Welcome back to our Team Maddox blog. A place where you can catch up on Maddox’s CF story, the updates on where the medical advances are so far, how Maddox is doing and just life in general in our household. I can tell you that when I logged into my account, my jaw dropped when I saw the last time I posted anything in my blog was over 5 months ago. I immediately went back to all my pictures in my phone to start uploading pictures of Maddox and we have done so much that I will try to catch everyone up on.
First, I’ll start with our latest quarterly check up with the CF team. Tammy was feeling better with his numbers as he is still growing and we didn’t have any backwards movement on the growth chart. Obviously, we are still trying for the little dude to gain some weight to ensure his growth isn’t stunted. When we are done with his vest treatment at night (usually around 8pm) and he states he’s hungry, we still give him snacks. Lately, he’s go to has been cottage cheese and homemade parfaits. We try to find something relatively quick otherwise bed time keeps getting pushed back.
Doctor Pete stated that he does still have nasal polyp which is causing issues with his nasal cavities but he isn’t going to schedule any surgeries until Maddox has been approved for a modulator. Other than that Doctor Pete just said we’re on a waiting game until Trikafta is approved. Right now, the trial results are with the FDA for them to review and approve for 6-11 year olds. Once it’s approved, we need to wait until Maddox turns 6, which is quickly arriving this August. Billie also told us at our appointment that once Maddox is on the medication, we will need to do routine tests to make sure that the modulator is working with his body. The main concerns are liver and catarats. Before we left for vacation, Maddox had an eye exam as a baseline for all the tests – which he did an amazing job with his transformer mask. Once on the medication, we’ll have to do quarterly blood draws to ensure his liver is still ok for the first year we’re on the medication. Here is sending positive thoughts to the FDA approval team to have all their questions answered for the approvals to come for Maddox’s 6th birthday present.
Once of the avenues that Nick and I believe in to keep Maddox healthy is to keep him moving and right now, we have been keeping his active by playing sports. This winter I coached his team for basketball at the Y. This spring we also signed him up for Spring Flag football, he ended on up on the Bears. It was really tough to cheer “Go Bears” from the side line.
Then we enrolled Maddox into Karate and he really hit his stride. I haven’t seen him so excited and light up for anything as much as he does for his sessions. We did 3 entry level classes to see if it’s something he would like. When he was awarded his white belt as an introduction, he was so proud. He practices almost every day with us. We even did a karate session while we were on vacation. It’s a great workout for sure! I’m so proud of him and how far he has come.
Speaking of vacation, we went on our first road trip this spring. Usually, we fly to all to of our vacation spots, but we decided to change things up and we decided to drive to Florida. The warm salt air does wonders for our family as far as allergies and Maddox’s airways. One of the daily nebs that he does is sterilized salt water so why not just run and play in the salt water in 80 degree weather. I think Doctor Pete should just write us an annual prescription for a vacation to the beach. Maddox did awesome in the car. We basically sprinted down to Florida in the first two days, spent some time in Florida and then we took our time coming back home. Just because we took vacation, doesn’t mean his CF does, so we lugged the CF vest in and out of every hotel room we were at. The one nice thing about taking your own vehicle on vacation is that I was able to pack our sterilizer so we could keep his nebs clean for use. The other neb that Maddox has needs to be refrigerated at a certain temperature so we had to make sure our coolers were packed full of ice at all times to ensure they don’t spoil. We had so much fun on our vacation that we are looking forward to our next one!
Otherwise, we have been enjoying our time together. We went to Disney on Ice, a Gamblers game, hanging out with Best Friend Ollie during vest treatments.
One tradition that I hope that Maddox will carry on with me is playing with the baby goats and baby bunnies at Mullberry farm. I know he’s more excited about the goats, but I love spending the time with him out at the farm. My little goat whisperer.
That’s all I have for now! I’m sure I’ll think of some more things to share in the next few weeks as my little 5k dude is going to be going into first grade. Yikes! Not sure I’m ready for him to grow up so fast.