We've Got Some Catchin' Up To Do
Wow. 6 months FLEW BY! We have had a lot going on over here at the Heasley casa. This blog is simply going to be a “catch up on our life” blog… well, mostly Hattie’s life... so here we go!
Hattie’s New Wheels
Hattie got her wheelchair! Her “Barbie Jeep”, as we call it, arrived in December. The first time Hattie took a spin was at one of our MOPS meetings. I pulled up to Red Rocks Church in our minivan and whipped into a handicapped spot. There were a bunch of moms out front that kinda took a second glance like…”you can’t park there”…until I pulled out our handicap placard, which I felt a little weird using for the first time.
It took me about 10 minutes to unload the wheelchair, put Hattie in, then rig Shiloh’s car seat to balance on the back… but we did it! It felt like the first day of school.
Something new.
People smiled as we wheeled to the childcare area of the church. For the first time, we walked past the “baby room” towards the 2 year-old class. I was so nervous when I dropped her off. I was worried that the other 2 year-olds would look at her weird because of her wheelchair. After the MOPS meeting, I went to pick up Hattie. She had a toy in her lap and was surrounded by her peers. Turns out having a hot pink wheelchair when you’re two and a half is pretty darn cool. Hattie had the BIGGEST smile on her face and she smiled the whole way home. I feel like if she could talk she’d say,
“That was so fun, Mom. I made so many friends… and I didn’t have to lay on the floor and look at baby toys the whole time.”
As hard as it was for me to accept the fact that my daughter is in a wheelchair, after seeing her face light up around her peers it made it all worth it.
Love What Matters & Café Mom
If you missed it, ‘Love What Matters’ reached out to us! We got the cool opportunity to write an article for their page, and share Hattie’s story with even more of the world. After that, ‘Café Mom’ reached out as well! It was pretty fun to connect with more mamas out there. I even came across another 1q4 mom that had never found another family with the same deletion until they saw our article. Here are the articles, if you missed them.
https://thestir.cafemom.com/parenting_news/223663/baby-born-with-rare-chromosomal-deletion
Feeding Therapy
After months of being on the waiting list, we finally got into Children’s for feeding therapy! We spent every Monday for a few months going to the Children’s Therapy Center for feeding therapy. We worked on trying to drink from straws, eating crumbs, eating chunkier foods, and lots more. Overall, I think I realized that feeding is a marathon. It’s not something that’s going to happen overnight. I learned A LOT of tips and tricks from our therapist, but Hattie still has some ways to go before she’s eating more solid foods.
Freaking Seizures
Hattie was doing SO great with her seizures. She hadn’t had one since Easter 2019! … until last month. Hattie happened to be sleeping with us in our bed when I woke up at 3am to a small shake. I turned on the lights and saw that Hattie was having a seizure. Thankfully she came out of it on her own after a few minutes.
Fast forward to this past Sunday night around 8pm. We had just put the girls down for bed, and we were finishing up dinner when I glanced over at the baby monitor. I noticed Hattie’s eyes were open, and she appeared to just be staring off into space. She didn’t look right. I went into her room and, sure enough, she was having a seizure. Just to remind you, Hattie’s seizures don’t look like typical seizures. She turns pale, almost dusky blue, and limp. If I’m being honest, she almost looks dead… except for her very shallow breathing. This seizure wasn’t sitting right with us and had lasted over seven minutes at that point, so we decided to call 911.
5 more minutes passed, and we gave her the emergency meds. A few minutes later an ambulance, firetruck, and 2 police cars arrived in our cul de sac. It looked like a scene from E.T. with all of the paramedics in their hazmat suits (because of COVID-19) I ran down the driveway with Hattie’s lifeless body in her unicorn PJ’s. Even the paramedics had to ask if this “was normal” for her to look like she did – again, it just looks very scary.
After around 20 minutes, she stopped seizing. By this point, she was already loaded up and we were on our way to Children’s. Sitting in the back of the ambulance I immediately had flashbacks. The paramedics asking 1,000 questions and my pumping adrenaline making it difficult to speak. Our sweet neighbors rushed to our rescue and stayed with Shiloh as David jumped in his car and followed us to Children’s. If you don’t have good relationships with your neighbors, I suggest you DO…because you never know when you’re going to need them! We are so thankful to have the BEST neighbors.
We got to Children’s and rolled past the big scary room with the clear glass doors. If you’ve ever had a serious emergency with your kiddo, you know what room I’m talking about! More flashbacks as we passed that room. Flashbacks of David and I crying in the hallway as they intubated our tiny 1 month old almost three years ago and the 10 nurses and doctors racing around that room with the big glass doors. Luckily, we didn’t have to go in there this time.
Hattie seemed fine. She was tired, as she gets after she has a seizure, but she was excited to be up past bedtime and out of the house for the first time in a month. They wouldn’t let David come inside because of COVID-19 rules, so Hattie and I just cuddled in the ER. I hadn’t cried yet, until a sweet nurse peeked her head in and said “Do you guys go to Red Rocks Church? I saw your husband’s sweatshirt…” My eyes filled with tears, and I couldn’t control them. I felt like an angel just walked into the room. Or the same feeling when you see your mom after not seeing her in forever. Cindy was her name. She said that she had already said a prayer for Hattie and that she was going to continue to pray for her that night. Crazy how in the midst of the most fearful times of our lives, God always sends us angels when we need them most.
We ended up discharging from the hospital that night as Hattie wasn’t showing any symptoms of sickness. I was relieved, but also worried. No sickness, but a seizure? This was new to us.
Hattie has been having very frequent Myoclonic seizures throughout the day for the past few months. These types of seizures aren’t harmful, but they are still a little scary. They last a couple seconds and are just a small jerk where she’ll all of a sudden lose all muscle control. The only way they could harm her is if she were sitting or walking and they could cause her to fall. We had an EEG done a couple of months ago which confirmed that she was having Myoclonic seizures throughout the day. It’s a new seizure journey for her, but we are continuing to learn how to control and (hopefully) eventually stop them.
We had a telehealth appointment with our Neurologist who we LOVE, and we decided to add another medication to try and control the seizures. Even though this isn’t really what we wanted, we know it’s what best. The process will continue in finding ways to mitigate the seizures… upping her Keppra dose, adding on another medication and possibly bringing CBD into the mix in the future will be our game plan for now. One day at a time!
Pre School & First IEP Meeting
First of all, I can’t believe that Hattie is about to be THREE next month and that she will attend pre-school in the Fall! HOW IN THE WORLD IS SHE ALREADY GOING TO SCHOOL!? Time seriously needs to slow down.
There was a lot of anxiety built up before Hattie’s first IEP meeting. (IEP stands for Individualized Education Plan). The scariest thing about it was the unknown. Not knowing how the meeting was going to go, who was going to be there, if the people there would be nice… all the things. Fortunately, the meeting went really well. Everyone was very nice, and it wasn’t too scary. The hardest thing about the meeting was just the harsh reminder of how behind Hattie actually is. I just had to put on my game face and get through the meeting without crying - that was my main goal!
After the evaluation and the 2.5 hour IEP meeting, we finally expressed all of our concerns, wishes, Hattie’s needs, goals etc. They came to the decision that Hattie will be attending Fletcher Miller Pre-School in the fall! We couldn’t be more excited. We had secretly hoped and prayed for Hattie to be placed at this school. Fletcher Miller is definitely a “unicorn” of a school. It is the only one of its kind in Colorado. It is a dedicated special needs school, with an integrated pre-school program (meaning typical kiddos and special needs kiddos combined in one class.) I feel super good about the decision of Hattie attending Fletcher Miller. Unlike most schools, Miller has full time PT/OT/Speech and nurses and more staff than students. I feel like Hattie’s needs will be met there and that she will be loved and safe. I already had a Zoom meeting with the pre-school director and her teacher. I loved them both, and I just know that they’re going to fall fast for our little Hattie. Go Mustangs!
COVID-19 Quarantine
Well, as the rest of you…we are home, and have been home for over a month. Honestly, we are over it. BUT, we are following all the rules and staying home and social distancing. Hattie has been receiving her therapies via telehealth, which has been challenging. We are just soaking in lots of family time, and trying to love on these babies as much as possible! Thanking God everyday that we are healthy!
I promise it will be sooner than 6 months by the time we write another post ;). Love you, fam!
-Abby & David