Wednesday, September 17, 2008
We're Getting More Help! Ya!
So I have been having issues with Tre’s PT with EI for some time now. He’s not progressing as much as he could. We have not received most of the resources he’s entitled to from Early Intervention. He has issues with his ankles while in a standing position. You think she’d recommend a pediatric orthopedic and explain the process of obtaining leg braces or other equipment he may need. No, she didn’t. Tre` should have a stander or a walker to aid him in his therapies. No such aids have been provided by her nor has she recommended a company and proper procedures to obtain one. It was getting frustrated. Tre` will b 3, January 6, not only will EI be discontinued but he has to be prepared for the school system. This process hasn’t been explained to me by EI. All of these issues are supposed to be handled or aided through EI. This clearly isn’t the case. EI is expected to help parents but it seems like I’m doing it all on my own. I’m tired and hurt. Tre` is finally crawling…well he’s been crawling but it had nothing to do with PT.

It’s hard to see him watching other kids running and playing while he’s incapable.
I contacted our insurance company and learned that outpatient therapy is covered. I also found a facility that specializes in children’s therapy. They provide physical therapy, speech therapy, feeding, and more. All we are responsible for is to get him evaluated and co-pays. After tons of research (including a walk through) Vic and I found the facility a sign of relief.

We had him evaluated by PT there and she spotted EVERYTHING I needed her to spot. I was totally impressed! She recommended something called a gait trainer AND pediatric orthopedic. I was even given information about an actual practice that’s good and willing to travel to me if needed! The PT was able to work with him for two hours. Just watching her work with him made me want to have a little premature celebration. I have never seen him climb up stairs. She worked with form stairs and was actually trying o do it himself. Note to self: purchase extra baby gates.

Right now we’re waiting for her complete evaluation and schedule to be mailed out so we can get the ball rolling. I’m so excited. Next step is to get him evaluated for other therapies as needed.

posted by Tre's Mom @ 12:23 PM   0 comments
Pit-bull With a Diapers
Lips There’s a little girl in school with Tre` that tries to kiss him every chance she has. While it may sound cute, Vic and I are not too fond of it. He’s in a medical day care! Like any other day care kids get sick all the time. I’ve been trying to keep him as healthy as I possibly can. I can see if it was a relative but I she’s obviously not.

So someone called me from the daycare saying that the little girl pulled a chair up to his highchair, climbed up, and bit him on his cheek. Hell fire couldn’t scorch me I was livid. I needed to know where the nurses and staff were, his reaction, if skin was broken, where the little girl was after the incident, have they notified the parent (s), and if they will write a report. I was told that there was no broken skin but a small round bruise that they put ice on. He didn’t like it but hey kept it on for as long as they could. She said the nurse left the toddler room to get snacks so they were short one staff member. That was understood. I was promised that they will keep her away from him and never allow ANYONE close enough to kiss him. Now he can play with other kids but I don’t want this happening again. She also told me she will notify the little girls’ parents once we were off the phone.

What is wrong with this child?!?! Biting people? Seriously? If it happens again, I’m going to have a talk with her mother!

Puppy 3
posted by Tre's Mom @ 11:06 AM   0 comments
Just One Step Away From Being Trach Free
Doctor Tre` was reevaluated for capping last week. I’m so happy to report that it was a complete success. Capping basically forces a person to breathe from their mouth and nose only. It shuts down the trached airway. So as some of you may know the first capping was ineffective. I was so nervous that he would handle the second trial but I’m nervous before every appointment (It could be as simple as being late (a regular) and as terrible as bad news.) Vic and I were caught by surprise the moment the cap went on. Tre` acted as if there was no change. He played and talked danced and talked some more. It was unbelievable.

His doctor was so impressed that she doesn’t want a sleep study prior to decannulation (Removal of a tracheostomy tube.) With a sleep study Tre` will be capped overnight during a 2 – 4 day stay at the hospital. Our game is to keep him capped while he’s awake. In a month, I will call the doctor to report how he tolerated the capping. At that point she and I will schedule his decannulation process. He will stay overnight for a total of four nights. The first two nights, he will be capped for 48 hours (night and day). If that is successful, his raced will be pulled completely out. He will be monitored for another two days. If THAT’S successful, good-bye tracheostomy!

Cheerleader 1

I’m going to keep my fingers…toes, and eyes crossed for this one. I’m shocked that this is being done in the fall. Wait, I’m nervous that this is being done in the fall. Tre` is known to catch a cold right before an appointment.
posted by Tre's Mom @ 10:22 AM   0 comments
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