Better Late Than Never

I need to ask for your forgiveness. This was supposed to go up Sunday  but I didn't take into account how tired I would be from Homecoming and that my exhaustion would make me not want to do anything besides watch Netflix and chill. Now I'm playing catch up on all my Sunday ToDo's. As you all know, I have Cerebral Palsy and as luck would have it, Sunday was World CP Day. I don't think I've ever really talked about it before other than a few slide-ins occasionally so I'm going to do some educating today. You may want something to take notes because things tend to get a little complicated but it's your call. Just know I tried to warn you!
​​My story is a little complicated than most so some bits are going to get skipped over. These are the key points. I was born very premature, as in my birthday should've been November of 2004 but instead it turned out to be August of 2004. That's a three month difference which is pretty big in terms of a baby's development. From there I was taken to Blank Children's Hospital in Des Moines where I stayed for 11 weeks (Hopefully if I get anything wrong, mom will tell me before too many of you read this). Besides a few minor things, everything was fairly "normal" for a little while. Flash forward to early 2005, there were things I wasn't doing/accomplishing that a baby my age should've been. I was primarily using my right hand over my left, my crawling was lagging a bit on my left side, and according to many, many, and I mean many recounts by family members, I hated to lay on my stomach. Like hated it as much as a person hates paying bills or eating vegetables. These are all defined signs of cerebral palsy. At that point, my parents decided it was probably time to pay the doctor a visit. I believe that I first went to Iowa City (Again, hopefully mom catches any historical errors on my part) which is where the diagnosis officially came from. There's a ton of ways to test for it but I was diagnosed with an MRI in December of 2005 at Mason City.
There are three types of cerebral palsy. Spastic, dyskinetic, and mixed presentation. I fall under the category of spastic hemiplegia cerebral palsy which means that my muscles are tighter and stiffer than an average person and one side is more affected than the other. In my case, it's the left side. I would like to note that I am almost 95% sure that's my official condition because I see similarities in both the hemiplegia and quadriplegia (all four limbs affected) categories of the condition and depending on the doctor, they'll say quadriplegia or hemiplegia.
No matter what your diagnosis is, there is always a course of treatment to follow that is designed by your doctor. They almost always change as the years go on, so mine has gone all over the place in fifteen years. After I became a patient at Gillette Children's Specialty Healthcare in St. Paul, MN www.gillettechildrens.org, I was fitted with AFO's which are braces that are molded to your leg and they're there to give more support because my ankles aren't very stable when I'm standing in "regular person form". I've also received botulinum toxin and phenol injections but those have stopped because the medicine that they use to loosen my muscles eventually stops working and slowly deteriorates my muscles. However, I still have to get shots that aren't typical. One of my surgeries was implanting a baclofen pump in my stomach. This releases medicine directly into my spinal cord via a wire to further help keep my leg and arm muscles loose. Like all things, the medicine, along with the pump battery, eventually runs out. This means that every six months (previously three due to the smaller size of my first pump), I head to Ames to get a needle jabbed in my stomach so they can refill the medication to prevent my alarm from going off because of low amounts of the baclofen. Fun fact: This has happened before. Ask my mom the story. Or better yet, ask Kenzie. If you recall, I also mentioned the pump battery runs out. Also not typical of other people, every 6-7 years, I have to go under the knife and get a new pump put in with a brand new battery. 2008 was when the first one went in, 2015 was when that one got replaced with a bigger one, and if my math is correct I'll be having another surgery in two-ish years to get another one. Besides surgery and scary shots, I do a ton of physical therapy to keep everything working the way it's supposed to and have yearly checkups with my orthopedic doctor and main cerebral palsy specialist to make sure I'm still the most basic disabled kid in existence.
The last thing I'll touch on is my surgical history. My first corrective surgery was in my legs. When a baby is born, their hips aren't fully in place inside the sockets. There's normally no need for worry because as they learn to walk, the hips will slide into place. However, we all know normal isn't a word in my vocabulary so by default mine had to be the stand-outs. Because I wasn't walking like other kids, instead of sliding in, they slid very slowly outward. To correct this, the doctor had to go in and break my hips, reposition them, and hold them in with plates and screws. The plates and screws were in for a year and then taken out. So far, there are no problems yet. At this point, it would shock me if something were to change but I guess you never know.
My last surgery most of you know about but here is the short version just in case. The muscles in my leg weren't growing with me which continuously restricted my ability to stand/walk. Adding onto that, my kneecaps were also slowly getting worse and they were shifting upward. In February 2016, I went in for my yearly appointment where my orthopedic doctor said that there was no putting it off any longer. If they didn't do anything in the next few months, my legs would deteriorate to the point where I would not be able to stand anymore. The initial time for the surgery was four-five hours after taking into account the time it would take to reconstruct, remove, and replace my kneecaps along with the time it would take to lengthen my muscles. Four-five hours eventually dragged into seven hours. The cause behind this dramatic change was my bone density. Bone density is basically your bone strength. When you walk constantly, your bone density gets stronger. Since I don't walk as much as normal people, mine was very weak. To keep everything like it should, the surgeons had to be extra careful. Hence, the time shift. Within a year or so, everything was properly healed and nothing has slid or contracted back into old positions in the last three years.
I think with that, we've covered everything. Granted, it took a few paragraphs but I think I got most of it down. Feel free to leave comments or questions and I'll do my very best to answer everything. Enjoy your week!
-Caroline:)
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