Rethinking it all

I'm rethinking all of our doctors. Our wonderful Pulmonologist shared the news I've been dreading, but expecting, for some time. He's retiring. It's his time for sure but I'm so bummed. He's suggesting we see someone else on his team. And I guess we will try. But at this point I'm kind of rethinking all the doctors.

We moved to CHLA for him. We love our Neuro Opthamologist there and will stick with him (although his eyes seem like they are getting worse).  I liked the Orthopedist we just saw but hopefully we won't need to see him often. And generally like the Cardiologist, again, hopefully won't have to see her often either. But now I'm researching Neurology to find someone who's seen M-cm, and we already get another opinion from Neurosurgery at Cedar's, where we also see Genetics. So maybe it's okay to be all over the place, as long as the docs are all the right fit. And I'll just have to be diligent about getting records shared.

On the alternative front, I'm also rethinking our Osteopath, who I've always really believed in. But he doesn't share much with me. It's so difficult to understand what he does anyway, I'd love to see someone who can explain what the plan is and how he should respond to the treatments, etc. My friend, who's daughter also has M-cm, sees someone else in SM who I've heard good things about. And sounds like her Homeopathic doc is also really good. I just don't know what's working and what's not but at this point I'm willing to try just about anything.

I even bought another powder supplement today that a friend told me about. It's called Nutriveda and it's supposed to helps kids with Apraxia & Autism. Not that Ian has those particular conditions but it's all about helping the brain. Anyway, I'm willing to try it. If I see a difference, I'll keep with it. If not, I'll stop.

I just feel like time is slipping away. The older he gets the less receptive he'll be to all of these treatments and therapies. He's still getting stronger with his walking but not ready to go it on his own. And he really seems like he wants to talk. And it's driving both of us crazy that he can't. He gets so frustrated and it makes me so sad.

And lastly is the stem cell treatment. I've been looking into it via a variety of sources. I know many who've gone to far off places to have treatments. But I've now talked to the woman at Duke about a US study. Because Ian has Hydrocephalus he might qualify for this particular one. We have to see what the volume of his collection is. I know it's not a huge amount but supposedly it's a clean capture which is more important. As the woman from Stemcyte told me, the first priority is always the baby's health and of course they had to get him breathing. Might be why they didn't get a large amount.

The deal in this country, thus far, is that you have to use yours or a family member's. Unfortunately I didn't collect Lila's, which is such a bummer! But we'll see what they say about his. The crazy thing is it's a 2 year study. So one year would be placebo and the other would be the actual cells. And of course you can't know which is which.

I've been a wreck lately. Actually I guess I'm always somewhat of a wreck ;-) Everything makes me cry. It's pathetic! But I'll pull it together and plod on. Researching the night through.