Wednesday, January 14, 2009

but mom I don't want to go to sleep!

Last night when I got home my aunt had Jude sitting on her lap on the couch. I was very excited to see him so I picked him up to give him a hug, but I felt something was off. His shoulders shrugged a little, and he wasn't looking at me. I explained to her that I thought he might be starting a seizure, and that I would like to go ahead and give him the Klonnopin. Sure enough 30 seconds after we gave him the medication he started a seizure. Caron said it was rather amazing I could sense it was coming on, but I have just gotten used to his twitches. So the bad news is he had another horrible audible seizure, but the good news is they were limited to only two yesterday. Well Jude fell asleep after his seizure, Em was eating at a friends, and I went to take a long hot bath after a very busy day at work. Once I got out Jude woke up.........and he decided to stay up. He was actually acting rather out of character, but I did go ahead and feed him some. Then it seems he couldn't hold his paci in his mouth, he sounded very rattled, and it scared me a bit. So I told Mike I wasn't really ready to go to bed yet, but I was going to lay down with Jude to see if he would fall asleep. Oh noooooooo, Jude didn't want me to lay him down. He wanted to be in my arms, me holding the paci in his mouth, and cuddling him. It was probably a good hour and a half and FINALLY he fell asleep. At that time Mike and I were so tired we fell asleep too. Then guess what? Yep Jude was WIDE awake at 5am, and had been a bit of a restless sleeper through the night. So I heard him make his normal audible seizure sound when he woke up at 5......yet he didn't go into a full blown seizure. So we administered the klonnopin again, and fed him 4 ounces. He then fell asleep in between us again, and I moved him to his bed. As of this morning when I left he had not had any seizures. So I am crossing my fingers that we have a good day. I am not sure why he was so restless last night, or what was bothering him. I am sure the medication is responsible yet again for him being unable to control his paci. We have good days with Jude where we actually see the light in his eyes, and then we have days he seems very spaced out. I also noticed Jude drawing his hands up more last night which makes me wonder about CP, but I know it's very early to tell.
So I am personally pretty tired today, but thankful I have a job to be at. Mike and I have a counseling session today to sort through all of these circumstances. Then Jude has Gymboree, but I will have to miss out on that today due to the counselor. Then ECI comes tomorrow, and thankfully my aunt is going to participate in that meeting to see what therapy will be provided for Jude. Then next Tuesday MDCP comes out, and I have been told I really need to attend that so I will be trying to take a long lunch that day. I guess we are moving a long and our lives are finding their way down our new path. My aunt that lives here called me last night, and told me how proud she is of me. It's strange hearing that because I feel there is no other way to handle this situation. Jude is our boy, and we love him.
So my friend Sarah is over here telling me how she is working on the fundraiser for Jude. She is so sweet!!!! It sounds like lots of fun.
As I said above Em had dinner with her little friend down the street....I swear they are attached at the hip.


Lisa said...

I am glad your Aunt is such a blessing to you right now. I am sure it is a relief to be at work knowing Jude is at home getting great care from a nurse ( I am a little biased). I will say, one of the biggest side effects I had at first,(and still sometimes) with the Topamax is numbness and tingling in my hands and feet. It was really bad at first and is one reason why some people can't or don't tolerate it. I stayed on it because of the other side effect...weight loss. It makes my feet feel like they are in that state of falling asleep. Usuaually it happens at maybe that is why he's a little fussy at night?? It has gotten so much better! Just a thought.

andrea said...

my son had skull surgery at 5 months old, cranial synostosis. everyone always commented on how agreeable we were with his situation, and i always replied, "we have no other choice, the surgery is necessary, so we have to accept it!" being a great parent is taking what is given to you..sure you cry, become disappointed, upset, but that doesn't help your child.

i know exactly where you are coming from when you say, "He is our son, and we love him". People can admire you all they want, but you still have a beautiful child that you will go to the end of the world matter what! unfortunately, some parents don't have your attitude.

i guess i am just saying that i am so proud of you, you are BOTH AMAZING PARENTS, you bring so much hope and love into this world, and and i continue to pray for the best scenerio.