A Day in the Life

After today, my right leg is .75 mm longer! I’ll explain my day today, because this will basically be my routine until we leave Baltimore.

I woke up around 7 a.m. with moderate pain. My mom got up out of her bed to get me some medicine. I ate a saltine and drank some ginger ale to help protect my stomach before I took it. Then I had to go to the bathroom. For that, I have to unhook my legs from these specials cuffs designed to prevent blood clots. They’re plugged into the wall then attached to me. I have to wear them 20 hours a day. Once I unhook those, I scooch down to the end of the bed. I put my left leg on the ground then call my mom over to hold my right leg and ease it down gently to the floor. I then use my walker to get to the bathroom. If I feel like I can stand I will also brush my teeth standing up. Then I do the whole thing backward, get back in bed and hook myself back up to that machine.

 The white things at the bottom of my legs are the cuffs I was speaking about above.

My mom has to help me with so much. She brings me everything I need to eat and drink. She brings me a change of clothes and helps me get dressed. She gets me my medicine and pushes me in my wheelchair. She has been such a trooper. I know she’s tired, too. It can’t be easy helping your daughter through something like this. She has been so positive and calmed me down when I get upset.

At 8:45 a.m. I get into my wheelchair and my mother pushes me across the street to the hospital. We’re staying in a Ronald McDonald type house for people having surgery at this particular hospital.  She wheels me all the way over. Some cars stop for pedestrians/wheelchairs and some cars don’t. We have to be careful! We get up to the 2nd floor where we go into a back room with Martin. Martin gets out the magnet box. The magnet is programmed to lengthen my leg .25 mm. We set the magnet on my leg. It makes a noise like an electric can opener and after a minute we’re done.

 This is Martin at our first leg lengthening session. My mom had to stand far away, because the magnet can mess up phones, cameras and credit cards.

Then my mother and I head back to our room across the street. Today I took a nap. Then at 11:45 a.m. it’s back to the hospital again for another .25 mm lengthening. After that’s over, it’s time for lunch. Today we ate in the hospital cafeteria. NERD ALERT: I kind of felt like Katniss Everdeen in the Capitol. It was my first time in a place with a lot of people since surgery. All the doctors and nurses were moving around so fast and they looked nice – just going about their day. I’m in my wheelchair just trying not to get in anybody’s way. I had forgotten since last time, but you certainly can feel like an outcast in a wheelchair.

We didn’t have to go to Physical Therapy until 3 p.m. So we sat outside of the hospital’s cafeteria. My mom watched a movie on her iPhone and I began writing this blog. It was very nice out today, so that was great.

 This is the view from that courtyard where I sat this afternoon.

During PT, my therapist stretches out my right leg. My ankle and hip are pretty good to go, but my knee has become very stiff since surgery. Raj forces it to bend until I’m in pretty bad pain. I breathe like I’m in Lamaze class and sometimes yell stop, but he just keeps pushing me. It’s for the best, but it hurts.

After an hour at PT, we went back upstairs for our third and final lengthening of the day. After a minute or so, we were done and free to do whatever we please until tomorrow morning when we start all over again.

This evening I’ll probably continue watching a marathon of Arrested Development on Netflix. I have plenty of books, but they’re not going to be a big enough distraction yet. I’ll probably fall asleep around 9 anyway.

My days are definitely busier than I thought they’d be. Going to and from the hospital takes up several hours, but it also takes longer to use the restroom, change my clothes and shower. I feel like this is my job and I’m “working” about 8 hours a day.

This will pretty much be my routine until we leave Baltimore on Monday and continue lengthening at home in Pittsburgh.

I really enjoy passing the time, looking at nice comments on my Facebook page and posts to my blog. All that helps to keep me motivated. Thanks so much again and I’ll continue to keep you updated!

RANDOM PICTURES:

 This is me with George and Susan. I told you about them in one of my previous posts. George came to Baltimore from Pittsburgh to learn how to use the magnet thing, so we can lengthen at home.

 The man on the right is my surgeon, Dr. Herzenberg. The man on the left is the creator of the PRECISE Nail which is what is inside my leg. He came to watch several surgeries using the device, including mine. They came to my hospital room earlier this week to check on me.

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23 thoughts on “A Day in the Life

  1. I’ve been waiting impatiently for your update!
    Praying for you on this “journey.” What an incredible trooper you are! Praying for your Mom
    too in her caregiver role. Your progress is amazing. Keep up the good work!

  2. Flynn,
    Keep writing!! I’m sure it’s very therapeutic for you and we love to read how you’re doing! It’s great that you have your mom – I’m sure it’s trying on you both, but you are helping one another in a special way that will make your relationship stronger. We can’t wait to see you when you get back in the Burgh! Loveeeeee,
    Maggie, Jason, Viv, and Charlie

  3. Hi Flynn!

    You don’t know me, but I remember when you were born:) Your mom and dad were my youth leaders at church at St. Paul’s and your dad married my husband Mike and I 22 years ago back in Maumee, Ohio. It has been so much fun reconnecting with them on facebook. You are one lucky girl to have them as parents! We thought they were the coolest youth leaders! haha. They even took us 30 hours on a bus to Young LIfe camp in Colorado that just could not have been pleasant!! I just remember your dad playing his guitar in the isles of the bus:) I have been praying for you and your family. I wish you a speedy recovery! You are one brave lady!
    God Bless
    Amy ( Pollock) Barrett

  4. I have been following your blogs and i admire your strength and courage! I want to thank you for sharing this journey with (for me) started as a loyal follower of news channel 9 and a fan of yours! And have now become one of the many prayer warriors for you! This is such a personal journey and again thank you for sharing ! Gods speed on healing and keep up the hard work. It will all be worth it! God bless and keep you!

  5. This one made me cry!!! Your amazing!!! And pretty talented because they are all so well written even tho your on meds and napping on and off!!!

  6. Thank you so much for sharing your journey Flynn. We have been praying for you and your family. Your attitude and strength are inspiring!

  7. Flynn – Carolyn at NHCO told me about your blog and this surgery. You are so brave! Sending you strength and prayers from Portland, Oregon. Sending some for your mom and dad too!

    Wendy Gordon

  8. Flynn, you are doing great!!! We have always been so amazed and proud of you with your accomplishments but this journey really shows just how wonderful a young woman you are. Thank you for sharing this with everyone. It gives us all a great “inside” look at what it takes to be a good patient!!! God Bless and we will see you soon. Love, Martha, Marty, Philip and Natalie

  9. Thank you for sharing this experience, Carly. Not only are you having a special bond with your mother, but this blog is a wonderful way to connect with all those who love and care about you. You remain in our prayers and we’re looking forward to seeing you maybe next week sometime??? Love you! Aunt Carole

  10. Carly-what a brave lady you are! Thankyou for sharing your journey with us. I will continue to keep you and your parents in my thoughts and prayers. Stay strong-Diann Jackson

  11. Hi Flynn!

    You don’t know me, but I remember when you were born! Your mom and dad were my youth leaders back in the day! Your dad married my husband Mike and I almost 22 years ago. It has been wonderful reconnecting with them on facebook. The are very special people as you know:). I have been following the posts on your blog. You are such a brave person!! Thank you for sharing your journey. God Bless you– Amy (Pollock) Barrett

  12. Carly,

    Thanks so much for sharing this experience with all of us. It is hard to hear about so much of what you are going through but good to hear that you are handling it so well. I guess, once this second go around started there wasn’t much choice but to deal with it but you certainly have a great perspective.

    “Temporary inconvenience, permanent improvement”! That’s what the road construction signs used to say but “inconvenience” is quite an understatement in your case. I look forward to the days when your pain diminishes and becomes a mere inconvenience and eventually goes away all together!

    Thanks again for the updates! They are greatly appreciated!

    Love,
    Norm

  13. Enjoyed reading the newest addition to your blog. You really do have a busy day and viewing it as a ‘job’ is certainly a super way to look at it. Hope the pay is good! I know the outcome sure will be. So glad your mom has been able to be with you this whole time. We know what a source of strength that is for you. Love from all of us.

  14. LOVE all the details you are sharing…makes me feel like I am right there with you 🙂 Wish I could hold your hand when the pain is really tough, but I know your mom is taking extra good care of you!!! Hang in there and keep making us proud with your strength and determination. Love ya! xoxo
    Steph

  15. Dear Carly,
    We’re thinking of you and praying that you and your mother will both stay strong throughout this ordeal. We miss seeing you at 10 and will look forward to seeing you in “our” pew soon.
    With love,
    Ed and Mary Ann Shuey

  16. Hi Flynn,

    I’m an old friend from Ohio of your parents and wanted to check out your blog about your ordeal. I think I met you once when we stopped in for a visit in 2003! It’s nice to see the amazing attitude you have about the whole thing and the Bible verses that you feel speak to you in this situation. I pray that you continue to feel God’s (and your parents) strength as you grow and heal.

    Joan (Kinsel) Smith

  17. Hi Flynn – Loving reading your blog. Sounds like you’re doing great. You have such a positive attitude. Keep it up. Give your Mom a hug from me. I’m sure this will be an Easter to remember. Safe travels “home” on Monday. Continuing to send prayers your way.

    Dianne Buirge

  18. Hi Carly,
    We don’t know each other but I heard about your story from Kacey 🙂 I really admire what you are doing and how you are sharing it with everyone – it is not easy to spend time in a hospital, to have surgery, to be in intense pain at times, etc. and you are going through it all with such a strong and positive attitude! I will continue to read your blog and follow your successes – I pray that the outcome of this procedure is everything you want it to be…and more!!! 🙂

    God Bless you and your family,
    Jennifer Thomas

  19. Thanks so much for the update. You are going thru a tough journey – but God gives strength for all our journeys! I miss seeing you on the news at 10 but am thankful you’ve had the opportunity to get this done. Seriously praying for you and your family!

    God bless!

  20. Can’t wait to read your next entry. I wish I had kept a blog while going through a certain experience in my life. It would have been neat for Roxanne to read. This will be a great memory for you, your family and your future family! Stay strong!

  21. Dear Carly, just a quick comment to thank you for letting everyone know how you’re doing. Even though we don’t know you personally, we do have a connection and it is nice of you to keep your audience updated on your progress. It’s so good to see that you have a strong family and they’re there for you at this time. A little bit of suffering now will yield great rewards in the near future. Stay strong! We pray that everything continues to go as planned and you come back to Chattanooga soon. We miss you every night at 10!

  22. Carly, I live in N. Georgia and am familiar with you on our local news. My son-Devan (16 years) old is scheduled to have a leg lengthening and correction surgery on May 22nd. He had an accident in middle school that resulted in a broke ankle with destroyed growth plates in his knee, leg and ankle. He has had 2 small surgeries after his break trying to straighten out lhis eg and ankle to avoid this painful surgery. Due to the destroyed growth plates in his knee, leg and ankle, his legs have grown at different lengths and angles. I heard about your surgery and blog from a friend of mine and it has been a life saver to me. My heart breaks when I think of what Devan will have to go through, but getting to read your blogs has helped me so much. His doctor says he will have to have 2 fixators for at least 3 months and his full recovery will take a year. He is an amazing soccer player and we are praying that he will beat that year recovery and get to return to the soccer field his senior year of high schoool.

    Thank you so much for sharing your story. I am praying for you.

    Please know that your blog means so much to people and gives us hope.
    Jennifer Greene

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