New Direction

Sorry it has been a while since I've posted, Bradley and I have been through ALOT in the past few weeks. In my last blog I had asked for your prayers for Matthew's upcoming scans. I have to say Thank you, Thank you!!! God does answer prayer faithfully. Matthew's scans were perfectly normal and healthy.

Why scans you might ask? Matthew has been diagnosed with Joubert Syndrome not Dandy-Walker. They are both closely related with similar symptoms with severity being mild to severe. With Joubert syndrome some people have a risk of developing kidney and liver disease, therefore we had to have an abdominal scan done along with a urine check and the dreaded blood work done at Baptist. All is PERFECT!!! These scans have to be done yearly.

We had been t0 see the genetics doctor at Baptist a couple weeks ago for what we thought to be a routine visit when it was unbearable. We did have genetic testing done on Matthew which we won't have the results until after his 2nd birthday. The doctor said she was very optimistic with Matthew compared to some of the other kids that have JS. Some of these kids don't walk or talk til the age of 5 yrs. old. Matthew can do both-he struggles some but HE DOES IT!!

Where we are now? We have qualified for a clinical trial for those with JS at the National Institute of Health in Maryland this August to see what risk Matthew may have at developing kidney and liver disease. Please continue to pray for him and that this is a very, very mild case with a very low risk of developing any problems.

Matthew's walking is getting better everyday, he pretty much walks independently indoors on a level surface when he wants to, we now have to work on walking outside on the grass.

His talking is getting better too. He can say bye bye, mama, dog, pop, dada, papa and signs alot. He can now feed himself with a spoon without spilling much at all, although he still wants to play in his food.

He is truly an angel and our little MIRACLE. We love him sooooo much.

Good Night and God Bless

P.S.

Thank you Terri at Dandy-Walker Alliance for keeping our blog on your website to still help give parents hope whether it be Dandy-Walker or Joubert Syndrome.