1.27.2008

Only because people are tired of hearing, " Nope, I think we are ok".

Let me just start out by saying, " Thank you" to all of you who have offered to help our family over the last 2 years!


It has been a bumpy ride for the most part. Starting with, Carson and Cooper being born 9 weeks early and their 26 / 39 day NICU stay. Then, it went onto Cooper's hernia surgery, then Carson's 7 hour cranial vault repair (CVR), then Cooper's 7 hour CVR, and now....... 2 weeks from this Tuesday, we will be headed into our biggest surgery yet.



When Riley was 2 years old, she was seen at CHW for low muscle tone on the right side of her body. The Orthopedic specialist that we saw scheduled an MRI to make sure Riley didn't have a brain bleed at birth. The MRI showed no sign of a brain bleed, but they did find Chiari Malformation.


On a Friday, at 4:45pm, I will NEVER forget the voice mail the doctor left on our answering machine. "Hello Mr. and Mrs. Cole. This is Dr. so and so. I am calling to let you know the results of Riley's MRI. We found no sign of a brain bleed, but the radiologist believes she has Chiari Malformation. Please call back at your earliest convenience.".What in the heck is Chiari Malformation???? I rushed to the computer and searched Chiari Malformation. As soon as I saw the words "BRAIN DEFECT", I lost it.


We knew after she started having symptoms, about 6 months ago, that surgery may be in the near future. I was thinking more like 3 - 4 years from now. Not 2 1/2 weeks from now!


Riley will undergo a chiari decompression surgery. We are praying that this will be the only surgery she will need. But, because there is no cure, there will always be the possibility of needing another when she is older.


So on Tuesday, Feb 12th, Matt, Riley, and I, will head down to Comer's Children's hospital and their RMDH for a 10 day stay.



Matt will most likely make a few trips btwn Riley and I, and my parents, who will try to keep a normal schedule going for the other 3 kids.


Once again, Matt and I are very overwhelmed with all the offers of support we've been receiving. Everyone's been offering to help with whatever we need - we just aren't sure what that is yet. We're trying to put together a little list of ways you can help.

Please know we are only making this information available because so many people have asked!


First, and foremost - Riley LOVES Mail!

Here is the address to the hospital:


The University of Chicago

Comer Children's Hospital

5721 S. Maryland Avenue

Chicago, IL 60637


I know Riley would love to receive mail. I do believe we will be in the hospital from Wed. Feb 13th - Sunday, Feb 17th. Then from Feb 18th - 21st, we will be at the RMDH, and I know they accept mail there as well.

*Ronald McDonald House

5444 S. Drexel Ave.

Chicago, IL 60615

We could also use gift cards:


* Gas cards = Kwik Trip, Mobil, Express, BP, etc...... Matt will definitely be putting on the miles.


* Grocery Store Gift Cards = Festival, Copps......This will also help my parents with the other 3.


* Target = this may be a big one. I will have to find stuff to keep Riley occupied during this time and at home.

* Any restaurant gift cards = Something quick and easy for all of us.


The other kicker is, Riley's preschool MAY NOT allow her back for the duration of the school year because she will have missed too many weeks. They will be having a "management" meeting this coming week to discuss her situation.


We've also set up a "donate" link on the right side of our blog that will take donations using PayPal. We'll use any funds donated there for the above expenses - mainly to keep Riley entertained and happy.


Thanks again to everyone for their overwhelming support!

2 comments:

my4kids said...

They won't let her back in school? Didn't they offer anything like doing a correspondance thing or something? Izzak missed a lot of school one year and they offered to do that. Kind of like homeschool but with matterials they give you that they would be working on in her class....just seems odd.

About the other more important stuff I am praying that everything goes perfect surgery and everything else. I will try to get a card out to Riley while she is there also I know kids love mail!

Kathryn said...

Been reading your blog for a while, but don't think I've commented so HEY!
And would Riley like a card or some mail from England do you think? I would love to mail her a card if she'd like one :) (And if she would, what type of card/mail would she like?)
Kath