I've mentioned in my old blog about some struggles we've been having with our little girl's mobility. Along with her waking often at night (she has a short spell where she didn't). She has a difficult time walking. At 2 years old (in a few weeks) she can't run, jump, climb or stand up on her toes.
We've seen multiple providers, specials shoes, heel wedges, orthos, swim lessons and gymnastics all in effort to help with balance, strengthen her legs and ankles much to no avail.
My parents have been huge supporters in my need/desire as F's mother to find someone or something to help her. No one has given us a concrete diagnosis other than her having flat feet and floppy ankles. Just a bunch of try this, wait until she's in grade school and see how things are. Well that doesn't work for me. My parents who see her daily agreed that waiting just wasn't an option. F already acknowledges she has boo boos on her feet. She often has huge blisters no matter what shoe, sock brand we use. Whether it's stride rite, clarks or generic shoes, they hurt her. She fatigues easily and asks to be carried. Waiting just means more discomfort, more time to develop an unhealthy walking pattern.
Until today. After almost a year of pushing and pushing, talking to doctors, providers, talking to my mom's prosthetic provider, we finally go in to see a new orthopaedic at Erlanger who immediately referred us (same day appointment) to the Siskin hospital for physical rehabilitation. I don't think I cried such tears of relief. Finally answers, a firm concrete plan of action.....A DIAGNOSIS!! A name... Words that explain. Having those words mean we can move forward. Also the infuriating pain I have thinking what if I hadn't pushed? What if I didn't have supportive parents who agreed that something needs to be done And I wasn't imagining she was hurting? Where would F be in 4 years when she reaches an age where the medical world we were in tune with cared? An angel by the name of Dr. Z changed the what ifs!!
Granted the prognosis isn't any better. In fact its worse than we thought but hell if this is our "battle" we will take it. There are far worse medical issues we could have been facing.
Dr Z upon just looking at F and touching her quickly came to her diagnosis. Swiftly sending us off for joint and ligament studies, nerve conduction studies and another consult. She too felt as we had that we shouldn't wait, let's act now so that we can prevent any further hardship to F.
She has something simple to some but significant to a toddler trying to learn mobility, significant to someone who wants to lead and active life. It will affect her forever. No cure just simple preventative measures to protect her joints.
She has Ligamentous dyslaxity, hypermobility in all of her joints and some pain/discomfort issues. It means all the ligaments that hold her joints in place (shoulders, knees, elbows, ankles etc) are all extremely long and loose. It causes her joints to click, bend backwards and hyper extend. In a growing toddler that means ankles that roll and knees that give out (she hasn't had any knee issues) when trying to learn how to be mobile. Her body is working twice as hard to walk and do things as the average child which tires her quickly, causes some joint pain she most likely won't sleep through the night for years due to the joint pain and fatigue Sadly, there isn't anything we can do for all of her joints other than be cautious. Knee braces if she wants to participate in certain activities, no contact sports such as soccer due to a huge risk for joint injuries. She was casted and fitted today for new orthotics. This particular set will go up to her knees. Far more extreme than we were accustomed to but hey, whatever we need for her we do it. No questions asked, move forward and teach her, her new norm.
We were advised to keep her in gymnastics, get her in a dance class. Put her in activities that she can excel at and love. The plus side of this condition is that she is hyper flexible. Which means if she loves dance or gymnastics, she has a little edge due to her ability to bend and flex in ways most people can never dream of. If she doesn't like gymnastics or dance then we buy her a clarinet or drum set, a camera or pot and pan set whatever it is she wants to participate in. Extracurricular activities are a must. She will find her niche. If she's anything like her grandma whom she already shadows, F will be an amazing dancer (she already has mad carseat dancing skillz aha).
As far as bravery, my not quite two year old was amazing!! It's like she somehow knew that everything she was enduring today was to help her. It was a long day. We left our home at 8:45am and didn't get back until 6:15pm. It was a full days work for her. Being poked, prodded, twisted, forced to walk and flex. Having to lie down still for awhile, sit and have both legs casted. She laughed, smiled, and was silly through it all. Telling mommy and daddy that it's alright, no ouch and she's sleepy so she was just going to lie down while they did things. She repeated to us everything they were doing to her (they sweetly talked her through it all so there weren't any surprises for her). I don't think I could ever love my brave girl anymore than I do. As I was nervous for her, she consoled me by sharing her lovey or being silly. Just an amazing child. I'm so thankful my husband is here with us through it.
Today (since it's already 1am) is going to be a F day!!!! All about her just fun with mommy and daddy! Her big 2nd birthday party is next weekend so there is a lot up get to still.
Oh duh!!! Did I mention she picked out her own leg braces?? She had to absolutely have the purple butterfly orthotics. Such a girl!
Here is my brave girl
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