This is the longest hospital stay since we move to California two years ago!
Sunday, October 27, 2013
Posted by Lacey at 9:54 PM
Tuesday, October 22, 2013
Posted by Lacey at 9:28 PM
Friday, October 18, 2013
Posted by Lacey at 4:21 PM
Thursday, October 10, 2013
If you remember we've had quite a rough time getting Jax the schooling he deserves. We finally had an IEP meeting a couple months ago. As of right now he is still doing home/hospital. We are working towards getting him in the classroom a couple days a week only for a couple hours. His stamina is very low, after only one hour with his teacher, he lets us know he's done! Then he usually passes out for a lengthy nap!
The paperwork to get him in the classroom is complicated. Basically all of his medical stuff has to be written out on paper and signed off by his doctor. He also has to have a nurse in class. Its taken me a while to find someone that I trust to be Jax only caregiver, with me not around! I think I finally found that someone! I want to make sure she's good and comfortable, and knows Jax different mannerism's before she goes to school with him. When he finally goes I will go the first day and just stand on the sidelines, letting the nurse do everything. I just want to make sure she, and his teacher know when he's telling them he's done, and what signs to look for!
Of course sending him to school won't be easy! Its never easy to let our kids go, but especially when the child depends on your for even the most basic needs. But it will be good for him, and he will benefit greatly!!
Right now his teacher comes out two days a week. She puts him in his chair and does activities with lights and music. She does a lot of stuff with his hands. For the first time he's doing school projects that every other kid does in school! The first time his teacher showed me a project I just cried! It will be something I will treasure forever!
Its so amazing what those little fingers can do! Even though he hates it, major sensory overload!
And by the end of the hour, he's letting us know he's done!
My baby is doing amazing things! Pretty soon I'll be posting him getting on a school bus! Man that will be a post you'll want to read with a box of tissues!
Posted by Lacey at 8:41 PM
Thursday, October 3, 2013
I seem to be going through a "tired of being a medical mommy" spell! I would love to go a month, even a week with no medical worries! I'm tired of doctors offices. Hospitals, Pharmacies and insurance companies! After opening a 4500 bill for ha IPV machine was when I lost it! I realized that a long as I have my beautiful boy, I'll never have good credit, I'll never be able to buy a house. We'll be throwing money away as long as we live this medical life. And it's just not fair! Our government is acting like two year olds all the while still getting a big salary while everyone else suffers! I'm not all that proud to be an American right now!
Posted by Lacey at 3:05 PM