Hi Everyone!
Sorry I've taken so long to post since last one. I'm sorry that I was so harsh with the last posting. I was having a really bad day and I should not have written anything until I felt more positive. One thing is for sure ~ every time the "team" tells us news Jordan seems to prove them wrong!!! I wanted to give you all Jordans daily schedule so you can see how difficult it would be for her to have any visitors.
7am-8am ~ They feed Jordan through her G-Tube in her belly.
8am-9am ~ Me and/or the nurse wash Jordan up and get her dressed for the day. We try not to move her around a lot as she has a full belly and we would not want her to throw up on us!
9am-9:30am ~ Dr. Beck's "team" comes in to work on Jordan. This is called Osteopathic Manipulation. It works on relaxing her muscles all over her body.
9:30-10:00am ~ Speech therapy works with Jordan with oral stimulation and we feed her small amounts of pureed food by mouth. We are trying to teach her to eat and to swallow. The food they are using is "thick".
10am-11:30 ~ Both Occupational Therapy and Physical Therapy work with Jordan to exercise all of her muscles.
11:30-12:00 ~ She now gets a lunch tray and I feed her a very small amount slowly to teach her to eat.
12:00-1:00pm ~ Jordan now has a full belly and is very tired from all the work and we encourage her to rest/nap.
1:00pm-1:30pm ~ Speech therapy is back to do some more work with Jordan.
2:00pm-2:30pm ~ Child Life is now coming in to get involved with Jordan and read to her or try to communicate with her what she might like to do for activities as she improves.
2:30pm-3:30pm ~ OT/PT are back to make Jordan work out very hard!
3:30pm-4:30pm ~ Jordan is hooked back up to the machine that feeds her through her belly.
5:00pm-5:30pm ~ Supper tray comes and I try to get her to eat a little bit by mouth even though she is pretty full at this point.
6:00pm-7:00pm ~ Shower time! Jimmy & I put Jordan in a chair on the floor and I can get in and shower her and wash her hair. She seems to enjoy the warm water on her muscles.
7:00pm-9:00pm ~ Snuggle time for Dad, Mom & Jordan. I know she is too old but she really enjoys it and we do too !!!
So you see, there really isn't a good time for visitors right now and therapy is extremely important for Jordans recovery at this time.
She is at level 4 on the Ranchos Los Amigos Scale and this is the worst stage. She is pushing us away, hitting, biting, pinching and trying to kick right now. She is aware of her surroundings and we believe she is aware that something is wrong with her left hand and leg. She is VERY frustrated and aggitated and aggressive right now. We as parents this is very hard to see and believe me you as friends would not want to see this stage and Jordan would not want you to see her like this. We have to remind ourselves that she is still less than half way to getting back to the 99% of Jordan we knew before. But Jordan is a fighter and is not giving up easily in this fight.
She is doing awesome work. She can pick colors and animals. She can hold up 2,3,4 fingers when asked. She is trying to brush her own teeth (very messy) but she still tries very hard.
We tell her every day how proud we are of her and this was a terrible accident.
Our "team" meeting went very well this week and everyone is in agreement that Jordan is showing great progress. They don't know what to say about her at this point because they felt she would never be able to do all she is doing. They don't know the Jordan we all know!!!
Keep on believing as we are and she has more to prove to us all ~ We're sure of it!!
Love: Brenda, Jimmy & Jordan
