It’s hard to believe it has been a month since Hayden’s surgery. I apologize for not updating this blog until now. I have been leaving updates on my Facebook page. My phone is always at hand and it has been more convenient to update there. I will try to copy the posts to this site. So much has happened since my last blog I am not really sure where I should begin.
I guess I will rewind back to the month of August. Family and friends organized a second successful benefit for Hayden. It was amazing to see so many dear friends and family. Shawn and I were once again overwhelmed by the outpouring of love and support shown by so many. The benefit consisted of trivia, tons of auction and raffles, Rudy’s tacos, and a full bar. It was a fun night. We got to see friends that we have not seen for years. It seemed a bit like a high school reunion. Shawn and I will be eternally grateful to those who helped organize the event, all who came to the trivia night, and everyone who made such generous donations to helping our family. We feel humbled and blessed to now be in a position to not constantly worry about the financial burden this situation brings. Thank you, Thank you!
I will jump forward to mid September. Shawn and I miraculously found a way to cram our entire lives into a midsized SUV. Thanks to a little ingenuity on Shawn’s part we did not have to leave much behind. We broke our drive into two days to Orlando. This is a drive we have been dreading for months. God must have been smiling down on us because Hayden was a perfect angel the entire 20 hours. We could not have asked her to be any better. We spent a few days at Disney World. It was amazing. Hayden had the time of her life…so did we. It was just the distraction we needed as we fast approached her surgery date. Thanks to a former work colleague of Shawn’s we were able to stay at one of the Disney resorts at a large discount. We stayed at the new Art of Animation resort. I highly recommend it to anyone who is planning a trip to Disney. We arrived at the resort mid day and spent the rest of our day at the resort. The next two days were spent at Magic Kingdom. It was not only Hayden’s first trip to Disney but mine as well. I would have to say that her favorite part of the whole experience was meeting the characters. It was the most adorable thing I had ever seen. Hayden transformed into the most angelic little princess at first sight of Cinderella. We hope to make one more visit back before leaving Florida.
We arrived in West Palm Beach Sunday afternoon, the 23rd, and settled ourselves into our condo. Monday was our pre-op day…blood work, x-rays, meeting with anesthesiologist and Dr. Paley. It was this day that reality truly hit both Shawn and myself. That evening Shawn’s mom Peggy flew in to spend the week with us, which was a huge support to all of us. Tuesday was the BIG day. Hayden’s surgery was first thing in the morning. I can’t believe how so much of it is a blur. She went in around 8am and was in recovery around 2pm. I will not go into too much detail as I will try to copy over all my Facebook updates for a more accurate account of the days and weeks to follow.
I will have to say the first 3 weeks were incredibly difficult for all of us. Mostly our little Hayden Grace. She has endured so much…more than any child ever should. She was more accepting of the fixator than I had anticipated. She only asked us a few times for us to take it off. L She now loves to show it off to anyone and everyone. She originally had named it Lion but has recently changed its name to Jake and the pirates. I am sure I will be updating you on name changes in the near future. Shawn and I are much more comfortable with all the care that goes into this fixator now then we were the first couple weeks. Our days are FULL. I have had to print off a day to day schedule of everything we need to do just so that we don’t miss anything. This schedule has been revised multiple times but I think we finally have it down. Therapy has been without a doubt the hardest part of anything Hayden has to do here. The majority of the therapy is not so bad but there are a number of stretches at the end that would easily make a grown man cry. I have no words to describe how excruciatingly painful they are for Hayden. Poor girl has to go through them twice a day. Here is a quick snap shot of Hayden’s schedule. She has a one hour long physical therapy session in the morning at Paley’s office 5 days a week, a one hour long pool therapy session 3 days a week, home physical therapy every night and twice a day on weekends, pin care (which is a whole other horrible thing for her) every day. It seems like the poor girl does not get a break, but we manage to have a few hours throughout the day to play. The PT at the office and home both consist of the stretches that are beyond anything you can imagine. I wish she could just have a day to break from it all but both Shawn and I know that it is the therapy that will ultimately be the success of the lengthening.
Amongst all the painful and difficult things Hayden has to go through she still has managed to maintain her beautiful and happy spirit. For the most part (aside from therapy and pin care) Hayden is feeling good and having fun. She is now walking on her own with no assistance. It is truly an amazing thing to see. We are turning the adjustment screw on her fixator ¼ turn four times a day to equal 1mm each day. Hayden started with her right leg being 62mm shorter than the left (almost 2.5 inches). At this present time we have lengthened her 24mm!!! The most recent x-rays show everything looks great, her bone is developing wonderfully. What an amazing thing to witness. We had her shoe lift shaved down and it brought tears to both Shawn and my eyes.
Well that about brings you up to speed. I will try to get all the Facebook updates downloaded soon. Please keep Hayden in your prayers. She is an amazing, happy and brave little girl. I could not be more proud of her. I love her more than words can say. I look forward to the day this is all a distant memory for her.
The Following are Face book posts since the day of surgery:
Here we are the night before Hayden's surgery. I am not sure I can put into words how I am feeling right now. We have been anticipating and preparing for this moment since Hayden was an infant. My heart aches for what she is about to go through. I love her so much. Although we have talked with Hayden about what will be happening she does not understand it. I guess this is the benefit of doing it a...t this age. She does not have the fear and worry her mommy and daddy do. She is as care free as ever. We will be going to pre-op at 6am. Surgery is scheduled at 8am. We anticipate her to be away from us for approximately 5 hrs. I will try to post updates throughout the day. Please continue to pray for our Hayden and Dr. Paley.
Just walked Hayden back to the OR. Already anxious to have her back in my arms. She is such a brave little girl.
Just updated by the surgical nurse. Hayden is doing good. Dr. Paley has been working on her for about 30 minutes. Prep took about 45 minutes. We should be getting another update before lunch time.
Just spoke with the OR nurse. Hayden just was wheeled out of the OR and is in recovery now. Surgery went fine. She is still sound asleep. We should see her in about 1 hour.
We are in our room now. Hayden is doing ok. She is resting comfortably now since her pain med. epidural is running. We had to leave the narcotic out of the epidural due to her itching from the last surgery. She has scheduled Valium for her muscle spasms. The spasms were the worst of her previous recovery so I am happy to have the med scheduled. We are so relieved the surgery went well. I have already been snuggled up in bed with her. So thankful she is doing ok. Thanks to everyone for the encouraging words.
Sound asleep in dream land. Meet "lion". This is the name she has given her fixator.
I am enjoying some quiet time while Hayden is with daddy and grandma in the play room. Hayden decided to wake up wide eyed around 2:30am. She woke up in good spirits and was wanting to watch movies with me. We were snuggled up in bed together all night. My back is not to happy with me right now. Physical therapy worked with her a bit today. We got her up in the wheelchair. It was hard to see her in such pain and so scared. She has been really content since sitting up in the wheelchair. Plan for tomorrow is epidural to come out in the am and ambulating for the first time. Fingers crossed for just a bit of sleep tonight. Prayers that Hayden has a great night and day tomorrow. She has done such a great job. She's my little warrior.
September 26
First time out of bed. Mommy's tough little cookie!
Hayden and her buddies showing off their fixators.
Hayden's physical therapy today. It was very hard on her but she made us so proud.
September 28
September 28
Off to a good start of the day. Hayden with Dr. Paley and grandma.
Home sweet home! Bringing Hayden home from the hospital today was better than bringing her home as a new born. So happy to have my baby girl home!!
September 28
I feel like I can exhale now. We are back at our "home away from home". This is when the real work begins. Dr. Paley said that the lengthening will begin on Monday. We will do 1/4 turn 4 times a day. We will do pin care once a day. If there are signs of infection it will be 2 times a day. Other parents have said the pin care is one of the worst parts of the whole process. We have Hayden's 1st physical therapy appointment on Monday. I am dreading this. It has been a rough week. It is heartbreaking to see your child endure so much. She has been amazing through all if this. I am so relieved that we have the surgery behind us but I know we have a very long road ahead of us. Plan still remains that we will remain in Florida for the 4 months of lengthening and return home for an additional 4 months in the fixator for the bone to consolidate. We then will come back to Florida to have the fixator removed and a rod placed into her femur. Look forward to 8 months from now. Thank you all do much for all the support. Your encouraging comments are a highlight of our day. Continued prayers for Hayden!
September 29
Pin care sucks :(
We miss you already grandma Peggy. Thanks for all you did for us this week. Love you!!
Hayden has been such a brave and tough little girl. Physical therapy was rough but she WALKED!!! This momma couldn't be more proud.
October 8
I have hesitated posting any updates due to what a rough week it has been. Our daily schedule is quite full. Physical therapy is much harder on Hayden (and mommy) than I anticipated. I should rephrase that. Hayden does well with the majority of the therapy. It is the stretches we end with that seem nothing short of torture. I pray this gets easier on her with time. She has her therapy 5 days a week and than we have to repeat the exercises and horrible stretches at home. We have to do them twice a day on weekends since she does not have therapy. Poor girl never gets a break. It takes every bit of my will power to push on her leg and do these stretches when she is SCREAMING and crying in pain. I have never heard a child cry out in so much pain. I am truly shocked the neighbors have not called the cops on us. We have been working on Hayden taking slow deep breaths through the pain. Poor girl tries so hard. On the positive side of this she calms down as soon as we stop the stretch now. It is easy to loose sight of the ultimate goal. I have to keep reminding myself just what that is. Shawn has been my rock. He has been so amazing through all of this. He is right along side us through it all. He is often the voice of reason. I will not let Hayden see me cry but I have shut myself in the bathroom plenty of times bawling my eyes out. This is not a "pity me" post. It is about what my baby girl is going through. She is enduring so much. I hate that she has to endure at the age of 3 what would make a grown man cry. Thankfully she does have her happy Hayden moments in between everything she has to do throughout the day. As I mentioned before her days are full. PT everyday in the morning, pool therapy in the afternoon, home PT early evening, and bath and pin care before bed. Her bath and pin care take us close to 1 1/2 hours. Pin care is another part of the day which is extremely hard on Hayden. I hope with time I will get more efficient at it and she will be less afraid of it. Hayden is such a courageous little girl. With all she is going through she still loves to play, laugh, and be silly. After doing the most painful stretch we have to do to her the other night I held back my tears and told her I loved her. With tears running down her face she looked at me in the eyes and said "I love you momma". We just held one another. I than excused myself to the bathroom for a good old cry. I apologize if this seems gloom and doom. I am writing this from a very emotional place. I just LOVE her so much!! I don't want her to go through any of this. I pray this all gets easier with time. I realize we are in the thick of it right now. I will end in a positive note. Hayden's leg is now 8mm longer. Woohoo!!!! She does great with her turns. We do four 1/4 turns a day which equal 1mm per day. It is a miraculous thing to see!!!
October 10
Thank you to everyone for all the supportive comments you have posted this last week. Your words are up lifting! After reading many of your posts the other night Shawn said that it was like a form of therapy. It truly is and we appreciate ...you all so much. This will be a challenge for all of us but I am praying in the not so far future I will be posting more positive updates. For now we just push through it giving Hayden all the love we can!
October 10
Hayden is really enjoying pool therapy. I am soooo happy! :)
Hayden the courageous! She is my hero. What an amazing little girl.
October 10
Thank you Tom Reis for doing such a great job on Hayden's new shoes...although we will need to send them back to have them shaved down very soon! 10mm longer today!! Can I get a woohoo!!!
October 11
Shawn and I are still trying to get a consistent routine mapped out for Hayden. Her day is so full. It is hard to fit it all in. I feel like she is not getting enough fun time. We originally were doing her pin care just before bedtime. We w...ere also having to do her home PT in the evening as well. This made for such an unpleasant night for the poor girl. I hated that this was the last part of her night before putting her to bed. We are now trying to do bath and pin care in the afternoon just after PT and pool therapy. I know it makes for a tough first half of the day but I feel she can go to bed more peacefully. We also don't have to drag it all out from the very beginning of the day to the very end. Still is an extremely tough day on her none the less. She now is terrified of PT. She gets herself so worked up worrying about the stretches at the end that she cries the entire 1 hour session we are there. I feel so frustrated, guilty, and sad for her. I want to make it better but simply can not. She cries through exercises at therapy that she does with no problem at home even though we end with the very same stretches. Praying, praying she will get over some of this anxiety. I don't blame her. She has been through so much. During her home Exercises she stopped and said "momma and daddy I have to tell you something... I am angry at you for makings do stretches". Can't really argue that one. Not to worry not long after she told us that we were her best and she loves both of us. Phew! LOVE her so much!!! She has a pin site that I am a bit worried about. The PA wanted us to see what it looks like tomorrow. We may have to start antibiotics. I do not understand it. We have been METICULOUS in our pin care and we aren't even 3 weeks out from surgery. :( everyone always tells us to expect the unexpected. We are starting to wean her down on the pain meds. She still needs something around the clock but not always needing the "hard stuff". She's had lots of fun crafting with her new presents from friends and family. I am hoping we will find more time to do these fun things. She is so pooped from her PT she comes home and sleeps for three hours. There goes the day. She is not sleeping through the night. She will wake up 4 plus times a night. I feel like I have a new born again except she is a sassy and demanding little thing. Just taking it all one day at a time. Working on getting 12 mm tomorrow!!! Good night all.
October 12
All in all a pretty good day! Hayden did a great job in PT today. She started it off tearful and clingy but I sternly nipped it in the bud and she did so much better. Her therapist was very pleased. The stretches will never be easy at therapy or home. I realize the stretches are the most important part of her therapy and ultimately the success of her lengthening. So as hard as it is to do them to her I know we would be harming her more if we did not. She was in a good mood today! It is so good to see her happy and feeling good! :) Her water therapy was cancelled due to the chemicals being off. We took Hayden to the pool here at the condo. She put up a fight at first but ended up having lots of fun. We blinged out her walker tonight and enjoyed home made pizza on the grill. Pretty low key night for the Smith's. Our fingers are crossed that she sleeps through the night. Once again thank you for all the love and support.
Fun day at the kids October fest with the family!
October 22
I am glad that I waited to post now and not the beginning of last week. Hayden really turned the corner the middle of last week! :) The beginning of the week was rough...lots of tears but she has been doing so much better. We are trying out...different therapist. I was sad and disappointed to learn this. I love Carolina! She felt that because Hayden continued to cry throughout therapy (even during the not painful parts) she was associating Caroline with the stretches and all the ouchies. She has recently been doing much better during her therapy. Not quite as anxious. I have come to the realization that the stretches will always be horrible. I really have no words to describe just how hard they are on her. I would rather share with you all the wonderful things that have been happening in Hayden's world. Last week we made a trip to the quantum house. Hayden had fun meeting and playing with fellow Paley friends. The most exciting thing to come to west palm beach is our dear friends from St. Louis. Nancy Holzum and her kids (both in college) have been here showing Hayden the time of her life. They had a pre Halloween party for her last night...we all had a blast. We also went to the turtle rescue and of course the beach over the weekend. It has been such a welcomed distraction for all of us. We will be so sad to say good bye. Hayden has been smiling ear to ear from all the playtime the holzums have been giving her. Her pain has improved. She has not taken pain med in a little over 2 days. We did end up having to go on antibiotics for a pin infection. :( The site is looking much better now. Hayden has gained over 2 cm which is the most exciting news to share!! We had her lift taken down for the first time. It was one of those moments in life that I will never forget. Shawn and I both were holding back the tears seeing it for the first time. It is nothing short of a miracle. Such an amazing thing to see all that we are doing to materialize in a shoe. I remember a wave of emotions the very first lift we got when she was a baby. It was not until we got the shoe that you could really see the large difference along with the rest of the world. I remember struggling with how I felt about it. Now getting to see this lift look so significantly smaller I feel such a rush of emotions. It is so encouraging and exciting to see how far she has come. We will meet with Dr. Paley later today to review new X-rays and her progress. Hoping to get a good report.
October 22
Met with Dr. Paley this evening (after a 4 hour wait). X-ray looked great. She gained 21mm and the bone growth is looking good. Her range of motion is excellent and is right where they want it to be. The range of motion does not come easily...... this girl has worked so hard and shed sweat and tears to get where she's at. So proud of her. As pleased and happy as we are with the latest report we were all sad to say our good byes to the Holzum family tonight. Can't begin to say how much we appreciate all they did for us over the weekend. Held back the tears when giving our farewell hugs. Off to bed. Another long and busy day of therapy tomorrow.
Oct 24, 2012 4:50pm
Love,love pool therapy! Hayden has mastered the ring game.
Love,love pool therapy! Hayden has mastered the ring game.
October 25
Hayden and I had a fun night at the Halloween party at the quantum house tonight. Thank you Girl Scouts for hosting such a spooky party.
