Eggsie, you can't intrude if we don't post, right? Ergo (that's my fancy word of the day) you are very welcome to follow Kendra, Katie, and Evan. The kids are fine with it too - I told Jenny that people from the states and some other countries of the world were praying for Kendra and she just laughed and asked where.....I said, "Well, South Africa, Ireland, Great Britain...." and she interrupted me and laughingly asked, "Nobody from Antarctica bothered?" I can't speak for any of the other families who post here on the Special Kids thread, or for Kyle's family, but I'm sure they feel the same. Between friends and family, the people here and those on the other very special forum I visit, Kendra had a wealth of prayers.
There is so much power in one prayer - having so many more certainly helps. And it also helps having a place where I can raise awareness of what these kids go through. I mean, when most of us see a child in a wheelchair, the thought flashes through, "Wonder what happened." and then we walk on - and that's if we even notice the child. And that's if we think anything at all - usually we don't. That's not a criticism - that's life. We all do it. We don't wonder how they get rid of waste products, or how many different things have to come together perfectly for them to take a step, or form a sentence or even eat a meal. But after getting to know Kendra, Katie, Richard, Jessi and Caleb and all of the other kids who are the stars of this thread, you realize the next time you see a little one with a disability of some kind that there are people with a story there, and they want - they LOVE - to be acknowledged and heard. Kendra is a little doll, there's no denying that. If folks never saw the chair or the braces or the walker they'd never in a million years suspect that her life is so complex at such a young age. I dunno, I guess some families with kids who face serious health issues want their kids NOT to be noticed - to be like every other kid. That's just not our family. We want Kendra - ALL of Kendra - to be acknowledged.
Kendra was discharged from the hospital yesterday. Unreal to all of us!! The kids will stay in Denver for a few more days - she has to go up the urology floor once a day so they can check her incisions, then on Monday she has a full clinic. They may stay one or two more days, until Jenny is totally comfortable doing the MACE flush. That first one can't be done until a week after surgery, which would be Wednesday, but if she has good instructions she could do that first one here at home. Just depends on how comfortable she would be doing it the first time without supervision. She's already been flushing the Mitrofanoff and told me it's easy as pie. Yeah, I'll believe that the first time I get my hands to stop shaking long enough to do it myself! That's how she's learned - they just gave her the stuff and walked her through it while she did it.
Haven't heard anything from them yet to day, so I'm assuming that they are busy and that things are going well. Last night when she called from the hotel she said she was having a hard time figuring out what to do with the catheter bag. There's a catheter that goes into her belly button and the tubing goes into a bag, exactly like what is used in hospitals. Kendra can't crawl anymore - she would get her legs tangled in the tubing and could pull the catheter out. Same with walking. So right now she's relegated to laying down or being in her chair, and she's not liking that one bit. Jenny ended up propping her up in bed with some of her toys, looping the catheter tubing between the mattress and box spring, and then letting the bag sorta dangle there. That will be our new norm for the next 3-4 weeks. We just empty the bag from time to time since it's a continual drain. I took a screen shot of her belly but not sure how to crop it to share it. It's easier to picture it than it is to explain it. But I'll have to find a way to crop it since Kendra is laying with possibles exposed. (Don't know about possibles? Well, when you had to take a bath in the kitchen in a washtub in a house full of people, with only a towel draped over a rope, you sat in the tub and washed up as far as possible. Then you washed down as far as possible. Then you moved the towel down slightly, stood up, and washed possible.)
I love that so many people have gotten to know Kendra. And I hope that next time someone says the words, "Spina Bifida", those words will mean so much more than a condition - it will mean a little person with huge potential! If that happens, we've made a difference. And isn't that what we all want the chance to do?
Edited by Blooie - 6/5/16 at 6:16am