Giggles

Carly celebrated eight weeks of tumor free living this weekend and had a good week of slow but steady progress. Her neck is getting stronger and she can hold her head up for several minutes now (a long way from not being able to hold it up at all.) She spent more time in her glasses this week and although it isn't easy to tell if she likes them yet, she doesn't complain about wearing them. There are a growing number of times each day when Carly seems to really "turn on" and is very attentive and present. During one of these times tonight she was intently looking at me and after tickling her chin she giggled and smiled and kicked her legs up in the air. It was one of the cutest things I have seen, and such great progress. She is an amazing little miracle.

Heads Up

Carly's progress continues to be slow and steady. I have never been the most patient person in the world so it isn't always easy to wait, but we have made a point of writing down all of the new things she does each day and the list is getting longer. In the last week her neck strength has gotten a lot better and she can now hold up her head for minutes at a time while Christa slowly rocks her from side to side. She is still managing without her shunt, her electrolyte levels continue to be normal and her blood labs are now only required every two weeks. That's a long way from the three times a week testing that was required only a few weeks ago. She has also started making a few cute talking sounds in the last few days. I'm pretty sure she is trying to say dad or brad, but Christa isn't convinced.

Love, Brad

Of The Trees

Today we are planting a tree in Carly's Garden in memory of Silas Orion Gallagher. Our friends, Chris and Lani, will be commemorating their sons brief life with a tree-planting ceremony at a park near their home in New Haven, CT. Please take a moment to think of Silas, whose name means "of the trees" and send his wonderful parents strength and love today and everyday.

http://elmcitydad.wordpress.com/silas-orion-gallagher/

The Future's So Bright, She's Gotta Wear Shades

Carly got her first pair of glasses today and she doesn't protest too much about wearing them. They have a little bit of tint to help her with the bright sunshine and the strong prescription is intended to enable the visual cortex of her brain to develop while allowing her eyes to do less work. As she progresses the prescription will be reduced, and eventually she may not need glasses at all.

She has made some great strides in the last week, acting a lot more alert and spending up to an hour awake at a time. Her physical therapy is going well and she can now hold up her head on her own for several minutes. She continues to manage her cerebrospinal fluid too, so the shunt remains disconnected. All of these things are little steps along her path of recovery and each step brightens our day.

Love, Brad

Thankful For Moms Everyday

Reflecting on the moms in my life today, I realize just how lucky Carly and I are. My mom has been an amazing help over the last eight months. For both of Carly's major surgeries she put the rest of her life on hold and moved to San Francisco for a month each time. As Christa and I spent weeks on end at the hospital she delivered home cooked meals and anything else that we may have needed. Christa's mom has helped us out so many times I have lost count. She lives about 30 miles away and has watched Carly anytime that Christa and I need some time to ourselves or with our friends. (Not to mention the countless trips to the hospital for support or to deliver hypoallergenic diapers for Carly.) We are blessed to have both of these wonderful women watching over us.

I feel particularly blessed to have the most amazing woman as my wife and Carly's mom. I have to admit that when we were dating and I decided to ask Christa to marry me, the type of mom she would be was something that never crossed my mind. (Kids were not on my mind then.) Well, I won the mom lottery. Over the last eight months Christa has had to deal with more than any mom should, and she has dealt with it with so much strength. She has put her professional life on hold to care for Carly and she manages to do it all with a smile. Her love and patience are endless and they are guiding Carly on her path to recovery. Carly and I couldn't be any luckier.

Love, Brad

Baby Steps

Carly continues to get a little stronger each day. She is still pretty tired and spends most of the day sleeping, but during her awake times she is showing improvement. Her right eye can now open almost as wide as her left and she is holding up her head more. To help her right eye get stronger we are starting to patch her left eye for 30 minutes a day giving righty some time to be in charge. Carly's ophthalmologist has also recommended that she start wearing glasses which should aid her vision development. Her first pair of glasses will be tinted to help her deal with the bright outdoors since her pupils are still dilated at all times. She should look pretty cute in her new sunglasses!

Carly had her first post surgery checkup with the endocrinology team yesterday. It was a pretty uneventful appointment and all of her hormone medications remain unchanged. Since Carly lost her pituitary gland during her surgery we will be working very closely with this team in the coming years. The pituitary gland is responsible for producing or controlling many of the body's hormones including:

• growth hormone
• thyroid hormone - which helps control heart rate, temperature and metabolism
  
• ADH - which controls your sodium level by telling your kidneys to hold on to water and stop peeing
• ACTH - which triggers your adrenal glands to release cortisol to control blood sugar and blood pressure levels
  
• estrogen
• progesterone
• oxytocin

Yes, it's a long list. Carly will need all of these hormones to be managed with medications for the rest of her life, some with shots and some with pills. Fortunately this can be done and the endocrine team at UCSF is among the best in the world. We have been replacing several of these hormones since Carly's first surgery in October and we are comfortable managing them and know that Carly will be able to handle it too. I already checked, and none of this would prohibit her from running a marathon or finishing the Ironman. :)

Love, Brad

Team Carly

Team Carly was out in force yesterday for the Brain Tumor Walk in Golden Gate Park. It was a bit soggy with on and off rain, but it didn't dampen the spirits of the team. In just over two weeks Team Carly raised over $11,000 finishing 5th in fundraising out of over 200 teams. Forty people walked for the team and over 140 people donated to the cause! Thank you all!

Since Carly's diagnosis on September 12, 2008, we have been blessed with support from all of you who are a part of Carly's team. Team Carly is a group of people who believe in the healing power of love. We are a group who choose hope over fear and believe that tomorrow will be a better day for a little warrior named Carly. The team stretches from Switzerland, France and other points in Europe, spans the entire United States from the east coast groupies through the midwest heartland to the west coast family and reaches points in Japan and throughout Asia. The power of this team has brought calm to Christa and I in trying times and continues to help Carly each day on her road to recovery.

Love, Brad