologist appointment in March, so we will know more then.


Katy said...

Our OT told us that the g-button isn't usually a problem--it's the Nissen or however you spell that. If Jude does have to get the g-button you might see if you can avoid the Nissen. Just one person's opinion, though!

Jamie said...

Anna was able to get a G button without the fundo and it has been a wonderful thing! I put it off for so long and now my only regret is that we didn't do it sooner. We did have some problems with vomiting for awhile but have finally gotten them under control. It is so nice now not to struggle to get calories in and I have to say I have seen such huge advances in Anna's speech and movements since she started getting enough nutrition.