Uncle Michael Comes to Visit

We got to spend the past week with Uncle Michael!

In our house, he basically achieved rockstar status the moment he arrived. All the kids were constantly competing for his attention, just wanting to soak up as much Uncle Michael time as they could. We got to enjoy some fun D.C. adventures {National Zoo and National Mall}, but we also got to enjoy time around home just playing!

Watching basketball with Uncle Michael

We got to show Uncle Michael our water table {which the kiddos were really excited to show him}, and then they played some basketball with him. That mostly consisted of Uncle Michael blocking shots and the kiddos giggling uncontrollably :)

On Tuesday, it rained all day, so it was a good time to hang home. The kiddos enjoyed all-day fun with Uncle Michael, including keeping him captive to reading books, dressing up, watching a movie, and playing games!

On Uncle Michael's last full day, we made the scenic drive out on the Snickersville Turnpike to get ice cream at the Bluemont General Store. It was a good way to show Michael the beautiful countryside, and the kids were just excited to eat ice cream!

We took an evening walk around the neighborhood to show Uncle Michael around and wrap up a super fun week together. Of course, Aiden was right there next to Uncle Michael, his permanent walking buddy :)

And every night, Uncle Michael read our Bible story :)

We had such a fun week with Uncle Michael! The kiddos were sad to see him go, but we are so glad he was able to come visit. We look forward to him coming back to Virginia :)

D.C. Adventures :: National Mall!

Today we headed back into D.C. to visit the National Mall! I was so proud of how well the kiddos did today. They were able to enjoy the walk and being outside, while still being quiet and respectful at the memorials. We walked A LOT, and they never complained once. It's fun that they're at an age where we can start visiting fun places!

We walked by the Washington Monument, on our way to the World War II Memorial. The kids loved the fountains, and they loved seeing all the ducks taking baths in the fountains.

Love for our new state!

Sending love back to Texas

We walked the length of the reflecting pool and stopped for a water break and a snack. We got to sit in the shade to cool off and watch the people go by. A couple was taking some wedding pictures, and the kids watched every minute, wondering what they were doing haha. 

Once they got fueled up, they were ready to head to the Lincoln Memorial! Aiden climbed up the stairs like a pro, and Eli and Maddie kept asking, "who was that big man sitting on the chair?"  :)

And once again, everywhere that Uncle Michael went, Aiden was sure to go :)

Little legs walked pretty far today, but our kiddos were such troopers! It was fun to be back in D.C. {for me}, and fun to share it with Mike, our kids, and Uncle Michael. I know these will be fun pictures to look back on, to ooh and ahh over how little our kids were when they first visited our nation's capitol. We look forward to visiting again soon!

D.C. Adventures :: National Zoo!

Uncle Michael is in town, so our first adventure was to hit up the National Zoo! It was an overcast morning, which allowed for cooler weather, and we had so much fun! The kids loved seeing the different animals, some of the same animals we watched on web cams during quarantine! They all did SO well making the trek around the park.

Maddie loved the elephants...she was so interested in what they were doing!

We got stopped at the Orangutan Crossing, where the orangutans cross on wires above the walkway. The kids loved seeing them walking right above us!

Just hangin' out, watching us below...

Aiden is fully attached to Uncle Michael. Wherever Uncle Michael goes, Aiden goes. And they are just about the cutest pair :)

We were sad that we missed the pandas {we were not able to get passes}, so we'll just have to go back another time!

Snack time :)

Crohn's Chronicles :: Entyvio Side Effects

My last infusion was 3.5 weeks ago, and I have felt the best after this one, more so than I have after any of my previous infusions. I haven't been symptom-free {that privilege is still eluding me}, but I had a full week where I actually felt pretty good. The fatigue is always present, but that is usually the last to go anyway {if it ever truly leaves at all}.

I am grateful that I have experienced minimal side effects from Entyvio. I think because my body has already experienced a biologic {Humira}, introducing a new one hasn't been quite as severe as it could have been. And some of the side effects may not even be from Entyvio itself, but just from the level of chronic inflammation and sickness I have experienced with Crohn's; it's often hard to distinguish. But there have been some new side effects to which I am adjusting.

Forewarning: there's nothing exciting or probably even interesting about this post haha; I just like to have a record of my experiences. And hopefully it can be helpful to someone else on a Crohn's/Entyvio journey, if they happen to stumble across my post.

Hair Loss

I had this when I first started Humira too. But this time has been more severe. I thought I lost a lot of hair last time, but that was nothing. I am thankful that I have a lot of hair as it is, because otherwise it would be much worse. I started getting a bald patch in one spot, and my hair feels much thinner overall. Thankfully, it is finally starting to let up and get better, though I am waiting to see if it ramps up again with my 4-week infusions.

Skin Sensitivity

This is a new symptom. When we first moved to Virginia, I told Mike that it felt like the sun was closer. {I realize that's actually true during the winter, but not because we were in Virginia haha}. But that was the best way I knew how to describe it, because my skin feels like it's burning when I am outside. I cannot be in direct sunlight for very long {mere minutes} before my skin feels like it's burning. Which is not conducive to our goals for spending more time outside! Turns out, Entyvio actually makes you more photosensitive. And plus, I am more prone to skin cancer because of Crohn's. So gone are the days of golden tans and basking in the sun; I have to be much more diligent and careful with my exposure to sunlight. I have also had some severe scalp sensitivity. It’s not a burning sensation, but rather a painful, sensitive-to-the-touch feeling. That comes and goes, but it’s such a bizarre symptom.

Headaches

Entyvio can increase the frequency of headaches. Thankfully, I have not seen an increase in the number of headaches I experience, but I have experienced an increase in severity. I struggle with migraines {probably getting 2-3 a month}, and the last few months have been brutal. I always get the icepick pain, but now I am also getting severe nausea and vomiting. And Tylenol often doesn't touch it. I am waiting to see how these play out as my body heals from Crohn's, because if they don't get better when that part of my health stabilizes, then I am probably going to have to seek out additional treatment.

Persistent Cough

This is also a common side effect, but I am still trying to figure out if this is specific to Entyvio or just because I am taking an immunosuppressant. I am still hopeful that this is just the lingering side effect of a cold I got several weeks ago. That has always been the case: it takes me longer to get over a simple cold, with a cough often lingering for weeks. But this one is still lingering after almost 7 weeks without enough improvement, so I'm not really sure yet.

Feelings of Hunger

I have no idea if this is related to Entyvio or not, but I have noticed that my feelings of hunger are back! I lost it after I started Humira, and it really only returned {somewhat} when I was pregnant. But now I feel hungry like a normal person again! I know that sounds so weird, but it's strangely comforting to feel my stomach growl again :)

Stomach Pain

This could be Entyvio related or not. But within the last couple of weeks, the stomach pain that I experienced last year is back. It's not quite as bad, but it has me at least taking notice. The Lialda has been helping with that, so I am hoping it's just an anomaly that will go away soon. But it has been a reminder to me of how I have seen some significant relief from several months ago. Perspective, right?

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I have another infusion tomorrow, and I have my colonoscopy schedule for next week {lucky me!} I'm hanging in there...still praying for remission!