Spinal Tap

Wednesday was a long morning .. it started at 6:00a.m. with Colin asking for milk and as you all know on procedure days he can only have clear liquids the morning of a procedure day. After distracting him for a while, we made our way out of the house, but due to an accident on the merritt, we sat in traffic for 45 minutes which made us VERY late for our appointment. Colin was a trooper and only asked to eat 100 times. Once his IV was hooked up we quickly changed gears and played, made crafts and read at the activity table. His spinal tap took place at 11:00 and was the first time Dr. Joe performed the procedure. Colin was content playing with his trains leading up to and during the procedure. As soon as it was over he demanded food .. he ate a banana, a cheese stick, 2 sippy cups of milk, 2 bags of teddy grams, 1 bag of animal crackers and continued with apples and a grilled cheese when we got home. It didn't stop there because at dinner he chowed on two grilled cheese and a few crackers. Hum, would you say the steroid kicked in already? We made an emergency run to hostess to pick up some more bread in case grilled cheese is the food of choice this week!

Colin's counts continue to be in the target range so he was told to have a great Halloween and we plan to do just that.

Note to self, 1.5 pain meds seem to work perfect

First, First, First

With two young children we encounter 'firsts' nearly every day but this past week we have a couple that are worth writing about ..

On Wednesday afternoon, I packed the kids up and strapped Nanny in for a 20 minute ride to get the kids hair cut. Since it was Maddie's first hair cut and Colin's first since his hair grew back I decided we should go all out and went to a children's salon. Upon arrival, Colin clung to my leg because another boy was screaming in the chair. Colin wouldn't walk in without me pulling him. I quickly thought to myself how on earth am I going to get him in the chair after witnessing that. Thankfully, Maddie came to the rescue and went into the chair willingly. While she got her bangs trimmed Colin looked on with amazement. Maddie loved every second of it, in fact she was upset when she was all done and let out a huge scream when I placed her back in her stroller. Colin quickly put on his serious face and held on tight as I put him in the chair. However, once the hairdresser started the movie for Colin he started to relax. Colin looks like a young boy with his new hair and fresh hair cut and Maddie can now see without her hair in her eyes not to mention the little diva in her!

The kids first birthday party and trolley ride was a two for one deal as we celebrated Colin's friend Joshua's third birthday at the trolley museum in East Haven. The kids enjoyed the ride and once again Maddie just goes with the flow .. she even found another family to snuggle with while Colin held on tight. Half way through the ride the trolley stopped in the yard where we were able to visit antique cars, color pumpkins, drink cider and sang happy birthday to Joshua while enjoying birthday cake.

Colin's Walk for Childhood Cancer

Last Saturday Colin's Crew organized a second very successful event. Approximately 50 families braved the cold & wind to support Colin's Crew & Kacey Rose Foundation and walked the Linear Trail here in Wallingford.

Donations are still coming in so we don't have an official total, but thus far the event raised over $2,000 for the Kacey Rose Foundation. Photos will be uploaded shortly! In the mean time we wanted to share a few words from a close family's blog:

"Saturday morning was bitter cold and windy - but there was nothing but warmth felt in Wallingford as many came out to support a wonderful cause. There was coffee and munchkins to scoff, face painting to stir smiles, fire trucks for excitement, clowns to spring laughter... and LOVE EVERYWHERE!!! Nobody cried about the weather, instead they huddled together in a common bond, and the friction created could have melted any ice cap for sure.

The attendance was matched by the spirit of those determined to make a difference... and the event moved me; it reminds me that life is too fragile to harp on the details, to be grateful for what I got, and to treasure each and every day regardless."

We couldn't have said it better!!

ANC 800

Since our last post:

We've passed a seasonal sinus cold to each other and luckily Colin never came down with a fever so we were able to avoid an emergency clinic/ER visit.

Maddie is officially walking and is into everything (literally) including the one kitchen cabinet that is not locked.

Today Colin had his routine appointment and his counts remain good with an ANC level of 800. Despite a later than normal appointment, Colin carried on his regular clinic routine by taking the long way to the exam room so he could stock up on books to read while waiting. Judy the volunteer saved the day again by taking Maddie for a much needed walk so Mommy could talk to the nurse and doctor without interruption. Once done, Colin insisted he play at the activity table with the other kids.

Colin will receive a spinal tap at his next appointment in two weeks. In the mean time, we'll enjoy the weather and continue to have fun!

As Colin continues to do well Colin's Crew is planning a series of fundraisers to benefit foundations that have assisted our family. The first is Colin's Walk for Childhood Cancer this Saturday the 16th. Come walk with us any time between 9:00 a.m. and 12:00 p.m. at the Linear Trail in Wallingford (Rte 150). Scavenger hunt, face painting and touch a truck for the kids. Rain or shine. All proceeds will benefit the Kacey Rose Foundation.