Health update (me)

     I saw a new cardiologist today. I've not been feeling great the last little while after an amazing reprieve of symptoms. The doctor I saw today treats a lot of POTS patients and had some great treatment recommendations. 

    I've been having weird fluttery feelings in my chest that don't quite feel like normal palpitations. I went to the ER last week for a flare up of POTS and gastroparesis and my EKG was abnormal. It showed "nonspecific ST/T changes" which can mean nothing at all or it can indicate arrhythmia. I am no the current wearer of a 30 day cardiac event monitor! It's not cute, so I'm trying to find all of my high neck shirts so it's not visible. 

    She also recommended low dose naltrexone (or LDN) and said it's been shown to help with both POTS and gastroparesis. I'm willing to try anything at this point! I'll start that later this week. She also recommended a B vitamin to help with fatigue. She recommended restarting IV fluids but with lactated ringers instead of normal saline as she's seen some better results with LR. She offered physical therapy to help with conditioning, but I'm pretty active so I'm not going to pursue that at this time, but it's nice to have it as a reserve option. I'm going to continue to wear compression stockings/leggings and try to orally hydrate on days I'm able to take in enough fluids (gastroparesis complicates this, of course).

    She said both POTS and gastroparesis (in my case) are caused by an autoimmune disorder attacking my autonomic nervous system.

    Overall, it was a great appointment. I felt listened to. I felt heard. She said a lot of POTS patients get told to "see psychiatry" and are dismissed as not having a physical illness and said I was really lucky to have had a good cardiologist from the beginning. I love the doctor I was seeing, but I wanted a second opinion. I'll be switching over to this cardiologist to take over my care. My other doctor was great and was willing to try anything I suggested, I would print out studies and bring them to him with ideas. I will always appreciate how willing he is to listen! But today was amazing to have a doctor who is super familiar with my diagnoses offer ideas and suggestions. She's in the womens heart center and obviously sees a lot of women. She also called me young, so I will love her forever 😂

I'm excited to see how things go and I'm really hopeful that I'll start feeling better again! I'm still feeling a million times better than I did a year ago. But summer is coming and generally I do absolutely terribly in hot weather. Fingers crossed!

Little things and building community

     It's 5:15 on a Monday morning and I'm drinking coffee in a quiet house. I'd rather be SLEEPING in a quiet house, but I'll take what I can get! Lauren woke up around 3am (2:55 to be exact) and I haven't been able to fall back asleep. Once she wakes up at night, she often wakes more than once so it's really hard to get my brain to turn off. Since Greg works midnights, I'm the only adult here so I'm it for nighttime supervision. Now that I'm only working 2 days a week, it's not the worst ever. I can catch a nap while the kids are at school if I need to, but usually I just power through. Of course, today I'm working a 10 hour shift so I'll be a zombie by the time I get home this evening.

    We had a fun weekend! Friday while the kids were at school I went on a solo 2.6 mile hike at and it was beautiful. I saw deer, swans, birds, chipmunks, squirrels, and tons of plants. It's great to see things getting green again! I've discovered a love for hiking and I honestly think I love it so much because it's one thing I do that's just for me. Sometimes I'll bring Lauren (to a paved trail), or Ryan, or my mom, or Monte. I discovered my love of hiking just this past January, so even chilly days are a lot warmer than when I started. When I first started I was TERRIFIED of getting lost, even at a local trail. But honestly I'm super proud of myself and how well I've learned a sense of direction. At the local park trails, parking is south of the woods, so I will sometimes use the compass app on my phone if I've gotten turned around. But recently I did a longer hike at a local metropark and navigated the trail pretty well. If you know me, you know I am terrible with directions so I'm very excited.

    Saturday we went to a birthday party for my cousin's daughter. Because of COVID, it was the first time meeting her for a lot of us! It was outside at a park and everyone wore masks, it was great to see the whole family and feel safe while doing it. A lot of us are vaccinated, too. I got to hug my grandma. Luckily, my mom and dad are a great help with Lauren (Greg was sleeping) so I really did enjoy myself. The kids had so much fun. Ryan won a goldfish! The kids named him Nemo. Ryan and I snuck out to a local pet store and bought a 5 gallon tank with a filter as well as a various assortment of stuff to go with the tank. We spent a small fortune and it was totally worth it. So much fun! Growing up, we had a large freshwater tank and my sisters and I have great memories of "helping" our dad with it. Setting up Nemo's tank was hilarious on Saturday evening. Both kids were "helping", and yelling for Greg that I needed him to help. I actually didn't, and I figured it out all by myself! I did need his help with figuring out how to fill up the tank, I bought distilled water from the grocery store to fill the tank and it was so heavy, and it was drinking water so it was only coming out of a tiny little spout. I swear it would've taken a week if he hadn't gotten the cap off for me. Lauren was sad that Nemo was going to live in Ryan's room, which cracked me up on the inside. Can you imagine Lauren with unsupervised access to a fish tank for hours on end?! 

    Sunday Lauren and I went to church together, then I recruited the kids to help me pick up sticks (their job) and dog poop (my job) in the backyard. Once Greg woke up I snuck away for a hike. I got just under 2 miles in and it was amazing to see how green everything is getting! Then we went to our church small group. 

    It was a great weekend AND Lauren struggled behaviorally, which I think is just going to always be part of our journey. It's worse when she does a lot of physical activity and I think it's probably because her leg hurts. She did a ton of walking and playing (kid stuff!) at the party on Saturday. Yesterday at church she had to "take one break" (how she announces she's going to sit down, she'll just drop wherever she stands, LOL) after service, but we've been committed to not using the elevator and making her do the stairs (kids ministry is upstairs). 

    We've been working on mobility, weight, and activity and it's just going to come with some behavioral side effects. I sometimes have anxiety about what her behavior looks like in public places, but as she gets older I find I care a lot less about what our family looks like to other people. It helps that we've been able to build a community of people who meet us where we're at and love our kids for who they are. Our families are great, of course. Being up north is great, our campground friends are so kind. At church, everybody is happy to see Lauren. She is fully included with typical kids in kids ministry and she really loves going and seeing her friends! Our small group is comprised of really amazing people who accept Lauren where she's at on any particular day (adults and kids!). Sometimes that looks like high fives, hugs, and greetings. Sometimes it looks like poor eye contact and refusal to engage. Ryan often does not come to church with Lauren and me because he hates crowds. He comes with us to small group about 50% of the time. I certainly don't push it on weekends where we've done a lot of social stuff (like a big party on a Saturday like this week). I've learned that if we have a super busy and social weekend, Ryan tends to be "sick" on Monday mornings. Believe me, I WISH Ryan would want to go to youth group or attend church. But it's just not his personality and I've got to put my kids mental health at the top of the priority list. Our church community has shown such grace with both of our kids (same for the church we attended previously). I've never one time felt judged for Lauren's behavior or for Ryan's lack of attendance. Heck, Greg almost never comes to church because of his work schedule and I've never gotten anything other than a "Tell Greg we said hi!" or a friendly "So glad you could make it this morning!" to Lauren and me. That just honestly means the world to me. With a family that looks a little bit different, it feels great to not feel othered, left out, judged, or excluded. Yesterday was a particularly rough morning for Lauren and I. As we were walking into church, she veered in to the bathroom without warning and we were already running late. Instead of standing in line to check her in afterwards, a friend who was working the check-in desk had already printed our tags since she saw us head to the bathroom. It's the seemingly little things that make such a big difference.

    I struggle so much to admit that this life is hard because it feels like I'm complaining. I'm working so hard to use "and" instead of "but". This life is challenging but and so beautiful. I'm so grateful.

Seeking our wonderful

     Today, I was brave. It's gorgeous outside again and supposed to rain later today and tomorrow...and cloudy all next week. So I wanted to take Lauren to the Kensington Nature Center trails. Problem is, it's not paved and it's not super wheelchair friendly (obviously, because it's middle of the woods). We've done it before, but I've needed another (stronger) adult to help me muscle her chair up hills and over roots. And Lauren has to be feeling super cooperative because she just absolutely has to get out and walk for parts of it. 

    Well, our day got started. We went to the grocery store and Lauren was having some difficulty making great choices (aka not being nice) so I was nervous to try the nature trail with her. So instead, we went to Maybury State Park since there's a paved trail. It was so much FUN! It was an excellent workout for me since it's pretty hilly and pushing a 95lb kid in an adaptive stroller up those hills is not easy. She got out and walked a couple times, too! We went to the park after and they had an accessible swing that's on a track, and as we were leaving she said, "That swing was just like a roller coaster!"

    It's a 4.7 mile trail, and Lauren was ready to play at the playground, so we only went about a mile in and turned around, making our trek just under 2 miles. My twin sister and our dad did the whole trail this winter and loved it, next time I have some kid-free time on a beautiful day I'll definitely go back. I'm trying to build a list for the summer of things I can do alone with Lauren (ie, not needing another adult) and get her more active and moving. Generally, we refer to Lauren as a two-adult kind of kid. She needs somebody for the heavy lifting and a spotter 😆 The local pool is a big maybe, depending on mood and behavior that day. I've had some fun (aka shit show) times trying to get Lauren out of our city's rec center pool WITH another adult! Any beach is a hard pass. The local park is a yes because if she's having a behavior moment it's safe and easy to wait her out. We've definitely added Maybury as another yes. The zoo is a maybe. The nature trail is a maybe. Walking our neighborhood is a yes. Bike rides now are generally a yes, but her bike is too small so that's becoming less fun for her. Walks are tricky because I want to get her more exercise, but if the wheelchair is available she wants to sit in it. But if we don't bring it and she can't do it, it's not like I can carry her home or to the car or whatever. Her low muscle tone (associated with Down syndrome) and her foot issues (from her congenital bone fusion and subsequent foot surgery) make walking distances physically hard for her. It's way easier to get her to walk when my older sister and niece are with us because the girls love to play. It's hard to find motivators for Lauren that aren't food, so I've been using things like "Mommy will play Barbies with you" or "we can read books together" when we're done.

    Honestly sometimes it's not necessarily that things are physically (for her) hard. Sometimes when behavior is particularly challenging it's just not worth it to leave the house. WOULD we have fun if we did x, y, or z? Maybe, but sometimes it's a disaster. Sometimes my chronic illness is a factor and I know I don't have the motivation or ability to get through an outing on a bad behavior day. So we'll take today as a win and start planning for more exciting days soon.

    So. Is it brave to take your 9 year old on a paved hike and to the park without a second adult? Generally, probably not. But for us (and lots of other special needs families) life looks a little different. My life motto has been that life doesn't have to be perfect to be wonderful, so we are just going to keep seeking our wonderful. 

    

PANDAS is back... and Easter

    Ryan started showing symptoms of a PANDAS flare this week. It might've actually been going on a bit longer and I was a little bit in denial, but this week it was obvious. He was clearing his throat excessively, he was chapped all the way around his mouth, and his hands were peeling. Plus he had a significant meltdown early this week that broke my mama heart because I knew it was anxiety based. (For Ryan's privacy, I'm usually purposely vague on what exactly this looks like for him.) For him, all signs of a strep exposure and resulting PANDAS flare. (One time my mom told me to get him checked because of a behavior change with zero actual illness symptoms and she was right, strep swab was positive!) Luckily I had some antibiotics at home from last time (and I cleared it with his doctor!) so we got that started really quickly and he's pretty much back to baseline. I didn't even swab him for strep this time. Thank the Lord he usually recovers so quickly once we start antibiotics. The plan is to try 10 days and see how he's doing at that point before deciding if more are needed. I was originally pretty sad because since his tonsillectomy in June he's been doing so well and I hoped we were done with this forever, and this just kind of snuck up on us. But today was a great day and he was back to laughing with his friends online, playing with his cat, playing outside, and wanting to spend time with us. 

    It feels good to have our old Ryan back and selfishly, I'm glad to be back to having at least one kid who listens to me! Lauren has been having problems being kind again this week and she apologizes profusely, "I'm sorry I'm being mean. I will try to be kind." over and over again. I know she's trying! But by bedtime, this mama is ready for a break.

    Easter was amazing. The weather was 70 and sunny, which is best case scenario in Michigan. We went to church as a family, then Greg, Lauren, and I went to a friend's house to celebrate another friend's baptism (Ryan chose to stay home), and then we all went to Grandma Nita's for Easter dinner. It was PERFECT! 

    Today I escaped and got my hair done for the first time in forever and it was magical. The COVID case numbers are crazy high here, and I'm afraid schools will be remote again soon. I was luckily able to reschedule my next week Friday appointment to this week. We have had a few days of solid 70's, but next week is supposed to slip back down to the 60's. Perfect hiking weather! Hopefully the kids can stay in school and I can escape on my days off and spend some time in the woods with my dog or walking in the park with my twin on her lunch break.