It Was Only A Matter of Time

Riley's behavior has been off all summer, we're not sure what's going on.  We've tried talking to her and she either storms off and says she doesn't want to talk about it or she denies anything is going on.  The end of the year ended rough for her as well.  The last day of school we headed to Dr Hoffinger, I had been prepping her for a while that she might need more surgery but it would be after her summer softball All-Star league (yep, didn't blog about that either) and after soccer season which is due to start any day.  Anyway, the appointment pretty much went as expected.  She needs surgery, not a tendon transfer, but a tendon lengthening on the bottom of her foot.  It should be a month in a walking cast so she wouldn't have to miss school (darn, that means no work leave for me to care for her) and it should be fairly easy compared to what she's been through.  And Dr Hoffinger being as awesome as he is agreed to wait until after soccer season.

Well it all came out a week ago.  It was bedtime and Riley just lost it, it all came rolling out.  She overheard Dr Hoffinger and I talking and she knew she needed more surgery.  She hates having surgery, she hates having clubfeet, she hates the way the medicine they give her for surgery makes her feel, why does she have clubfeet and no one else in the family does, why doesn't Jacob have it but she does?  Every why I've ever asked myself came rolling out of her.  All of the weight and burden that I've carried for 8 years since finding out about her feet came spewing out of her mouth and in those moments, my heart shattered into a million pieces.  I fumbled my way through all of those questions.

I don't know why you have clubfeet Riley, but you do.  And as long as you have it we'll fight it and we'll beat it.  Jacob doesn't have it, well because, you've met your brother and he couldn't handle it.  Do you think Jacob could handle casts, AFOs, surgery?  No, but you can.  You're never given anything you can't handle.  But remember all of those kids that we see at Dr Hoffinger, who are in wheelchairs and can't walk.  The have it much harder than we do, at least you can run and play and are the best softball player in the family.  So I hate clubfeet too but we have it pretty good compared to some other kids.

What if I have it when I'm an adult and have to have more surgery?

Then I'll be by your side, even if you're married and have your own kids, I'll hold your hand as you go into surgery and I'll be there when you wake up.  No matter how old you are, we'll fight it together.

I hate clubfeet.  I wish I never had it.

Me too, Riley, me too.  All I ever do is worry about you, your feet, having a normal life, I worry that you will have pain when you are older but we're doing the surgery and the things we're doing now so that when you are older and an adult, hopefully we can stop worrying and all we'll do is have pictures and memories to remind us of our battle.

And as she went to bed with tear soaked cheeks, I went to bed wishing if I could wake up and make her clubfeet mine, I would.

My Sporty Spice

We didn't have many plans this week, we decided on a staycation to get caught up on life so when we got an email about a batting clinic through Riley's new softball league, we decided to sign her up to dust off her bat and swing.  I was a little worried that she would be the youngest there but it turned out that only 6 girls signed up for the time we chose and they ranged from 6-9 so it was perfect.  There was a professional batting coach running it along with two high school players who were college bound so they were able to individualize the instruction to fit the level of the girls.  The batting coach had an app that measures the trajectory of the swing along with swing time to the ball.  It was pretty cool.  He then took Riley's swing and layered it over professional athletes' swing.  He compared Riley's swing to Jennie Finch (USA Olympic player) and Riley has a pretty similar swing to her.  It was crazy, he also said her reflexes and bat swing are fast enough that she could play player pitch this year (versus the coaches pitch her age and grade default too).

I love watching Riley play any sport but particularly softball.  She becomes a different person on the field, her focus is unbreakable, she matures about 10 years and she's passionate and dedicated to it.  It made me very excited about this upcoming softball season!

Mediocre News

This crazy life has continued to escape us, here it is December 26th and my last update was in August, which also coincided with Riley's last clubfoot update.  It's been about a week since we trekked up to Walnut Creek for her checkup.  We were both pretty nervous, Riley was convinced she was getting a cast and had the color all picked out.  I on the other hand, thought a cast was in our future but was pretty sure he wasn't going to cast her because of the holidays and vacation schedules and getting her in for changes.  At least she is finally in tune with her foot.

Of course everyone there was delighted to see Riley, she pretty much owns that office.  And most importantly, she feels comfortable there.  It's so weird now that he's at Stanford because everythig is so protocol driven, he as a nurse who comes in and examines her, of course she had little to no dorsiflexion, which had me doubting my suspicions about not getting a cast.  But then Dr H came in and watched her walk, examined her feet, asked her about pain.  So the good news, no cast and really not necessary.  He says her clubfoot is not causing the inward turning of her foot.  If he were to take x-rays he'd see all of the structure of the foot is fully aligned and where it should be, that her cavus tendon is causing our issues.  We had this issue with her left foot which used to be a size smaller than her right.  He released the cavus and I remember him coming out of the OR and telling us that once he released that tendon, her whole foot relaxed and settled into looking normal.  He of course continued to transfer her tendon on that foot because alignment was off and no matter how much we casted, it continued to drift off it's axis but her right foot is fully aligned.  I took this as fantastic news because Ponseti seems to have worked on her right foot, she's now nearly 4 years out of the brace.

The bad news, she needs a cavus tendon release, sooner rather than later.  Especially because I expressed concern because her feet don't seem to grow.  She's a size Toddler 11 at 7!  Little brother is a Toddler 12 at 4!  He said the release should help with some of that.  We're in basketball now and then we roll right into softball so her surgery will be right before or right after school lets out.  This will allow her to play the sports she loves, finish up the school year, and then still have a summer.

Riley of course took it all in stride.  She really is a trooper, she rarely has moments where she hates her clubfeet or gets upset at courses of treatment and she was was elated NOT to be getting a cast.  I was pretty happy to not have to figure out how to keep it dry in this El Nino winter that we're having.  So now we just wait for the scheduler to call and get the ball rolling on that front.  Of course, sending her into surgery again is not ideal but I am optimistic that this will be a fix for us and help with some of the pain that she's been feeling.  A few hours after her appointment we went to basketball practice where the assistant coach pulled me aside to tell me Riley was the only one who could make a basket on the team.  In my head, I laughed, because if only she knew a few hours earlier she found out she needed foot surgery again, it would make it all that much more ironic.  For now, we live life, riding bikes (when it's not raining), playing basketball, doing running club and we will cross surgery when we get there!

We now bring our own shorts (which everyone thought was genius) since she hates his paper shorts.  When I told them this wasn't our first trip to the rodeo, they all laughed and said not by a long shot!  I think her feet look pretty good here, she's still running on her toes a lot and when she walks you see the curve on her right foot due to the cavus tendon.  

Our traditional picture in front of his planter, Riley now won't let us leave without this picture!  i love her for that, she plays my silly memory games!

Hours after the orthopedic surgeon, taking a jump shot at basketball practice.  My little Sporty Spice!

Foot Update

First of all, I can't believe it's been 2 months since my last blog post. A true testament to the craziness of our lives right now, lots has happened since that last update, including a trip to Disneyland! (gasp, how could I not blog about that you ask!?!  Well talk to my son who refuses to sleep and sucks every last bit of energy that I have left in me, out of me!).  Oh and Riley has also lost her first and second tooth since my last blog post (oh the mommy shame!) 

We've also had a clubfoot checkup since then as well and well, it was with mixed reviews so that's probably why I haven't blogged about it, because I'm in denial that we are still fighting this battle with her feet.  This time her right foot is proving to be our problem child.  The surgery on her left is still a success but now her right foot appears to be turning in (proof in the wear on the outside of her right foot), this after being out of her brace for 3 1/2 years.  Why!?!

She's also walking on her toes which is in-line with the tight Achilles that we've been feeling.  Dr H doesn't want to intervene yet but surgery was brought into the conversation this time.  Same exact thing as on her left foot including the cavus tendon release on the bottom of her foot.  Again, why!?!  We chatted a little about out struggles because he had a resident student in with him (first time in our entire time of seeing him that there has been a medical student with him, thank you Stanford Medical - said sarcastically, I'm all for teaching but when it comes to my daughter's future, I'd like the full attention of the expert) so we didn't get too in depth but we both mentioned that we're supposed to be done with relapse by 5 and here we are, still facing them at 6 1/2.  Again, why!?!  I am very exhausted and deflated from all of these uphill battles.  For a kid that is so active this is just getting unfair.  She's now into soccer (another thing that we've started since my last post), basketball, and softball so I'm trying to figure out when I would even schedule a surgery to have the least impact on her sports and school.  I'm guessing maybe next summer, though that would delay getting her on the swim team which is supposed to benefit her foot and obviously ruin her summer.  It's very frustrating and exhausting.

On a positive note, we met a little girl (well she's in 7th grade) and her mom that live not too far from us and see Dr H as well and Riley and the little girl have really hit it off.  She has unilateral clubfoot but had a similar surgery so she and Riley can compare scars and talk about having different feet.  It's been nice for Riley to have someone to relate too and it's been really nice for me to have another mom face to face to talk to about it.  I have met a lot of supportive moms in the online groups but for some reason I felt so much more comfortable with everything that I have been feeling after speaking in person to this mom (because she's feeling everything I'm feeling!)

So that's the update, not such great news but we go back in December so we'll see what he says!

See the wear on the outside of the shoe on the left.  No Bueno!

Finally A Break

We finally got a break from the clubfoot saga, I think we all needed some good news as I know I was getting pretty beat down and discouraged by our recent set backs.  We went to Dr Hoffinger two weeks ago (don't ask me about time flying by, I seriously don't know where it goes...oh yeah, to the 3 and 6 year old!).  I was seriously expecting the worst, I was well prepared to have to talk Riley down off of a ledge when he said she needed a new night brace or AFO.  I was convinced we were headed down that path, because while we have been fairly diligent about her PT (ok, we skip some nights, it's a lot), he feet are still really tight.  We were there 2 months ago and Bev, Allison (his nurse practitioner), and Dr H both made comments about how tall Riley looked.  I made a comment that perhaps that's why were having these issues and Dr H nodded enthusiastically.  She's really tight, like really tight but...she's also perfectly aligned when she walks and runs so Dr H doesn't want to intervene right now.  He thinks intervening right now isn't necessary and he's going to watch it closely (like every 2 months).  In addition to continuing our PT stretches (insert groan here), he prescribed lots and lots of activity, I think we pretty much have that covered here!  Both kids are in a perpetual motion!  Soooo, we finally got a break on this rollercoaster ride, a much needed break...especially for a certain little 6 year old!

It was sports day at school so she wore her softball uniform

We celebrated with lunch in Walnut Creek

Eat up buttercup!

I Knew the Day Would Come Eventually

Riley has been a rock star with her Physical Therapy, she has won over the entire staff at the Sports Medicine Facility (no shocker there) and has made friends with the various high school girl athletes that are there for PT for injuries from sports.  In a way it's sort of nice for her to see these athletic girls and she kind of looks up to them.  BUT PT is a chore, it's literally a 1/2 hour of stretches and exercises every night, on top of homework, sports, Jacob's breathing, cooking dinner, making lunches for the next day, etc.  It's rough, but the payout versus the alternative treatments is exponentially better so we muster on.  The other night I was multi-tasking between Jacob's breathing and Riley's PT exercises.  I had her doing her stair stretches while I got Jacob set up with his asthma treatment and Riley turns to me and says "I wish I didn't have clubfeet."  I didn't know what to say other than "I know bubba, me too."  Then she followed it up with "Why am I the only one with clubfeet?  You, daddy and Jacob don't have it, why do I?"  I couldn't give her a reason, we DON'T know why she has clubfeet.  I finally told her to always remember that we are never given more than we can handle and that everything happens for a reason, maybe her reason is to help fix kids with clubfeet or prove that you can be a rock star softball player even with clubfeet.  That seemed to be enough for her.  But it's not for me, why does she have this?  Why won't it go away?  I've always accepted her feet as just a card we were dealt and it's a part of our life, but we're supposed to be done, we're supposed to be past it and were not and I am growing weary of it, especially now that it's affecting my baby girl. 

Where to Begin?

I don't even know where to begin, just when I was beginning to get comfortable and think that we actually had clubfoot behind us, we get hit with another bump in the road.  It started in late February/ early March but I tried to ignore it.  I started to notice Riley's left foot turning in when she ran or took steps down the stairs.  I tried to ignore it since last year's surgery was supposed to be it, no more issues.  A couple of weeks ago, Marc and I were standing at the kitchen table and Riley was walking down the stairs.  Her left foot was drastically turning in and her heel wasn't touching the ground, my heart sank and I literally got nauseous, it was the point where I knew I couldn't ignore it anymore.  I turned to Marc and told him I was concerned about her foot again, that I've noticed it turning in and her heel not completely hitting the ground.  He replied that he's noticed it too, especially at our 5K on St Patrick's Day and when was she supposed to go to Dr Hoffinger.  Her appointment was still 2 months out so I decided to call and see when they could get us in.  Turns out they had availability the Friday before Easter. 

Yet again, I was right about her foot.  Her tendons were tightening up, this time it was her heel cord and it's apparently not a common issue at this point in her treatment or after the tendon transfer (which the Achilles' was the one tendon that he didn't touch because we lengthened that when she was 3 1/2 months old!).  Sigh.  Lucky us!  Our options: 1) Increase stretches, 2) Re-cast (not an option since she's in the middle of softball season) 3) Night-time brace that stretches 4) Another tenotomy (surgery she had at 3 1/2 months) followed by casting and brace.  Grrrr!

We chose option 1, seemed the least interruptive to her day to day activities.  We go back the end of May for a re-check and if her feet aren't looser than we figure out next steps, most likely a night-time brace.   Riley's teacher offered to have her stretch before recess so Riley is doing stretches before she plays, there's a group of girls doing them with her and then they walk a lap before taking off to play.  Plus we do stretches before bed.

In the meantime, on our way out Dr Hoffinger mentioned that if we wanted to do some physical therapy to learn more stretches that he'd write us a prescription for it.  Hallelujah!  I've been asking for PT since her first relapse so I jumped on it.  They recommended the Center for Children's Sports Medicine at CHO Oakland on their Walnut Creek Campus.  So I'm driving up to Walnut Creek twice a week for PT.  I've got to say it is worth it, Riley loves her PT, she's very sweet to Riley PLUS it's mostly high school athletes there and they all love Riley because she's so little and gets right in there doing her exercises with them, no fear with that girl.  Her evaluation showed tight hamstrings and calves and also weak hips so we're focusing on strengthening her hips as well as stretching out her calves.  She gets massages to manually loosen her legs (can I get PT!?!) and then they do a bunch of stretches.  At this point I will do anything to prevent another surgery.

I also ordered a dorsi-ramp from Amazon to get a better stretch out of her.  Seriously, I'm hell bent on avoiding surgery. 

As for me, I am SO over clubfeet, we are supposed to be done with it by now.  Between her age and her surgery we are supposed to be past all of this and living a normal life.  I'm beginning to think that my expectations of her feet are too high, that they are never going to be perfect, and the sooner that I  accept this and move on, the better off that we will be.  And as horrible as this sounds, I am off from work, finally getting a chance to catch up on life and instead of doing this, I am shuttling to a from PT and Speech Therapy (for Jacob).  I know, I feel like a horrible mom for even thinking or saying it because I know Riley deserves all of the chances at having corrected feet that she can get but seriously, when are we going to get a break from all of this!  I want to move on from clubfeet but I'm beginning to think that may not be in our cards at this point.  Sigh.  We'll keep tryng and keep moving forward to give her the best possible future.

First PT session

Strengthening those hips

When did she grow up?  Off to PT one her own while I sit in the waiting room

Post PT treat!

Position still looks good

Before PT

My Brave Little Toaster

Well, it's hard to believe but it's been 1 year since Riley's ATTT surgery and cavus tendon release.  I really can't believe how far we've come, castings, AFOs, walkers seem like a distant memory.  The scars are mostly faded and Riley is back to her active self.  Making the decision to operate was one of the hardest decisions I've ever had to make as a parent.  Marc has input in Riley's clubfoot treatment but most of the burden and decisions have fallen as me as I've attended every appointment, done all of the research and have made it my mission in life to prove the Dr who said she couldn't do it all dead wrong.  When we decided to operate there was no definite that this would work, we didn't know the short term or long term effects, I just knew that I wanted her done with clubfeet before she started kindergarten.  I'm not sorry for this journey we've been on, we had hoped it would have been smoother, more turn key but it's shaped the world as we know it.  I've meet amazing families who are going through similar decisions, every first for Riley is even more special because we know it's been harder for her to get there.  But I look at these two perfect feet, I watch her running the bases in kickball at school with her peers (she's surprisingly fast), and I see her smile as she plays her first season of softball and it's all worth it.  I learn new lessons from Riley daily and I am both inspired and humbled by her persistence and take charge attitude.  Some physical activities may take her a little extra time but she never gives up, she doesn't take mediocre for an answer and I will be forever grateful for her stubborn attitude (for once it's a positive). 

These feet make me smile: 1 Year post-surgery!

Thankfulness

So I'm a little behind, my parent came up for the week and it was pure chaos with the kids excitement.  They had so much fun and Riley even got to sleep over at the hotel (and ride in a booster seat since cousin Daniel is in a booster seat now).  Jacob was especially excited to have a whole week of stay at home days even though he talked about all of his school friends all week. 

Off to the hotel with Nana and Poppy

We started Thanksgiving Day off with our first Turkey Trot, I think we are most definitely going to have to make this an annual tradition.  Marc and I ran the 10K and it was great!  I actually had my personal best time for a run averaging a pace of 9min 15sec per mile.  After our run we had about an hour before Riley ran in the kids' 1/4 mile run, next year I'll have her do the 1/2 mile as the 1/4 mile was too short but because of her age they kind of talked me into having her do the 1/4 mile. 

This is what I get for pictures these days

And she's off

She took off at the finish line, she smoked me!

So proud of her!

She loved it!

My running buddy

This Thanksgiving I am thankful for many things but I'm especially thankful for Riley being able to run in the Turkey Trot.  I'm thankful for what looks to be a future that is cast and surgery-free and I am thankful for her ability to accept her clubfeet and not let it affect her life.  She could very easily use it as a crutch and an excuse to not do stuff but she shrugs her shoulders and just says "Yeah, I had clubfeet, so what."  I'm thankful for her resilience, ability to face adversity and most of all her contagious smile that despite countless casts, AFOs and a pretty major surgery, never stopped smiling.

Cheers to all of that and more!

After our run, I cooked Thanksgiving dinner for us, which I failed to capture a picture of.

Friday, we woke up early and hit up the Outlet Mall for a little Black Friday shopping.  And then went to the regular mall for more deals with kids in tow, they were good sports and we got lots of great deals!

Black Friday shopping!

Riley got a nice Buster Posey jersey earlier in the week so we let Jacob get a Build-A-Bear

The kids literally go nuts for this store

Jacob made BuberBear - his new Spider-Man bear (he calls Spider-Man "Buber-Man")

After shopping, I made Marc go for a run with me!  Needed to run off that gluttony!

Jacob loving on his poppy

Dinner with my pretty girl!

And just like that another vacation is over and now onto the next big activities...Jacob's birthday AND Hanukkah!  Let the holiday/birthday season begin!

It Was A Good Day

Today was another whirlwind day but it ended up a good day, at least in the eyes of Riley. 

We started the morning off with Riley's first report card parent/teacher conference.  Riley got a very, very good report card and update from her teacher, we were very proud!  I got to pick her up after school because she had a 2:00 appointment with Dr Hoffinger. 

We grabbed a quick lunch at home before heading to her classroom so I could meet with her teacher to plan the Thanksgiving Party for her class and then we headed up to Walnut Creek for an appointment with Dr H.  I was pretty nervous, Riley's right foot has seemed a little stiff so I was concerned we might be heading down a relapse path even though I haven't seem any curvature.  While I was meeting with her teacher, Riley colored a picture for Dr Hoffinger thanking him for fixing her feet.  We also brought a kindergarten picture for Beverly.  We got there and luckily they weren't too busy so we only had to wait a few minutes before going back.  Riley handed Beverly her picture, which she LOVED!  Bev has always loved Riley, even when Ri was a baby, Bev used to scoop her out of her car seat and walk her around the office before Riley had her casts removed and re-applied.  Riley always calmed down in Bev's arms.  And of course we can't forget when Bev came to visit Riley in the hospital after her tendon transfer.  She's equally important in Riley's treatment as Dr H is. 

Then it was time for BossyMan.  He came in and Riley handed him her picture, he loved it and gave her a huge hug and then she told him about her Dashing Dolphins and her 6 dolphin tails.  He couldn't believe that they had a running club for 5 year olds but was very happy to hear about Riley's excitement over it and her participation.  He did the usual inspection and after watching her walk said he saw absolutely no turning in on either foot.  I let out a big sigh of relief and told him I was concerned because that right foot seemed tighter than usual and he said he felt that it was tighter as well but the position was good and there was no turning when she walked.  (Sad, that I can feel the tightness in her feet like a well trained orthopedic surgeon).  He also said that at this point (2 months before her 6th birthday) that it would be extremely rare to have an issue at this point on that foot.  He felt like we would have seen any issues if we were going to see them.  The surgery seems a success, the right foot looks good without surgery so there might just be a light at the end of this long journey that we've been traveling.  I am cautiously optimistic that we may be finally putting clubfoot behind us.  She's come so far and I'm so proud of her strength and the way she just lets it all roll off of her.  She could very well use her clubfoot as an excuse to not participate or do stuff but Riley has never let clubfoot get in her way.  I often wonder how a child who spent the last year and a half in casts and AFOs ignores all that and is able to run around and participate as if she's never been through any of this.  It blows my mind!

That's Riley and Dr H on the right side together

Check out the flexibility on those tootsies!

Miss Sassy!

Our traditional picture!

Since we were in Walnut Creek, Riley wanted to go to my office.  So we headed over there for a little bit, enough time for some Kellogg's treats!  There were only a few people in the office but Riley still enjoyed herself.

And I wonder why she likes coming to work with me!?!

Like most days; it was busy, chaotic, and exhausting.  But it was a good day!  I'm so proud of Riley's great report card, thrilled that her feet are looking good, and happy to spend the afternoon with her.  Work has been awful lately and Friday was a good reminder of what is really important in life!

Two Little Tootsies

So one of my friends from one of the clubfoot groups emailed me last week, her daughter is a few weeks younger than Riley and she has another daughter right around Jacob's age.  Her oldest is bilateral clubfeet like Riley and they just went for a check-up and her daughter may need the same surgery Riley had.  I told her I'd send pictures.  So I took some pictures of Riley's feet for her.  Riley is about 8 months post surgery.  I think they still look pretty darn good, I was worried about her right foot for a bit but it seems to look ok here!

Hardly any scars here!

This is the worst of her scars and thank goodness it's on the inside and the back.  Still it's not horrible!  All of the others have pretty much disappeared!

Yeah, that red on her foot is silly putty!  The scars aren't visible!

And on top of it, Riley participates in Dashing Dolphins at least once a week which is a running club at school.  So proud of her and the fact that clubfeet has never held her back.  I still remember the Drs telling us that she would never be able to keep up with her peers when they found the clubfeet in-utero.  Well she has more than proved them wrong, and every week that she gets another mile under her belt it's a few more steps in our fight against her birth defect.  Drs know a lot and but they don't know the spirit a child can possess and that it can defy the medical statistics.  I love watching her run with her classmates and friends and seeing her pride for each dolphin tail that she earns (they get a dolphin tail for every mile they run) and what it took to get to where we are today.

Things I Would Have Told My 29 Year Old Self

It's hard to believe that it's been 6 years, 6 years!, since that fateful day where we learned we'd be traveling along this clubfoot journey.  The day started out with excitement over finding out the gender of our first born but it was quickly deflated by a series of repetitive questions and over analyzing of each part of our baby's anatomy.  We'd later find out the baby was a girl, our sweet Riley, but I will never forget the Dr's words that there were "birth defects that had him concerned."  Those words and his voice still ring loud and clear in my ear, like it was yesterday.  The day ended with fear and a heavy weight on my shoulders that I've carried around for 6 years now and that I will continue to carry as the future seems so unknown for what Riley will face going forward and into adulthood.  We have no clue the limitations her defect will cause her (right now none but arthritis is a common side effect) or the pain she may experience (again right now none), the future seems so uncertain and what the future is for children treated with the Ponseti method is so unclear and each case is so different depending on the severity of the feet.  I wish for a crystal ball daily so that I can prepare myself and Riley for her future. 

But here are some things I would tell my 29 year old self, laying on the table, staring at two crooked feet, two bent pinkies on the ultrasound, learning her first baby had birth defects:

• Take pictures, lots of pictures and when you think you have enough, take some more!  I don't know if it was denial, shame, embarrassment or I just wanted to make it better but we have barely any pictures of her pre-treated feet.  I wish I had a time machine to go back and do newborn photos that included her feet.  I remember being so careful as to not get her pre-treated feet in the pictures and now I wish I had them, I wish I had them as a reminder for me of how perfect she was when she was born despite her imperfections but mostly for Riley.  I want her to see how her feet looked, embrace it, and move forward with the knowledge that she's already overcome so much in her 5 1/2 years of life!  I know in a few years, she will ask why we don't have more pictures of her feet and I won't have answers for her, only regrets of not having more pictures of her feet pre-treatment.
• Normal means different things.  Riley never knew any different from her casts or brace.  She was our first baby, so neither did we.  She was our normal.  When Jacob came around and he didn't have clubfeet, we needed to learn all over again how to change a diaper without a handle bar (brace).  Normal labels are lame, excuse my bluntness but they are.  For Riley, normal is casts and braces, we're lucky that she's never asked why she has all of this stuff and Jacob doesn't.  I hope she never does, she accepts herself as she is and rolls with it.  And to Jacob, it's normal for sister to have casts and an AFO. And Jacob is fiercely protective of her and to him, casts and AFOs are normal for Riley.  In fact, the other day she asked if she could go in the bouncy house at a party and Jacob asked about her AFO.  I was blown away by his comprehension of Riley's needs.   I remember when Riley came out of her AFO and we went for our first walk, Jacob yelled at Riley that she needed her AFO.  Just the other day he put her AFO on and said "I wear AFO like Wiwey!"  This is our normal - our normal is a closet full of casts, constant scruntinizing of positions of feet, braces, and AFOs. 
• Other kids, friends' babies will meet their milestones before your baby and it will be like a stab to the heart but she'll get there and when she does, it will be the best feeling because both of you worked so hard to get there.  No one wants their baby to be delayed, behind, slower than any other kid.  But your baby will do things on their own time and in their own way. 
• People are going to be rude and insensitive.  I remember when Riley went into her relapse and came out of her casts.  One of her friend's mom made a series of snarky comments about the new shoes Riley kept getting.  I had to buy her shoes to accommodate her AFO but she didn't think about that, just made a nasty comment about new shoes.  I get a pit in my stomach every time I take Riley shoe shopping, when I found out we were having a girl, I was excited about the endless pedicures and shoe shopping adventures for us.  None of that is fun for myself or Riley.  I want her to buy shoes she wants but they often don't fit her feet right.  I hope now that she has had her surgery that changes for her.  Or when I met a co-worker's wife and he explained that I had been out on leave because Riley had surgery.  She asked why, I gave my 30 second spiel and she responded with "Wow, that must have been hard knowing if the Dr messed up that her feet would be ruined forever."  But people are going to make rude and insensitive comments, and it's ok, because they haven't walked our shoes (pun intended).  Just remember that you are doing the best so that you can give Riley the best possible outcome and future.
• You will learn more from your child than you ever thought possible.  I learn many things from my kids daily, seeing the world through their eyes is amazing.  But Riley has taught me more than I could have ever imagine.  She taught me to roll with the punches, she faced each stage of her treatment, from casts as a newborn to surgery at 5 with a sense of acceptance, like I said, this is her normal.  When she got sick of answering the same questions about her AFO, she got up in front of 60 5 and 6 year olds and told them about her clubfeet, surgery, her AFO and her Dr.  I get nervous for presentations at work.  Now I feel silly, she faces everything with such a sense of bravery and confidence that I never thought possible from a child.
• This will be a roller-coaster of a journey, there will be ups and there will be downs but in the end you will learn who your support is, you will learn you have strength in the depths of you that you never knew you had.  And you will realize that maybe you were destined to do something with this.  It's so easy to ask "why us?" but in a few years you will ask "why not us?"  5 1/2 years later I have loved meeting beautiful families from all walks of life that I have created friendships with.  We all have the same worries, insecurities and experiences with newborns in casts, braces, and looking for the perfect PJs to work with a brace.  I have loved helping families in their darkest of times to see that there is a bright spot in their child and seeing their babies walk for the first time because I know that immense feeling of triumph when a clubbie walks for the first time.  So "why not us?" we're not special, we're just a family of four trying to make our way through this life that we were handed, and we were handed it for a reason.
• Finally, go with your heart.  You will have to make decisions that could make your daughter's life significantly better or worse depending on the outcome.  You need to go with your gut, with your heart, because otherwise you will lose a lot of sleep.  Fortunately I have never regretted the decisions we have made for Riley - we love her Dr, he's been treating her since she was a 4 1/2 lb newborn and she adores him and trusts him.  We had to decide on surgery, such a hard decision to send a 5 year old into surgery but looking at the results of her foot, I don't regret a thing.  And we made lemonade out of lemons, I was able to take a month off of work to spend with Riley while she recovered and it was an awesome month.  I learned how incredibly awesome my kids are, I learned that I REALLY wish I didn't have to work and I learned that my kids always, always, always deserve to come first.  Yes they may drive me crazy but they deserve more than an overworked, too busy momma!  So no regrets, go with your heart and it will all work out!

This isn't the journey we expected but Riley isn't the little girl we expected, she is much much more, she is stronger, older, more mature than I could have ever hoped for.  She can be trying but in the end, it's her fabulous temperament, her tenacity, and her fight that has helped guide us through this journey with such ease.  Riley is now a month into kindergarten and she's just like a typical 5 1/2 year old.  She's sassy, she talks back, she runs, she jumps, she loves school and her friends and she has faced more than anyone ever imagined and has strength well beyond her years.  I was talking to her teacher last week and mentioned she had surgery in February to correct a clubfoot and her teacher said she would have never, ever guessed.  On the outside, she's just a happy, typical 5 1/2 year old but on the inside, she's much, much more. 

The Journey Worth Traveling

She's had 19 casts over the course of her life, I've driven countless miles to orthopedic surgeon appointments, we've probably had 100s of Drs appointments between casts and check-ups, we've had dozens of brace fittings, I've felt like I've failed her too many times, I've spent countless nights awake with worry about her feet, she's been through two surgeries, she has a killer AFO tan, but today it all culminated in two perfect feet and today it was all worthwhile.  Today, Riley, for the first time in a long time, is brace free with two feet in perfect position with perfect flexibility. 

We are nearly 6 months post-up, we've been monthly since her surgery for check-ups, we waited over an hour today to get into our appointment, all signs were pointing to a bad day.  But we got called back to our room and all the nurses fussed over Riley as usual, commented on how tall she looked since last month and joked over who got to have her as their favorite patient.  Then Dr H came, had her do her walking exercises, checked her flexibility.  I mentioned that Riley has been complaining a bit about her AFO hurting her heel so she may need a new AFO or could it be stretched.  He said "Why don't we just stop the AFO all together?  She looks good, really good."  Riley has been hoping for this day for months now, so needless to say she was ecstatic, as was I, I told him how happy we were with her feet, everything about them from the scars to the position, to the shape.  She gave Dr H a big hug, he said "Riley, I've had a really bad day today, but this, this made up for it all."  For me, I am so relieved, a huge weight feels like it has been lifted, I nearly broke out in tears, it's been a long, uphill battle to get here but we are here and I am so thankful.  Riley and I skipped through the parking lot hand in hand singing "We are brace free!" 

There's still the possibility that she could need more surgery but today I am relishing in the fact that this is not on the table right now and that Riley can start kindergarten AFO free, that she can do all of the activities that she wants and that I don't have to remember to check her backpack every morning for her AFO.  It didn't seem like we would ever get to this point, but we got here, and I am loving it!!!

After waiting for over an hour, this is what she would give me!  Check out those awesome feet!

On the way up to Dr H she was telling me about checkers and chess, I told her we'd go get Checkers at Target after her appointment if she behaved (she had a field trip and no nap so it was questionable).  Well she did great so we got a checkers/chess combo game, she tried to teach Jacob how to play.

I think her smile says it all!

Lots of Catching Up to Do

I seriously don't know where the time goes but it's flying by.  I can't believe Friday is August 1 and what is even crazier is that I just went school supply shopping for Riley!  Craziness!  So, July was a busy month, the weekend after July 4th my parents came for a visit and the Marc's cousin and his wife came the following weekend.  So here are some pictures of July since it's all a distant memory now!

We write a note for Riley every day for school.  The teachers read it at circle time, Jacob wanted to write a note for her too!  He loves his sister so much, this morning when she left for school he said "Wait! Wiwey hug!"  So sweet!

Marc had to go to the city two days in a row for a conference which meant super early mornings for me and long afternoons, he brought me a box of chocolate as a thank you!

This girl is officially 5 1/2!

He loves lemonade!

Little man gets cuddly when he's tired!

This made kindergarten official!  Final registration and teacher assignment on August 19th!

Pedi's by Nana!

With Nana and Poppy!

Making cookies for Riley's half birthday

Jacob wearing his thinking cap!

Decorating cookies

I didn't realize Riley had picked out blue frosting when I agreed. Mommy fail!

Yeah, these were internal cookies only

They sure were yummy though!

Blue mouth!

Jacob's first trip to the dentist, this was as far as we got!

Summer = s'mores!

Deliciousness

Tie dye twins

We busted out the Wii...

Getting a little help from daddy

Ri was pretty good

Ri was in the pool and came out and left two perfectly shaped footprints

Jacob also went to his first movie - Planes 2!

I was overly optimistic, we went potty 3 times in an hour and 45 minutes!