Big day

Today, my mom, myself, Keegan, and Carson made the trip to Madison to be seen at

We had our first "official" appointment with Dr. I. He was great, his nurse was great, I just wish our news was a great as they were.

Anyways, I was looking for direction and direction is what I got. But deep down, it is so not what I wanted to hear!!! Know what I mean, Vern?

The appointment went like this.....(Dr. I) "You have 3 NSG. What are you looking to do?" (ME) I am looking to eliminate 2 and to keep YOU". (Dr.I) "Ok, good!"

Then, it went down like this.....

1) Keegan's complaints: Sever leg pain, headaches, and seeing little black fuzzies. His chiari herniation is minimal, but he has a crowed posterior fossa (posterior fossa - depression on the inside of the back of the skull, near the base, where the cerebellum is normally situated) and foramen magnum ( large opening at the base of the skull, through which the spinal cord passes and joins with the brain) So, Dr. I is not sure if his syptoms are chiari related or not. He reffered us to a neurologist and put him on Neurontin, which is used to relieve nerve pain. He will be on this for a few months and then we will revisit Dr. I to see how things are going. Not to bad. OH, and he has been diagnosied with Metopic synostosis (craniosynostosis) Cool hey?

2) Miss Carson: She has minimal chiari herniation, but she also has a very crowed posterior fossa and foramen magnum. Dr. I told us that he believes that 90% of kiddos that have cranio and chiari - the chiari and it symptoms are brought on by the craniosynostosis - no room for brain growth. He believes she could have increased intercranial pressure and has asked that we do another ICP monitor on her, sooner than later. That would be this =>

This is the girl that got so wild after coming out of surgery that I had to get in bed with her in the recovery room and they wheeled her and I up to her room. AND that she pulled the monitor out after 10 minutes in her room. UGH!! OK, if we must!!

Then, he has a sleep study ordered for her, don't know much about that. It will be our first. She will also need to see a ped urologist to see if her bladder issues are connected with her kidney issues or if it is a true symptom of her chiari.

So, we have many appointments scheduled and more pieces of the puzzles to put together.

I will keep you posted. Thanks for checking in on us.


Angela said...

Well ... you have a direction at least. No answers really though. It's just amazing to me that neither you nor Matt had any of this genetic stuff, yet your kids got so much. Sometimes, life is so not fair. Hang in there Cindy!

Erin said...

Ok, so as we read this it sounds good?. I am excited that this new doctor is doing something and not just telling you it's normal, thanks for the visit, now drive home. Thanks for keeping us posted on appts. Is there anything that will be run in my neck of the woods? I would love to see you!

Kath said...

I'm glad the doctor is taking you seriously, and I'll be hoping he can do things to help the kids in double quick time! If any of the kids would like another card, and a little package from England to maybe cheer them up a bit when they are having all the tests, just drop me a line, I'd love to send something!

Lost A Sock said...

That's a lot of information to digest! I'm glad to hear that he's got some ideas on where to go next and what he thinks, rather than more of the waiting game.

I hope your crew is at least fairly healthy for Easter tomorrow. We've finally kicked the stomach bug and are back to the sinus stuff, which is much easier to deal with. We'll have to catch up after Easter, finally, friend.

Also, I love your new header and layout here!!