Entry 92: Yes Day!

 365 days ago, the idea of making it to the one year mark on SCD happy, healthy, and full
seemed unfathomable. It all felt hard and so restrictive. Now, looking back, all I can see is what a strong, resilient, badass I am raising. In the beginning when we started the SCD diet, we celebrated every day and every week that we managed this new way of life. At 6 months we celebrated at Disney. We rewarded every win. Here we are at one, whole year. "Yes" Day!

At the doctors recently when discussing being in remission, Harps said to me, "I know you are proud mom, but it doesn't feel like a big accomplishment." If only she knew that using food as medicine to put yourself into remission when the world around you uses food so differently is a HUGE accomplishment. It's hard to feel left out, different, or even like you're missing out. But for 365 days this little chick has chosen to follow the rules and find joy in new food and treats. When I look back at our food photo diary from the early days, I am amazed by what she eats now. It is truly incredible. We honestly couldn't do it without our chef, Dot. He takes requests. He is creative with making recipes match the guidelines of SCD. He'll prepare seven days worth of meals to make overnight camp possible. He's had to change his lifestyle to support and accommodate our needs. He serves us so well. We are so lucky.

So today, 365 since we decided to try SCD to treat Harper's Crohn's, are celebrate with YES! Where the answer to every request is yes! Of course life cannot go as planned. Bella got injured this morning and needed the emergency vet. Of course I was an emotional hot mess and it happened right at the beginning of the day. She will be fine but I cried for all the reasons, but mostly for how much I was looking forward to celebrating Yes Day with my girl. Don't worry! Dot stepped up again saying yes while I was getting Bella tended to.

He said yes to:

• a make over complete with mascara
• playing tag in the house
• being a horse

When when I got home, the yeses continued! Here is what we said yes to celebrate our girl's giant accomplishment:

• a TV in her bedroom
• making her normal honey candies in the GIANT butterfly mold
• drawing Yes Day decorations as a family
• a new free app on her iPad
• Family tag in the house (this is the one that surprised me the most that she seemed to think was the best)
• Target shopping with friends
• a bike ride 
• Watching the movie Yes Day on her new bedroom TV
• Downloading Roblox for the day and playing with her
• Pouring a bucket of ice over Dot's head
• Nail Salon (closed by the time she asked for it, so we are saving it for later this week)
• Walmart Shopping complete with taco slippers
• Bluey watching PJ party with neighborhood buddies in her room
• a make over for mommy
• a sleepover in mommy's bed

I hadn't seen the Yes Day movie before today, but it said a Yes Day must be earned. She definitely earned this! Here's to hoping and praying that SCD continues to work. Harper continues to be strong and feel good. 

Entry 91: Six Years

 It’s kind of unfathomable that it’s been that long without the ridiculousness and love of Brian here with us everyday. In the season leading up to the actual day he died, I’m reminded of the amazing community he built for us. I was smart and during all the wait time in Hospice, I took a screenshot of all the kind words people posted on social media. A few days ago before work, as I read them in my car, I had one of those really good cries. You guys said the kindest things about us both. It touches me that these comments weren’t just said in the moment because we knew things weren’t going well. But these are the people who send words of affirmation (my favorite love language), who still check in, who still share special and sometimes inappropriate Brian memories. The people who surrounded us before, during, and after cancer. You continue to show up for our family and in turn show up for him.

Although grief never goes away, it does get more manageable. Those early days/months/years hurt tons. Today, although I get a lump in my throat and tears in my eyes while typing this, I can think of how grateful I am to have been his person. I was the lucky one.

I’d give all the things to have him experience Harper now. I think that’s what I miss most. Him being her dad. He would be more obsessed with her than he was when she was a baby. If you knew him then you would know he was beyond obsessed. He would love her humor. He would love the way she knows naughty things but is waaaaayyyy too good to ever use them an inappropriate times. He would love her stories about her random third grade drama. He would threaten to fight anyone who hurt her feelings. He would buy her anything she wanted and he’d probably have his own Roblox account to join her in her most recent obsession. Overall, he would love the heck out of her. I imagine too that he is so grateful for the way we are both loved now.

So today, six years after we all surrounded his bed in Hospice as he peacefully passed, we get to hang with his cousins. Harper wanted nothing more for her birthday than to be with them. What a legacy and what an inheritance for us to be have these people. To be able to love all the people he brought us. People who spoil us. People who research Harper’s diet and make sure there is plenty of food accessible to her. People who love us just as we are. Brian is happy today knowing we are here celebrating. He may want us to cry a little so he can feel the most special. We know he loved attention. But today we have joy and love. And so much thankfulness that we made this life together. It’s also unfathomable that our baby turns 9 today! Today we celebrate them both. 

Entry 90: 49!!!!!!!

 My new favorite number!

Medical info: So calprotectin is a test they do and you have to bring in a frozen stool sample. This was the test that alerted us that Harper’s struggles this summer were most likely Crohn’s. The first time I checked the results for this test was in August while I was sitting in the pediatrician’s office. I cried. Normal range is 50 or less, 50-120 is borderline. Harper’s was a whopping 4,560. This meant back on the medical rollercoaster. This meant so many new unknowns. Tears because ugh!!!! And because researching Crohn’s is scary.

Fast-forward to today. Today is week 13 of using food as medicine. We’ve both been doing the Specific Carbohydrate Diet super strictly. Harper has had to make many sacrifices, figure out new normals, and just suck it up a lot these past three months. She’s really expanded her pallet and thanks to our chef, Dot, we have so many delicious options. Harper retested and did bloodwork on December 27th. Of course I’ve been checking every day. Bloodwork came back looking pretty good according to my untrained eye and the ranges they give, but we kept waiting for calprotectin. I kept telling myself I’d be happy with anything under 500 reasoning that these things take time. Gut healing and such. Well friends, you can imagine the tears when I opened the app and the number was 49!!!!!!!! The word normal next to it. What the what?!?!? This is all worth it. I know there is a lot ahead of us and things can always change. But how incredible is the power of being fortunate enough to use food as medicine and avoid the harsher meds while we can. I have to keep telling myself that if we need biologics (immunosuppressant meds to treat Crohn’s) one day it won’t be a failure, but how exciting that today is not that day!!!

I’ve known my girl is resilient however being different in third grade is hard. Never having a cheat day to look forward to is hard. Missing bagels and cream cheese (her number one want) is hard. But this girl is rocking it and it is so so worth it! “Mom can you please make me kale chips?” This is a quote from Harper today that never would have been uttered three months ago. 

Although of course no Crohn’s would be better, it feels pretty darn good that this little chick can do hard things, have amazing results, get to feel better, and keep a pretty good attitude most days! Hallelujah!!! A special thanks to all the parents who have done this diet before us, have done the research, post great recipes online, and tips and tricks on the Facebook group. It is such a needed resource. Also did I mention I’d be in the fetal position on the kitchen floor if I had to do all the cooking?! So thankful for Josh! 

But by the way, 49!!!!!!!!!! 

Disclaimer: We don’t meet with the doctor until the end of January so who knows what will happen then. For now we celebrate 49!!!!!!!!