Monday, September 14, 2009

Prayer request

All is going well here. Jack is doing great in his cast...walking, riding bikes and scooters. His aqua therapist asked me the other day, "is there anything he won't try to do?" I'm always thrilled when he's impressing his therapists, especially the veteran ones!


Walking the maze at the apple orchard. He looks very serious because he was concentrating.







Freedom never felt so good!



Look at that determined face.





Riding up the hill.





And some face time for little brother and sister!




Someone asked me if I'm excited for Jack to get his cast off...um, no! I would love to keep it on for a few more months! There is a big risk of fracture in the new bone until it is fully hardened, which takes time. While I LOVE that Jack is walking and bike-riding, I would like to put him in a bubble once the cast comes off, until at least the end of the year! I'm sure that would go over well with him.


We went out for dinner on Saturday and as we were leaving I heard Jack say to my dad, "I want to see her brace." I look over and see a teenage girl with a fixator on her leg!!! Of course I had to go over and say hi to her. Hers was different, more of a rod along her leg than the halos that Jack had. But, it was so neat for Jack to be able to talk to someone else that understands. Of course, my heart lurched when she said her pins were very painful and she knew she'd have trouble sleeping that night. She's a trooper though!


I started this blog months ago in hopes of connecting with other people in similar situations. We were lucky that we found another family that was undergoing a lengthening this summer as well. Yesterday, I got an email from Kelly (the mom) asking me to share their story with Jack's support team. Emma Grace had a leg length discrepancy as a result of a MRSA infection in her growth plates from birth. In July, at 3 years old, brave Emma Grace had surgery to begin her leg lengthening. After her surgery, Emma Grace battled seizures (due to high fever), many infections, and eventually caught the swine flu. We are heart-broken to tell you that Emma Grace passed away this week due to complications from her lengthening. We ask that ALL of our readers and supporters extend their prayers and healing thoughts to Emma Grace's parents, Kelly and Ryan, and her sweet baby sister, Estelle. Kelly and I were there for one another during those months of anticipation so it is important to me that we do what Kelly has asked...spreading Emma Grace's story of heroism and bravery. I know I will always hold a special place in my heart for Emma Grace, a little hero with a hairbow.

7 comments:

  1. I just found your blog via another cyber friend who was also was just fitted with his fixator. I have been in an ilizarov frame for almost 400 days. The frame was fitted first to correct a severe ridged club foot deformity I've had since I was 7, I am now 21. The club foot is secondary to a neuromuscular condition & I also had a developmental leg length discrepancy of 6 cm for unknown reasons (likely from just 1 club foot & a dislocated hip). I've really, really enjoyed reading your blog about Jacks lengthening. I had the surgery to do the osteotomies on my leg at the end of March & it took 148 days to lengthen my leg 60mm due to the fact my bone only grew in at 1/2 a mm a day. I have surgery again in a week to lock down my frame & add some fixation, I can wiggle my broken bone simply my flexing my foot...not good! Once that is over I think I can finally count down to when it comes off. How long was your son in the consolidation period for a 5 cm lengthening? I've been told 6 months of consolidation due to the fact I'm an adult but I am hoping the bone graft I am having done next week will encourage it to heal quicker! I just read your post about Emma Grace passing away, my heart breaks for her family & I must say I am shocked at her very severe complications. Was Jack kept on Prophylactic anti-biotics while he was in the frame or did he only take them if a pin looked icky?

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  2. Oh Heidi, I haven't stopped thinking about your friend. My heart goes out to them. I really hope they find some peace and comfort. I have definitely been holding my own babies a little closer.

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  3. OH Heidi that's so sad. Many thoughts and prayers for Kelly and Ryan.

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  4. You have touched so many lives...our thoughts and prayers go out to Emma Grace's family...

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  5. How awful...Thanks for sharing their story, we will keep them in our prayers.

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  6. Kelly & Ryan please know that there are many people that you've never even met saying a prayer for you right this minute. -M.Wallace

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  7. Heidi, I can't help but know you and Kelly were brought into one another's lives to lift one another up in difficult times. I'm heartbroken for this family I've never even met, but comforted knowing they have you to share in their grief & pass along their story. My deepest & most sincere condolences to Emma Grace's friends & family. I'm sure an angel will always be watching over them!

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