Tuesday, September 20, 2011

Still no diagnoses.

We met with Cameron's neurologist yesterday and his staff. We were there over 5 hours. Mostly waiting which is sooo much fun with two active toddlers-NOT. It wasn't too bad though.

We talked with Dr. Foster quite a bit and answered all the usual questions about his behavior and any new developments. Unfortunately it seems as though we are just as far away from a diagnoses as we were a year and a half ago. Cameron's case is just so unlike most brain diseases.

They did a whole other batch of genetic tests this morning at Memorial Hermann. They feel strongly that it is a genetic disease but didn't mention much about mitochondrial disease this time and in the past that has always been the front runner. They even mentioned Retr syndrome (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503/) which in the beginning thought to only occur in girls but apparently it can be present in males as well.

We did read the reports from his last MRI and the only new information we saw was that he now also has diminished gray matter in the hippocampus region. This is what causes long term memory problems. That makes so much sense to me because it usually takes Cameron a very long time to learn new things but if you don't use that new skill for a week or two it is GONE and you have to start over.

We are relieved that Cameron has been mostly seizure free since his first episode.

Also, Cameron has started babbling. He will say hi over and over in his sweet little voice and now he is babbling 'buh buh buh.' We all love to see his big smiles as he entertains us with his sounds. He has been quiet so long so we love love love it!

We are driving home from our doctors visit in Houston right now. After two nights away from home we are ready to get there!

Thank you for all of your thoughts and prayers!

Lots of news.

Last week we learned that our insurance had changed and that Cameron is only allowed 20 therapy visits per year. Cameron meets that in a single month so obviously we have had to cancel all therapy until we find a solution. We have always been turned down by government programs in the past but I am reapplying. It's all we know to do. We cannot afford to pay out of pocket for therapy so we are hoping to find help. Cameron will require therapy throughout all of his life and it is so important for him.

Also, last week we met with Brian from Care Source (awesome service!) and were talking about getting Cameron a bathing system for the tub. He has outgrown his baby seat now that he is a whopping 32lbs and he still requires support in the bath. We picked out the best one suited for Cameron's needs and then found out a few days later that the bath chair is not covered by our benefits either even if he needs it for medical reasons. Cameron also needs new leg braces because he has outgrown his first pair. Both of these things are very expensive as I'm sure you know. Everything for special needs children is.

We are wanting to do some fundraisers to raise money for these items and for Cameron's care as well as overnight trips to Houston for his doctor visits. His latest blood work is costing us over $3000 that we are on a payment plan for.

I don't mean for this to be all about money, but unfortunately that is our main problem lately. If you have any ideas for fundraisers or would like to help us get something started please comment below or contact me by email or Facebook. All help is greatly appreciated!

*right now we are having an Avon fundraiser!

Check it out here: http://shop.avon.com/shop/default.aspx?newdept=&s=Fund&c=repPWP&otc=201120&bnd=&setlang=1&ym_mid=&ym_rid=

Just be sure you have Cameron's event selected!