The last 5 years have been a whirl-wind. Logen has certainly kept us on our toes! After spending a week in Children's at the beginning of December 2008 & begging you all for prayers- a blog friend said she'd create a 'Pray For Logen' blinkie. I will post this link so that you all can add the blinkie to your blog or where ever you'd like. You can also link it to our blog/this post.
So, I wanted to sum up in a single post why we are in desperate need of prayers.
Logen was diagnosed with Cerebral Palsy January 31, 2005 at 18 months old. I will never forget that day. Just a few hours before he had had an 'abnormal' MRI. Our Neuro didn't come out and say CP, so I asked her. Her exact response was "You could say that". So we left, And I cried the entire 4 hour drive home. I was not ok with the Dx. Honestly, I have never accepted it. As Logen's mom, I had a little 'tug' that said, nah- this can't be it.
We searched for different Neuro's. I spent 18 months working to get into St Louis Children's Cerebral Palsy Center. The very first time we saw this Neuro she said, This is atypical CP, if CP at all. My 'tug' was partially confirmed. She'd never had a case quit like Logen's. Infact, after spending nearly a week in the hospital at the beginning of this month- we heard about 10 Doctor's say this. My sweet baby boy is a mystery. Our 'main' neuro, we'll call him W, was walking out of our room at one point and said "He's definitely a mystery and we will do our best to figure it out. There's a 50% chance we won't. But, we will be happy to refer you anywhere we need to." I said, ok- we'll go to Guam or Sweden or wherever we need to go. We've been passed from Dr to Dr trying to figure this out over the last 4 years.
The 2nd MRI, 100% normal. You know, you pray and pray for a miracle. We prayed for a clean MRI. We got it! Praise God. But, now... what? We are looking at a 'worse' (I hate to say that b/c who wants ANY dx period?! I know my SN friends know what I mean though) dx. He doesn't speak. He aspirates. His tone is abnormal. His EEG is constantly 'abnormal' and looks 'worse' when he sleeps. His hands don't function as ours do. He started having seizures at 4.5 years old. They have gotten worse in the past few months. He takes medication 7 times a day. He is also not growing (he's been in the same size clothing since before I got pregnant with Parker in the spring of '06) and has not been eating much. We are seeing a nutritionist and have started pediasure. Something is 'not right' and we have got to get it figured out!!
Have you ever prayed that your child has CP? That it's something that doesn't affect your child's life-span?
We are looking at the possibility of Angelmans/Prader-Willi Syndrome. It's a chromosomal mutation, deletion, or something on the 15th chromosome. I've had some of our therapists say, no- I've seen kids with this and it doesn't fit. Some said, maybe. I don't know. We've done research. The infant stuff fits. Not all of it does. But W said not everything does fit Logen, but it's a place to start. We are waiting for other genetic tests and this test to come back. We see a slew of dr's in January. I cannot wait for these appts.
We need prayers b/c the future is uncertain. We don't want it to be Angelmans. The info W gave us is 'not-so-great.' Never speaking & shorter than average life span are a few less than desirable characteristics.
For now, the CP dx has been taken away. Seizures are the primary dx. Developmental delay is second. Along with 3 or 4 other dx's.
We are desperate for prayers. And, of course answers. I've known all along it's not CP. That Dx has never felt right.
KEEP ON PRAYIN'
