Raising Chickens and Special Needs Kids

[Blooie]

That is incredible Blooie!!! She is an amazing little girl!!!!

Thanks! She sure is!! So are Jessi and Richard and Caleb and Grace and all of the other kids we've been honored to get to "know" - (I just can't remember all the names off the top of my head, although I know who they are and who they belong with! Just getting old, I guess!

 

[Kiki]

How exciting for you both!
Congrats!!

 

[Blooie]

Got a couple of "growing up" videos for you.....In the first one Kendra has finally learned to get in the van and into her car seat by herself. When I first started teaching her I praised the soup of out of her every little step along the way. Now we just praise her when she's done - we want it to be just another one of those things she's expected to do for herself. At one point the footrest on her wheelchair gave way and she dropped, but all she said was "Wooo" and she kept right on going!

In the second one, she was playing in the living room and stood on her head - with her hands behind her back. Then she headed for the couch and started using it for a trampoline! I know I should probably have stopped her from jumping on the furniture, but I didn't and I won't.

 

[Cynthia12]

Darn, I can't see the videos, but I can hear your cute voices. Richard is at the hospital right now to hopefully get that stone out. I am only 6 days out from having a surgey myself so he spent the night here last night and my husband took him this morning. Here is a cute photo of my mountain man with our Ziggy greeting him. That dog loves it when he comes over. He gives hugs. Getting old, not sure how much longer we will have him with us, so the photos I got of him and Richard are keepers.

 

[Cynthia12]

Tried to put another one on. Strange, when I click on it, it takes me to a photo I must have posted of him as a newborn. What? Oh well, that photo above is my favorite.

 

[Jessimom]

Darn, I can't see the videos, but I can hear your cute voices.

Richard is at the hospital right now to hopefully get that stone out. I am only 6 days out from having a surgey myself so he spent the night here last night and my husband took him this morning. Here is a cute photo of my mountain man with our Ziggy greeting him. That dog loves it when he comes over. He gives hugs.

Getting old, not sure how much longer we will have him with us, so the photos I got of him and Richard are keepers.

What a great photo!!! I hope the stone is easy to get out,and that it's not too invasive!! Also, my thoughts will be with you as well!!! I hope your surgery goes smoothly and you are home soon!! Keep us posted!!!

 

[Cynthia12]

Hey Jessi thanks! I worded that wrong I guess..I have had my surgery..6 days ago.....

I am doing pretty good!

But, Richard, not so good. The dr. called me. Says that he doesn't normally .. tell..someone they need to have something done. Richard's bladder is lined with stone, and has gotten very very small. Is probably only holding 3 Tbs. of urine at a time, if that. He says that Richard needs to go to Salt Lake and see a dr...he recommended one. He needs a Bladder Augmentation. Using the small intestine, will build up the bladder to be larger. Haven't traveled up that far since Primary Children's Hospital..this Hospital is right behind the Children's. Richard won't know all of this until he gets home from the hospital. I asked my hubby just to tell him it was like last time, couldn't do much, and that the dr. called mom, and mom would talk with him. Best let that Anesthetic wear off. I want him to understand. I already made the appt. Just to see the dr. After talking with the gal on the phone and hearing how things are, she says she will call me if there are any cancellations...May 30th. Or, if after the dr. sees the results of today's procedure and outcome, and decide he needs to be seen sooner, she will call. The dr. told me that if Richard doesn't get this done soon, he could go into renal failure. Hmmm..makes sense to me. It keeps closing off, more and more with time. :/

 

[Jessimom]

Hey Jessi thanks! I worded that wrong I guess..I have had my surgery..6 days ago.....

I am doing pretty good!

But, Richard, not so good. The dr. called me. Says that he doesn't normally .. tell..someone they need to have something done. Richard's bladder is lined with stone, and has gotten very very small. Is probably only holding 3 Tbs. of urine at a time, if that. He says that Richard needs to go to Salt Lake and see a dr...he recommended one. He needs a Bladder Augmentation. Using the small intestine, will build up the bladder to be larger. Haven't traveled up that far since Primary Children's Hospital..this Hospital is right behind the Children's. Richard won't know all of this until he gets home from the hospital. I asked my hubby just to tell him it was like last time, couldn't do much, and that the dr. called mom, and mom would talk with him. Best let that Anesthetic wear off. I want him to understand. I already made the appt. Just to see the dr. After talking with the gal on the phone and hearing how things are, she says she will call me if there are any cancellations...May 30th. Or, if after the dr. sees the results of today's procedure and outcome, and decide he needs to be seen sooner, she will call. The dr. told me that if Richard doesn't get this done soon, he could go into renal failure. Hmmm..makes sense to me. It keeps closing off, more and more with time. :/

I'm glad you are doing pretty good. I'm so sorry to hear about Richard. I think you mentioned this before - do you make Richards medical decisions or does he make them himself? Something like this NEEDS to be taken care of, but I can imagine with one thing after another - if he were to refuse something like this, would you be able to override him? Would you want to? I ask because Jess turns 18 next month - so we are trying to set up a conservatorship. Also, how far a drive is it? If they are waiting for a cancellation for a first consultation - how many trips will you need to make? And how far apart will they be? It's too bad that they can't review the tests and then just schedule him. I hope that you are able to get in to see them soon!!!

We are lucky. Most of Jessica's specialists are on the same campus. We go down to UCLA Children's hospital area - the specialists are all in the same block of buildings. Her eye specialist is across the street, and her nephrologist and neurologist are on the same floor, just a different aisles. It's about 40 miles away. It's part of the school, so it's a teaching hospital. It's nice that all her medical records are available to any doctor on the network, so I never have to request files or get copies of tests etc. Her pediatrician is local. As is the Orthopedist we took her to. I wasn't happy with the last ortho visit, so our next neurology appt - I'll ask for a UCLA referral. The drive can sometimes take 2 hours to get there, but it's worth it. Getting home is always worse, because we take her after school, so we are coming home during rush hour.

Again, I'm so sorry to hear that Richard is going through this! I hope that he can get this taken care of quickly and it is a fast recovery!!!

 

[Blooie]

Well, I just don't even know where to start. I feel terrible that Richard is facing this! We were worried that Kendra would need bladder augmentation when they did her MACE and Mitrofanoff procedures but they said her bladder was more than adequate. All we can do is hope that it stays that way. I know you said he'd had previous procedures but kinda wondered if they could do a Mitrofanoff while they do the augmentation? It has eliminated bladder and UTI issues for Kendra so far and they told us that her risk of subsequent UTIs is now no more than any person without a disability. Just a passing thought. Please know that he and you are in my thoughts and prayers and keep us updated.

Sometimes I think it's almost easier for us because Kendra understands so little. We just kinda do what we gotta do and she goes with the flow. That's just the reality of it. Richard has been on his own, has all of his independent thinking cemented, and has made many of his decisions himself. I can see where he might balk at another surgery. We'll be waiting to hear.....and let's hope there is a cancellation so this can get done sooner rather than later.

Jessimom, you are so smart to be thinking of medical conservatorship. Kenny and Jenny haven't even begun to think about the future - just trying to get through one day at a time is a struggle for them at times. Kendra's doctors are all on the same campus too, at Children's Hospital in Denver. But I think the difference is when they are "legally" adults...isn't there something where once they turn 18 they aren't able to use pediatric facilities or did I mishear something?

 

[Jessimom]

Well, I just don't even know where to start. I feel terrible that Richard is facing this! We were worried that Kendra would need bladder augmentation when they did her MACE and Mitrofanoff procedures but they said her bladder was more than adequate. All we can do is hope that it stays that way. I know you said he'd had previous procedures but kinda wondered if they could do a Mitrofanoff while they do the augmentation? It has eliminated bladder and UTI issues for Kendra so far and they told us that her risk of subsequent UTIs is now no more than any person without a disability. Just a passing thought. Please know that he and you are in my thoughts and prayers and keep us updated.

Sometimes I think it's almost easier for us because Kendra understands so little. We just kinda do what we gotta do and she goes with the flow. That's just the reality of it. Richard has been on his own, has all of his independent thinking cemented, and has made many of his decisions himself. I can see where he might balk at another surgery. We'll be waiting to hear.....and let's hope there is a cancellation so this can get done sooner rather than later.

Jessimom, you are so smart to be thinking of medical conservatorship. Kenny and Jenny haven't even begun to think about the future - just trying to get through one day at a time is a struggle for them at times. Kendra's doctors are all on the same campus too, at Children's Hospital in Denver. But I think the difference is when they are "legally" adults...isn't there something where once they turn 18 they aren't able to use pediatric facilities or did I mishear something?

Hi Blooie - I feel the same about Jessica - she doesn't think that she's different. She doesn't understand the negatives that we see around her. And she just does and goes where we want her to go. We were told by the school district that when she turns 18, we can no longer set goals or be part of her IEPs without the conservatorship. Same with new doctors - the ones that she sees all the time will still treat us the same as before. But new doctors - or the ER - they won't listen to us. If she said no, they can't do anything. Also, it's something we can't even apply for until she is 18. So, I paid someone to get it all ready and to help us with it. The folks that we paid to do this have been hard to get in touch with - our local contact left the company. And the time change has created problems. They are putting together a workshop tonight about the CalABLE program here locally - that will allow the over 18 folks keep a higher bank balance than the Feds allow. They said they will answer any questions I have about our issues before or after this workshop. Fun stuff. I'll be sure to send you any info I find.