In the morning, we have yet another Wraparound meeting at the boys school. As much as I love our Wraparound team, Lizze and I are seriously considering dissolving it and moving on.
We don’t seem to be getting anywhere and Gavin’s health is getting worse.
Right now, Lizze and I are running on very, very limited resources and anything that not working is weighing us down. Does that make sense?
If we decide to pull the plug, it will have nothing to do with not being grateful for everyone’s time and effort. It would simply mean that it’s just not working out.
Truth is, Gavin’s mental health has once again taken a back burner to his physical health. Also, I think that are situation is so unique, no one knows how to help us. We kind of fall into one of those places where there really isn’t anything that most people could do.
We need a real life Dr. House……
We need to take Gavin somewhere that a team of doctors can pour over him, from all angles and figure out what the hell is going on, how bad it’s likely to get and what if anything we can do to slow done the progression.
I don’t care if we have to stay there for a month. We need answers and I feel like time is slipping through our fingers.
I’m running out of patience and I’m terrified that Gavin is running out of time.
How are we supposed to focus on anything else with this weighing so heavy?
This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. 😉
Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. 😉
For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.
The only thing I can think of is the Mayo Clinic and you’ve probably already thought of that. Did the Cleveland Clinic look at the mitochondrial angle? There used to be a specialist there named Bruce Cohen but now I think he’s head of neurology at Akron Children’s (which you probably also already know). Argh. So wishing I could think of something to help. I was even going to offer feel free to contact us in Cleveland if you need local help while you’re here for medical reasons – but I see you’re an hour away already!
Deborah2013 we are trying to get into see Dr. Cohen. 🙂
I can’t begin to imagine what you are going through and I bet you have poured over countless doctors and research to figure out what is going on. I do know that the doctors at Miami Children’s Hospital in Miami, FL are great and also at Joe Di Maggio Children’s Hospital in Hollywood, FL. I know Joe Di Maggio’s does not turn anyone away regardless of insurance, ability to pay, etc. Both hospitals have been great at working with my children when their medical needs have been questionable. I don’t know if you can contact them and see about assistance or if they can recommend a real life Dr. House of sorts. Keeping you in my thoughts!!