I can hardly  believe it but its been almost 5 months since Lilly's surgery!
5 months and an entirely new life has begun for both of us.



Last time we all spoke Lilly was just getting started and hadn't even seen her new legs, let alone walked. We were still struggling quite a bit with the life changing adjustments that came with our choice to amputate. I still have flash backs to those early days and am so thankful we are done with that part of the journey. It was not easy or fun but wow, Lilly's new life is pretty phenomenal now and both of us are so thankful that we made this choice.


The new energy that Lilly is experiencing is remarkable as well. It's hard to say if its physical or emotional energy, probably both. She is just so happy and excited about EVERYTHING! The simple daily tasks like washing  her hands, getting a glass of water and just being up right has changed her attitude dramatically.

A popular question right now is, how did I return to work so soon.
TEAMWORK
TEAMWORK
TEAMWORK
Lilly and I have been very fortunate to live near family and have established very close relationships with people in our community that all have chipped in, lended a hand and shoulder whenever we needed it. I pulled from a lot of those that we loved for help. It was mandatory that I return to work for financial reasons and well as insurance reasons and simply for my sanity.

So whats happened in the past couple of months?
One of Lillys acheivements over the past 5 months is that she graduated Kindergarden and had the wonderful first experience of "walking" to her Teacher to get her diploma!

Lilly got her first set of prosthetics from Hanger.
Bill Shea is her prosthetician and is an amazing person who has had to spent a lot of time tweaking and adjusting her new legs. He has also educated both of us on how it all works! Bill has become one of our favorite advocates and mentors. He is also amazingly good natured about the importance of pedicures and pretty shoes!
Bill often reminds me to slow down and remember that Lilly has never walked before so she has no point of reference. Its hard to imagine, but for Lilly, each day is a mobility test and challenge.
 

 

In the process of Lilly learning to walk a wonderful non-profit organization came into our lives.
Santa Tim is the organization and it was the man and his organization who sponsored Lilly and I to go to Camp No Limits 2014.
 
 



Camp No Limits is a camp for children and families who live with limb loss. Oh my goodness, it was fabulous fabulous fabulous! Lilly and I met so many new friends and I was able to network with other families and organizations. I think the highlight was when Lilly got to try running legs. The look on her face was one that I will never forget. It was as if the reality of her new life had just hit a new high point and she was in love, totally in love with the running legs and all the possibilities that they held for her. From that day forward she aspires to participate in the Paralympics as a long distance runner. Can you imagine - just 5 months ago she had never even stood up and she is dreaming of the Paralympics, wow how amazing life is for Lilly and I now. I find myself speechless. 

She also continues with weekly physical therapy, participates in gymnastics camp, swimming and T-ball.

So has Lilly had any PTSD symptoms or phantom pain? In the beginning, right after surgery for the first month or 2, yes. She was terrified almost "frozen", she was very angry and blaming of everyone for the loss of her legs. About 5 times she mentioned that her toes tingled or hurt. We were very lucky, all of these symptoms faded away as time past and she does not complain about any pain or loss today.

However, the other day she and I were having a casual conversation and she talked to me about things that she remembered from surgery and those early days and then quickly moved on to how happy she is to have her new legs and how she can do "everything" now.


 
 
 

 So for now, we are just going to continue working on being 6 years old and making the most of every day. We are so grateful for every moment and everyone who has been so inspirational and loving. Thank you from the bottom of our hearts
You all ROCK!












8 comments:

  1. There are no words..you girls are amazing. Love u

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  2. Please contact me. My daughter is 7 and just lost her second leg. Both through knee like lily. My email is deirdremcgaley@gmail.com I could do with some advice going forward. Thanks.

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  3. This comment has been removed by the author.

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  4. Hello my name is Darae I have been taking my daughter to shriners Sacramento since she was 13 days old. She has the same conditions and her being amputated was brought up yesterday at her braces appointment. I would love if you could call me and we could schedule a meeting for my daughter to meet Lilli and allow me to ask you some questions. My phone number is 7753045555 and I can meet you pretty much wherever for this. Dr. boakes and her colleague Dr. lerman in Sacramento referred me to this blog.

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  5. I just saw you and Lilly on the news because you lost your home in the California fires. It was so sad to hear that Lilly lost her legs and wheelchair and I just pray that you're getting assistance in getting them replaced quickly! God bless you both for all that you have triumphed through. ❤

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  6. We also saw you and Lilly on the news, and heard the great news that Lilly's prosthetics were donated to her. My mom would like to mail you a donation check (we saw the GoFundMe but my mom would prefer to send a check so the whole amount goes to you). Could you email me an address my mom could mail that to? My email is StaceyPaigeU@mac.com.

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