First Ever Instagram-Based Post

IMPORTANT UPDATE #1:  My sliver has healed itself.  From now on I am never, ever going to try to get a sliver out.  I kept an anti-bacterial oil on it and after 3 days the sliver is gone and you can't even tell it was there.  Miraculous sliver news.  I've always hated slivers, so that's why this newly learned information is very exciting to me. 

IMPORTANT UPDATE #2:  I can now use Instagram pictures in places other than Instagram.  This is why I'm posting two days in a row, because now I can share the pictures from Tuesday's Shriner's trip.  Which is actually nothing exciting because basically every Shriner's trip is the same.

When Daph needs new shoes we make a visit every other week for 8 weeks to get the shoes fitted and made.  This happens probably every 3 months.  Sometimes I feel like doctor's appointments rule our lives.

C trying to escape the tiny room.  Note the face of angst.

Looking out the window provides 30s of distraction

Sabrina is just fabulous to Daphne.  Daphne loves her and paints her pictures and looks forward to getting to go see her.  Sabrina lets Daphne draw on her shoe molds and even took us on a tour of their lab a few weeks ago.  There were a lot of legs and feet all over the place.  (Fake ones.)  This spring Sabrina did a presentation with Daphne and her crazy feet as the focus.  I wish we could have gone and given her a standing ovation. 

This week's visit was extra special, though, because the hospital had had a toy drive and each little patient got to choose a new toy at their visit.  Part of me feels badly when Daphne benefits from these types of events, because I guess I feel like the toys are for 'needy' children?  And D is hardly needy.  I mean, she feels like her life is pretty hard because she doesn't have her own tiny vacuum cleaner, but other than that she has everything she needs to make it through each day.

Then I think about how many hours she spends sitting in tiny doctor's offices and I'm thankful for those who donate to these drives so that she can have something fun to help make the hours fly faster. 

After Shriner's we went to The Spaghetti Factory for lunch because I had realized I haven't been there in 8 or 9 years.

We let the kids run along the riverfront for awhile in the hopes of getting some wiggles out before lunch.  It didn't really work.  Christian was a mess and ate his crayons.

David said, "We should come here sometime without the kids.  I think that would be more fun."

I do believe that he is correct.

Big Shoes

Today is the day we have waiting weeks for: Daphne's 'big shoes' are finally done.

To play a little catch up on dear Daph's feet, the doctor we've been seeing at Shriners is not sure what we should do or what even can be done right now to correct her feet.  Her club foot is not typical; she is missing her fibula bone in her lower leg (like Oscar Pistorius), which leads to some ankle issues.  Add to that some fusing of bones in her foot, and her possible missing heel bone, her feet are a mess.  So for now we're taking a wild route with these new prosthesis that use her foot in it's natural position of toes pointed down as her shin, and gives her a fake foot to walk on.

We got the trial ones made and Daphne did great practicing in them.  They were tall and clunky and hard to walk in, but she worked hard at wearing them around the house.  She loved using the walker and getting treats whenever she did a lap around the living room and through the hallway.  Bribes are good sometimes.  We also bought her first 'real' pair of shoes.  Sparkly blue ones in size 5 that fit her fake foot.

Her finished ones are much lighter and easier to maneuver in, but it was still pretty surprising to have her come home, try them on, and announce that we could put her walker away.  "I will walk all by me-self" she says. 

And so she does.

New Feet

We're in the midst of working on getting Daphne's new prostethics finished.  After a morning at Shriners yesterday, we brought home her rough draft pair to work on teaching her to walk.  They are several inches taller than they will be once they are finished, which is good because right now they make her freakishly tall.  Once she gets to learns to walk on these giant ones, the prosthetics will get tailored to fit her better.

Therapy to learn to walk with her new 'big shoes' (as she calls them) is challenging.  These prosthetics are heavy, so we have several exercises to do to help build Daph's thigh and knee strength.   We have to make time everyday to practice walking.  Finding the balance of encouraging her and helping her without frustrating or exhausting her is challenging.  It's a little rough, but she'll get it.




she found a marker, as you can see on her legs



 

After Shriners we made a stop to pick up this, something that only one person in the entire world will be interested to know:

 

So GAL, be ready for this sucker to be shipped to AK!

 



 



Oh Feet, Why Do You Give Us So Much Trouble?

We finally were able to discuss the results from Daphne's MRI today with her doctor at Shriners.

I wish the doctor could tell us exactly what we're supposed to do, but she can't.  Daphne's little feet have missing bones, fused bones, bones in the wrong places...it's crazy in there.

There is no "we will do this, and this will happen" formula.  It's more of a "we could do this and hope for this, or try that and hope for that, or add this, or take away this, or wait 5 years, or do something tomorrow."

I do not feel qualified to make these types of decisions. 

So for now we're taking the easiest route possible: a different type of brace that's actually, technically a prosthetic.  I can't even explain it it's so strange, so you'll just have to wait the 6 weeks for them to be finished to see.  This new prosthetic won't do anything as far as straightening her feet, they'll actually be more focused on giving her more of a 'foot' to walk on and relieving some of the stress on her knees and ankles that her regular KAFO's have caused.

I admit, it would be more fun if we didn't have to do this.