Raising Chickens and Special Needs Kids

[3goodeggs]

Blooie, I find myself checking for updates on your grandkids and on Not-a-farm's grandson, then it occurred to me that we might be intruding on your children's privacy.
Are they okay with this?
I hope Kendra is still recuperating well and that the surgery pain is tolerable for her.

 

[Blooie]

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?

 

[3goodeggs]

Good. I am glad you feel that way.
She is a doll and I am glad you share her.

Have you thought of putting the catheter bag in a backpack like one of those camel packs?
I suppose gravity is an issue, oh maybe like one of those holster packs that the sexy women superhero types wear on their thighs?

I am sure the hospital has dealt with this before. maybe there is another family who has done this recently that can help with shaking out the details.
I think Kendra is a child that needs to be on the move, so this is a very important detail.

 

[TexasLisa]

Blooie, you are an amazing lady! You are warm, funny, caring, and an excellent story teller. I am honored to be your friend. I have just one question for you: What are you going to do when the lot of us show up on your doorstep???

 

[3goodeggs]

I think as long as we bring the BBQ and beer she's good!

 

[Blooie]

Blooie, you are an amazing lady! You are warm, funny, caring, and an excellent story teller. I am honored to be your friend. I have just one question for you: What are you going to do when the lot of us show up on your doorstep???

Nah, there's nothing special here. Nothing that millions and millions of other parents and grandparents don't face every single day. They just do it more quietly than I do!

But thank you for the kind words. I'm glad you are my friend, too!

I think as long as we bring the BBQ and beer she's good!

Pretty much!

Good. I am glad you feel that way.
She is a doll and I am glad you share her.

Have you thought of putting the catheter bag in a backpack like one of those camel packs?
I suppose gravity is an issue, oh maybe like one of those holster packs that the sexy women superhero types wear on their thighs?

I am sure the hospital has dealt with this before. maybe there is another family who has done this recently that can help with shaking out the details.
I think Kendra is a child that needs to be on the move, so this is a very important detail.

I'm making her a little pee-pouch. The doctor was very specific about Jenny keeping Kendra down, not letting her be real active, and definitely no crawling or walking. Jenny said Kenny just looked at him and reminded him that Kendra isn't like a lot of other kids with Spina Bifida that he treats - she's not the content-to-sit-in-a-wheelchair-and-watch-TV kind. He said she's more the "Wake-up-pull-off-diaper-crawl-into-the-kitchen-stand-up-walk-over-and-climb-in-the-chairing kind." She's discovered turning sommersaults. She sees what she wants or needs and just goes to get it. If I'm not fast enough to get her jacket so she can go outside and walk in her walker I'm liable to find that she's gone out there without me and is standing on the top step of the deck trying to figure out how to get down by herself. Yeah....I think keeping her virtually immobile for 3-4 weeks is going to be the toughest part of this whole thing - for all of us!

So if she's spending as much time in her chair as she's supposed to, the pee-pouch will just hang over the back and below the level of her newly repositioned bladder. It'll be adjustable so it can also hang around her like a fanny pack. Her bladder is now almost at the level of her belly button - just a little lower - so that should work.

 

[FridayYet]

Hopefully soon they'll start letting her cap the catheter for a few hours a day so she can have some freedom! It's part of her badder training, but I'm not sure how soon after the operation they'll start - depends on your hospital's protocols.

 

[Blooie]

Hopefully soon they'll start letting her cap the catheter for a few hours a day so she can have some freedom! It's part of her badder training, but I'm not sure how soon after the operation they'll start - depends on your hospital's protocols.

They haven't said anything about that, @FridayYet I'll have to ask Jenny about that when I talk to her next - and if she doesn't get off her hiney and Facetime me pretty soon I'm liable to WALK to Denver! I know for right now she's on a "continous drain" so her bladder doesn't fill, and she's been on Oxybutinin to control bladder spasms for a couple of years now. See, that's another reason I post stuff on here - I learn too!!

 

[FridayYet]

Once she's healed enough, they'll need to let the bladder fill up and get used to being "full" again. The process can take a while, and the Oxybutinin really helps. They'll start by capping the cath for a little while, then longer and longer, often keeping the drainage bag for overnight.

The actual cath through the channel will stay in for quite a while until the Mitrofanoff totally matures.

ETA: I'm glad Kendra is doing so well! I totally understand that urge to go to Denver when a piece of your heart is there!

 

[Jessimom]

They haven't said anything about that, @FridayYet I'll have to ask Jenny about that when I talk to her next - and if she doesn't get off her hiney and Facetime me pretty soon I'm liable to WALK to Denver! I know for right now she's on a "continous drain" so her bladder doesn't fill, and she's been on Oxybutinin to control bladder spasms for a couple of years now. See, that's another reason I post stuff on here - I learn too!!

Ok, bladder spasms isn't something I've heard of. What effect do they have? Will this procedure they did get her off the medication?

I love how positive you are all the time! That is one thing I've found in the special needs community, very few people ask "why me". Yes, we want to take all the pain and suffering away from our special children/grandchildren, but I for one would not want anyone other than my daughter. For EVERY negative issue with her, there are TWO that are positive.

I am SO lucky that Jessica has not needed any surgeries. All her hospital visits were seizure related. We had to do a 48 hour EEG when she was 3. You try to keep a 3 year old in bed, quiet for 48 hours. So, I can totally understand the obstacles you all are facing with Kendra - who seems to be so full of energy!!

I wish you the absolute best!