These last few days have gotten away from me. I’m currently sitting in my car, laptop on my lap outside of Beckett’s wrestling practice typing this blog.
I’ve found an immense amount of respect for parents who juggle everything when it comes to medical care for their kiddos. Arden’s needs are so few in comparison to other peoples and it’s been exhausting to say the least! Her sleep study followed by therapy two days in a row has this mama’s head spinning.
A quick over view- Arden has had sleep issues since she was essentially was 2 weeks old. We know 2 week old baby’s don’t sleep great. But that’s really when everything with Arden started. We don’t know why, but at two weeks it was like someone flipped a switch- our sweet snuggly baby who was sleeping 5 hour stretches was gone. She was angry, fussy and wouldn’t go longer than 2 hour stretches any time. Those two hour stretches of sleep became 2-3 hour stretches of being awake in the middle of the night. We finally started rotating who was sleeping with her, which allowed for at least one of us to get a decent night of sleep. That also really cut down on the time that Arden would be awake at night. Now instead of getting up to come and get one of us then being awake for hours she would fall back asleep much sooner. Thanks to a switch in pediatricians, a quick video of her angry outburst and chats about her sleep we finally received some referrals to address some concerns, two of which were referrals to a sleep doctor and a referral to OT to address what we would assume to be Sensory Issues.
Things were moving along then BOOM- Covid. We started one therapy via zoom and met with the Sleep doctor via zoom as well- he suggested a sleep study and said as soon as things lifted and they re-opened I would get a call. Months later that call came-But we had to change insurance companies which gave us really crappy insurance (so crappy it was basically like having no insurance) That insurance was not going to cover any of the sleep study so we would be WAYYYYYYYYY more than I thought. We decided to hold off until we could figure out if our new insurance when open enrollment happened would cover. If so- we would wait until after the new year.
HELLO NEW YEAR! Just before Christmas we received our new insurance information and I called to get scheduled! They had an off campus branch location in Westerville that typically you could get scheduled quicker. Appointment was made for a few weeks later! Almost a year into the making I was thrilled and anxious. I showed Arden a recommended video and she sternly said, “ummm, nope. I’m not doing that.” We had already been verbally preparing, for almost a year about our special sleep over where arden would get stickies all over her body. (Insert my fingers poking her from head to toe to make it more silly and less scary).
Originally I was told we would arrive at 6pm. Arden doesn’t typically go to sleep until at least 10pm, so the thought of entertaining my very high energy child in a hospital room for 4 hours did NOT sound very appealing. But they gave me the option of 8pm and I took it! Kenny took a half day so that he could drop us off and pick us up and I could sleep on the way home. We were told we would be discharged by 6-6:30am and I knew I did not want to make the 2 hour drive after a night of no sleep so Kenny dropped us off and stayed with a friend since only 1 parent could be at the study with her.
My biggest fear was her sensory issues. She doesn’t like her hair up, hates clips or barrettes. Doesn’t like things on her face and *sometimes* doesn’t like wearing pajamas to bed, only to school the next day haha! I packed the blankets she sleeps with (she literally will not sleep with any other blankets) multiple pajama outfits as she can be very picky and lots of things to entertain us. I also got a phone call earlier in the day from the sleep lab- my initial thought was that they were going to ask me to reschedule. But it was just to switch to the main campus sleep lab which ended up being closer to our friends house where Kenny was staying!
We grabbed a bite to eat when we got in town and headed to the mall in hopes of letting her burn off her car energy. We walked by build a bear and her eyes lit up. Unfortunately we found out the mall closed in 20 minutes so we made a mad dash to create the coolest bear for our girl to take to her sleep over! We were on our way when of course I missed the exit and I could feel the stress setting in. I did not want to be late.
Everyone from the mask & temperature desk to the admissions office were so incredibly nice and interactive with Arden. Her sassy attitude had the girls in admissions laughing the whole time. I realized as we were checking in that Kenny put her shoes on the wrong feet, I’ll give him the benefit of the doubt since it was dark outside! We made our way upstairs and to a waiting area while we waited for our nurse. We stared out the window and took in the city and christmas lights that still decorated the trees below. Arden was very excited. Our nurse arrived and introduced herself- her name was Amy. For those who don’t know- that’s my moms name. It felt like a sign from her- telling me to relax. We made it to our room and Amy explained all that was going to happen. Arden was so ready to brush her teeth and get her jammies on- both of which are constant battles at home! She checked out and tested my bed for the night- gave it the go ahead!
Arden got to select a movie to watch- her new favorite- sonic was one of the first options! Amy came in and wasted no time. Arden was to sit in a chair and as she made her way over she looked at me with big sad eyes. I could tell she was getting scared. Both Amy and I reassured her and she hopped right up! I know my kids tend to feed off my anxiety so I made my way to the otherside of the bed and watched, gave her small praises throughout it all.
You guys. My girl BLEW me away with how well she did!! She sat the entire time, NO fusses. NO tears. She did spend a lot of time with her nose plugged since the glue used was so stinky. She moved to the bed and got a nasal cannula and pointed out how she was just like her mawmaw (my grandma who has been using oxygen recently). Proud is an understatement!!!
Before lights out we had a tea party, took care of her baby and did a little coloring. Although Arden was so “ready” for bed, she sat up about 30 seconds after Amy left the room. They had cameras and a radio she could talk into the room and Louie was quite surprised when Amy said, “Arden time to lay down!” From outside the room! Amy had to come back in 3 times in the first 20 minutes lol! Thankful it wasn’t more! They had a really neat wall behind the bed that would rotate colors, and stayed blue during “lights out.”
The nurse woke us up around 4:45am to start removing all the leads and such and stated Arden had already been awake for some time. She did great getting everything removed and we headed home. In true Arden fashion, she was awake the whole way home and stayed awake till around 2:45 pm haha!
No results yet, so still praying for answers! The nurse said around 2 weeks for the doctor to read them. I can’t thank everyone enough for your prayers, positive vibes and more. Your support blew me away, brought tears to my eyes and more! Thank you, Thank you, Thank you!
A few cell phone pictures to capture the whole experience!