Therapy, seizures, appointments, pharmacy, What else?!

When I woke up to look at my calendar today, I almost had a heart attack, ok… maybe just a panic attack… alright… maybe I just plain freaked out. My day starts with getting my kids ready. Drop Jett off at the bus stop by 8. Drop Tyree off at babysitters since we have horses and A LOT TO DO today. Come blog (just added that since that is what I chose to do) I need to clean and get a hold of Neurology and get to pharmacy all before Music therapy which starts at 11:15 am. That lasts an hour then in a half hour when that is over we load up and go to horse therapy by 2. In between that time Jett has early release and comes home. Then I have to get Tyree picked up by 2 since there is student led conferences today and his babysitter has kids.. offered to take Tyree… but would NEVER put that burden on any one! School speech was going to do a make up at 2:20… had to cancel her for reasons to come… OT is normally at 3:30 she cancelled and is doing a make up so we squeezed a new therapy we are going to check out at 3 for an evaluation. Then our NEW speech therapist starts today at 4:30. That lasts an hour. Conferences are from 1-6. WHERE DO I FIT CONFERENCES AT!?! Oh boy am I ever Stressed out! Which… being on the computer doesn’t help! ha!

Check out the curve! You think this is bad... you should see when he is sitting!

Santana has some funky things going on. I am a bit concerned. A LOT concerned. His back has taken a TURN (no pun intended) for it’s worst. I am super worried about him. It is twisted and curved more. His tone is SO high right now. We have been off his depekote for almost 2 weeks. But he seems like he is in with drawls or something. I don’t understand what he is doing. His tone is high and he is breaking out into really bad sweats and shaking. Last time the thought it was cardiac but we got cleared on that. So I am not sure what he is doing. I was on the phone with a therapist last night and he was saying while seizures are not good, sometimes it is a sign of break through. I have always thought that and have heard that before. But whatever. ALTHOUGH… when he started this eye thing where his eyes are coming together, he started this crap. So maybe he is frustrated and exhausted from it. We are going to see a new eye doctor. We will see what happens.

Jett has spring break for 2 weeks. We think I should take Jett to California for a few days. I have been trying to get in order so that my nurses can work a full day while James is at work. I got them set through Thursday. So now I need some help with Tyree. He can go to a babysitters down the street from 7-4:30. But I need to find help from when James leaves at 6 and then after 4:30 to when he gets home about 7. If anyone is up to help us with those crazy hours or is willing to take him all day… we could use the help. If all else fails, we can just meet at the border and drop him off with my parents. The problem with that is I think their Tranny is going out so can’t. AND I WANT TO GO!!!!! I miss California! I have not been back since May! I need me some mom time and I got some friends there I would LOVE to see!!!! You ask, Why not take Tyree? He is at a tough age and I think it would be nice to give Jett some one on one time. He needs some attention… without being told… go get a diaper, can you play with your brother for a minute, can you get him this or that. Jett is an AMAZING big brother and we sometimes ask a lot of him. We just need to go chillax with Grandma! HeLp…Please.

Santana continues to do well with the tastes in his mouth. He has NEVER had tongue or chewing action before. God is pretty much AMAZING! Keep praying he pushes through this cold! His sats have been staying up so I pray it stays that way!!!!! SEIZURE NEED TO SEIZE!

1 Comment

• 

  By Suzi Searles, March 11, 2010 @ 11:03 am

  Sounds like it’s going to be a crazy day. I’ve had a few of them myself. Praying for you to have wisdom concerning Santana’s seizure and tone issues. It’s bad enough dealing with all that we deal with and then to put the problems on top of that it almost pushes us over the edge.

  I hope and pray that you will be able to go to CA. If I lived closer I would take Tyree a few days, I’m sure he would have fun playing with my kids, but I live way to far away to be able to help, sorry.

  Love in Christ,
  Sue

Other Links to this Post

RSS feed for comments on this post. TrackBack URI

Leave a comment