Raising Chickens and Special Needs Kids

[NotAFarm]

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.

My daughter and SIL know I am keeping my BYC friends updated....just like they are keeping their college, work, personal friends updated. If one person can learn something that will help them recognize a problem early-on because of what Kyle is going through, the kids will know that his trials are making a positive difference for some one. They have posted his saga on fbook and because they did, a college friend posted about a boy on her block, just last year, that had a Wilms Tumor that was Stage 4. One year later he is cancer free and healthy. That gave them great hope, even before the pathology on Kyle came back. I've always hated fb but when all this happened and my DD was trying to message a zillion people, I told her to post it there. The more people knowing and praying the better!
Sharing our burdens is what we are suppose to do. Helping each other is what we are suppose to do. Lifting up, not tearing down, is what we are suppose to do.

Ditto what @Jessimom said about the community of people that are involved in some way with children (and now for us, adults) with disabilities. They are great! I have a niece born with Cerebral Palsy and a 30 year old son with Down Syndrome. We know how important support is from our experiences with them.

@Blooie
Quote:
There can never be too many prayers!!

 

[sourland]

"The more people knowing and praying the better". This ! We all can call for help and offer support. This is a great community.

 

[Blooie]

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!

The bladder contracts to empty. As the bladder slowly fills, it sends a message to the brain and the brain says,"Well, don't tell me your problems - get rid of it!" At least that's the way it is for most of us. For people with bladder issues it tends to suddenly spasm when there's even a small amount of urine in there, and that causes pain and leakage. That's kinda oversimplified because there are lots of little nuances in there, but that's basically it. The Oxybutinin calms the spasms and allows her bladder to fill more like it should. We are going to want her bladder to learn to "hold" a larger quantity of urine and since Kendra has very limited nerves to her bladder, she can't control the "need to go" urges - she can barely feel them. That "bladder to brain and brain back to bladder" communication isn't there. So the goal is for the timed catheterizations to empty her bladder. That will mean very few (we hope, no) accidents. We've been cathing her 5x a day for 4 years - this surgery will just make it so much more convenient for us, and it'll be easier for her to learn to do it herself. With us cathing her and her taking the Oxybutinin, she has very few accidents. Bowel and bladder problems could be huge social issues for her as she gets older....school and other events make it essential that we take that embarrassing possibility away.

And I'm not positive all the time, believe me! Around here we've developed sort of a teeter-totter.....seems when one of us is overwhelmed and down, the others are "up" and can help pull the "gloomy gus" back to an even level. It just works out that way and that's a good thing!

Kendra is a fireball! Got forgot to tell her she's disabled and we aren't gonna tell her, either. We push her to edge of what she can do, hold her there and when she steadies we push some more!!

 

[Blooie]

"The more people knowing and praying the better". This ! We all can call for help and offer support. This is a great community.

Amen!

Yesterday's FaceTime photos of Kendra: I don't know how most 4 years old look 72 hours after major abdominal surgery, but this is what ours looks like!

@FridayYet I remembered to ask Jenny about capping off the catheter. She said they gave her a schedule for that....start with an hour, then work up.

Silly Kendra


Serious Kendra


"Woe is me......"



"Yo - you talkin' to me?"




As long as she has her hat, everything is good!


Just plain cute!


"I said "NO!"


She is doing so well!!

 

[Tumbling K]

Love the pics Blooie!!

She's a fireball for sure.

Seeing pics like that warms my heart.

 

[sumi]

Finally got round to catching up. I can't believe how well she's doing! What an amazing little inspiration of a girl

 

[FridayYet]

Thanks for sharing the pics- Kendra looks awesome!!

Glad she's able to be "unhooked" from the bag periodically- it will give her more freedom to move more normally. Hope her Uro visit goes well tomorrow!

 

[Bunnylady]

Aww.

Thanks for sharing the pics, Blooie - they put a smile on my face this morning. Continuing to pray that she continues to confound all with her progress!

 

[3goodeggs]

 

[Blooie]

Just got a call from the kids...the ecstatic, thrilled kids! Kendra's urology check up went great! In fact, she's healing so fast that Dr. Wilcox, her surgeon, called another urology surgeon in to have a look at her and asked him, "Have you ever seen the like?" They are amazed.

So tomorrow the kids and Kendra come home. She's scheduled to go back down to Denver for another checkup and to get the catheter tube and bag removed. That will be June 27th. Woo hoo! This morning they decided they were tired of hotel breakfast fare and went out for breakfast. I guess Kendra has decided that this is her new look and she's sticking to it - wears it everywhere! That's okay, she kinda rocks it! Her and that hat.

Katie says she's a "cowboy diva". Okay, that works.