Emmett had his first day of "pre-school". He seemed to really like it. I personally have mixed feelings as one of the staff ladies rubbed me the wrong way. However, if they can help him I'll get over it. We are still going to persure better options but until then we feel better knowing he is getting help....
As you know we had to cancel many of the early intervention programs for Emmett due to health concerns that needed to be addressed. We called today to see when we could get him back into the program. They told us this afternoon would be just fine with them. That's a huge relief as we were afraid we would have to wait. We only have a few months left of "early intervention" as he ages out at 3yrs of age. Hopefully this will help him and we can finally start to move forward a little bit.
Lizze met with her new psychiatrist yesterday morning. This is for help with the PTSD and fibromyalgia. She's been waiting forever to get in to see this lady. Appointment goes well until the doctor says that she can cure Lizze or everything inside of 6 months. Now by everything she means PTSD, migraines,fibromyalgia,acid reflux and the sleep disorder hypersomnia. Oh and she claims Lizze doesn't need the hysterectomy either. Now this through up all kids of red flags. To my knowledge there is no cure for PTSD. You can move on or move past it but it will always be there cause you cannot undo what happened. Also there is no cure for fibromyalgia, no one even fully understands wha causes it. So is this lady a quack? She also…
Gavin went to see Dr. R (his psychiatrist) this afternoon. Dr R, says that Gavin is psychotic, again. This means he has lost touch with reality and confuses whats real with whats imaginary. I knew we were going in that direction it just really sucks to hear the Dr. R say that. It makes it more real in that makes sense. We are waiting to hear when he will go to the Cleveland Clinic for the CFS (cerebral spinal fluid) study. They have to schedule the OR and Gavin will go completely under for the process. Once the CFS is collected DR. R will work with Dr. G (the movement disorder specialist) to get Gavin back on his anti-psychotics safely. Until then we will just have to wait and hope…
We received a call from Akron Children's yesterday (apparently while we at the Cleveland Clinic cause we noticed the voicemail last night). The neuro developmental pediatrician wants to meet with us right away. Emmett had an appointment in March but the message said we can't wait that long. I can't tell you how this feels. We know it's bad news...Otherwise they would just tells us everything is ok. It's one thing to know your child is Autistic but it's another thing to "KNOW" your child is Autistic. Unless you've experienced something like this first hand you just can't imagine how it feels. It's like my entire world is made of glass. The moment those words come out of the doctors mouth everything around me just shatteres to pieces. All I want…
This is a picture of Emmett at the appointment with the allergist. He is holding Lizze's hand and walking the long hall way...
Gavin got really frustrated while we at the Cleveland Clinic today. But considering everything he did ok. Here's a pic of him waiting.......
We just got back and are about to go into another appointment but I figured I would share while I can. The appointment was very long and we had several major meltdowns. The doctor suspects a basil ganglia defect. He is scheduling OR time at the Cleveland Clinic main campus in order to do a lumbar puncture. They will have to put Gavin completely under and manage his air way so that's a big deal. Still no med changes allowed for now. He said that "Gavin, for some reason, is predesposed to this type of movement disorder". To make matters worse Gavin now knows he's getting a lumbar puncture. So you can imagine the kind of fun we have been having........We also learned that Gavin has "profound" mental health issues.…