Spring pictures of our little girl...

Miss Ada Grace

"Tiny"

She's sweet with a little bit of sassy.

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Let's talk about CP...

A very nice lady in our CP group made all of the kids in the group these cute awareness banners. So I wanted to share Blaze's on my blog. March is CP awareness month. 

First, I want to tell you what CP is NOT. It is not a disease or sickness (like I once thought) and no you can't catch it. It is a brain injury. It could happen during pregnancy from an infection (as Blaze's did), during delivery, or shortly after birth. It is a group of disorders that affect the way the body functions and moves. It is one of the most common causes of lasting disability in children. The problems it causes can be from mild to severe.

It wasn't until last month on Feb 29th that we found out the exact kind that he has. On his Medical DX list it was always "CP unspecified". After having a study done at Emory last month, they finally gave us the specific kind that Blaze has. His is the Extrapyramidal type which is nonspastic CP and when you break that down further he has the Ataxic kind. 

Ataxic CP what Does that Mean For My Child?

Ataxic cerebral palsy is rare, occurring in less than 10% of cerebral palsy cases. Those with ataxia have damage to their cerebellum that affects balance and depth perception.

Ataxic children will often have poor coordination and walk unsteadily with a wide-based gait, placing their feet unusually far apart. They have difficulty with quick or precise movements, such as writing or buttoning a shirt. Ataxic CP usually affects all four limbs and the trunk. It is also common to have low muscle tone and difficulty with visual or auditory processing.

 Despite Blaze's CP diagnosis, he is one of the happiest kids that I know. He doesn't let anything hold him back from doing what he wants to do. Yes, it may take him a little longer, but he doesn't let that stop him. Every day he amazes us more. Blaze is for sure one of the most amazing kids that I've ever met. I love my little boy! 

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

An update on Blaze...

Blaze had a very important meeting last month. The process to get this apt/meeting actually started back in November. The meeting was with a group of doctors and specialists from Emory in Atlanta. The purpose of this meeting was to get some other opinions on Blaze.  Blaze has so many different diagnoses that we wanted to have some other opinions. They spent months gathering all of Blaze's records and any reports ever done on him (medical, therapies, school, etc). She said that they ended up with over 250 medical reports on Blaze (yes,we've been just that busy). Then they called us to bring him in on Jan 19. They did a complete physical and study on Blaze. They reviewed all of his medical info and diagnoses with me.  On Feb 29, they scheduled us to come back in for the results. Blaze's advocate from UGA met us over there. They gave us all the same diagnoses as before. They even gave us the specific type of CP that Blaze has which is the extrapyramidal type which is the nonspastic type which basically means the damage to his brain has caused him to be more weak, floppy, and off balanced. They referred us to a CP clinc at CHOA. They recommended us to continue with all of the specialists that he already sees, which we are. They agreed with Marcus on the autism and feeding disorder diagnosis and recommended us to continue in Marcus' programs. They do not think Blaze is a FAS child, which we are very thankful for. He scored low on that test which ruled out the FAS DX. They believe that all of the other diagnoses on Blaze's list are accurate and are the result of the CMV infection that he was born with. So pretty much everything was the same. They made school recommendations also. They want a meeting with our county BOE and a new IEP eval done asap. They feel Blaze will be best served in a special needs preschool room who is equipped to handle a multi disabled child with special attention to his hearing and vision loss as well as medical. They recommend him having a parapro and nursing (but we don't really feel that he needs nursing care). They also want me to schedule a meeting with the Center for the Visually Impaired. So yes, they gave me more to do but that's okay, I am thankful that they met with us and answered many of our questions. I'm also thankful for the large amount of resources and recommendations that they gave us.  I feel like we have our answers now and we know where to go from here to be sure Blaze gets everything he needs.









Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6