{iPhone Rewind} :: September

Date Night Box #2: Mochi! We made mochi ice cream and enjoyed some fun conversation. The dessert was not enjoyable, but the company sure was!

"Look, Mommy! I have twins in my belly!" Haha

I love Bible story time before bed :)

I got to enjoy a Panera lunch on the patio...all by myself :)

Our little builder :)

Pigtails {with mismatched bows}, 2 skinned knees, and a book:)

Learning about magnifying glasses!

National Teddy Bear Day! Complete with a teddy bear picnic, Teddy Grahams, and some teddy bear books.

Grandma sent new crayons and coloring books!

Aiden hit his 800-book milestone!

Time to clip nails!

Painting with spaghetti

Fall is here! Bring out all the pumpkins and fall-scented candles :)

Maddie: what are these, Mommy?

Me: Oh, those are temporary tattoos. You put them on your arm.

Maddie: look, Mommy!

Working on some math for Preschool :)

We got to see our sweet friend Grace! She was in the trenches with us at Redeemer Church, and she has been such an amazing prayer warrior and encouragement to us ever since. She was in town visiting family, and we were so excited to steal some time with her!

Grace was so sweet to bring me these beautiful flowers!

He came running up the stairs, so excited to bring me the flower he had picked for me!

We learned about magnets in science!

Aiden learns with us too...but usually ends up doing things like putting socks on his hands haha

Our little band! Learning about instruments in preschool :)

Dinner prep and conversation with my girl

I am taking full advantage of the pumpkin season! :)

Crohn's Chronicles :: Slow Progress

Today I had my first injection for Stelara. I had my loading infusion 8 weeks ago, and from today forward, I will take the medication via self-injection. They require training with a nurse, as well as monitoring for reactions, and today was the first of two sessions.

I was a little nervous; I did Humira shots every other week for 7 years, but it's a self-injectable pen {meaning, I just had to hold it in place and push the button}. But I have always been wary of sticking myself with needles. Mike did all of my PIO injections and all of my B-12 injections. Stelara is a pre-filled syringe, but there are no buttons; you have to actually stick yourself. I knew it wouldn't hurt that bad, but it just goes against every instinct to stick myself! 

Thankfully, the build up in my head was much worse than reality. It actually was very easy! I am still going to have to psych myself up to stick myself, but I think I will get the hang of it pretty soon, and it will eventually just be second nature. But the really fantastic news? I only have to do it every 8 weeks, and it doesn't hurt or sting!!  :)

I'll do my injections in my leg, like I did with Humira

But Is It Working?

So, the big question: is it working? 

The simple answer: it's too soon to know for sure.

I finished taking the steroid taper about 2 weeks ago, and honestly, I started seeing a slight improvement in my symptoms after that was done. BUT, after that, I had a full 9 days of feeling good! I haven't had that many good days in a row in over a year. A year. My previous record was 6 days, and I can count on one hand the number of times that has actually happened. So for now, I'll take that as a good sign and hope for the best!

Any Side Effects?

There are a few side effects that I am monitoring. I am not sure what are related to Stelara, what are related to the transition from one biologic to another, what are related to active Crohn's, or what are something completely random/unrelated that I get to experience alongside all this Crohn's stuff.

• Headaches- I have struggled with migraines since before I was diagnosed with Crohn's. But they have mostly been stress-induced, and not very frequent. This past year though, I have seen an increase in both frequency and severity. Stelara can cause headaches, so I have made my doctor aware and have started keeping a log. I'm hoping that once my body adjusts to the new medication and {hopefully} gets into remission, I will see a decrease in these. 
• Joint pain/body aches- this is a background symptom that comes with Crohn's. And since I have had active inflammation for 22 months, it's no surprise that I have had a lot of new/increased joint pain and body aches. I wake up many mornings feeling so stiff and achy, like I am 70 years old haha, and then basically ache all day. So again, I am hoping this settles down a bit when I finally reach remission. My doctor knows about this one too, as they can help if it becomes more chronic and painful. I don't think I'm quite there yet, but it would be nice to go back to remission-status aching {where I basically ached every now and then and with weather changes}.
• Fatigue- this is also a background symptom that comes with Crohn's, and it's usually the last to go, so I am settling in to have this for awhile. My body is just tired haha. It's hard to describe to people, because everyone in general is tired with busy life. But this is more than just tired. It's an all body exhaustion that really just slows and shuts you down. It's like I hit a wall, and I just don't have the energy to do normal things. It's a constant balancing act in trying to get rest and not over-exhaust myself. I will be checking my B-12 levels when I do labs next, so I am hopeful I will get to go back on B-12 injections to help with the fatigue.

What's Next?

Now we wait! I have my next Stelara injection {and training with the nurse} in 8 weeks, and my doctor will run bloodwork after that. After the 3rd dose, they can measure the amount of medication in my body to see if it's enough, see if I have antibodies to it, and check my inflammation levels. So I keep hanging in there, monitoring/logging my symptoms, and praying that I start seeing more progress. The overall prayer is that I achieve remission on the 8-week interval, hopefully within the next few months. That my body adjusts quickly to this new medication, without any new side effects {and lessening of the current ones}. Until then, praying that I can trust the Lord's timing and lean into Him on the hard days.

1000 Hours Outside :: August

We didn't spend quite as much time outside in August...I feel like we started strong, then I'm not really sure what happened in the entire middle of August, and then we ended strong. We did have a lot of rain that kept us inside, and I had quite a few sick days. I really do feel like it was a huge win for us if we could just squeeze in a 30 minute time slot outside. But despite the lower hours this month, we were still able to squeeze in several fun outdoor things :)

We spent more time at "the big hill," where the kids like to play and explore. They find something fun every time we go, and it really is just a big hill in the middle of the neighborhood haha. But they love it!

Showing Daddy the bug they found

New trick: somersaults!

We spent some more time riding our bikes. They're all starting to get the hang of it better, with Maddie zipping around the parking lot at super high speeds and Eli wanting to go up curbs haha. They're still pretty wobbly and unsteady, so I'm thankful they don't fight me on wearing the protective gear :)

And if we are up at the church, we inevitably get the "can we play on the playground??" barrage of questions. This particular time, Aiden wanted to keep his helmet on, which came in handy a few times haha.

Safety first, buddy!

We still spend most of our time just on our deck, in the backyard, or just in our neighborhood. We have been able to enjoy some fun outdoor play time with our neighbor friend C, and the kids are always asking when she will get to come play again. Not pictured are the outdoor sidewalk chalk and cupcake celebration for Aiden's birthday and a fun night at the pool with the Walberts!

I mentioned this silly squirrel last month, and he has still been coming around at breakfast and dinner to have his fill of the seed bucket. He's super cocky too; Mike has tried to shoo him away a few times {actually having to go outside and get close to him before he leaves}. And he'll go...then come right back and walk right up to our kitchen glass door, as if to say he isn't afraid of us. Since he comes around so often, we decided to name him. So meet Henry, the Sneaky Squirrel {named by the kids}. There is nothing sneaky at all about this guy. He does what he wants. He even has been seen in our front yard, helping himself to snacks the kids have dropped from the car. I'm curious to see how long it takes him to finish the bucket of seeds and what he'll do when it's done...