And nothing is certain! It’s life. It’s true. No one gets any guarantees and with Fibular Hemimelia, it’s even harder to predict what’s coming next.
It reminds me of the phrase “This, too, shall pass”. I sometimes remind myself and others that it applies to both the hard times and the easy. My last post “when nothing is certain, everything is possible” reminded me of “this, too, shall pass” because it also goes both ways. If everything is possible then everything you don’t want to happen is possible too!
Nicholas has had some foot pain on and off. We’ve known since his last leg lengthening and ankle reconstruction that his ankle would need further reconstruction. His heel obviously needs some work too. At Nick’s last visit with Dr. Standard his discrepancy was 6cm and Dr.S said we could start thinking about the next big surgery as early as next summer. In my head I thought, “no thanks let’s wait 2 years please, I’m not ready”. I likely did say that I hoped to wait 2 years. I am not shy about expressing my opinions on Nick’s course of treatment. I happen to think Dr. Standard likes it that way. We’re a team, along with several others but I feel like he and I make most of the choices. Steven has as much of a say as I do but I tend to be the one there having the conversations.
And yet my long term plans for Nick, lovingly called “the Mommy Plan” has to be revised or in reality it has been obliterated. Time for “the Standard Plan”, likely the plan all along in one form or another but thinking I had a plan and a good sense of the future served me well for quite a while!
Nick’s ankle and foot pain went from not so bad to so so bad. Nicholas as would not put any weight on his foot if he could avoid it. After a small bit of back and forth with the RIAO we just got in the car and headed down. When we arrived at the front desk I began to say “We don’t have an appointment. But we’re here to see Dr. Standards PA …”. I was delighted to be interrupted and hear “Nicholas Curley does have an apppointment with Dr. Standard”. Then my astonished response was “Right then thats what we’re here for”. So relieved! I had made some calls and not gotten a response but I felt this was an emergency. If a child even without Fibular Hemimelia, woke up unwilling to put weight on one of their feet, most parents would head to the er!
I didn’t think we would see Dr.Standard. I thought we would see Allison his PA, she would order x-rays, and bring them to Dr. Standard in the or. I know Tuesday is a big surgery day. I imagined her bringing them in and him looking over his shoulder like on Grey’s Anatomy, talking through his mask. There’s lots of time for imagination during the two hour drive to Baltimore.
I don’t know if tv like moments happened. As Nick and I hung out, just the two of us, in the children’s waiting room, Dr. Standard swept in with Allison. Relief! Even though I thought I was ok with him not seeing Nick I kind of wasn’t.
Thank goodness the x-rays did not reveal anything dramatic, no breaks and such. It seems the course of life of a so-so Fibular Hemimelia ankle is not altogether predictable. At the end of the summer Nicholas has a pretty significant growth spirt. He really filled out. He’s not chubby or anything he’s just tall and getting broad! Like his daddy! Taking after Steven while handsome and cute is great, tall and heavy is not making having Fibular Hemimelia any easier for Nick. His ankle might have been able to last a few more years as is if Nick were smaller but he’s 83lbs. It is what it is.
The current solution is a removable cast and then a shoe insert as soon as possible. The hope and plan is that the insert or, custom molded orthotic, will help and we can put off surgery. I thought the cast had taken care of things pretty well till this morning when Nick’s foot hurt even in the cast! I put some cotton In the bottom for extra cushion around his heel which was the current t problem area and that helped. Then I received a call from the school nurse. Nick was in pain and wanted to come home.
Me, four kids, one cast and a rainy morning heading into the elementary school office felt a like a lot. I think I am tired from yesterday. Nick on the other hand was so excited to go to school! The main reason being the elevator! His classroom is on the third floor. Way too many stairs for sure! We got to talk to the school nurse and she was so kind, really she always is, and very willing to help Nick be able to go to school safely. Have I mentioned that I love our school? I do.
I’ll have to write later about how we are evolving from the “Mommy Plan” to the “Standard Plan”. We may even have to take it a step further and consider the “Nicholas Plan”. He’s totally against having surgery during the summer. Who could blame him? Letting him have some control over this could really help him emotionally. Plus it is his leg and his foot therefor he may know better than all of us. After all everything is possible?