Monday, September 19, 2011

Fall is coming...

Or maybe it's already here. The temperature has dipped in the last 4 days and while this coming week will be warmer I know heavy coats and mittens are just around the corner. I have a love/hate relationship with fall. I hate the cold but I love the apple picking, the changing colors and cuddling in bed with a heavy blanket. This year fall will be busy for us. Not only do I have tons of fun stuff planned for the kiddos we also have some major appointments coming up for Zachary.

He had an appointment scheduled with Genetics for the end of this months but something happened and they changed it to the 10th of October. He also has an Ophthalmologist appointment in November. We are still waiting on Mayo. Things seem to be moving so slow. Yet so fast at the same time. I got his full MRI report mailed to me and that sent me into a hysterical tailspin. There are a few things on there that were never mentioned to me such as the fact that both his parietal lobes are affected with a delay in the myelin. I have no clue what th is means besides what I have Goggled. His neuro is on vacation and the pediatrician did not feel comfortable talking to me about it. That can't be good right?

Some good news is that Zach has done fantastic in preschool. He's playing with the other kids and listening well. He loves going now. He gets so upset on Wednesdays when the bus drives by the house because he wants to go. I hope this continues. I started to get scared when on the 4th day he was continuing to scream after I left.

Something else to mention real quick the 3rd Annual Walk for Apraxia in Des Moines is on October 1st. If you would like to walk or even just donate you can find the information here

Wednesday, August 17, 2011

I'm dreaming right?

That is how I feel right now. I feel like at any moment I will wake up screaming and find out the last few days have been one big nightmare. The MRI results came back showing severe delayed Myelin. Myelin is what surrounds the central nervous system. When no Myelin is there the neurons (or is it Axons?) die off. Then the blood work came back. A few of the results were abnormal. One being the test involving the enzyme with the Very Long Chain Fatty Acids (VLCFA). This, along with the MRI results indicate to the doctor's that Zach most likely has some form of Leukodstrophy. Such a scary word. Unfortunately for us the doctors, including his neuro are dragging their feet and hedging around the facts. We did find out that he gets to go to Iowa City Children's Hospital in a few weeks but this is only to see a developmental pediatrician. It will have nothing to do with these new findings. In fact this is an appointment we were trying to get BEFORE all these other tests were ran. When I ask about when Zach will see a neurologist at IUCH they tell me it could be months, maybe even a year. Their excuse? They want to do another MRI in 9 months before getting another opinion. Bullshit. They tell me these things take time. Time that my little boy may not have. So a friend recommended we call Mayo. I did and was pleased and shocked at how fast they moved. They said as soon as they receive his records they will schedule him an appointment, most likely getting him in before the end of September. His pediatrician and neuro promised to fax everything Mayo needs by the end of the week.

Tuesday, August 9, 2011

Our world will change tomorrow.

It may change for the better but if I listen close and read between the lines of what the doctors tell us than it's more likely that the change will knock us on our ass and leave us with more questions then answers. Tomorrow morning is Zachary's MRI. The neurologist is looking for anything out of the ordinary. Signs of a stroke, cysts, tumors, anything that may point us in another direction for helping Zachary. Both his pediatrician and the neurologist he consulted feel that something else is going on besides the Apraxia of speech. In all other area's he seems to be just fine, heck in a few areas he's even "above average".  I'm scared. Freeze you in your steps scared about what the scan will show but at the same time I'm thinking to myself that if we know what all is going on we can help him even more. And it won't change the boy he is now or even the man he can become. Wish us luck.