So my little girl who was initially said to be no more than a vegetable, danced in the Nutcracker this weekend! It was amazing, a very talented dance group that she belongs to. Wasatch Dance Center.
A big thanks to the Wasatch Dance group for putting on such an amazing performance!!!! Rya was great on stage!
I had a recent diagnosis of MS. The specialist wanted to attack it hard/fast, which sounded good to me. So she gave me 3 infusions, two regular ones and one that was “kick it in the butt” sort of infusion called Tysabri.
Well, it caused PML , which is causing other problems like amnesia, epilepsy, confusion and dizziness.
So now I’m walker bound at home and wheelchair bound when out and about.
I’m a pretty tough guy, not in that “quick to fight” sorta way. But just deal with problems with patience and try to see the whole picture and play the long game. But this is feels like getting T-boned by a semi.
The challenges of raising a little girl with a disability is starting to become less of our major challenge. You eventually hit a very comfortable routine: PT, psychologist, adaptive activities and it becomes predictable. Not easy. Just predictable.
We’re also challenged with blending families, financial challenges and general life issues.
But we’re happy and lead a wonderfully blessed life.
Here are some recent photos…
A new blended family photo.
Halloween for Rya and Sy.
Sy being very upset about picture day.
Our (almost daily) gorgeous sun rises.
Rya at her dance class (they’re doing the Nutcracker this year).
Zoe flyfishing with me, finally!
Sy’s final result of picture day.
And a gift from my dear wife.
When the doctor delivered Rya’s diagnosis back in 2009 I was distraught and confused and emotionally deflated. Through out those early years of not knowing if she would ever walk, I got through it by telling myself that the physical challenges are going to be easy. I always thought, “Wheelchairs would be fine, I just want her to be intellectually ok.” Time and again in my blog and conversations with doctors, friends, family and even strangers, I would say roughly that same sentence over and over.
Of course, when talking to neurologists they always said the odds are in her favor of living a normal life. And that phrase is so comforting yet SO loaded. I’d like to think I’m not dumb, in fact, most folks would say I’m pretty sharp. But now when I look back at every doctor’s visit where I was fed that phrase, I was relieved. But what *is* normal? What does that even mean?
Well, for a neurologist I can sort of answer that….now. It means, “Hey she might walk, she might not. She might talk, she might not. She might be intellectually normal and she might not.”
3 weeks ago we took Rya to see a psychologist to address some behavioral problems. We brought all of her IEP assessments, tests and most of her medical records.
We sit down with the doctor thinking we’re going to talk about coping skills, parenting techniques and her general behavior. And we do. But during every lull in conversation the doctor looks down at the paperwork and and remarks about her IQ and cognitive assessments. Me being me, I just try to stay focused on what I think is the issue…but eventually he matter-of-factly says, “With her IQ scores and cognitive tests, she’s never going to intellectually advance beyond 9-10 years of age.”
The air left the room. I had been sucker punched. I was oblivious to that possibility. I had worried about it for so long but hadn’t ever considered that possibility. I had always thought that the worse case scenario would be that she’d be mentally slow.
I couldn’t process his statement. I had this montage running in my head of every time a doctor told me “she will probably have a normal life…” I couldn’t process anything for about a full day afterwards either. It really wasn’t until 2-3 days later that I was able to think about it objectively.
In an effort to get healthier and just to get outside more, we’ve been doing some hikes and walks. Nothing fancy, just walks along the river and other fun places.
As you can see, the kids love it!
We also got the little ones some more Sunday clothes. Kids are now super stylin’!
We recently stopped using the day brace on Rya’s hand opting for some KT tape instead. And after about a month the results are ASTOUNDING! Her brace had some limitations: first it did nothing to extend her arm at the elbow, it also didn’t extend the thumb upwards/outwards (it just sort of created some space between her thumb and her index finger).
So I used several different tape methods to solve the above problems. Now her arm extends with no pain at the elbow, all her problem joints are experiencing less tone and she’s using her “magic arm” way more!! Plus she’s sooo proud of how easily her arm stretches that she shows everyone, such a cutie!!
And we graduated kindergarten!!!!!!
I love having Utah’s backcountry as my backyard, it takes me longer to suit up for flyfishing than it does to drive to the river. Rya goes skiing with the National Ability Center every Wednesday. Hiking in the most beautiful canyons is minutes away. And I still get 20mbs up and 20mbs down for internet, how awesome is that?!
Rya has all her braces and splints finally. Two wrist braces, one for day use and one for night-time usage. She also got a new leg brace, an AFO (ankle-foot orthotic).
She also got new glasses, she absolutely loves them. But I spent the better part of an hour fixing them, not even a week old.
Sy is still superhero-crazy, we’re super excited for May to come so we can go see Avengers: Age of Ultron! Here he is asleep, likely dreaming of smashing things like Hulk.