Already thinking of 2017!

Oh my you guys… I can’t believe it has been 6 MONTHS since the last post!

We have been insanely busy. Nick’s been working and I went back to school. We have been cherishing the free moments that the 3 of us have together.

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In the past 6 months, Hazel has exceeded many of our expectations and is your typical “terrible two.” She has begun to speak more clearly and knows many shapes, letters, colors and can even count to 15. We have been able to put Physical Therapy ON HOLD until she needs to be re-evaluated come January! As of July, her therapist said she was age-appropriate in her gross motor development and we could put it on hold until we felt she needed it again.

Hazel finally outgrew her first prosthesis and received her second one at the end of October! She picked out her own fabric with cute little elephants. We received it in just enough time to go Trick or Treating this Halloween!

 

We also received an amazing gift from Adam O. of Game Changer Feet. He created and donated Hazel’s very first running blade!
Unfortunately, Hazel’s current clearance is a little to small for the blade, but we hope to have her running on it by next Spring! It’s seriously the cutest.

 

Tomorrow, we have to head back up to Children’s in Weschester to do a third round of serial casting on Hazel’s right foot. As she grows, it’s like her Achilles tendon will not grow with her or fast enough. This tightness is causing her foot to relapse into the clubbed position, even with an AFO brace. SO, hopefully this set will help lengthen her enough, but there is a possibility for her to have another tendon snip if she just can’t get past a certain point.

Hopefully it all goes well tomorrow! But I don’t think we will have many issues.She bounces back pretty quickly 🙂 As always, thank you for your constant prayers and love!

HAPPY THANKSGIVING EVERYONE!

 

Time Flies when you’re having FUN!

We have had the most hectic 2 months!!   5 doctor/clinic visits, Easter weekend trip to Ohio, moved into an apartment, participated in a Fashion Show, and a trip to the zoo!

Since our last post in March, Hazel has been walking everywhere! She’s a typical toddler thru and thru and I can barely keep up with her most days. She is right where she should be in regards to gross motor  development and are working on a few skills most 18 month olds can do, but with a prosthesis poses some difficulty.  She is super smart and loves to talk… A LOT.


We just met with her surgical and non-surgical orthopedics within the last 2 weeks and they are super happy with how her residual limb looks and are even happier with how her “clubbed” foot looks after this last set of casts! She walks with much more ease and stability. We are still having some issues with her foot turning in, but everyone thinks it has to do with her knee positioning. Without ACL’s her knees look more knock-kneed then in a child with their ACL’s. Both orthopedics said it’s normal and think that she will grow out of it in a couple of years and we should have a better idea where we stand when we go back to see them in July. We will also get updated leg x-rays at that time.

She totally rocks at walking and is running at her own hazy pace! This past Easter she was even able to run around with her cousins at Grandma and Grandpa’s house in Ohio for an Easter Egg Hunt! And she did awesome!.


Mid April, our little family moved into our own apartment! Nick kicks butt at work everyday so that I can still stay home with Hazel! The guy doesn’t get enough credit, and I am public announcing what a bada$$ his is! Seriously, the best! I Thank him every single day for working so that I don’t have to and can focus on taking care of Hazel. Since the move, Hazel is WAY more mobile, way more talkative and her imagination and love of exploration and play have flourished! She has figured out how to walk without her prosthetic leg, which is extremely impressive and takes lots of balance! Without her leggy on she has a 3.25in length difference, so it’s quite a fall.

The week after move in, Hazel participated in an All Abilities Fashion Show at The Land of Nod Chicago. It was put on by Changing the Face of Beauty.Their Mission and Vision are beyond wonderful *click the link to check them out*
We received wonderful photos from A Little Photo Studio. Melissa, the owner/photographer of the studio, was AMAZING! She was able to grab the attention of some of the most difficult children. I don’t even know what else to say about Melissa… she was that incredible.
It was absolutely breathtaking and heartwarming to see children of all ages and all abilities playing, talking, laughing, smiling, enjoying the day with NO JUDGEMENT! I wish more adults acted the way these children acted towards someone who was “different” then them. But this fashion show was showing how Different is Beautiful! Celebrating the 22 participating companies that are dedicated to using children of all abilities in their advertising!

 

The last Sunday of April, we met up with 7 other families who have a child with Fibular Hemimelia or a leg length discrepancy. With FH occurring in only 1 of every 40k live births, it’s insane how large our group is! I believe our group is up to 10-12 families who have a child affected.  It was nice to talk and see other families at different stages and talking about how much we love our children and how amazing they are. The day was a blast and we can’t wait for all the kids to get together again!

  


We have really put Hazel’s physical diagnosis on the back burner. There is nothing that she can’t do if she puts her mind to it! The kid is a superhero to us. She continues to blow our minds and make us proud every single day…

 

2 more days!

Sorry for the lack of updates! Nothing much has been going on here.
Hazel had her last cast put on last Tuesday and it will come off this coming Tuesday!
After 5 weeks of casting,  I CAN FINALLY GIVE HER A PROPER BATH!

Hazel has been walking around like crazy. She doesn’t care that she has a cast on her leg, she just keeps on going!

We are very excited for Tuesday to come. We can’t wait! We picked out a new print for her new brace! its super cute and pink with little bugs! We have one for day time and we have one for night time. Hoping the new braces will keep Hazel from having to go thru casting again 🙂

I’ll post some pictures on Tuesday!

“Hey Little Fighter, Soon Things will be Brighter!”

 Most of you saw this lovely photo I posted on Facebook/Instagram last night

I had mentioned in our previous post that it was extremely likely Hazel would have to be re-casted to treat her clubbed foot. We (Nick & myself, Orthopedic Surgeon, and non-surgical Orthopedic) all agreed that we need to go thru a few more rounds of serial casting to push and stretch her muscles farther up and out. Her Achilles tendon just did not stretch like we had hoped for. So we will go back every week for 3-4 weeks and get a new cast put on and they will continue to stretch her out! She will also get re-molded for a new foot brace: one for day and one for sleep.

But don’t worry! The cast doesn’t stop her! *see below*

These Boots Were Made for WALKIN’

I wanted to share an amazing update with all of you! Hazel is WALKING!

Some have seen the short videos posted on Facebook and Instagram, but I wanted to share with those who may not use social media.

HERE YA GO!

She is still trying to figure out how to stand independently, but she will pull herself up and take a good 5-6 steps!

Hazel just had her annual evaluation thru Early Intervention and we are happy to say that developmentally she is above her age range in 90% of the skills tested! She says 15+ words, listens to (most) directions and follows them, knows the idea of cause and affect, loves books, and can associate animals and sounds! Physically she has great fine motor skills and has caught up to her appropriate age range for Gross Motor development!!
We will continue to have Physical Therapy once a week to keep her motivated and moving 🙂

We meet back with our Orthopedic Surgeon Monday January 25th for a follow-up and her Non-Surgical Orthopedic February 2nd.
More than likely (99.9% likely) Hazel will be casted on her right side to treat the clubbed position. It is slowly starting to regress back to the clubbed position, even with the AFO holding it in place. Luckily, they will be able to put her in a walking cast so that she can still be mobile.
Once the cast is off, we were advised by the clinic to get a new AFO casted.

For us, 2016 is off to an INCREDIBLE start!
Just remember…
When you think that there is no possible way to do something: Improvise, Adapt, Overcome!

Goodbye 2015, Hello 2016

{120 days post op}

2015 was filled with life changing events for us, And we anticipate and are reaching for an even more life changing 2016! We have so many goals we want to achieve as a family to make the next year great. 
We hope you all had a very Merry Christmas and have a Happy New Year!

Thank you for continually following Hazel’s journey and keeping us all in your thoughts and prayers ❤️

 Here’s to another amazing 365! 

Baby it’s Cold Outside!

{96 days post-op}

We hope everyone had an eventful Halloween and Happy Thanksgiving!

I wanted to do a quick update since it’s been over a month (yikes) since our last post! That might be an ongoing trend… haha

Since last, we have gotten a new AFO brace. Hazel kept slipping out of the first one because she’s a natural Hazel Houdini. She’s doing awesome with her prosthesis and is right on track developmentally for her age! She loves to stand and cruise along furniture; she even loves to push her push toy all on her own!!!

We are continuing physical therapy thru EI once a week.

About a month ago, I expressed concern to our PT Ms. L about Hazel’s right knee. It just didn’t look right to me. I brought it up to our surgeon at our follow up mid-November, and he didn’t seem concerned. Obviously that was not what I  wanted to hear. I kind of laid in on him as to why I was absolutely sure it was not her foot, but her knee. But he insisted everything looked and felt fine. We took it on faith that he knows what he’s saying and left.
As the month has gone on, we noticed (and Ms. L agreed) that her positioning is getting worse.  Makes you feel a little better when someone else tells you you’re not crazy! It just doesn’t look right to me and it’s holding her back on walking independently.

So as of now, we have an appointment with Dr. Ackman at Shriner’s hospital December 18th. Hopefully we can get a little more testing done via xrays maybe an MRI so that I can have better piece of mind. Mother knows her child best and I was not laying on “Everything looks fine,” when to me it looks less than fine.

I’ll update you all after our appointment in a few weeks 🙂

As always, we thank you for loving our daughter so much. She is truly a blessing in our lives in more ways then one!

Hazel’s Back on 2 Feet!

{53 days post-op}

We have a new AFO brace

                    

Her 1st leggy

                   

And new shoes

Our appointment was pretty rough because she was really tired. It was right at her usual naptime, so with everything happening at once, she was just over it.

She took a nice long nap and we put her leggy and brace back on. She did amazing! She was pulling to stand, re-adjusting her crawling, trying to shift weight. She did so much better then we expected. Reegan came with us to Hazel’s appointment and we are so happy she did! Reegan was (and still is) extremely encouraging. She always tells Hazel she’s doing a great job!

             
The way her brace and leg are set, is so she is baring weight more on the balls of her feet to learn to walk. We’re all adjusting little by little!

Hazel prefers to do it all on her own. She gets frustrated very quickly. But if we try and help her, she gets irritated and throws a temper tantrum. So we are going to let her get out her frustrations and continue to encourage her and shower her with praise no matter what!

We’re off to an okay start. Not knowing how she is feeling is hard, but I know in due time things will get a lot better.

Thank you all for your kind words of encouragement and out pour of love you’ve shown our daughter!
It truly means the world to us! 💕

Hazel’s Heroic Friends!

I have added a section to Hazel’s blog called “Hazel’s Heroic Friends”

I encourage all of you to check it out, visit their pages and see just how amazing Hazel’s friends are! I hope that this section of the blog will help parents who are just learning about FH & PFFD find comfort in knowing that YOU ARE NOT ALONE!

If you would like me to add your story, please let me know 🙂 the more the merrier!

In a world where internet and social media have taken over, we have been lucky enough to easily come in contact with other families who have a child with FH and/or other limb differences! All their journeys are the same, and yet completely different! We are all here to advocate for our children, and to raise awareness!


Matthew (Illinois) aka Superman, has FH and PFFD*
He had a Syme’s Amputation as well and is currently on his second prosthetic!

Click on the photo of Hazel & Matthew to visit MATTHEW LEGSTRONG!

LEGSTRONG


Ms. Maely (Illinois) was born just this past June! Maely has FH affecting her right leg with an absent fibula and has 4 toes on her opposite foot just like Hazel! They just created their site to share her journey!

Click on the photo of Maely to visit her blog!

 


Elsie (Michigan) was born with FH & PFFD*
Elsie and her mother are currently residing in Baltimore as she goes thru limb lengthening of both her femur and tibia! They have had amazing success so far and almost done with the pin turns!

Click on the Photo of Elsie below to visit her Blog!

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Talon (Pennsylvania) was born this past May! Talon has both FH and PFFD* affecting his right leg. His family has been traveling around and meeting with surgeons who specialize in limb lengthening. They are currently running a Booster T-shirt fundraiser (until Oct 31st) and also have a Care Fund started as well.

https://www.booster.com/talons-journey-with-fh-cfd
https://www.youcaring.com/talon-donnell-444310

Click on the photo of Talon to follow his journey on Facebook!

 



Kennedy (California) was born with FH affecting her right leg. She has an absent fibula and a very bowed tibia. She will be having a Syme’s amputation this winter.

Click on the photo of Kennedy to follow her journey on Facebook!

 


*Proximal femoral focal deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD), is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened.

A Leg Up

We are moving ahead quickly over here!


We went back to see Dr. G on September 28th to remove the second cast. He had to remove about 5 stitches and Hazel did not like that one bit. Pretty sure Mom and Dad hated it more…BUT! The cast was off and her limb looked amazing! A couple blisters, but nothing drastic.


And you better believe she was kicking that leg like a Rockette at the Macy’s Thanksgiving Day Parade!
Lucky for us, we have an amazing friend who works at our Orthotics & Prosthetics clinic. 🙂 She was able to get into the clinic that same day to have our Prosthetist take a look at her leg and even take a couple measurments.

Oh and that night I also gave her a bath and it was the greatest bath thus far!


Monday we had an appointment to get casted for both her new AFO & her first leggy!!!!!!!! Hazel was a true champ. Props to Nick for holding up that Kindle for about 30 minutes while they casted her. Her AFO will have a cute pattern on it and some colored foam and velcro. And I think were going to just do a plain color for her leggy so we can put stickers on it and change it up.


We got our leg liners to break in and have been wearing them during the day to get use to them. She’s trying to bare weight on the limb more and more. To bare FULL weight does irritate her some, but she will still try. We go back next Thursday, October 15th for a test fitting!

We are so excited with how quickly things are moving along and are grateful that Hazel is in the most caring and loving hands.

Until next time, here are photos of Hazel’s NEW FOOT!