That is wonderful! I'm glad they made it home! Have a wonderful evening!The kids are home, and life is returning to normal. She missed us as much as we missed her!
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That is wonderful! I'm glad they made it home! Have a wonderful evening!The kids are home, and life is returning to normal. She missed us as much as we missed her!
Thank you so much!! They shot a lot more footage that day, and I found out they are going to do another video. We had fun shooting it. The lengths you went to with helping get the splash park installed is AMAZING! We have one of those here in my town. Water is only turned on from Labor day to memorial day. They were getting ready to build a new playground, I got the city council to talk to Shane's, they tried to get something going, but there were other people that had friends in higher places, and the park they built is accessible, but it's 1/3 what it could have been if they had partnered with Shane's. It's sad how politics work.I just sat here and watched two of the most inspiring, humbling videos it has ever been my honor to watch. @Jessimom you and your lovely daughter did just great! I could hear the pride and the love in your voice, and I would have done the exact same thing you did when she said, "Thank you". I would have just let her words say it all, and you did! Being in a very small town, in a sparsely populated area, I doubt seriously if we'll ever have a "Shane's Inspiration" playground here.
I was on the town council here for 4 years. I had to miss two meetings to be down in Denver with Jenny when she and I lived there for 6 weeks, waiting for Kendra to be born and then after her spinal surgery. One of the things we accomplished was to build a new Splash Park here in Cowley. It's an amazing place, and just being part of the council allowed me input into the design and setup. Oh, I know that any advocate for kids with disabilities could have done that, but being so close to it from the inception to obtaining the funding probably put me in a unique position. And we did it. It opened last summer. And guess who was one of the first kids to try it out .....I have a video of that somewhere. She wasn't sure at first, but as the day went on she just unlocked the brakes on her chair and took off. The camera was put away by then so I could focus on her, but she really didn't need me. If a feature was too intense, she just moved! Every feature of the park is 100% accessible. I need to go find that video and upload it.
How fun! I see her feet turn in. Richard's are like that too, only his left foot is worse than the right. He was wearing the cables for a long time. He doesn't any more. His shoes tend to keep them straight along with the foot rest on his chair. When he's bare foot, there goes the left foot.
Jessi..that was beautiful.
My son can see the difference in how..things could be. Not just mom, not just dad. But he can. He can in a way. He never could walk right, and now, he never walks at all. So, he doesn't know .. how..that feels, he just see's how it could be. He has spent more than 50 times in a hospital, lost count at 35 when he was in High School..I just stopped counting. He's had several surgeries after he left home. He knows, it will never stop. There is always, another time. Used to it they ask? What in the world can I say back? I just look at those that ask that question. Then I say. Someday he will walk. Someday he will be perfect. Maybe not in this lifetime, but someday. I suppose he is used to it, in his body, but in his mind? I have heard some wishful thinking come out at times. I'm just happy that he also knows, that someday, he will walk, and even run.
Awww, I'm so sorry that Kendra is facing so many surgeries! I'm so happy to hear the shunt surgery isn't necessary - I hope that hold true in the future!@Jessimom Kendra is looking at a lot of surgeries in her future. We'll tackle them one at a time. We know her major abdominal surgery will be first, this summer sometimes. Next she'll begin the long process of getting those shin bones straightened. The one we feared the most, the shunt surgery, hasn't been necessary. Not many kids with Spina Bifida are that lucky. I think it's something like only 6% get by without it, isn't that number about right, Cynthia? Well then, how blessed are we to know two who haven't had to have it - Richard and Kendra!! And the older they get without needing it, the less likely they are to ever need it.
Kendra's left foot is her worst one too. They are taking her out of the upper portion of her braces (the cables) and just going with her AFOs. They are concerned that as hard as they have to be torqued to keep her feet straight for walking, they are going to throw her hips out of whack and undo the progress in her spine. When her feet turn in, she literally trips over them when she tries to walk. She doesn't trust the AFOs. Her confidence in the walking process plummets and she totally stops trying. But then I remember that the walking is temporary anyway. By the time she's in her teens she'll be in the chair full time. So why put her through all the stuff she'd need to go through to walk, and then have her lose that ability anyway? Makes no sense sometimes. But this time spent weight bearing has worked wonders with her back - minimal tethering so far and the scoliosis that was so clear on her x-rays several months ago is so negligible now that they said they can no longer even call it scoliosis. So in that respect it's been invaluable.
Gotta share a funny - Ken and I were in the mall a couple of weeks ago on a sunny day when temps were in the 60s. We hit the food court for a quick bite to eat and sitting across from us was a young couple with the most adorable little baby girl. She was probably about a year old, wearing a little corduroy pair of bib overalls and a striped shirt. So doggone cute! Big brown eyes, bouncing curls, smiling at everyone, animated and just plain happy. But I kept looking at her and something seemed off. It took me a long time to figure out what it was about her that I kept going back to, then it hit me. It was her bare, chubby little pink feet. They weren't pointing in with one toe on each foot hiding under the others. To me Kendra's feet are the norm - anything else looks out of place and, well, deformed.
She already hates doctors, nurses, hospitals, and getting her on an airplane is awful! She starts crying when the car pulls into the airport parking lot, and doesn't stop until the plane takes off. I can't distract her, can't console her - all she knows is that at the end of that plane ride is another hospital. (I fly with Kendra to her appointments at Shriner's in Salt Lake City.) She is okay in flight, and when we get off, but it's that initial getting there and then the waiting. When I pick her up her little heart is just thudding. Breaks my heart. Her regular Spina Bifida clinics are in Denver, and the kids drive her down for those, although when she has her tummy surgery this summer Jenny and I will be living down there with her for that 3 weeks to a month. We don't know if she'll have any complications and have to stay longer, so Kenny can't go with them. Hard to ask for time off at work because when they need to know when he'll be back they frown on, "I don't know, could be 3 weeks, could be longer." for an answer.
Let's here it for the families who sweat, laugh, cry, advocate and serve as cheerleaders for these amazing little (and big) people. We are all incredible, and our kids are beyond anything we could have asked for!!