2022 Q1 CF Check Up

And here we are again, another 3 flips on the monthly calendar and we are walking into the hospital for our next quarterly check up. We get through the temperature testing and get the little sticker that says we are a visitor. Next stop on the walk is the registration desk where Maddox has stolen all the hearts of the reception team as they all remember Maddox and Blue Bear checking in. After working through all the insurance questions, we walk down the hall and arrive at our elevator banks. We hit the button and it brings us to the next level of our journey (you’re welcome for the small joke – get it?)

The doors open and we walk down the next hall looking for the door with Maddox’s name on it and it’s our room for the next 2-3 hours.

Maddox gets in and the first thing the nurse team does is grab his height and weight and I hold my breath until they come back with his numbers. Then we get through the rest of the show, his entire CF makes an entrance. Sometimes they are come in individually and other times it’s the entire team (or so it feels like and everyone is talking at once and I can’t pay attention to anything that is going on). Then everyone leaves we take a big breath and then walks in Dr Pete.

Today’s adventure; the quarterly blood draw and deep discussions that we might need to prep for. Maddox is a little dude, we all know it. I am hoping in the bottom of my heart and soul that he is just a late bloomer and he will hit this massive growth spurt. Dr Pete has the same brain waves but the rest of the team is starting to wonder and want to start diving into more tests to see why just isn’t growing as fast as he should. Dr Pete stated that once we are getting to 7 or 8 years old, we will need to start having more discussions of exploring more things to add to his medication regimen. For now, it’s watching the incremental growth on his growth chart and barely gaining any weight appointment after appointment.

If anyone has any recipes that are extremely fattening and that picky 6 year old will eat, please send them over! Right now, his biggest kick is dad’s home made sloppy joes. He eats cold lunch and I am packing that thing full every day. I bought a few muscle/body building bars to see if he’ll eat that. They can’t be chocolate flavored, so yea – most of the options are eliminated.

Ok – let me tell you about his blood draw and this little tube of miracle goo.

Last time Billie suggested with Child’s life and we try lidocaine. The goo is applied with the band aids and it sits for a good 30-45 minutes. Last time he did struggle through it as he has a few PTSD flashbacks.
This time?! Night and Day! He didn’t even flinch and when the tech said “All done” he stated ah man, I only got to the first page! Mom, it didn’t even hurt and I got a cool bandaid. As mom is trying not to pass out.

What a huge relief. Not that I am excited for my child to have his blood drawn so much, I will take a victory anywhere that I can. Who knew this little goo would give him the courage to power through a blood draw. We packed up and now we wait for the blood draw results and the throat culture results.

Our biggest concern (as always) is weight gain. I hear how much he weighs and my heart sinks as he just isn’t growing as fast as he should. Again, this mommy is really praying for a huge growth spurt and that he’ll eat us out of house and soon. I welcome to have that problem!

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