Winter is coming

Fawkes loves, loves the snow! DC is a town the pretty much closes down when it snows, so everyone stays home and I work remotely. I found him a little snow shovel, so whenever it snows, he likes to shovel the sidewalk.

Another fun activity we've picked up is ice skating.We tried to do it and both Fawkes and I were not very good. Hudson is a really great skater. So, Fawkes started taking ice skating lessons. It's one where it's a parent/tot together. I actually was learning some fundamentals by taking him to the class, and I even decided to take a skating class for myself! After slipping all over the place with dull, rental skates, I even bought myself my own pretty white pair.

Yay? for winter sports... says the Floridian!?!

Treatments and playtime

Over the years, Fawkes has been a trooper doing 2 mask treatments and 2 percussive vest treatments per day every day (even more when he's sick). All in all, it takes about 45 minutes each. So, what's a baby to do while he has to be confined for that long. We've set up a cool cart, from Ikea of course, that rolls around with him, but the stuff has to stay plugged in, so keeping him entertained has always been so important. Here are a few pictures of how we try to reward him for doing it.

We play with Bristle blocks.

We play with Legos.

We do Halloween arts and crafts. 

We play Nintendo switch and Mario Kart 8.

We play Mario while watching a youtube of someone playing Mario.

We give him cuddlees.

We do Easter stuff.

As you can see, mask and vest are integral to our lives throughout the year. I am always looking for ways to keep it fun. We always make sure to stay with him too so he doesn't feel alone while doing treatments. It's so, so important to keep it as positive as we can. Fawkes accepts them as a way of life now, but he is starting to ask questions on why he has to do vest and his friends don't. Right now, we just answer, that it's for him, but someday I'll have to tell him, "You have cystic fibrosis." That conversation hasn't happened yet.

If you find our story compelling, donate to the Cystic Fibrosis Foundation to add tomorrows for Fawkes and others:  Donate

On the News!

We welcomed the Cystic Fibrosis Foundation and News Anchor, Ellen Bryan, into our home to give a bit of insight into what it's like living with Cystic Fibrosis. If you haven't seen it, Ellen did a fabulous job capturing lots of what we do in a short segment here:

https://www.ellenbryan.com/blog/the-delee-family-life-with-cystic-fibrosis

If you feel compelled by our story, please donate to add more tomorrows for my son, Fawkes here:  Donate

Bracelets

We had a scare Sunday night before the eclipse where Fawkes was coughing so uncontrollably and wheezing so badly, we took him to the ER. We thought it might be our first hospital exacerbation. Ultimately, they gave him an amped up Albuterol and sent us on our way. We were there until about 4 am.  Needless to say, we were exhausted by the time we finally got home, so we all stayed home the next day and Hudson made sure to get us special NASA eclipse viewing glasses.

My mom found some really pretty purple bracelets that represent the CF Foundation. Purple is their color. So for anyone that donates over $100, you too can be the proud owner of this sparkly bracelet! ***While supplies last*****

If you find our story compelling, add more tomorrow's for Fawkes: Donate

Vacation and suitcases

For summer vacation, we went to Texas and a really cool waterpark called Schlitterbahn. Life with CF is pretty tough with all the meds, but the most heavy baggage we carry is his percussive vest equipment. While I appreciate the ability for it to mechanically shake off  the sticky mucous that accumulates and Fawkes' lungs, the thing is unwieldy and HEAVY. To make matters worse, whoever designed the bag did not have an active toddler to chase while dragging the bag. It only had 2 non-spinner wheels and the CG of the heavy item was way too high leading to the bag to constantly fall down and barely fit in overhead bins. By the way, I'd never check it. I would not board the plane before ever being separated with this equipment for my son. It's super expensive and irreplacable. We would have to go back to manual percussion where we beat on him in several spots for 30 minutes which is not as effective.  I finally found a suitcase with spinners that would fit it well! These are really things that excite me and improve our quality of life. Stock provided case on the left; my find on the right.

Okay, you didn't come here for pictures of suitcases, but I'm seriously that excited about it, I wanted to tell you all. These are actually things that matter to CF families. When we got there, Fawkes LOVED the water slides. There was a pirate ship with multiple slides that he stayed on for 2 whole days. The life gaurds knew him and loved him. Most 6 year olds were going with their parents, but Fawkes, at almost 4, went all by himself.

You know how it is at water parks. You leave all your stuff on a picnic bench and go to all the attractions. Most people carried around a waterproof bag with their most important possession with them, their cell phone. But we had a different priority. At times, we were on rides that took us quite far away from our home base, and how could you tell a child, they can't eat until they get back to their pills 30 minutes away. Well, I had Fawkes' enzymes with me (and some eye drops, I was having major issues with my contacts at the time; turns out I was allergic to the material they were made out of).

If you find our story compelling, add tomorrows for Fawkes:  Donate

Back on the Meds!

We went back 2 weeks later after having to return the drug. We could definitely notice a difference not having it observationally. We were more than happy to go back to Philly to start the follow-on trial. That means more tests, more hospital visits, but happily more meds.

We need a lot of stuff at the hospital so we carry a rolly bag. I used this bag when I was pregnant to haul around my stuff for work, but now Fawkes loves to use it at his appointments, which I find so cute and ironic (is it ironic or just situational humor). Whatever it is, he's cute.

It was Mother's day weekend, and so we treated Fawkes to Diggerland. It's like a small Disney World where kids can go and actually operate hydraulic construction equipment. Oh by the way, on mother's day, moms got in free, lucky me!

Ever since Fawkes was born, we struggled to keep him on the weight curve at all. Due to CF causing pancreatic insufficiency, his body has extreme difficulty absorbing nutrients and fat. Throughout his early life we continuously struggled with types of enzymes, amounts, trying to give an infant pills in applesauce with salty milk with orange vitamins. So many challenges. But there was pressure by doctors to get him on the curve with the constant threat of a feeding tube looming above me always. Since we began this trial, you can imagine the tears that poured when we saw these results at our CF doctor appointment:

You can literally see the life changing results we had only supposed observationally. This drug is changing everything for us and was made completely possible by the CF Foundation funding industry to create a cure.

If you find our story compelling, think about donating here to add more tomorrows for Fawkes:  Donate here

Week 24

Well, we made it. This isn't the end, and it's sad for us. We had to turn in our meds. Fawkes will be off them until next Friday when we go back and start this whole thing over.

We left for Philly on Sunday night, stopped for dinner in Columbia, got to the hotel, did treatment, and went to bed. The next morning, while Fawkes was doing his treatment, I tried to squeeze in a little work because I have a huge review coming up, and people were waiting on me to send out the information. We left for the hospital after grabbing a quick breakfast at the hotel.

We did an LCI test (that one where he has to sit still for 5 minutes and not move with a mask on his mouth) a small and impossible feat for a 3 year old. I swear, people that want these tests have no idea how hard these set-ups are. Anyway, then it was to the optometrist to make sure the meds didn't effect his vision. I'm not sure why, but man that eye place in the hospital is busy. We had an appointment but it took TWO HOURS!!!  Luckily, I had my mommy bag of tricks and some sticker activities, Hudson got us snacks, and in the room they had Monsters Inc. Also, I had to get a urine sample while we waited which is always fun.

Then we did some other expected things, gave our stool sample to the nurse, did an EKG (Fawkes likes the stickers now), and the skateboarder breathing test.

We ate some lunch and then we had to do the dreaded sweat test. W e played Connect 4 while it was collecting the sweat which you can see in the picture on his arm. (You can learn more about this test on Screening and Day 1 posts).

We did the dreaded bloodwork, and he got his surprise which was Cootie. He saw it on his favorite You Tube, Ryan's Toys Review, and I loved that game as a kid, so I did what any mom would, ordered it off Amazon. He loves building the Cooties.

We'll be back to Philly next week for the safety follow-up.

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