A Week in the Life of Maddie
Maddie is a busy little lady and she’s only 19 months old. Her weekly routine started in April of 2021 and it has been non stop ever since. We’ll start with her daily routine.
If we’re lucky, Maddie wakes up right around 5:30 am. Now with all of her sleep issues, this varies. One thing that doesn’t vary, she needs her anti seizure medication at 6:30 am. So whether she’s awake, or we have to sneak into her room, she’s getting that medication. She also needs this medication at 6:30 pm. Her other medications include a daily dose of Miralax, a probiotic, and a B6 supplement to offset the crankiness her anti seizure medication causes.
Now Maddie loves to roll around and play on the ground. However her day isn’t all play, she has some work to do. She wears a Spio Vest on and off throughout the day. This helps with her posture as well as strengthens her core. She also does 45 minutes in a therapeutic stander. We have to strap her in and tilt her upright. As you can imagine, this isn’t her favorite thing in the world. Our little lady knows how to voice her displeasure.
At home therapies are one thing, going to Grand Rapids is quite another. Once a week Maddie goes to Mary Free Bed for some therapies. This is an hour and half round trip for us, and two hours of therapy at the moment. First Maddie does feeding therapy with a dietician and an occupational therapist. They watch her eat and try to get Maddie to feed herself.
This is just the warm up, the next hour is with her arch nemesis, Micah. Now Micah is her physical therapist at Mary Free Bed. This is an hour-long battle between the two, in order to get Maddie to use muscles she didn’t know she had. When I say it’s a battle, it’s more of an hour long chess match between a toddler and an adult. Maddie goes along with the program for a while, but looks for the first chance to fling herself backwards. There’s fake tears, real tears, fake sleeping, head shakes, eyes clenched shut, and a real mission to fight Micah at every turn.
The drive home is exhausting for both parent and baby. At this point Maddie is over life, and just wants to be home. If we’re lucky she’ll sleep on the way home. If we’re not, it’s a 45 minute crying session on icy West Michigan highways. We do this every single week.
This doesn’t take into account trips to neurology, genetics, otolaryngology, neurodevelopmental, physiatry, and soon North Carolina to an Angelman Syndrome specific clinic. Oh and we shouldn’t forget, we have an in home physical therapist come in once a week as well.
With all of this going on in Maddie’s life, sometimes she just needs a therapy break. We took our first therapy break a month ago. Maddie was burnt out. She began not responding to anything the therapist was trying to accomplish. We took a two week break, and after that two weeks we had a new child. She was engaged in her therapy again. This will be her life over the next few years.
Nicole shoulders a lot of these responsibilities because her schedule allows her to. She’s the perfect mother for Maddie. Thankfully FMLA allows me to fill in the gaps as well, without fear of discipline for too many missed days from work. There’s also help from our family and Maddie’s nanny Ya-Ya. We are so thankful for everyone that surrounds us.
We push forward because we know this is the best thing for our little angel. We’re so thankful for the medical team that has embraced Maddie and her diagnosis. It truly takes a village, and we are so thankful for the one that surrounds our daughter.
- Written by Adam Birchmeier
