Sanity: 08.2009

8.27.2009

First one, now two, maybe three???

Today, Keegan had an appointment with Dr. "I" in neurology. We were there to discuss a plan of treatment for his sever leg pain. We chatted about the plan, and let me tell you it was no where what I had thought it would be.
We see 2 Dr "I's", 1 in neurology and they other is our neurosurgeon. 1 doc is treating his chiari and the other one is trying to weed out metabolic myopath. Over the last few weeks, Keegan has been going in for blood and urine tests. The test that they running have come back normal thus far. The symptoms are pointing back at Chiari.

Because of our "strange" chiari family back ground, and the weird crowded posterior fossa, they are finding that our children are proof that even though they have no major herniation, they still have true chiari symptoms. With that said, Dr. "I" believes that the decompression surgery is helping our kids symptoms.

Normally, if kiddos come to Dr. "I" with the MRI that my kids have, he would not be so aggressive. Maybe put them on something to help with their symptoms but certainly not offer surgery - as we've been told. But because of our strong family history, Dr. "I" is being a bit more aggressive with Keegan.

At our appointment today, we were told that Dr. "I" is open to decompressing Keegan, again because of the history.

The metabolic myopathy testing is being done just to check all other sources before heading down the chiari road. We are waiting for 1 genetic test to come back, and if it comes back normal, Keegan will have another MRI to see where things are. Then we will talk about the "open to decompress" idea.

8.21.2009

Heroes4hope

OMG...So excited!

Carson and Cooper have been invited to the Jorge Posada Foundation - heroes4hope Gala on September 10th!! Jorge is the catcher for the Yankees, and is son also has craniosynostosis. Because of that, Jorge, and his wife Laura, started a foundation to help families with Cranio!!!

The Gala is in New York City. The spotlight this year is on the 20 greatest (living) Yankee catchers. The cranio kids will be walking on stage with a Yankee Catcher!

HOW COOL IS THAT???

If anyone cares to join us, tickets are: $750.00 a person! EEEK!

Here is a quick video done by Laura Posada:

http://www.youtube.com/user/posadafoundation

8.15.2009

Carson's Chiari surgery pictures

August 4Th, 2009

Waiting so patiently in the waiting room

4 hours later in the recovery room

OUCH!

24 hours post op

PEEK~

48 hours post op

72 hours post op

Carson in the positive image salon getting her nails painted. (no, she is not with Diane Sawyer)

96 hours post op ~ Yum, Eggs!

5Th day ~ Finally going home!

8.13.2009

It seems like forever

Holy cow does it seem like forever since I last posted here!! EEK!!

I've been gone, but hopefully not forgotten!

As many of you know, My 3 yr old daughter, Carson, had her first chiari decompression done on August 4Th with an outstanding neurosurgical team. Surgery took around 4 hours, from the time I left her, to the time I got to see her beautiful face in recovery. Things moved pretty smoothly prior to surgery. She did fairly well up until she saw the gown and then freaked out. She kept telling me to put her shoes on and that she wanted to go home. When the time came to take her to the OR, I put on my scrubs and carried her into the OR and placed her on the table. She was one scared little girl.

She came out of recovery just fine and was moved up onto the PICU floor. She spent 24 rough hours in the PICU and then was moved onto a regular neruo floor. For the most part Carson recovered well. She had about 3.5 days of vomiting, but other than that she was a trooper.

We spent a total of 5 days in the hospital. She is now 1 week, 2 days post op and is doing fairly well. She is having a lot of muscle spasms, but has been given meds to help with that.

Today we had our 1 week post op appointment with the NSG and things are progressing nicely, besides the pain. Knock on wood that things continue to move in a positive direction.

We will meet with the NSG again in 3 months for a post op MRI.

Until then we are laying low and relaxing. Thanks to everyone for your thoughts, well wishes, and prayers.

8.03.2009

Surgery update

Carson's surgery is scheduled for 7:30 am on Tuesday. This will be my last post on my blog until we get home. If you want to follow her progress, please go to...

www.caringbridge.org/visit/carsoncole

Thanks!!