Sunday, October 26, 2008

Good weekend!!!!......Bad Monday....


This weekend was a good one! Elle is over her pneumonia and Kaden had a great weekend. We had Elle at the hospital Friday night, Saturday and Sunday. Sunday night Nana, Papa and Auntie Lori watched her while Paul and I went to spend the evening with Kaden.

Elle will be back to school this week. Might be hard for her to get up in the mornings as she is now use to sleeping in till whenever she wants.....usually 10ish with lots of naps during the day. Guess she is just going to have to have a nap at school if she gets tired. In her Skills for Living class they have a 'quiet room' that her and the nurse can go if she gets tired. They have a mat and some blankets so she can relax. She will be excited to see her friends. The last time she was away sick when she came back one little boy runs into the class and yells "Elle's back, Elle's back!!!!". Her nurse said it was so cute.

Kaden, he is getting more teeth. His little cheeks are bright red. I took a peek and it looks like there may be one on the top and a possible one (if not more) on the bottom. He has been doing chin ups!!! Yes you read that right. He lays under his mobile and pulls on one of the toys hanging there and rolls to the side and pulls himself up. He is still smiling like crazy and laughing too. He is such a happy kid. (both him and Elle) His ketones are still not great so we are hoping for another change tomorrow with the Dietitian. Probably going to concentrate his formula in order to decrease fluids and see if they go up from that change.....will they ever go up?? He was up this morning playing with his nurse Angel on the mats and sitting is the bouncy chair. Sunday afternoon he was also up in his bouncy chair playing with toys.

Visitors for the weekend: Nana and Papa on Saturday night
Lorraine (next door neighbour) Sunday afternoon
Grandma and Grandpa Sunday afternoon
Auntie Denise Sunday afternoon

Thanks for the visits!! It helps pass time and its always nice when people come to visit as otherwise we don't see anyone!! We don't usually have time to see people as Kaden needs us right now.

Well, today (Monday) is not a good day for our little guy. I arrived at the hospital only to find he had just finished his second seizure and was in the process of getting an emergency medication (midazolam). From there he continued to have 6 more seizures where he would stop breathing. Not all of them required 'bagging' most of them he responded to some gentle poking and being talk out of it. He was then given more midazolam and a phenobarbital loading dose of which has seemed to stop them for the time being. He was also started on another seizure medication called Kepra trying to get his 'cocktail' right. I left the hospital at 3:30 to get home to Elle and he was very sedated and sleeping soundly. The picture above is of him after all his medications were given. Our poor kids and what they have to go through......nobody can ever understand the sadness in our hearts every time we see this happen....

Elle made it through school today but was very tired. She was awake at 5:30am this morning but went back to sleep by 6am and back up at 7am to get ready for school.....she is napping now and having her feed.

We are off to the hospital this evening to spend some time with our little guy. We hope he has a more restful night to give his brain a break.

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