It’s that time again, our quarterly check up with the CF team in Green Bay. It’s also that time again for our well child check up and a trip to the dentist. When I’m looking at the calendar scheduling all our appointments, I always think to myself – perfect try to knock out as much stuff as I can in as little number of appointments as I can. Until the week hits and I then think to myself, ‘what the hell did I do scheduling so much all at once’! O well, it has to be done, right? So we pack up a lunch box of snacks and here we go.
First we start off with our trip to Green Bay to meet with Dr Pete and the team. I can finally say that we are over 30 lbs! Huge accomplishment for Maddox as we were sitting idle at 29 for over 6 months. He actually gained an entire pound since our last weight check and over an inch! Grow kid Grow! After we do the height and weight, we answer the typical questions for CF research and then the dreaded throat swab. By now, we all know that this is his least favorite part. Maddox and our nurse had a nice good chat, practiced on Blue Bear and then Maddox opened his mouth wide and we had probably our best swab in over a year 🙂 He nailed it without a tear! Then Tammy stopped in and we talked about his weight gain and just to keep trying as best as we can for him to eat. Laura stopped in and they had a competition for the cotton ball and then we checked O2 levels and everything looked great.
Running the halls at St Vincent for our CF Appointment 
Chatting with our nurse and prepping for the swab 
Maddox was telling Tammy all about his Turtles and PJ masks and how they were living as a big happy family 
Cotton ball game again. 
Looking at his 02 levels 
After we are all done at CF clinic and our Strawberry Pedasure
Then Dr Pete walks in. Maddox always seems to button up when Dr Pete walks in and is so talkative with all his therapists. Dr Pete does his checks to make sure everything looks and sounds good; good heart rate and the lungs sound clear. So we had a chance to ask Dr Pete about how things were going as far as the research, Maddox’s gene set and his future. Dr Pete stated that we should watch the medication Symdeko . This would be the one that Maddox would be put on for his regulator. This is great that we have something in our future, but it will be a few years yet. The medicine has only been approved to 6 year olds at this point. When I asked Dr Pete if and what the side effects are he really didn’t have an answer 1) it’s such a new medication and 2) so far it’s fixing what its supposed to so it’s only been positive feedback so far. 2 years will fly so we’ll see what happens from now and then. Great news though 🙂
We left the CF clinic with our Strawberry Pedasure, more nebulizing cups, mini Rock’m Sock’m Robot fighters and a ton of hope that Maddox’s future has a future :). After the clinic we headed to Culver’s for a cheeseburger with an extra slice of cheese and a dish of Custard.
The following week we had our 4 year old check up and a dentist appointment. The 4 year old check up is with Maddox’s primary, Dr Henry. Dr Henry was the one that helped us get Maddox admitted to St Vincents when he had RSV when he was 6 months old and stayed with me in the room after Nick and Maddox took off in the ambulance. When I heard she was taking patients, we switched immediately and she’s been amazing still. We get to the clinic and Maddox goes through the weight and height exam again. Then Dr Henry walks in and Maddox and her connect the whole time. I really didn’t have to prompt much. She asked him a few questions about 4k, daycare, what he eats, and all that stuff and I felt like a fly on the wall. It was cool that he was able to start answering these questions by himself but wow – my little guy is growing up way to fast. She then gives him a book and they go through it together – she took the extra few minutes to read through it with him. So cool 🙂 After we have a quick conversation about school, Dr Pete, and that care. Then we go through the order of shots that are due and then she heads out. Maddox knew the shots were coming and still hated it but we talked with Jazmine about it and after giving Blue Bear a huge hug and Mom hugging Maddox, we got through it.
Reading with Dr Henry! 
So after our 4 year old check up, our next stop is the Dentist. So a month or so ago, we went to our normal dentist’s office and Maddox had a pretty traumatic experience. Too many people in a small space and the kid just doesn’t like to lay on his back for things anymore – just bad experiences. So we were referred to a new place and WHAT a difference. We get to the place and they call Maddox back and as soon as I stand up, they were like, ‘we got this mom’ and I was like “HA, not today sweet heart. Let’s have a chat.” And they did, we sat down for 15 minutes to learn about Maddox, his CF, his past experiences, and just my concerns with not being with him. My dentist experiences growing up as a child were not the best and with his past I want to see what I can do to support everyone for a good experience. He was such a champ and Heather is amazing. There is something in life to be a hygienist and then there is a whole other level of being a pediatric one. She was so patient with him and was able to gain his trust. They sat in the xray chair to learn about her awesome camera – which is way bigger than moms. And then they sat down in the chairs for the cleaning and exam. It’s a brand new building with an open concept = there are five chairs and could have five patients all at once that are all next to each other. The dentist then can easily float between the kids to keep them rolling as quick as they can.
Dr Mark came up, introduced himself and explained the thought process for the kids and how they keep the kids calm and don’t push them into something they don’t want to do. If they kids don’t want to lay back, they have them sit up, etc. He made a quick connection with Maddox as he knew all the PJ mask characters and could relate their mission/theme song. Then Heather jumped in and did her thing. She was able to get Maddox to relax enough with her to sit in her chair, they tried to lay back but he wasn’t having it so she did everything sitting up with him. She explained all the tools and Maddox was able to watch another kid in the chair two down from him to see what it was all about. The noises, the lights, the tools, what show they were watching on TV, everything. Then Maddox jumped back in his chair and they were able to floss with him and able to brush with his new tooth brush(he didn’t like her toothbrush, it was too loud). Then Dr Mark came back over and they counted teeth together and gave a quick analysis and outlook. No cavities from what he could see! He then got to pick out a prize and we scheduled our 6 month check up. I stayed in the shadows for all of it and Maddox really didn’t look for me or need me. Again, he’s growing up so fast!
Flossing! 
Watching cartoons 
Learning all Heather’s tools
We are done with all our scheduled doctor appointments from now until Christmas as that is our next big one; chest xrays and blood work. This one is no fun but we have some time. Now to keep up with brushing, flossing, neb treatments, vest treatments, extra Vit D, and everything else we need to do to keep our bodies as healthy as we can!
Team Maddox 