1 Corinthians 16:14 ~ Do everything in love.

Tuesday, May 24, 2016

May Clinic and Great Strides 2016!

Even in the midst of the crazy that is May we have to slow things down to take care of CF. Early in the month Bryce got strep throat and it took him down for several days. He didn't eat anything for almost 4 days and then once he was eating it wasn't much at all. This all resulted in him dropping some decent weight, which had an effect on his clinic visit. His weight was 58 lbs and his height was 51" which put him at 45% BMI. Since he dropped below 50% BMI they put us in the "Yellow - at risk" category. It has been a long time since we were below 50%, BUT I'm not overly worried because Bryce is back to his usual appetite so I think we will catch up in no time. His PFT's were up slightly so that is good news. He still doesn't get how to blow into the machine, but he did get one good round in so that's what they took his numbers from. I didn't take any photos of Bryce doing his PFTs this visit, but I did get photos of him getting his blood draws. He always impresses me with how well he handles blood draws. After a few deep breaths he was also smiles as usual. 

Bryce also got a new piece of equipment that I am pretty pumped about. It's called an Aerobika and it's a small hand held device that he will blow into. He has to do 3 sets of 10, which is going to be quite the workout. Each blow has to be 3 to 4 seconds and after each set he does the huff cough. The reason I am pumped about this little device is that once he becomes pretty good at it, he can replace this with ONE vest treatment each day. HELLOOO!! Do you know how helpful this can be?! He can do this in the car on nights we are at the fields late or he can do it in the car on mornings where we have 8:00 games. It pretty much can be done anywhere so it also has the potential to give us a little more freedom in our schedule when we are on vacation. After each use the device has to be sterilized, but aside from that this could definitely be helpful in navigating our busy schedule! 

The day after clinic Bryce played hookie from school to once again be the CF representative at a charity golf tournament hosted by the Georgia Tech Housing Department. This is an event Bryan and Bryce have been going to for the past 3 or 4 years, which they look forward to attending. Bryce helped call raffle numbers and jokes were made about Bryce being a Dawg fan. He was even given a golf polo in UGA colors so kudos to the Techies for making that painful purchase! I'm waiting on Bryan to email me a few photos from the day so I don't have one to post currently.

To top off the weekend we were up early Saturday morning to head down to good old Georgia Tech for the Atlanta Great Strides walk. This was Team Bryce Bryce Baby's 8th year participating. The Atlanta walk brought in a record breaking $2,030,000.00 and counting!! I don't have our team's grand total yet, but I know that we did reach our $10,000 goal on the Friday before the walk. This year has by far been the hardest year raising funds and I found myself feeling really discouraged at times. I know everyone is probably sick of me asking for donations each year, but here's the deal: My kid still has CF and let's face it...this disease sucks. He works his butt off DAILY to stay healthy. He NEVER gets a day off. There is no vacation. 
There isn't a cure so of course I'm going to keep my efforts going.  

I am so very appreciative to everyone who donated to us and I am extremely appreciative to those that actively helped us raise funds. It is not an easy or pleasant task so please know how thankful Bryan and I are to you guys...all 4 of you! Since May is such a busy time for everyone we had our smallest walk group to date. Many of our veteran walkers were out of town or sick or had to work, etc. I want to again thank those of you who made the effort to walk with us. It meant so much because we know how busy everyone is and we know it's not easy making an early morning drive to Atlanta.


You guys are off the hook and don't have to hear anymore of my pleas for donations this year. I know you are so very disappointed about this, but know that I'll be hounding you guys again in 2017! Thank you again family and friends for the support. We are truly grateful!

This is Gavin. Bryce thinks the world of him. 
Thank you to the Matthews family for walking with us even though they were missing one of Lily's soccer game. You guys are awesome! 
(Lily was across town playing in a soccer tournament with Sydney.)

The only picture I took of Bryan and I on walk day was a selfie we snapped on our way to watch the rest of Sydney's soccer tournament.

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