Wednesday, March 25, 2009

Wednesday

So I did end up going home a bit early from work yesterday, and I fell into my bed when I walked through the door. It was soft and comfortable, and I didn't move for over an hour. I could have slept longer, but Emily came barreling through the door from school. She is such a sweet kid though because when she opened my door, and saw it was me in the bed vs Mike she knew something was up. I heard her tell her little friend that comes home with her "shhhhh my mom is home and sleeping". I drifted back off to sleep for about a half hour, and woke to a woman's voice in my living room. Before you get alarmed, it was just the ECI therapist there to give Jude is PT. I could hear Mike and the therapist cheering so I finally rolled out of the bed to see what all the fuss was about. To my surprise the therapist had Jude on his arms like he was in a position to crawl, and he was supporting himself. He wasn't happy about it, but regardless of that he was supporting himself. He did very well in therapy, and they have decided to increase the amount he is receiving to twice a week.

So, I tried to eat something while watching his therapy, but still just didn't feel that great. I did get some soup down, and then therapy was over. Mike needed to go to the store to get Jude some formula so Jude and I snuggled into the couch to watch some tv and rest some more. I enjoyed my time with him, and enjoyed my de-stressing time. When Mike got back I told him when I was trying to fall asleep I kept startling myself awake. He said that's a sign of stress which I am attributing my current lack of 100% health to. I am going to work on relaxing a bit more. So, Jude had not had a seizure since 10:30 am and we were beginning to get a bit excited thinking maybe the new medication was already working.

About 7:30 my family dropped by to bring some pizza, a bday cake, and such because we never got to go out for my bday. I was still very tired, but it was great to see them and not have a to cook!!! After they left I once again crashed into bed only for Jude to have an immediate seizure. His seizures went on throughout the night, and we were up straight from about 2:30 - 4. Once we fell back to sleep Em came down about 5am letting me know she wasn't feeling well. So Em is at home today, and Mike needed to get out and do some chores. He said he can wait until tomorrow though. We are exhausted, but relaxing yesterday and getting a nap in made all the difference in the world!!!! If I had gone a week with no sleep I think I would have been hearing voices in my head :). I am very glad I made the decision to go home yesterday.

So we are slowly introducing the Depakote to Jude, and we will be increasing his dosage on Friday. I am hoping that the stretch between his seizures gets less and less. I am beginning to allow myself the right to imagine a seizure free lifestyle. We would no longer have to worry about seizures affecting Jude, going out in public, etc etc. It would be like experiencing a normal life again. I am PRAYING this medication works!!! I really feel like we have earned a break. Mike said last night that his mother always tells him "Michael, God is pruning you for something special", he said he told her "Mom if I was a tree I would be a stick because I have been pruned so much!". He cracks me up!

I am looking forward to the weekend, and still want to work outside in the garden.

2 comments:

Bird said...

It will happen. . . I know several families who went through TONS of stuff, but you will find something that will help Jude and Depakote might be it. Keep imagining that seizure-free time because it will be here and you will SLEEP THROUGH THE NIGHT!!!!

Fingers crossed and sending you good vibes. . .

The Soldatke family said...

I just happened upon your blog and read a bit of your story. I just wanted you to know that our infant son, Matthew, who was born with hydrocephalus and has seizures and infantile spasms is on Depakote (along with 2 other seizure medications) and it was the ticket for him. He has been on it since he was 6 months old and we don't see maybe but 1 seizure per day (he used to have at least 8 an hour while he was awake!) I know it can be a scary medication with all the warnings about being under 2, a brain malformation and on other seizure medications and the associated liver failure... but just wanted you to know that we qualify for each one of those, but have not had problems with his liver at all. We do draw lab work routinely, just to make sure things are okay though. I sure hope it's the ticket for your little guy! You need some sleep!