A part of me wondered if I should write this post – how many people really care about the nuts and bolts and ‘scripts and recommendations specific to my child? It feels a little bit narcissistic to go on and on about what our experiences are unless I can weave in a bit of comedy or a life lesson.
But on the other hand, I know many moms and dads out there who are wondering, like I once did, what the future will look like when their little one is older. On quite a few occasions, I’ve had people outside of CP World who told me “I never realized…” about this or that, and wanted to know more.
So this post is for all of you (anyone else who’s interested).
Sarah Kate met with a new neurologist on Monday afternoon. It’s been several years since we saw her first neuro, and she is 250 miles away in Birmingham, so we followed the recommendation of our pediatrician and hopped across the state line to Florida. Devotees will recall that we were referred due to The Little Caesar’s Incident, but since we were going we decided to hit her with all the recent highlights.
The good news is that this new doc is fabulous. She spent nearly a full hour with us, never once giving any indication that she had anything at all in the world to do other than learn about Sarah Kate. Following is the laundry list of topics we covered:
Reduced Sensitivity
There’s no doubt she has it, but she appears to also have a high pain threshold. There’s little that can be done and it doesn’t seem to be serious enough to worry any more than we are already worrying. She’ll need to be careful for the rest of her life in order to avoid injury, but we already knew that. Checking that box and moving along, thankful that the injury that brought us to her wasn’t worse.
Tight Hamstrings (and Other Things)
Everything from her hips down is tight, has always been tight, and will always be tight. That’s a fact. But the hamstrings are the main culprit causing problems right now. The neuro wants to try Botox one more time, but she wants to see what the rehab doctor says next month. I don’t have high hopes since she’s had it several times and the last time didn’t seem to help that much, but the last time she also wasn’t struggling as much as she is now – even a little bit of something is better than nothing, right? The good news is that it’s a simple (I wish could say painless, but alas, it’s very painful) procedure so if it doesn’t do anything the only thing we’re out is a doctor visit and five minutes of tears.
Growth Spurts, Puberty, Etc.
It’s no secret that the next few years are going to be rough. The doctor had a couple of simple suggestions that might help – drinking lots of water and taking a multivitamin (feel free to recommend vitamin supplements unless you want to sell me something or you believe I caused my child’s cerebral palsy, in which case I will block you 🙂 – I’ve been down both roads with commenters already).
The Other Stuff
Braces serve a purpose. She’s worn them for almost ten years with mostly good results – until recently. The past couple of years it’s been a struggle to get them to fit her well, and braces are no panacea even when when they work well. I’m not placing blame – it could be the orthotist, it could be the company making the braces, it could be Sarah Kate’s freakishly narrow Rapunzel-from-Tangled feet, or some combination of the above.
A little detour…Sarah Kate’s feet in the top photo, Rapunzel’s from Tangled in the bottom. IDENTICAL.
But back to the braces… our first step is to try a new orthotist (mostly because that’s the easiest step to try because there’s a place right down the street and the one we’ve been using is across the bay in Mobile).
But even if she gets a well-fitting pair of braces, the fact remains that they’re made of plastic and foam, the humidity in our neck of the woods is subtropical, and the temperatures here range from warm to hot most of the time. Warm, humid air + plastic and foam + tween feet = yuck, so in addition to a new orthotist, she’ll be taking a turn with a podiatrist to treat some new plantar warts and other lovelies.
So that’s it: no humor, no life lessons, no drama or inspiration, just a peek into the kinds of things Sarah Kate is facing right now. I hope it was helpful to some of you and interesting to a few others. Any questions? Ask me anything.
I hope you and Mr. Andi have been sizing baseball bats and 2×4’s. That’s one pretty daughter you have and it won’t be long before the boys are beating a path to your house.
I would just offer the suggestion to talk to your physical therapist about these things as well. One lesson that I’ve learned with my medical issues is that my PT often has the most common sense approach or ideas that frequently make my life easier in combination with my doctors’ recommendation.
Thanks, Beth! Sarah Kate’s PT probably has read this post already, LOL! She follows the blog, as does one of her former therapists (we live too far away from her to see her now). Over the years we have probably relied more on the PT’s opinion than the doctors would be comfortable with. 🙂
I am by no means an expert, but when I talked to our developmental pediatrician about vitamins , he pretty much said any multi w/ iron was good, even a generic.
Thanks, Jenny! We bought some Target store brand multis with omega-3 and also a calcium/vitamin D. Both are gummies. 🙂
Great! I probably need to look for some with Omega’s in them. I tried the oils…EWWW! No wonder my boys wouldn’t take them. YUCK!
The gummies aren’t delicious, but…they at least don’t taste like fish!
Thank you (and Sarah Kate) for sharing. She is an amazing kid and I am betting she will meet these challenges with grace and determination.