1 Corinthians 16:14 ~ Do everything in love.

Tuesday, August 5, 2014

I Gotta Go Back. Back. Back To School Again... (And August Clinic!)

Tis that time of the year again. 

 Back to school time. 

We are back at it here at the Jones house. The first day of school was on Monday August 4th and it was a complete whirlwind. All 3 of our kids are officially in school now. Bryce started kindergarten, Jordyn started 3rd grade and Sydney started middle school. A 6th grader. WHAT?! I know...it blows my mind too. 

The traffic was pretty awful so it was a good thing I built extra time into our schedule. I knew there would be heavy traffic, but goodness it was worse than I expected. I had to walk Bryce into the school so I could drop off his enzymes with the nurse. He was so excited and could have cared less if I was there or not. After getting things squared away with him I rushed home to pick-up Sydney only to find Bryce's Kalydeco pill sitting on the kitchen table. Poop! I knew I didn't have time to get back to his school so I took Sydney to school first. The traffic light up the street from our house seems to be set on summer schedule still because it was only letting a few cars go so everything was getting backed up. We ended up having to turn around and go the LONG way around to get to school. Once we reached the school it was a total traffic jam turning into the school since the middle school and high school share a campus. They stagger the start times, but I think the heavy traffic played into the jam up. Or maybe it's because the middle school Sydney is going to has 1650 students. Hello...that is a lot of middle school kids in one building. Bless the teachers and administrators in that building!! Anyway - the whole process took 40 minutes, but thankfully we left early enough that she was there on time. I was so nervous for her and I'm not going to pretend I was holding back tears. I didn't expect to feel so emotional about this new chapter of her life, but I was. From there I booked it back to the elementary school so I could give Bryce his Kalydeco. THEN I went in to work for 2 hours before leaving to go pick Bryce up early at school to make it Children's for his quarterly clinic. Yep, Bryce had clinic scheduled on the first day of school. Better believe I asked if we could switch his schedule next year to avoid this happening again.

These pictures are slightly repetitive. I took these with my cell phone and posted them on Instagram.

So everyone had a great first day of school. Jordyn made friends with the girl that was mean to her last year so that seemed to make her a happy girl. Bryce seemed to love everything about his first day even though it wasn't a full day. Sydney said her day was "pretty cool". She said she felt much better about everything now that she had made it through the first day. The teacher that impressed her the most was her Geography teacher Mrs. Bilbo. (I had heard she is a fabulous teacher so this didn't surprise me.)


Clinic Update: 

We had a great clinic visit. Bryce gained over a pound, which put him back at 68% BMI. Our last clinic visit he didn't gain any weight so having a good weight increase was good news. He still doesn't get how to blow into the PFT machine. He just doesn't get it. I get frustrated that he doesn't get it, but his team assures me it is okay and normal. I even asked them if it would be better if I went into the hall while he tried it. They did get one good blow from him, which was a 96%...up from 94% last clinic. I KNOW he can blow a higher number than that, but he just needs to figure out what he is supposed to do. Maybe November clinic will be the one?! 

I talked to his team about the little hard knots on each side of the bridge on his nose. I don't know if they are part of his bone facial structure of it they are fatty deposits or nodes or what. He has had them for years...if not forever, but they seem to have gotten bigger this summer. Or at least that is what Bryan and I think. Our pulm nurse and pulm doc were stumped by them, but curious so they have advised us see our ENT. 

We also chatted about Kalydeco. I had a few questions that they cleared up for me. They did say that he needs to have a yearly eye exam to monitor his vision since a very small number of folks that were in the trial developed cataracts. My team seemed surprised Vertex hadn't told me this in talking to them, but either way it's easy to make an eye appointment so no worries. I was also told they have to monitor his liver enzymes while on the medication so he will have blood draws every 3 months for the next year to see how those are looking. Bryce has had elevated liver enzymes in the past so they definitely want to monitor those. Little Jones family fact: Bryan and his brother, Uncle Andy, both have had elevated liver enzymes in the past so there is some family history to it. 

Bryce was a total rock star during the blood draws. They took 10, maybe 12 vials of blood from him. I was a little shocked and slightly concerned they were taking so much, but it didn't seem to phase him in the least. When they started the process one of the research team members poked her head in the door to ask if they could take 2 vials as well. I was so proud of him for being so brave during the whole process. 

So overall a really good clinic. And a really great first day of school. As you can see it was also exhausting. :) 

It only gets crazier for us from here people. 
It's going to be a wild but fun ride this fall!


As of finishing this post I have made an eye doctor appointment as well as an appointment with the ENT. Those are coming up towards the end of the month so I will update you guys on that front then.

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