Courage

He inspires me with his courage.

Courage doesn't mean holding back the tears. Courage is telling mommy and a room full of compassionate pediatric nurses and a child life specialist that you don't want to do something hard & scary at all. But saying it politely.

Courage is doing it anyway. Courage is accepting at age 4 that sometimes you have to things you don't want to do.

Asleep at last in my arms, I sit in the dark and listen to his breathing. I hear a mama in the next room.

She is singing twinkle twinkle little star. And I'm sure she sees courage in her child too.

I don't know her. I can't see her. But sometimes, us mamas who know specialists and nurses by their first names, who know drugs and testing by their acronyms, who google medical journals while our children rest at last, we know courage. We look at big, trusting eyes and we hug sweet little arms, and we close our eyes tight against the pain and we wipe the tears and kiss the faces of courage every day.
Oh yes. He is one courageous little boy.

Just Things

I'm planning a catch up post soon - I know I've mentioned several topics recently (like the first ARD) and I plan to let you know how those events /people are doing soon!

In the meantime... a few thoughts

1. Recently, after dropping Will off at school, I grabbed a friend and her two kids and we headed to Canton - a massive (28 sq miles) flea market.  We spent about an hour and a half there before heading home for nap time.  It was so fun to be outside on a pretty day, hang out with a friend and talk, and just escape time for a little while (without escaping town to go to a doctor.) 

•  Ellie makes lots of different expressions on command:  mad face, silly face, crazy, happy face, etc.  This is her excited face and she does it at dinner a lot.  Cracks us up.

• Will is almost always in costume.  He loves to play dress up and I love his imagination.  He carries on conversations in character and insists on being called by his character name.  I love it.  Lately, I've begun an ambitious project of trying to take a photo of every costume/character her portrays within a week's time.  I've missed a couple here and there but have captured a lot of them.  I'll be posting soon.
• Will has been "ministering" to a little kid who is often mean to him.  He amazes us with his perseverance and his attempts to "chase the mean out of his heart."  Today, I observed him evangelizing to his baby sister.  He asked Ellie if she wanted him to tell her about Jesus after nap time.  She nodded yes.  So he said, "Well, Ellie.  Jesus died on the cross for us."  And then they shared some rainy day popcorn.
• Will:  "Mommy, Sarah, who is a 6 year old, told me that because my hands don't look like everyone else's, I won't be able to get a wife."

        Me:  (attempting to not rage in anger at this mysterious Sarah chick)  "She said what?"  "Well.  You should tell hear about Mr. ____ (our friend far away who takes time from his busy schedule to skype monthly with Will... and has Will's same medical condition and hands just like Will... and also has multiple degrees and four kids and a WIFE!)    How thankful I was to be able to pull out that concrete example for Will - someone Will admires and likes.

Will:  But are both of his hands like mine?"

Me:  "Yes, both of his hands are different.  And he has a wife. And kids.  You just tell little Sarah that you most definitely will have a wife and any girl would be LUCKY to have you.  LUCKY."

Will:  "Mommy, when I get married in Africa, will you come?  Hmmmm... I guess I'll drive my car over there and my wife can drive her car to our wedding.  We'll take both our cars."  (Glad he is figuring out those logistics now.  Perhaps we should work on geography.)

Will:  "Mommy, I want to marry you but what will we do about Daddy.  He might get mad and not want to play wrestle mania with me anymore if I marry you!"  

Me:  "Don't worry, love.  He will still play wrestlemania with you.  What kind of girl do you want to marry?  What do you think she will look like?"

Will:  "She will look like you, Mommy, and be you."

Be still my heart.

By the way, maybe "Sarah"  should know this.  My boy comes home almost weekly with some note from various girls at preschool - typically they have hearts on them, and sweet messages.  And being a typical boy, he is totally nonchalant about the whole thing. (Thank goodness.)    Last week, I found this envelope in his backpack with pictures inside it.  The stamp had a heart on it too.  

Sarah, my dear, he will have a wife.  And she will be lucky to have him.  And I hope in the meantime that you learn what really matters - it's not how many fingers you have.

Also, it's going to be a fun destination wedding in Africa, apparently.  I will make sure you are on the invitation list.  (But please don't drive.)

(ok.  off my soapbox.  High school is going to be tough  (for me.  I'm sure Will will do fine.)

(PS  Sarah is not her real name.)

• Ellie has the most amazing, cutest ever walker purse!  My friend Shae custom made it & I LOVE IT!  But  you can't see it yet.  I need one more picture to complete the post & then I plan on sharing all about it.  It deserves its own post.  Stay tuned.

• Off to Dallas... Ellie's new AFOs are failing us miserably.  The velcro has all ripped but I can't replace it - it has little patches sewn on in certain places to apply pressure.  Her right foot is showing signs of skin breakdown and bruises.  They don't stay on and she can even pull them off (& does constantly - especially in her crib.)  And my goodness, I can't get them clean!  Supposedly, these were going to last for several months.  It's been 3 weeks.  We're off to Dallas tomorrow to hopefully come up with a new solution.  I'm so afraid they are going to recommend I tape again.  I don't so much mind the taping except that I am loving the freedom of being able to give her a bath whenever I want without calculating taping time or supplies.  I love the idea that she can just splash in the pool - I don't have to deny her that because I don't have supplies on me.  I am so hopeful that when we go to the beach this summer that I don't have to tape her.  But.  I will if I need to because getting her walking and not losing any progress we have made over the last 19 months is more important to me.  So.  We'll see what this new orthotist comes up with tomorrow.  I'm trying not to feel discouraged.  Or overwhelmed.
• CMN is coming to film our family and tell our story through video on Friday morning.  I'm trying to pack up Easter decorations and clean my house so we can pretend like we are always pristine.  Actually, with a trip to Dallas tomorrow suddenly in the schedule and a must stop at the grocery store for items for a baby shower I'm hosting, it's just going to look like this is a very "lived in with small people" kind of house.  Oh well.  That makes people feel at home, right?  Right?
• Off to put up Easter.  And laundry.  And at least hide some of my paperwork that I just don't think I'll have time to clean up before Friday.  

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?

Because I'M NOT TAPING HER!!!

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.

Correctly.

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."

Seriously?

He's four.

He also used the word hilarious correctly.

And now I will begin carrying around a dictionary.

Doctor Day Update

 Tuesday morning, after our gas smell in the house scare (plumber came over and never could fine a source but smell went away and we have been back in our home and are fine... better safe than sorry.), Ellie & I headed to Dallas for some appointments.

Sweet girl was so happy to be facing forward at last in her car seat.

My kiddos are such great travelers - I am so blessed!

 But when we got to her first appointment, things took a turn downhill.

Poor baby.  I guess the recent blood work and cath was a little too fresh on her mind.

She was not having those splints.

 In fact, she was so resistant that the PT finally decided to just make on splint and then sent us to orthotics.

It's our first time in orthotics.

(Though we frequent the prosthetics dept with Will.)

 We had thought that around age 2, she would become resistant and we would switch from splints to orthotics.

Clearly, she's advanced.

 For the casting at orthotics, she was not a happy girl either.

This is a different type of casting than what we do with Will for prosthetics.  It is not a plaster cast nor is it very messy.  The orthotist allowed Ellie to sit on my lap the entire time which helped.  

Also, songs on my iphone helped to calm her too.

The great things about orthotics are that hopefully they will last a little longer for Ellie and also, ideally, I won't have to tape any more.

Can we please pause for a moment of silence?

And can we cheer out loud and do a happy dance?!?!

I have loved taping her and being a part of her splinting experience in a very tangible way...

but I can't imagine life without taping!

What will I do with all that free time?!?!

I'm especially hopeful that she doesn't need tape under her orthotics (depends on the fit as to whether or not I'll tape her) because we swim a lot in the summer.  And we go to the beach.

And it was difficult last year - I felt like I lost some spontaneity because even just a "quick evening swim" for 20 minutes in our neighborhood pool meant calculating taping time for Ellie and turned that 20 minutes into an hour - hour and a half of time.

And she loves baths and if we don't have to tape as much, she can take a lot more baths!

And I won't have to worry about making sure I have taping supplies if we go swim with friends or want to go to dinner or something after a swim.

Glorious.

Praying we get a break from taping and that orthotics will work for her.

Regardless, our goal is walking so I'm willing to keep taping if necessary.

(Frankly, I'm willing to cut off my legs and donate them if it meant she could walk.)

 I mentioned to the physical therapist in the splinting room that when I tape Ellie, she often tries to "help" me by putting spare tape strips onto her own legs or on her baby doll.

That sweet PT "borrowed" baby while we were in orthotics and then surprised Ellie with this:

 I daresay, baby looks better with splints to match Ellie!!

(And Ellie has noticed them too and likes them!)

Finally, I was able to feed her and grab a very fast lunch with our friend Claire before our doctor appointment.

Things began to look up.

 When we walked into the exam room for the doctor, she immediately became fearful and upset so I nursed her.

Sweet girl was exhausted & grabbed a power nap while waiting for the doctor.

(Is it just me or does it seem like when kids are practically bouncing off the walls with energy that it takes forever to see a doctor but when they are exhausted and sleeping in our arms that the doctor is right on time?!)

 The doctor's appointment went well.  She may need another surgery but it is contingent on some other potential surgeries so really it was very vague and I'm sort of confused at the moment.

Meanwhile, Ellie was wiped out & slept hard on the way home.

Cuddling her newly splinted baby, of course.

Recently...

I love homemade Christmas ornaments!

Will made this baby Jesus in church this weekend - love it!

On Saturday, our city hosted a free "Holiday in the Park."  They had a craft bazaar (which we avoided) jumping houses (avoided those too - those become challenging for us with strangers when Will takes off his prosthetics) & craft tables for kids.

But the big hit?

They had snow machines & both a corral for snowball fights & a sledding hill!

I love cold weather but must admit, it is nice to go sledding when it is 50 degrees outside!

Will flew down the hill & loved it!  He even requested that they spin him.

Though she is a brave little daredevil, we were told Ellie was too young.  

So I let her touch the snow - she wasn't fond of it.

Will flying down the hill.

The kid in R came out - he was pretty happy too to fly down the sledding hill.

They also showed the movie Polar Express in the park on Saturday night.  We decided to not go sit in the cold to watch it & instead my parents had us over for stew and a Christmas movie inside by the fire.

Which worked out nicely because I became sick and was glad to not have to cook or do dishes.

Now, Ellie is sick too. :(

Poor baby.

Last week, we went to Dallas for several appointments.

Ellie's PT in Dallas loaned us this gait trainer which is great because if it works for her, it will save us a lot of money in purchasing one.

She looks unhappy here but that's only because she had been with doctors or therapists for nearly 5 hours & was exhausted.

The appointments went well-

Will was very open with one doctor talking about an experience last week when a child laughed at his hands & hurt his feelings.  I'm glad he trusts his doctors and talks openly with them.

And I'm often amazed at his ability to articulate himself at his age.

His ortho recommended we pursue another specialist for some issues.  Arrrg.

We were waiting to go that route until we had his opinion from the orthopedic standpoint.  I was glad to hear his perspective and will now begin researching and consulting with another specialist to make sure we are doing all we can for Will.

Ellie did good - her hip is reopening which is not good.  I asked the doctor what this means - 

he replied 

"50/50 chance she will need surgery again."

YIKES!

I keep trying not to burst into tears at the thought of another hip surgery & spica cast season.

I keep telling myself not to say "I can never do that again."

Because I might have to.

BUT ARRRRRG!

Praying we don't need to do that.

But also thankful for a cautious doctor who is monitoring her hip closely and who wants the best for our girl.

All in all - 

Friday we did the following at the hospital in Dallas:

x-rays (Ellie)

Lowers orthopedist (Will & Ellie)

prosthetist (Will)

physical therapy stretches & splinting (Ellie)

10am - 3pm.

Ellie ate lunch while being splinted.

Will, Lovie, & I ate in the car.

LONG day

Good kids.

Saturday morning, I attempted to make custom gloves for Will.  It about broke my heart in the snow last year when he didn't want to play or make snow balls with his friend because the snow hurt his hands.  (His gloves wouldn't stay on.)

So I determined that this year I would figure out a glove solution.

I marked his hand inside his gloves & then cut off the excess part.

Then I attempted to sew.

FAIL.

My sewing machine needle isn't strong enough to handle such thick material & batting & my skills are too limited.

I cried to my mom as I feel like this is something I ought to be able to do for my son.  I should be able to make him gloves so he can play in the snow.

She suggested I quit putting the pressure on myself & just take gloves to a pro seamstress with an industrial machine & let her figure out.

Wise mama.

Will sang in church today.

I was sick so I just went to hear the kids sing & then I left.  

He was so cute.

This afternoon, I asked him to sing the songs for me.  He was doing so good telling me "one for the itty bitty baby, two for Paul & Silas, three for the Hebrew children, four for the four who stood at the door, & five for golf ball preachers."

Golf ball preachers?

I couldn't figure out what that was supposed to mean.

So I looked it up.

"Gospel preachers."

From now on, our family will always sing "golf ball preachers." :)

Ellie's Dallas PT at Scottish Rite gave her this several months ago. 

She loves it & it is such good exercise for her independently.

decidedly undecided

He asks me almost every day.  "Mommy, will you lay in bed with me after my surgery?"  "Will you read stories to me after my surgery?"  And every day, I've reassured him.
And I have no idea what to tell him now.
It breaks my heart because I hate the idea of breaking his.

R & I are not decisive people. At all.  We've sought counsel, we've prayed, we've debated, we've waited & finally, finally, we came to a decision.  A little boy's queries to a surgeon, his requests to be able to do more activities like writing and coloring with just one hand - those pushed us over into a decisive yes to the surgery.

We sought three medical opinions from top surgeons all over the country.  There was one opinion I tried to get a year ago and was told "no."  I couldn't get past the nurse as they claimed her opinion would be the same as her colleague's whom we had already seen.

So we've planned and prepared and because we were given hope from the surgeons we began to prepare our little boy.  We thought this was going to be possible.  Soon, he would be able to grasp more objects with one hand.  We believed this to be reality.

Last week, at the hospital in Dallas, the surgeon walked into our pre-op appointment.  Except it wasn't the surgeon we've seen countless times.  It wasn't the one we had chosen to do the surgery.  It was the one I had been denied access to a year ago.

Turns out, she didn't agree with her colleague at all.  In fact, she informed me that doing the surgery was setting him up for failure - that she didn't think it was possible to give him the chance to grasp effectively with one hand this year.

And then I was blindsided with an entirely new surgery, one I had never heard of.  It's complicated and I still haven't fully researched it.  I don't fully understand it but it would be a series of surgeries and bone repositioning and stretching and it's not possible until he is maybe 6 or 7.

He's four.

This means that he would have to wait at least 2-3 years before even the possibility of helping him be able to grasp more objects with one hand.  It means he will be in school and face a lot of absenteeism and missing out on extra curricular activities and possibly face delays in school, not to mention relearning basic skills that we are working on now - like writing.  At age 4, this wasn't such a big deal.  It's big for a 7 year old.  And it means he has to continue struggling to keep up with writing until then.

The whole meeting felt like a huge wreck.  I was blindsided.  And her bedside manner quite frankly, stunk.  But I'll spare my heart the repeating of some of her insensitive comments made while my child was in the room.  (I had heard the rumors about her bedside manner.  I'm sad to say she lived up to them.)

But she is a renowned surgeon so maybe she is the answer for us.

Or maybe not.  Maybe we're going back to Boston soon to talk to that surgeon, yet again.

I felt a peace finally about the first option.

Now I feel a peace about nothing.  In fact, I'm finding myself struggling each day since then - I thought I could do something for my little boy - that this was something we could given to lessen his struggles, to increase his function, to eliminate a difference for him.

I don't know which surgery we should pursue.  I don't know when or if we should pursue it at all.  I don't know which surgeon anymore to trust to do it.

And mostly, I don't know how to tell my little boy that it's not happening anytime soon.  And that maybe it's not ever going to happen like we had thought.

And that breaks me.

Emergency Surgery

During soccer practice last week, we noticed Will's prosthetics (zancos) were having some issues - the feet kept twisting on him which really made running very difficult.

So, first thing Friday morning, I found a local prosthesist who worked him in...

& conducted a minor emergency surgery.

No anesthesia required.

In fact, the brave patient happily played superheroes and cars during the operation.

That is my kind of surgery.

After that, for more fun in "random medical things I had not planned on doing that day" we headed for some x-rays.

Will was so brave - he stood by himself for his "pictures" & did great.  Flash the superhero stood nearby offering moral support.

Afterwards, Will asked the tech if he could look at his bones - she let him & he thought that was so cool.

(We've come a loooong way from those first xrays.)

And then we headed for blood draws... which I don't have pictures of because that is never ever easy.

New Zancos!

Will got his fourth pair of zancos this week.  They are AMAZING!

What makes this pair so special?

1.  They have cool designs!  We decided to let Will choose a design this year now that he is nearly four.  He and I went shopping for fabrics and picked out several he liked (& that I approved of for his legs.)

We took the fabrics to the prosthesist in June & she used them to create cool designs on his legs.

One leg has...

Superman!!!

And the other...

Batman!!!

Very cool!

He asked me to text pictures that morning to one of his best friends, Hudson.  Here is the text of the conversation between Hudson and his mom:

Rachel:  You know how Will wears zancos?

Hudson:  No

Rachel:  You now the special shoes he wears?

Hudson:  Huh?

R:  Look - Will has stickers on his legs!

H:  Oh cool!  I want that!

And then she said to me, "So thanks, now my kid wants a tattoo!"

LOVE that sweet friend - four years and he notices Will - not his zancos!

Perhaps Will is going to be some sort of preschool trendsetter now! :)

Another thing that is cool about this pair?

His first set of ankles!

Which adds to the height - my kid "grew" about 4 inches instantly!

He is very proud of his new height & likes to admire himself...

(Here he is seeing how tall he is next to Mommy now.)

Practicing running for the prosthesist so she can check fit.  This was a little frustrating to him as he hasn't fully adjusted to the legs and is slower than he would like to be.

I have no doubt he'll be speedy again soon.

And the third thing that makes them so cool?!?!

Will has his first "split toe" prosthetics which means he can wear flip flops like his friends!!!

He had been begging to wear flip flops so I asked his prosthesist if we could try split toes this time.  She was hesitant because feet with split toes come with ankles which means more height and also they are more flexible which makes them harder to walk with.  And because Will's has hand differences, she was concerned about him falling.

When we tried them on at his alignment, she was amazed that he didn't fall once.

So, far, since receiving them, still no falls!

I'm sure there will be some falls to come but he is doing great.

And a huge thanks to creative Brenda - Will & Ellie's PT, who attached velcro on the feet to help hold on the flip flops!

Along with his new height, he is acting more and more independent.

He insisted we stay back aways while he purchased his popcorn at the hospital.

(One of the "rules" at Scottish Rite is that it always smell like popcorn - not like a hospital... so they pop popcorn all day long.)

 And then he sat at his own little table to snack on it.

 After Will's appointment, Ellie went to hers...

her feet have gone down to 4's now!  Yahoo for some progress!

 Will happily played with Megan (a volunteer on Will duty) during Ellie's appt.

 And showed off his new zancos

 Brenda is cleaning out some toys in the baby room at the hospital & offered this to Ellie.  She loves it & it helps her bear weight.

 We noticed Will's picture on a big photo montage in the hospital...

Will is pointing up at it

 Clearly my child has been deprived of the great American experience of shopping malls. We went to a mall to go to a shoe store & he kept talking about how amazing it was -he didn't know there would be toy stores and statues and fountains and restaurants and shoe stores.  Very exciting.

So, confession.  I handed my mom the camera at the shoe dept and asked her to take pictures of Will getting new shoes.  

We've always had wonderful experiences buying shoes but usually I crack up (inside) as our salesperson is always a little taken aback when I say I need to buy kid shoes and hand a leg over.  Understandably, we're not the typical customer.  I do think, however, that we are pretty easy - they don't have to deal with a wiggly kid as we just pull off the zancos and hand them over.  And, I know I get at least a full year of wear out of the shoes which is nice.  What's more?  We sometimes buy shoes a little big or a little wide - it's not like they will give him blisters or hurt him... and then I get even more wear out of them.

It's all about the perks.

So, at Nordstrom's (which I highly recommend their shoe dept.  It will be very beneficial for Ellie as they will let you buy kid's shoes and mix sizes - with clubfeet this is common to have different sized feet.)

I hand Michelle a zanco and she was completely unfazed.

In fact, she had all kinds of ideas on how to make various shoes work.

Turns out Michelle has a teenager daughter with hand and feet differences and who wears a prosthetic leg.

She was awesome!

 Sorry blurry pic taken with my iphone...

too funny - we have no idea where he learned this but out of nowhere, he made this pouty face, put his hands on his hips, & started strutting

When Michelle brought out a pair of rain galoshes - BATMAN style- Will was floored.  He said, "No Way!"  

He's been wanting rain boots for awhile but I have never been able to get them on his zancos since I can't bend the feet.  Same problem with fireman boots.

But, Michelle - she could do it!

And so, in the worst drought in Texas recorded history, Will now has rain galoshes.

Which he wears everywhere.

 Ellie loved watching her big brother

Lovie treated us to Will & Ellie's first circus - Barnum & Bailey were in Dallas celebrating their 200th year.

We loved it!

They had superheroes and pirates with swords and acrobats and animals and clowns.

Will was in heaven!

 Ellie was hilarious.  I think she may try to join the circus.  She kept rocking out of my arms & clapping and squealing.  She LOVED the show!

(although she fell asleep and missed the second half but I loved having a sleeping girl in my arms.)

 mesmerized

Thanks, Lovie, for a fun day!