Axel's Story; The Beginning
Here is a little background on how all this chaos became our life;
A little after Axel turned one year old he began walking independently (YAY) About the time he was one and a half years old we noticed he would lock his knees every step he took which was off but not a huge deal nor was it stopping him from getting around. Closer to the one year nine month age he began falling while walking more often than not. None of these things seemed to be a big deal but something I was definitely mentioning to his pediatrician at his two year checkup.
At Axel's two year checkup (October, 2019) the doctor checked him out and said it is not uncommon for two year olds to still fall often, ya know everyone grows at their own speed. However, doc sent us to get a hip x-ray just to be sure! Good news was the x-ray was perfect but that didn't give us any answers. Our pediatrician then referred us to a neurologist located in Peoria.. sounds a little scary but at least the neuro would have a wider range of ideas.
The following month (November, 2019) we got to meet with the neurologist he thought everything looked good but ordered a basic genetics test to rule out a few things, that test came back perfect. With no leads our neuro then referred us to a physical therapist to get Axel's muscles moving (I'm assuming doc was assuming he just never built the appropriate muscles since he was always a little wobbly on his feet). Then we would return for a follow up in a few months.
The next month (December, 2019) we met the physical therapist! She was excited to be working with Axel but wanted him to get leg braces to make sure his ankles had enough support.
January 2020, we receive our leg braces (took about six weeks since they're made with a casting of his legs) and we continued with physical therapy weekly until about April 2020; The start of the 'rona plague. In the midst of our physical therapy appointments our PT comments about how he is still choking on liquids when he drinks, she says not a huge deal can just do a swallow test to get that checked out.
Conveniently we had a f'up with the insurance where they switched us to a plan his doctors don't accept. No big deal we can change it, right? Ok, WRONG. All the call centers in the whole damn world are shut down because of the dang 'rona! So we felt kind of stuck but also the therapy did not seem to be working the wonders everyone was expecting. However there was no need to panic because our checkup with the neurologist was coming up in a couple weeks.
At our phone call checkup with the neurologist (April, 2020- 'rona probs) I explained there was no major changes in the direction of good, if anything I felt as though he was walking less and using crawling as more of his way of transportation. Doc said he is sending us to get an MRI of his head and spine.
May 2020, we get the MRI done and again everything comes back perfect. Everyone is a little stumped but our neuro then refers us to genetic testing. Although we did minor testing back in November this test would just dig a little deeper, basically.
June 2020, we FINALLY get a hold of the genetics team and they can't get us in until the end of September?!?! What in the actual fuck. That's a whole three months away.
At this point he is not walking, he is not standing or wanting to put pressure on his feet, he crawls everywhere and has almost no balance while sitting or anything. He is having more trouble controlling where he is putting his hands (while eating, playing, pushing buttons, etc) His muscle control is very rapidly declining.
These are all things I've been trying to explain to his providers for now going on the last eight months and I am getting FRUSTRATED because no one is having a sense of urgency.
Not really knowing what to do waiting for September to get here I get in contact with a chiropractor who does amazing work with kids (Late June/Early July 2020). They are pretty sure they can get him some relief to make him more comfortable. They start scheduling our appointments with another family who has had their kids getting worked on for many years so Axel feels more comfy watching the other kids do what he is going to be doing. After talking with this family the mom sends me in the direction of Early Intervention saying how they helped so much with her kids when they were younger. I was like wtf is EI? Turns out it's a service that helps young kids with any therapies or assistance they need for literally anything. I wasn't totally sold on this idea but it was my only other option at this point. We loved visiting the chiro and think it may have helped Axel some, we did not get any physical results in the two-ish months we were going almost daily.
Mid-August 2020 after dealing with emails and phone calls getting him all set up in their program we had an appointment with a physical, feeding and developmental therapist for evaluations and to get a plan of action.
That plan of action pretty much flipped our world in a whole different direction.