Sunday, January 25, 2009

He HAD a cerebellum

We are more confused than ever. I spoke to my perinatologist on Friday...she looked back at my ultrasounds. It WAS there. Ok, so where did it go? Does this mean it's progressive? Degenerative?

I tried to contact Chase's neurologist, but he won't be in the office until tomorrow. So we wait.

I will let everyone know as soon as we know anything, even if it doesn't make sense!

God Bless!

Wednesday, January 21, 2009

Neurology Appointment

First of all, thank you so much for the wonderful emails and phone calls that are so full of support! Those really mean a lot to us.

Chase had his Neurology appointment at 9:30. It took about 2 hours and we don't have a ton of news. We saw two doctors and they've asked us for time to allow them to research and try to work with genetics in coming up with a diagnosis/prognosis. Today's doctors felt strongly that we will eventually find a syndrome of some sort through the genetic testing. They said the only other thought they would have would be a stroke in utero but the rest of his brain would show a lot more damage.

The conversation started before they had looked at the MRI films and the Dr. had said radiologists can "miss things" and chances are there is SOME cerebellum. Then they went to look at the films, came back a half hour later saying that the space that is supposed to be between the cerebellum and the rest of the brain is there, but NO cerebellum. Just that pocket of fluid.

Our hope right now is that the rest of his brain is doing some compensating. It can't do it all obviously, but he's doing very well under the circumstances.

We go back to the Neurologists in 3 months, unless something comes up first. They know we'll travel anywhere for the best treatment, and took no offense to it, they said they would do the same for their families.

Now we wait for DNA tests (could be in as soon as next week) and the Doctors to try to put some pieces together. If it is a syndrome, we'll know much better what the future holds. For now we have to be patient. The doctors said Chase is "fascinating". They used to say the same thing about Trey. I can't wait to be boring again, hopefully soon...well, boring in an interesting way at least.

Sorry I can't give you more information. As soon as we know anything we'll absolutely let you know.

Tuesday, January 20, 2009


Tomorrow is the appointment with the neurologist at Children's Hospital. Please pray that there is no more news to surprise us with. I'll update as soon as we get home!

Wednesday, January 14, 2009

MRI Results, the Bumpy Road goes on...

Chase had an MRI last week with the understanding that he has some mild CP. Tuesday morning the Dr. from the developmental clinic called me. His words were "Chase's MRI was much more involved than we expected and very hard to explain". Between my conversation with him, and an emergency visit this morning to the angel of a doctor, Dr. Robinson, from genetics, I can explain it like this...Chase has what is called cerebellar hypoplasia. This normally means a small cerebellum that is underdeveloped. Chase likes to get lots of attention though...and his doctors so far agree, they have NEVER seen this...but he has NO cerebellum. Instead he has an empty pocket of fluid at the back of his brain. The MRI report says "absent cerebellum with small pons" for our doctor friends to understand.

Dr. Robinson said this morning that had he seen the MRI without knowing Chase, he would not be surprised if it were the MRI of a child in a vegetative state. He also said Chase is "paradoxical"...he is doing way too much to fit the MRI...he has personality, laughs all day, says mama, dada, baba, hi....and loves to

He won't be able to walk, the cerebellum controls balance, but we have a super cool wheelchair coming our way in the near future. We see ramps and larger vehicles in our future.

As far as intelligence, the general feeling is since we Brittons are so smart, he has hope. It is a good possibility though that he is progressing now, but will reach 3 or 4 and plateau. No one far no one in our area has seen this...they can't give us a expectancy...anything.

I can't believe I'm having to email this, but everyone will know eventually, so I thought this was the easiest way.

Dr. Robinson did lots of DNA tests this morning that may give us more information, and we see Neurology next Wednesday. Hopefully they will send us wherever we need to go in the country to find someone familiar with this.

My pregnancy had NOTHING to do with this. All of this would have occured between 8-12 weeks of pregnancy (brain development and vision as well). Honestly I was happy to learn that I didn't hurt him.

We will update as we know more, just remember, he is a gift and SOOOO loved!!!!! I promise that will never change, we are so unbelievably happy and blessed to have him.