I am defeated.
After several weeks of watching Sarah Kate struggle with one of the worst growth spurts she’s faced, I began to wonder if the orthopedist was wrong and we couldn’t afford to wait two more years to consider surgery. She couldn’t stand for softball practice, and her “crouch” was highly pronounced. It was hard to watch.
But things started to look up last week.
At Monday night’s game, she looked better. On Tuesday, I asked her if she’d like to try a fun run on Saturday, and she said yes. We made a friendly wager – could she finish the fun run quicker than I could finish the 5K? – and the stakes were Sunday morning breakfast in bed. I set a personal record and got first place in my age group, but she was faster. I felt that the bad stuff – at least this spell of bad stuff – was behind us.
I was wrong. So wrong.
Not quite two weeks ago, my mom and stepdad were in town for one night. I had a meeting over in Mobile, so they and Mr. Andi decided on Little Caesar’s pizza for dinner. Sarah Kate had religious ed, so it was decided that my stepdad would pick her up at church, then grab the pizza on the way home.
Little Caesar’s is a mile-ish from our house, and he had Sarah Kate hold the pizza box in her lap for the ride home. When they got here, one spot on her leg where the box was touching her bare skin was red and formed a sorta-big blister. It’s been slowly improving, but over the past few days the wound started to worry me. Most of it looked much better, but the center … didn’t. I’ll spare you the details, mostly because I’m trying not to recall the picture in my mind.
At therapy on Monday afternoon, Sarah Kate’s therapist looked at it and encouraged me to go to the doctor (always listen to your gut, mommas – I was thinking doctor last week but didn’t go). Then she began to talk to us about a complication of cerebral palsy that we’ve never experienced before.
Diminished sense of touch.
Off we went to the urgent care. Again, I’ll spare you the details, but feel free to Google “burn debridement” if you want. Basically, the tissue at the center of the burn would never have healed on its own, so it had to be removed. We go back Thursday; it may have to be repeated then.
Inside, my head and my heart are screaming in frustration. Why did my stepdad think it was a good idea to let her hold the pizza box on her lap? Why didn’t I take her to the doctor sooner? If I had taken her sooner, is there a chance she could have avoided scarring? Why couldn’t she feel her leg burning?
Only one of those questions has an answer.
Of all the potential risks and problems associated with cerebral palsy, no one ever told me that my daughter might not be able to feel heat or pain like I do. Sure, there was a warning before the rhizotomy about potential loss of sensation, but there’s been no sign of it in the 7+ years since she had the surgery. From what little I’ve read since leaving the doctor’s office, this issue is probably a result of the cerebral palsy, not the rhizotomy, anyway.
How often have I been proud of how “tough” my daughter is, when in reality she just wasn’t getting the right signals from her brain?
And on the rare instances that she does complain of pain in her legs, is it much worse than I imagine?
So today I am defeated, because my daughter has been harmed, will be scarred, and – more importantly – because now I know that she is at risk of future harm because she may not react appropriately when danger is present. She’s been lucky so far, but fractures, burns, and serious cuts could be on the horizon.
Andi just getting to know you through your dad, FB page and now your blog. You most certainly have been gifted by God with an extraordinary family and I don’t mean extra-ordinary I mean wonderfully Blessed with a great family! You are an inspiration! Praying for your sweet family.
Andi, we are praying for you and Sarah Kate. This issue does sound serious,we deal with something similar with autism, that question of is he being tough or just not noticing? Trust your gut is good advice! Hang in there
Julie
That must be SO worrying for you! I know the knowledge is terrifying… but it is probably still better to know? Your daughter is bright and from what you have shared about her she seems to have maturity and common-sense. I am sure that together you will learn additional ways of helping her recognise dangers when the signals through her nerves let her down, without crushing her spirit and determination to participate. I have part of one foot that has similarly decreased sensitivity after spinal surgery, and I have learnt to take special care with visually checking regularly that I don’t have any sores there that might get infected without me noticing, as they might if I relied solely upon my nervous system. I know that is of course nothing in comparison to her whole body being affected, but I just wanted to share that it is the mental awareness of the issue that really helps me with preventing physical problems developing. I’m so sorry that Sarah Kate was harmed, and I pray that she heals fully really quickly, and that your whole family will know God’s peace as you come to terms with this new development.
It is definitely better to know, and of course it could have been much, much worse. Although the injury is severe, it’s small. The point you made about checking for sores in interesting – since this happened, I’ve been thinking about a sore place she had on her heel at the beginning of this year. I hesitated to take her to the doctor initially because she said it didn’t hurt, so I assumed it was okay … until she woke up one day and it looked like raw hamburger meat.
Sounds like the same thing with her heel doesn’t it… For me, even little things can help prevent problems, like always drying my feet really well around each toe after a morning shower – if I don’t, I can so quickly develop a sore because of the softened damp skin, that I would notice rapidly on my normal foot because it would hurt, but which would get worse inside my shoe all day without me being any the wiser on my less sensitive foot, and which I would then discover split open and raw in the evening… I guess you and Sarah Kate will have to watch the unprotected areas because they are vulnerable, and the protected areas because problems can develop out of sight(!)
Aw crap, that sounds really scary 🙁
But people do learn to live with diminished sensitivity, and she’ll just have to learn to be extra careful. Hope she heals quickly.
Part of me is highly frustrated with this and part of me feels deep sympathy. I’ll keep it short and sweet.
Why blame the grandpa?
He has no idea she’s not feeling the heat on her leg and that only makes him feel so much worse thinking that he should have known.
Why blame yourself?
You’re a momma that has been through a LOT medically with your kid. You didn’t know, now you do. But blaming yourself is counterproductive because guilt is only goingto make you feel worse. And you are not to blame.
Yes, she had to go through pain, doctors, debridement. It’s OK. It was a learning experience. Now you know something to watch out for in the future. All a part of this jounrey we call life. You’re doing a great job. Have grace with yourself.
I’m not mad at grandpa. 🙂 And honestly, I’m not all that mad at myself, either. Mostly I’m just frustrated because none of us saw this coming, and because there was nothing along the way to tip us off to the problem.
I’m sorry, what a rough week 🙁
Hang in there.
Boo. I’m so sorry this is happening!
Wow Andi, I am so sorry to hear about Sarah Kate, what a freak accident! When my daughter, ,who has hemiplegia, was an infant, she had a hair tourniquet around one of her toes on her affected leg. I saw redness, but it wasn’t until a full week later that I fully realized what was happening…her toe was practically self-amputating. We had the hair removed in the emergency room, and she ended up healing. Everyone was mystified why she wasn’t screaming in pain the whole time. She was diagnosed with CP shortly after that incident. Thank you for posting this, I was always suspicious if the two events were related.
Thanks for sharing your story, Kate. Sarah Kate’s PT told me that the diminished sensitivity could be related to the CP itself, but I was thinking it was probably due to the selective dorsal rhizotomy (SDR) that she had. Your story makes me rethink that, because obviously your daughter had not had an SDR.
Thats a scary situation! Maybe since Sarah Kate is getting older, she can at least learn to pay attention to the visual signs of danger, like letting you know whenever she falls or bumps her head or anything, even if it doesn’t physically hurt her, so you can check it out.
Wow I am sorry i hope she gets better soon. I also have a hard time feeling things in my mouth , wear CP is most affected. Hang in there Sara Kate