New AFOS and Hyposthesis

Last week, Ellie had an orthotics appointment at the hospital in Dallas so I loaded up both kids & headed to the big city.
I had planned on making a quick run through the world aquarium...
I had not planned on a line out the door and down the block.
I forgot it was spring break.
So instead we headed to one of our favorite parks from when we were living there for three months after Ellie's birth.
Of course, it was packed with kids.
But my kiddos got some fresh air and time to play before hospital world.

Ellie's appointment was long.  Like almost three hours.
I don't know why but I ALWAYS seem to think it will be a quick appointment.
And I'm ALWAYS surprised when we end up there all day or we suddenly have to get xrays or blood work or any number of additional things.
My friend Claire laughed with me at the absurdity that after 4.5 years of doing this - and double (or triple) the appointments now that two kids have medical conditions - one would think I would know to plan for extra time.
But I don't.
I guess I'm super optimistic and I just keep thinking this will be the time they let me go after 20 minutes.
Not so last week.  Not so.

Sweet Ellie - began not feeling well and that combined with her major separation anxiety and the fact that the appointment ran 2 hours into nap time... 
she cried.  A lot.

She got her first pair of orthotic AFOs.  They have purple straps.  I'm not a fan of purple but pink wasn't an option.  And she's not so much a red or blue kind of girl.
So purple.  The straps are big.  
I'll get over it.

They also have hardware which is new for us.

And these little cotton pads that supposedly I should be able to keep clean and white for the next few months.  Considering my girl likes rolling down grassy hills and we play outside a lot, I'm not sure how well I will do that.

They also have butterflies on them.  I was very indecisive (surprising, I know) on the design.  Unlike Will's prosthetics, we didn't get to bring in our own design to be put onto the AFOs.  We had to choose from their limited selection.  Claire helped me make the final call which is good because I had changed my mind twice already.
(We love butterflies but this is kind of an odd butterfly print.)
(I'll get over these hangups someday hopefully.)

Finally, we headed to Claire's for naps.  The kids only got an hour nap but the both did well.
Will crashed on her living room floor.  I love that I can tell this kid to go to sleep and he just does.

Claire got to experience the magic and wonder that is cuddling with Will when he wakes up.  It's my favorite time of day.  
And sweet Ellie girl.  She was not feeling well at all by this point and was exhausted and had decided she was terrified of her inflatable crib.  So I managed to get her to crash on me.
After short naps, we headed to Nordstrom's for Ellie's first pair of real shoes.

(The saleslady was great.  But she did crack us up trying to sell me some pair of fancy water sandals.  Apparently it is wonderful to have a pair of shoes that can get wet.  Except I couldn't understand why I would want sandals that can get wet if the AFOs & socks on underneath them can't. ) 

 Will did great and was patiently admiring shoes while we tried to find something to fit the AFOs.
 We had a yummy dinner with Claire and then I changed the kids into pjs and headed home.  We got home at 10:30.  I'm thankful for good little travelers and for Claire who really helped me with Will a ton. 

For some reason, I have really been struggling since Ellie's appointment.  
I'm not sure why.
Maybe because I'm resistant to change and we've now changed from the taping & splinting method to the orthotic method.  
(I've known all along this was the plan - we just are doing it earlier than expected.)
Maybe the splints always felt temporary to me... and the orthotics don't.  Likely, Ellie will need orthotics for a very long time - years and years.  Perhaps for life.
I think shoe shopping was hard because I guess I fantasize about what buying shoes with my daughter should be like and the reality is that there aren't a lot of options (especially cute ones) for her that will fit on her orthotics.  This is ridiculous because I'm not a shoe person at all.  But I guess being told that I can't do most of the shoes is what makes it hard.  Like sometimes you don't know you are missing something until it is denied to you- and then you want it that much more.  Silly, I know.
There was a super cute pair of tennis shoes.  But they would have been a safety hazard in order to get them on her orthotics and I was so thankful for Claire - with her medical expertise - who was able to offer logic and compassion.  I was so frustrated that we had to stick with the chunky medical grade tennis shoes.  But my priority is that my daughter be safe and learn to walk.
Which is another thing I'm struggling with.
I so so so so want her to be able to walk.  I so want her to be able to get into a sitting position independently.  I want her to be able to scoot backwards so she can get herself unstuck.  I want her to be able to get to a sit when she falls down.
I want her to be able to walk.
And as much as these orthotics make me sad because I continue to have a daughter whose legs are covered up by hard plastic, I'm so thankful for the opportunity and promise and sense of hope they give me.  
  In some ways, I could resent the need for prosthetics or orthotics in our lives.  But I don't really see them as binding or limiting.  To me - they release us from limits.  They free us.  They give me hope.
Hope wrapped up in distorted butterflies and bright wide purple velcro straps.
She tried out a new walker in therapy today.  It's bright yellow.  
I want my girl to walk and I will be throwing a party the day she does it.
In her cute big tennis shoes or her brand new beautiful little sandals.
Perhaps that is my struggle.  That I have to hope for these things.  It's selfish of me, I realize, and I know that our victories are so much sweeter.  I'm just struggling with these hard plastic things on her legs I suppose.

And I want my boy to be able to ride his bike.  He is trying so hard.  I noticed today that the other four kids on our street are now all riding without training wheels.  Any adult would look at Will and be amazed - I mean the kid is trying to ride a bike while wearing prosthetics on both legs and hands.  So he gets no sensory from his hands and feet on the pedals or handlebars.  And he is dependent on pieces of rubber to grip the bars and steer - not his own hands - which is scary and incredibly difficult.  I so so so admire him.  And adult would see those challenges and know he is working so hard to keep up and overcome them.  
But kids will just see training wheels.  The children on our street are very sensitive so I'm not worried about them... I'm worried about Will noticing that he is the only one on training wheels.  He doesn't see himself as having extra challenges.  We don't present things like that to him.  It just it what it is.  This is our normal.  I just worry about the day when he realizes he is the only one still on training wheels and I really wish that bike riding wasn't such a challenge.  I wish that some of these regular kid kind of things would just come easy to him.  
And to Ellie, for that matter.

I guess its just been a weird week for me.  On the one hand, I'm laughing and amazed at how she rolls down hills so fast and with such joy.  And then I watch her work so hard to practice walking and I see these new hard orthotics on her legs and I want mobility for her.  I tell myself that as proficient as she is at rolling and scooting, the adult Ellie would want me to push her towards walking - whether that is independent or with a walker.  And so we keep pushing.  
(And finding moments to laugh and roll down hills when appropriate.)

On a really wonderful, happy, can't believe it, it's probably too good to be true note - Ellie is bathing every single day.  And she loves bath time.
Why is this a big deal?
For a little while at least, we are free from tape!
It's amazing how much faster our bedtime routine is!
It's possible the doctor will change his mind and require her to be taped again so we'll see what he says when we go see him in a month or so. 
But for now, I'm not taping.
(I'm nervous that this is too good to be true - she has been slipping out of the orthotics some.)
I so hope we can keep her out of tape at least through the summer - it would allow us to swim spontaneously and would make beach trips much easier.
For now, yahoo!!
I love being able to bathe her and not hiding the fact that Will is getting a bath - that really used to hurt her feelings on nights when she didn't get a bath because I didn't have time to tape. (Taping had to be done every 48 hrs)

On another totally unrelated note, Will slept until 9:45 yesterday morning!  Apparently, he is 4 going on 14!
Rip Van Winkle came out of his room wearing a Santa hat.  I have no idea why.

Also, he used the word hypothesis in a sentence today.
My 4 year old randomly mentioned to me that he had a "hypothesis about pollution in our pond, Mommy.  I hypothesize that it is caused by bad cars."

He's four.

He also used the word hilarious correctly.

And now I will begin carrying around a dictionary.

4 thoughts:

pedidoc said...

You should check out a 'strider bike.' He can learn the balance and steering first and then graduate to pedals when he is ready. In our neighborhood there was no stigma attached from the other kids because they respect lack of training wheels and don't really seem to care about pedals.

ywilbur said...

Kharan is trying to ride without training wheels too! Sadly the kids on my street are not very nice and tease him...well no that is not true they are just typical competitive 6-9 year olds who say 'you can't ride without training wheels! I did that when I was 2' (a bit of exaggeration I know because I knew them when they were 2. Not going well as Kharan leans to short arm side too much and has no concept of balance. Local children's hospital has a bike clinic coming in June to teach kids with physical disabilities how to ride. Maybe you could search for one of those. Camp No Limits will help with that too if you can go to one of thier camps.

Miles said...

I second the strider/balance bike comment. We got Miles and Max these a month ago and they LOVE them. miles is 5 and still in training wheels so we hoped this might help his balance and confidence on a bike.

Katie - a Blessed Mommy! said...

Thanks y'all! We actually have a strider/balance bike. Will got it for his 2nd bday from his grandparents. He loves that it is a pirate bike.
Unfortunately - it is incredibly difficult to ride in prosthetic legs and prosthetic bike hand/gloves. He had a very hard time maintaining his balance which is saying a lot because the fact that he can balance his body weight +carrying an item while walking/running without feet is quite amazing.
But the bike was very hard for him and frustrating and kind of scary, actually.
Once we put him on a regular bike with training wheels, he did much, much better. He is doing really well - especially considering his limb differences - he just has a lot of challenges to deal with.
Thanks for the advice.

ps- we are going to a camp in April for kids with limb differences so I will bring up the bike issue - thanks!

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