A Test Run

Today, we spent all day at Rainbow Babies and Children's Hospital for Sadie to undergo a MRI, prescribed by Dr. Paley in Florida.  This is a procedure he needs to gain a detailed view of her hip formation as related to the cartilage, femur bone, pelvis, etc.  This all relates to her superhip surgery that he will be performing for us in November 2013.

Sadie had to go under general anesthesia to have this done.  We were not allowed back with her as they administered the gas and IV.  She is getting to be very observant and knew something was up.  She also was not allowed to eat or drink anything all day, so that made my job as toddler entertainment a bit more difficult as well, while waiting for over an hour for the doctor to take her back.  I know that people, babies and animals all undergo anesthesia every day all over the world, but when it is your baby, that is the only one that matters.

I could tell that, as I requested, all of our friends and family were thinking and praying for Sadie.  I have always believed in signs and a few of them leading up to the surgery I feel were in our favor....they called us the day before and moved the time up to the morning instead of afternoon (remember -- no food/drink for toddler until after procedure), my favorite Dave Matthews Band song and version (acoustic version of #41) came on the radio JUST as we were pulling into the parking garage, we ran into Dr. Liu (our orthopedic doctor at Rainbow) just as we were entering the elevator and got to say chat with him, one of the nurses in the pre-surgery waiting room asked if we were related to Ann Falvey (which Jimmy thinks was his grandpa's sister), AND right after we left Sadie with the doctor as she was crying, we went into the gift shop and found the one and only Dora balloon.  Sadie LOVES balloons (at the stores we call her the balloon detective because she will point out all of the balloons for you) and she also LOVES Dora.  It was a 3 foot tall Dora Halloween balloon too, just like her book and DVD she currently loves.  It was perfect, and the ONLY one they had left.  Totally meant for Sadie!

Everything went well.  The procedure only lasted a little over an hour and we were back with our girl, waiting for her to wake up.  As soon as she woke up, she saw the balloon and almost hyperventilated she was so excited.  She drank some apple juice, devoured an entire banana and we were on our way home! 

It was a test drive for our big hip surgery in one year.  We are so thankful for how perfectly everything went.  We even managed to laugh a little and have some fun during the day too.  We are a lucky family!  I hope her other procedures go this well!

Stream of Consciousness

Source: bellamumma.com via Valarie on Pinterest

In high school art class, we had this really cool project called the stream of consciousness.  You basically drew a ton of different little pictures that represented what you were thinking on a long piece of cardstock and you didn't have to have rhyme or reason to how it fit together.  Being a wedding planner for over 10 years, I pride myself on keeping things as organized as possible.  However, this post will not be that.  I just have so many thoughts running through my head that I want to get down, and the best way to jumble them all together is to relate to the stream of consciousness idea.

I was born to be Sadie's mom.  That little girl and I are so in sync with each other it's crazy.  I have never truly, naturally and 100% enjoyed anything more in my life than just taking care of her, being her mom and loving her.  I have a list of sappy songs I sometimes listen to and get teary-eyed just thinking about how much I love her and want the best for her (for the record, some of them are "Home" by Phillip Phillips, "Forever Young" by Rod Stewart and "You'll be in my Heart" by Phil Collins).  I feel that my combination of personal experiences that has shaped who I am up to this point has prepared me to be the mom of a little girl born with a physical difference who needs someone strong to help her through it.  I also feel that who Jimmy and I are, and some of the ways we as a couple view the world and make decisions coordinate well with this situation too.  We won't just get through it, we will build character from the experience and gain something from it, and I don't just mean gaining a few inches on Sadie's right leg.

Source: flickr.com via Maggi on Pinterest

I want the best for her.  If a genie appeared in my house one day and gave me one wish - any wish at all - it would be to fix Sadie's legs.  It would not be to turn back time and have Sadie born with two equal legs.  If that happened, it would not be Sadie.  She is such a special little girl and the fact that her right leg is shorter than her left makes her that much MORE special.  It's who she is, and I love who she is so much.  She is such a little ham, she's so happy, such a bright light.  She radiates from within and everyone who has met her has said something to that effect.  She *sparkles*. I am not sure if many people can truly understand what I'm saying here, but when I am walking around in public with Sadie and she's doing her toddler walk with her leg brace and what looks like 2 feet on her right leg into the library, or in the mall, or at Gymboree, I actually feel lucky that I am her mom.  People look at us all the time.  I'm sure it's because she has this leg brace on and they wonder what happened.  Some people ask and I tell them.  Most people are polite about it.  I actually appreciate it if people ask rather than just stare or give a critical/ignorant look.  I think it's best to be open about the situation because we are not ashamed of it and we are happy to talk about it.  We are so lucky that everything is going to turn out okay but even if she was not having surgery I would feel the same.  I just feel so blessed that this baby was born, just possibly needing a little more in life from someone close to take care of her and get her through these huge things that most kids don't have to deal with, to me and Jimmy.  I feel that our house was full of love and laughter before she was born- but Sadie, her heart, her laughter, her smile, her beauty, her intelligence, and her 2 unequal legs, fill our house with more love and support for one another than we could have ever planned for ourselves.  Everyone should be so lucky to have a jumbled variety of experiences fill their heart with so much love.

Source: loveisblinndd.tumblr.com via Valarie on Pinterest

Source: Uploaded by user via Valarie on Pinterest

Source: via Valarie on Pinterest

Source: flickr.com via Maggi on Pinterest

We've got a Walker!!!

Sadie has been furniture walking for months, and taking 1 or 2 steps on her own for the past week.  She will also walk holding my hand (which I love).  On Wednesday, August 28 I picked her up from daycare and her teacher told me she had been walking around all day long!  She is 16 months old and I feel that this is quite an accomplishment!  We are so happy and proud of her and I spent all evening praising her and watching her new trick.  I think the combination of her wonderful leg brace that was custom made for her, and being at daycare 3 days per week with the other kids who are all walking helped her.  Congratulations Sadie!!!!!


I recently found this quote and love it:

It is not what you do for your children but what you have taught them to do for themselves that will make them successful human beings.
-Ann Landers

Jennifer and Dominique

Jimmy found one of the coolest stories I have ever heard, recently on Real Sports with Bryant Gumbel.  Speaks to us on so many levels!  I can't find the full length segment (we have it on DVR) but here is a snapshot.  I LOVE this story, and how Jennifer was raised!  Just amazing.  We are excited to show it to Sadie when she is older.

Almost

We've been back from Florida for a week now and I've had many people ask me how Sadie's Dr. appt. with Dr. Paley went.  During the Friday before her Monday appointment while I was busy working a 200 person Indian wedding, his office called me and said they only needed to see her once a year and apologized for the oversight.  So I'm not sure what happened there but they want us to come in in November and at that time she will be having an MRI done.  Jimmy and I have to coordinate our work schedules to figure out when we can go.

At this point, we are planning on her superhip surgery for November 2013.  They said that will work great since their busiest time for surgery is in the summer (because kids are off school).

Sadie is now standing on her own, with the use of her leg brace!  She is so proud of herself and so are we!  She is almost walking as well and can push something across the room while walking without help.  Here is a video of her pushing a trash can throughout the condo in Florida:

We had a family photo session done by our friends at RAD photography (Rob) and I will post all of them when I get the disc.  They are fabulous!!!  We took them at a very special place, Kirtland Country Club, where Jimmy and I had our wedding reception on 8/15/09!

Dream, little girl!

Summer in the Hamptons, haha

Lastly, I finally had to paint the toenails on the foot of the leg brace.  I think it looks fabulous!

 

I love the song "Home" by Philip Phillips.  I also love putting pictures to music and couldn't resist adding some recent summer pictures to a quick slideshow.  Enjoy!

Sadie's Leg Brace

After many, many hours spent in doctor appointments and phone calls trying to get the best type of apparatus to equal out Sadie's legs (until she has her surgeries beginning in 2013), we finally were fitted with and took home a custom orthotic created specifically for Sadie from a Prosthetic specialist.  Before we went to see him, we found a new local Cleveland doctor named Dr. Raymond Liu.  Dr. Liu is wonderful and we really like him so far!  He works at Rainbow Babies and Children's Hospital.  One of my past clients and now friends is a nurse there and has worked with him, so she knows first hand the wonderful job he does!  He is working on the limb lengthening and special orthopedic procedures only at Rainbow.  He knows Dr. Paley well, and has even completed a fellowship with him.  Dr. Liu can do any, all, or none of Sadie's surgeries, and has stated so.  He can even be her local doctor only, if we choose to do all of her surgeries with Dr. Paley.  We are considering staying in Cleveland for our limb lengthening but have lots of time to still decide what we want to do.


Dr. Liu was able to prescribe the same leg orthotic for Sadie that Dr. Paley prescribes.  Dr. Liu and our Prosthetic specialist who built it for her, both consulted on the phone with the people in Florida who create the orthotics that Dr. Paley prescribes.

Sadie has had this leg brace since May and she does great with it!  She wears it all day at daycare outside of her naps.  We also try to put it on her at home when she is playing.  It really helps her balance and as of July 1st she is now able to balance without holding on to anything for a few seconds.  I know she will be walking in the next few months! 

Here are a few pictures of the brace and Sadie wearing it.  I have found a few sets of fashionable knee high socks for her to wear with it (Our friend Lauren found us a cute pair too!!) and we are considering painting the toenails on the prosthetic foot.  :)  Not only does the prosthetic foot provide her the lift she needs to stand up and have equal legs, but the part that holds the bottom of her foot moves the foot as she moves her ankle, so that her muscle does not suffer from always being flexed if she wore a lift alone. 

First day we got the brace (still at doctor)

 We are set to see Dr. Paley again in West Palm Beach on July 9.  He will do a check-up with Sadie.  I am anxious to show him the brace she has been wearing, ask him about her walking progress as well as narrow down the month that she will have her hip surgery next year.  It will be here before we know it!

This is all just a tiny fraction of who Sadie is.  Sadie is growing into an absolutely beautiful little girl.  She has a sense of humor about her and whether she is opening her mouth to show you her teeth, raising her arms to show you how big she is, or crawling up the steps super fast (we think her shorter leg actually helps climb faster!), she seems to have a very strong personality.  She is also very loving.  She knows Mama and Dada, and enjoys "messing" with Dada especially when he is sleeping.  It is rare that Sadie first sees Dada and doesn't yell out his name.  She absolutely loves swimming too!  She gives us kisses and hugs all the time.  She is a picky eater so she must get that from Mama.  We are enjoying being parents very much and every day just gets more and more fun.  I think that being a parent opens up a part of your heart you didn't even know existed, and I can't imagine any other experience that could be more fulfilling than this.  Sadie is going to be a brave girl to get through the procedures and we will all end up better people because of it!!!

Sadie Orthotic and Other Updates

It's been a while since I posted! It's been super busy, with lots and lots of doctor appointments, AND a 1st birthday party! Post to come on the birthday later, but we have good news finally about progress in getting Sadie a nice lift/orthotic/prosthetic brace that will equal out her legs for her to stand and walk.

I switched her local orthopedic doctor to Dr. Raymond Liu at Rainbow Babies and Children's Hospital. He recently completed a fellowship with Dr. Paley in Florida, and is now doing limb lengthening and everything Dr. Paley does, right here in Cleveland! We still plan on using "the master"- Dr. Paley for the big surgeries, but it is relieving to have a local doctor who is on the exact same page as him. Dr. Liu even said as her local doctor, if we ever have to, he can just call up Dr. Paley on his cell phone and ask him any questions he has, in relation to how he handles issues as well as any potential complications from surgery we may be experiencing once we get back home.

Dr. Liu prescribed Sadie a special orthotic, which she had a casting appointment for last Friday. April 13. It should be finished in the next 2 weeks. We are so excited! Our physical therapist told us she will probably take off once she gets it!

Pics from her casting appointment (she was so brave! Scary to have a saw cutting right into the cast on your leg, especially when you are a baby!):
Sadie also saw the Easter Bunny for the first time, on April 5th! As usual she was very excited!


Sadie was the baby model in a wedding photo shoot that I organized on March 22. She was gorgeous and did a superb job. Photography by Arielle Doneson!

Sadie also has a NEW COUSIN! Anna Rose Rogers was born on March 20. Congratulations to Kelly, Andrew and Drew on their new family addition!
Click here to view 168 pictures from March and April:
http://pix.kg/p/316489137606%3A1980324750/scl

Sadie is 9 months old - Crawling and Standing!

On Sadie's 9 month birthday (1.23.12), she started crawling! Not in the usual, elevated way that babies crawl, but in more of an army crawl fashion. Since her upper right leg is shorter, she drags that leg and pulls herself around with her strong little arms. We are so proud of her!!! She doesn't let this slight discrepancy bother her, as she is right on target with everything physically. Our physical therapist (provided to us by Lake County's Help me Grow program) told us she is actually a little ahead of where any baby should be (not in crawling itself, just overall). I'm so happy for her! I can already tell that she has a very determined spirit about her.
HOORAY FOR SADIE!!!!

I will post a video soon of her crawling!

In 2 weeks we have an appointment with our Cleveland Clinic doctor so that he can measure Sadie's leg and write up the prescription for her shoe lift. I am sure that once we put it on her that she will look absolutely adorable and fabulous as usual. :)

Pics of her standing (holding on) of course:

Sadie and Mommy get Baptized

On January 8, 2012 Sadie and I were baptized together! It was a lovely service and we chose Hope Ridge Methodist Church due to our family history there (my grandparents used to teach Sunday School there, and my parents and aunts and uncles were all married there).

Sadie is lucky to have loving and supportive godparents:
Kelly - also her aunt - Jimmy's sister
Josh - one of my long time best friends from OU