We’re ready to hit the road again!
Impossible decisions. Parents of a special needs child are faced with more than their fair share of them.
Medications with horrible side effects that may not work, risky surgeries with uncertain outcomes, expensive alternative therapies on the quest to find answers for their child – these are just a few examples.
We’re facing an impossible decision right now. It’s not something I talk about much because over the years I’ve learned that the only way I can control how much energy these kinds of challenges suck from our life is by giving them as little oxygen as possible. We do what we need to do, talk to who we need to talk to and keep moving forward. A recent conversation with a mom facing her impossible decision changed my perspective a little. Maybe if I share our current impossible decision, someone else might feel stronger in theirs.
Among many challenges, my daughter was born with a hip socket that’s not quite as deep as it should be. Over the years the combination of this and her vacillating tone have caused severe scoliosis and a sublexed hip, a hip that’s partly out of the socket. Her tone is hard to describe, but essentially her body become very stiff when she hurts, it’s like her entire body is doing isometrics, but not symmetrically. The muscles on one side push in one way and on the other side another way, putting a lot of pressure on her bones. She has biceps like Popeye, abs of steel, and bones that are changing as they bear the brunt of this condition. Dealing with that tone has it’s own set of impossible decisions; it doesn’t respond to medications or therapies in a consistent way, and then if she’s sick or has pain anywhere, it shifts to high gear and you can almost feel the damage being done as you hold her. It’s heart breaking.
After an episode of extreme pain from an injury, Veronica’s sublexed hip was pushed out of the socket by high tone that initially couldn’t even be managed by hospitalization. She was so fragile that surgical intervention was impossible. Eventually we were able to develop a plan that allowed her to be home, but she required 24/7 hands on care, steroid shots, pain medications and therapies. Her hip was so bad she couldn’t sit, which included her wheelchair and car seat so she couldn’t leave the house. Amazing therapists agreed to home visits. It took 5 months for her to recover, but her hip did find a happy place. Then I was able to start my own recovery. This stuff takes a lot out of a mom – and family!
I think Veronica is always in some degree of pain, but that girl is so tough! Her hip had been in a generally happy place for a couple of years, until a few months ago when it started causing her pain again. We went into our pain management and therapy mode, but the pain was progressing. The ball of her hip had repositioned.
A visit with her orthopedist and rehab doctors revealed very few options:
- Hip replacement was not an option because of her muscle condition (I’m not done with that conversation – I’ve got more research to do!)
- The surgeon could “lop off” the ball of her femur and create support for her hip with her muscles (um, what?!?! No thank you!)
- We could keep just giving her meds for the pain, which have been ineffective thus far.
Great options, right? None of these is a certain path to improve my daughter’s quality of life long term. I want to see my girl happy again. I want her to get out and live life, not just be stuck in an endless cycle of managing pain. I long to move outside of these walls that hold my sweet girl back. I would do anything.
I asked about treatments I’d read about, but they weren’t treatments the ortho had done before. So I added option 4 and requested a cortisone injection in her hip, the ortho pessimistically agreed.
She’s got the eye of the tiger, a fighter, dancing through the fire
‘Cause she is a champion and you’re gonna hear her roar loader than a lion.
Veronica had the procedure two days ago and handled it like a pro. She’s been through these things many times before and is kind of fearless, enjoying Katie Perry’s “Roar” while waiting in pre-op, charming the nurses as they wheel her in. Today her body is relaxed and I’m seeing more smiles than I’ve seen in weeks. She’s back to her giggly, adventurous self, and I’m back to planning fun outings with a happy heart. The cortisone may not be a long-term answer to this impossible decision, but it’s one I’m happy to live with for now.
16 Comments
Hi- I found your blog while researching for my own- another blog about traveling with a special needs child. I love all this info so thank you! We use medical marijuana to treat my sons epilepsy and i just wanted to share that almost all of the families who use it have felt that they felt their children’s tone was improved with the use of MM. I have a super hypotonic guy and the meds to control his epilepsy make him so limp, so when we tried MM i was happy to see that he is just little more coordinated on it, a little less floppy (he still can’t sit up, but its one of those things as a mom you can tell about your kid) Anyhow, I’ve read that families of kids with mixed tones and high tone do really well with MM. the formula we give does not make him stoned, in fact it has no active THC in it. Don’t know if you live anywhere where this is even a possibility but I’d be happy to talk with you more about it if it is. Best wishes!
Karin, I totally relate to your struggles right now. I stumbled upon your blog looking for tips to travel to Maine from Philly this summer, and have found myself engrossed in your family’s journeys! Thank you for sharing, helps us all feel supported and relatable. 🙂 sending prayers for happiness, health, comfort, and smiles for your sweet V. (And you and your family, too)!
Awww, thanks Mary! Blessings to you – and have a fun road trip!
Oh, I’m sorry. That absolutely sucks. I read your blog to gain insight from another parent who travels with a child like my daughter. For me, writing about these things is therapeutic, and I enjoy the open tone it sets with those around us. So I feel giving our bad situations oxygen has been positive. Good luck.
Thanks Matt! Sometimes it just feels like we’re consumed by medical and therapies, so much so that it saturates every conversation and I try to find some way to control the uncontrollable. I will be sharing more in the future. Best wishes to you and your family!
please share with us more often-I don’t know if you realize how much we love you and V-this brought me to tears-I don’t ever want to think you are dealing with such incredible issues and we can’t support you-a prayer-a funny story-distraction-ideas-listening ears-whatever you need
Love you KM! Love seeing your pics of Dubai – it’s like a virtual vacay. 😉
You are so brave, Karen, with the decisions and struggles you face on a daily basis. V looks so beautiful with her big smile, and I am glad the cortisone worked! Big hugs for all of you!
Thanks Julie! Her smile is the BEST, right?
This kid has got a spirit that can’t be stopped. I know it’s hard on all of you to go through this – okay, I think I know, but honestly I couldn’t even begin to fathom. What I do know is that all four of you are amazing people that I’m beyond lucky to know. Take care of you too. Xoxo
I’m glad you guys are having a break from the pain situation.
Much Love,
Rocio
Thanks Rocio – seeing V happy and smiling makes me feel like I can do anything!
Karin…those are hard choices! I really hope the cortisone works long enough for you and Todd to find the right choice for V. Love ya girl!
Thanks Laura!
I am so happy that there is peace, at least for now. Thanks for sharing your struggles.
Thanks Jessica!