Wow its been 6 years since my last post!!! I'm a horrible blogger! In the last six years we moved to Colorado and last year we had another baby Girl! Catie is still undiagnosed and she is thriving. Chambers was diagnosed with high functioning Autism and dyslexia.

MRI results!

Finally some good news sorta!!! Catie's MRI results show that her cerebellar atrophy is STABLE, so that rules out Batten Disease!!!!! We are now looking into olivopontocerebellar atrophy (OPCA), Joubert Syndrome. I think that Joubert Syndrome fits Catie's symptoms a little better but we will have to wait for the dx because there is not test to confirm it. Neither of these disorders are fatal!!!!!!!!!

Another possible Dx

Well we got a call the other day from Catie's geneticist. He wants her to come in for another MRI. They think she may have something called Batten Disease (Neuronal Ceroid Lipofuscioses). Its a inherited fatal disorder of the nervous system. it causes:

visual impairment

seizures

decline in cognitive function

personality and behavior changes

loss of communication skills

loss of gross and fine motor skills

abnormal movements

decreased body fat

decrease in muscle mass

scoliosis

breath holding spells

poor circulation

difficulty swallowing/eating

teeth grinding

constipation

eventually death

yes Catie does ave several of these symptoms but i really don't think that she has this!! but i agreed to the testing to rule it out. the children with this end up in a complete vegetative state before they pass away. I am not willing to accept that is what is going to happen to Catie. She seems to be pretty stable right now. please everyone please keep her in your prayers.

Catie's New Glasses

Well Catie got her new glasses yesterday!! It was so amazing to see her reaction to them. She got the biggest smile, started clapping and looking around at everything!!! She was soooo happy to be able to see again. She hasn't tried to take them off and she has been in a wonderful mood all day today! she hasn't fallen as much today either! I'll get some pics posted later when i get some taken.

My first blog!!!

this is my very first blog so i'm probably not very good at it. I'm a stay at home mommy to Catie and Chambers, and a proud Army wife to Grady. This blog will mostly be about Catie she is my special needs baby. She is 4 yrs old and very very cute.lol We do not have a dx for her yet but we are on that jurney. i hope that everyone will keep up with us!!