This past week we went to our first CF clinic visit. We feel so blessed to have an amazing team of doctors, nurses, social workers, physical therapists, nutritionists, genetic counselors, research coordinators, and pharmacists that we meet with on a regular basis and are all very in tune with Maddox – personally and medically.  The receptionist even mentioned that she was so excited to get to know Maddox and how she gets the pleasure of watching him “grow up”. This both made me smile and made my heart heavy. It made me smile because this clinic truly knows their patients individually and cares deeply about them. But it also reminded me that this is a lifelong disease. Regardless of the amazing medical advancements, this isn’t temporary and is something he will live with forever. 

We feel so excited to share that Maddox looks great. He’s checking all the boxes and continuing on his current treatments. The only thing they did notice was that he may have lost some weight. The last time he got weighed he weighed almost 5.5 pounds which was very exciting as a premature and CF baby. This time he weighed below that. They mentioned it could be a difference in scales, etc. but they want to keep an eye on this. This is something very common for CF kids (and patients in general). It’s difficult for them to put on weight, so it’s something they focus a lot on in clinic. Because of this slight weight change we are now fortifying his milk (basically just adding some powdered formula to his breastmilk for extra calories). We have a visit with his Pediatrician tomorrow and will see what his weight is. If you’re praying, pray he will continue to gain weight and be nourished. There are a lot more interventions to come if he isn’t able to do this, and we are hopeful he won’t need those. 

Overall, although our first clinic day was overwhelming and exhausting, it was good and so important. We had the advantage of already meeting a lot of the CF team during our stay at the NICU so there was a lot less “new” information. It was still two hours long and our heads were spinning after, but we left with more wisdom about Maddox and his disease. We are continuing to educate ourselves and others on CF. We know it is our responsibility as his parents to educate those around him – his family, friends, and caregivers all play a vital part in understanding CF and protecting him as much as we can. 

Over the next week I’m going to create a blog post explaining CF in the way I’ve been explaining it to friends and family. I’ll explain the background medically and biologically, its clinical manifestations, overall risks, and Maddox’s unique experience with CF. 

Adam and I decided we will make our clinic days special. For Maddox and for us. We will make a whole day out of it and try to look forward to this time. We will get a special lunch or dinner, visit somewhere new and fun, and have some family time. As Maddox gets older we know these days won’t always be easy but we want them to be positive. We want him to know clinic days are a day when a whole lot of people get to care for him and make steps in making him better. Clinic days are a day he gets to spend a full day with mom and dad and just focus on being Maddy. Clinic days will be good days. 

Okay – let’s move on. As I remind myself daily, CF is just a portion of this sweet baby’s life. It’s difficult sometimes to not make it the center of everything. It’s difficult sometimes to not let it be an after thought to most things. It’s difficult to not let it overtake and overpower. I continue to take back the power CF has on our daily lives and replace it with every other amazing thing Maddox is doing and becoming. Someone recently said to remember “Maddox has CF, but CF does not have him.” I just love that. 

So with that, here are some of my personal favorite moments and milestones recently: 

• our first family walk

• lots of tummy time
• lounging under the umbrella on the back deck with Daddy

• constant snuggles on the couch
• lots of eye movements and attempts at rolling over (uh oh, we’re in for it with this one!!) 
• First big boy bath 

• Visiting Nana and Grandpa’s house (it was so good to get out of the house as a family and go somewhere together that isn’t a doctors office!!) 

• Mommy and daddy even snuck away for a drink on the rooftop while Nana watched Maddy (we are so grateful for family that loves and cares for him so much and so well) 
• One month birthday!!
  

We are learning more and more about our Maddy every single day. Every detail and every moment makes us fall more in love with this perfect little boy. He is exactly who and where he is meant to be. From the color of his hair, to what makes him smile, to his heart, to his tiny little lungs, to his perfect little toes. He has been created for who he is meant to be, and we get to be on the amazing journey of watching all of it unfold. 

“For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.” 
– Ephesians 2:10