Raising Chickens and Special Needs Kids

[sdubski]

@BlooieThanks! That's wonderful that she's not scared anymore when her mom drains the Foley and wasn't too traumatized These kids who go through so much are very resilient, aren't they? Hopefully when the swelling goes down, they will be able to cath easily without pain. The MACE is so great, isn't it? It was absolutely life changing for us.

We don't have to worry about the Mitrofanoff for a couple more years, but I will definitely remember your experience if we have trouble.

We stayed at Ronald McDonald House for a few days after discharge from the cecostomy surgery to make sure that everything was healing well. Grace had temporary ileus and an infection around her incision so was hospitalized for a week. Hoping the Mitrofanoff recovery goes more smoothly, even though it's a more complicated surgery.

She's doing great right now! Here are a few pictures I took for her birthday invitations of her with her favorite Lavender Orpington pullet (we hope) named Periwinkle

 

[TexasLisa]

What a beautiful girl Grace is! Is her hair naturally curly?

I am going to say that looks like a pullet to me.

 

[Cynthia12]

@Blooie Thanks! That's wonderful that she's not scared anymore when her mom drains the Foley and wasn't too traumatized

These kids who go through so much are very resilient, aren't they? Hopefully when the swelling goes down, they will be able to cath easily without pain. The MACE is so great, isn't it? It was absolutely life changing for us.

We don't have to worry about the Mitrofanoff for a couple more years, but I will definitely remember your experience if we have trouble.

We stayed at Ronald McDonald House for a few days after discharge from the cecostomy surgery to make sure that everything was healing well. Grace had temporary ileus and an infection around her incision so was hospitalized for a week. Hoping the Mitrofanoff recovery goes more smoothly, even though it's a more complicated surgery.

She's doing great right now! Here are a few pictures I took for her birthday invitations of her with her favorite Lavender Orpington pullet (we hope) named Periwinkle

What a doll! Richard also had a tumor removed when he was born, (but I was not aware of this, not told) right from the open area where the spinal cord was protruding. Long story short, when he finally ended up at a children's hospital, the neoro surgeon there was in disbelief at how this was done/handled by the neoro at the hospital where he was born. His tumor was called a Lypoma tumor. Very common, non cancer. I remember when he had another surgery, the spinal cord release, he's had many, they went ahead and took out the tumor. The neoro was asking me if the first dr. ever discussed with me that he had a tumor in there at birth..nope. :/
Anyway, you said that these kids are resilient. Yep, had a nurse say, the kids that come in with birth defects, versus the kids that come in for tonsils to be removed, sure act different. They are so used to going through the procedures, and the pain, they just endure better than a child that hasn't had to go through so much. Pretty sad. But, glad that they can be more relaxed .. it helps.

 

[sdubski]

What a beautiful girl Grace is!  Is her hair naturally curly? 

I am going to say that looks like a pullet to me.

Thank you!

Yes, we just spray her hair with water and brush it and it looks like that. I wish mine would do that, lol!

We have five Lavender Orpingtons. Two look like this, and three are larger with bigger combs and wattles. Really hoping all three aren't roosters!

 What a doll!   Richard also had a tumor removed when he was born, (but I was not aware of this, not told) right from the open area where the spinal cord was protruding.  Long story short, when he finally ended up at a children's hospital, the neoro surgeon there was in disbelief at how this was done/handled by the neoro at the hospital where he was born.  His tumor was called a Lypoma tumor.  Very common, non cancer.  I remember when he had another surgery, the spinal cord release, he's had many, they went ahead and took out the tumor.  The neoro was asking me if the first dr. ever discussed with me that he had a tumor in there at birth..nope.  :/  
Anyway, you said that these kids are resilient.   Yep, had a nurse say, the kids that come in with birth defects, versus the kids that come in for tonsils to be removed, sure act different.  They are so used to going through the procedures, and the pain, they just endure better than a child that hasn't had to go through so much.  Pretty sad.  But, glad that they can be more relaxed .. it helps.

Thank you!

Wow! A tumor would be something I would think that you would be told about right away. Glad they were able to remove it and that it was benign. He looks like he's doing well from the picture you just posted!

Grace's tumor was called a type III sacrococcygeal teratoma. It's a rare type of germ cell tumor. It was diagnosed at seventeen weeks gestation, and we had to move to be closer to a hospital that could handle her case. The tumor was removed before it became cancerous. Teratomas that are not removed right away often become cancerous. There is also a high rate of recurrence before age five, so she still sees oncology regularly for blood tests and MRIs. The next MRI is in mid August.

Grace tells the phlebotomists how to draw her blood. "You have to tie the blue rubber band on my arm, and don't forget to wash the germs off with a wipe. Just a little poke, NBD, then I get a sticker AND a sucker." She never lets them forget the sucker

Grace also has a Teddy bear from an organization called Tubie Friends that has a cecostomy button just like she has. She flushes Bonnie's tube when we do hers. It's a great organization. They will mirror your child's medical equipment on the bear. They rushed Grace's bear when her cecostomy surgery was moved up two weeks and there is no cost unless you want to donate. http://tubiefriends.com

Here is Grace flushing Bonnie's tube at Ronald McDonald House a week after surgery. How she could sit like that with a three inch vertical incision in her belly is beyond me! These kids are tough!

 

[Cynthia12]

They are tough little ones for sure.
Blooie said that Richard isn't shy. He isn't now! He was then. Or, he just hushed up and put up. I think it was more the latter. He just let them do what they did. He was born in the 80's, and I didn't have an Ultra sound before I had him, even though I told the dr. that I felt uncomfortable..different, at 5 months along, then I had to have labor stopped a few times during the 7 month. Still, no Ultra sound. Things sure are different today.
We stopped counting Richard's surgeries when we got into the high 30's, when he was 17. He's probably had three times that many since. Still needs surgeries for infections that are going on. Plus, he got a huge blood clot from his knee all the way up to the top of his thigh a couple of yrs. ago. He is in a wheel chair. He knows what a really swollen leg and foot means now. He knows what to watch for.
Bless your heart. Watching for that type of tumor.... :/ Richard used to have the MRI's on a reg. basis for the spinal cord getting tight. That was the main reason he had to go to a wheel chair. It had been released many a time, which helped into his teens. Big upper body, smaller lower body, and the spine not being as straight as normal. He loved finally getting into the chair. He had struggled with the arm crutches for years. He's much more independent now than he was towards the last few yrs. of arm crutches.
Good luck with your little dolly. We just do what we have to do don't we? And, it's all worth worry. All worth it.

 

[Blooie]

I've been trying all evening to order a TubieFriend for Kendra,and make an additional but can't seem to get the application through. It keeps telling me that I haven't completed all required fields (I have) and that the capcha I've entered is incorrect. Then I tried to send them an email and I can't even get that form to come up. Doggone it, it's become a quest now! I WILL get one of these for Kendra and donate for other kids if it kills me!!

 

[sdubski]

They are tough little ones for sure.
Blooie said that Richard isn't shy.  He isn't now!  He was then.  Or, he just hushed up and put up.   I think it was more the latter.  He just let them do what they did.  He was born in the 80's, and I didn't have an Ultra sound before I had him, even though I told the dr. that I felt uncomfortable..different, at 5 months along, then I had to have labor stopped a few times during the 7 month.  Still, no Ultra sound.  Things sure are different today.
We stopped counting Richard's surgeries when we got into the high 30's, when he was 17.  He's probably had three times that many since.  Still needs surgeries for infections that are going on.  Plus, he got a huge blood clot from his knee all the way up to the top of his thigh a couple of yrs. ago.  He is in a wheel chair.  He knows what a really swollen leg and foot means now.  He knows what to watch for.
 Bless your heart.  Watching for that type of tumor....  :/        Richard used to have the MRI's on a reg. basis for the spinal cord getting tight.  That was the main reason he had to go to a wheel chair.  It had been released many a time, which helped into his teens.   Big upper body, smaller lower body, and the spine not being as straight as normal.   He loved finally getting into the chair.  He had struggled with the arm crutches for years.  He's much more independent now than he was towards the last few yrs. of arm crutches. 
Good luck with your little dolly.   We just do what we have to do don't we?   And, it's all worth worry.  All worth it. 

Richard does seem to be very independent and outgoing. I was born in 1981, so I think we're the same age!

Grace probably wouldn't have made it in the eighties. She went into the beginning stages of fetal heart failure at 34 weeks, and the only reason the doctors knew to deliver her early was a calculation from the weekly fetal echocardiograms they'd been doing. Her cardiac output went up a hundred points. Her tumor was very vascular, so it becomes like trying to pump blood for two bodies with one heart. I also had maternal mirror syndrome before she was delivered, which is a sign of fetal heart failure.

That's a lot of surgeries! Grace has had four so far, and one more scheduled for two or three years from now.

It's good that Richard is old enough to know when he needs to go to the doctor. It's so hard with a toddler. She doesn't complain about much, so it's difficult to know when something is wrong. When she's a bit older and can explain what she's feeling better, that will help.

Yes, totally worth it

I've been trying all evening to order a TubieFriend for Kendra,and make an additional but can't seem to get the application through.  It keeps telling me that I haven't completed all required fields (I have) and that the capcha I've entered is incorrect.  Then I tried to send them an email and I can't even get that form to come up.  Doggone it, it's become a quest now!  I WILL get one of these for Kendra and donate for other kids if it kills me!!

Keep trying! I remember having trouble with their form too, but can't remember what I finally did to make it work. If you'd prefer to email them without the form, their address is [email protected]

Good luck!

 

[Jessimom]

Hi everyone. I can't even begin to imagine the strength it takes and the worry that every one of you has had to go through with all the surgeries your kids have gone through. I have my own struggles with Jessica, but thankfully, so far she has not needed surgery. We've spent many hours in hospitals due to seizures and overnight EEGS. She has to be sedated for dental work. MRIs and Ultrasounds - too many to count. But none of that has the type of recovery surgery does. I wish you all the best!!!

 

[Cynthia12]

Richard does seem to be very independent and outgoing. I was born in 1981, so I think we're the same age!

Grace probably wouldn't have made it in the eighties. She went into the beginning stages of fetal heart failure at 34 weeks, and the only reason the doctors knew to deliver her early was a calculation from the weekly fetal echocardiograms they'd been doing. Her cardiac output went up a hundred points. Her tumor was very vascular, so it becomes like trying to pump blood for two bodies with one heart. I also had maternal mirror syndrome before she was delivered, which is a sign of fetal heart failure.

That's a lot of surgeries! Grace has had four so far, and one more scheduled for two or three years from now.

It's good that Richard is old enough to know when he needs to go to the doctor. It's so hard with a toddler. She doesn't complain about much, so it's difficult to know when something is wrong. When she's a bit older and can explain what she's feeling better, that will help.

Yes, totally worth it

Keep trying! I remember having trouble with their form too, but can't remember what I finally did to make it work. If you'd prefer to email them without the form, their address is [email protected]

Good luck!

Goodness your little one has gone through her fare share from the very beginning also.

Yes, it will get easier to help her when needed. When she can come to you and say, mom, I think I need to see a dr. I remember when Richard shared a room with his youngest brother. They slept down stairs, we were upstairs. Would hear a knock on the door in the middle of the night at times, little brother telling us that Richard needed me. Sometimes it would be an easy fix, sometimes it was off to the hospital.


Jessimom..sounds like you are going through a lot too. I have a younger sister that had seizures when she was younger..she grew out of them..never ever thought that would happen! We wish you the best!!

 

[sdubski]

  Goodness your little one has gone through her fare share from the very beginning also.

Yes, it will get easier to help her when needed.  When she can come to you and say, mom, I think I need to see a dr.  I remember when Richard shared a room with his youngest brother.  They slept down stairs, we were upstairs.  Would hear a knock on the door in the middle of the night at times, little brother telling us that Richard needed me.    Sometimes it would be an easy fix, sometimes it was off to the hospital. 


Jessimom..sounds like you are going through a lot too.  I have a younger sister that had seizures when she was younger..she grew out of them..never ever thought that would happen!     We wish you the best!!

What a good brother

Hi everyone.  I can't even begin to imagine the strength it takes and the worry that every one of you has had to go through with all the surgeries your kids have gone through.  I have my own struggles with Jessica, but thankfully, so far she has not needed surgery.  We've spent many hours in hospitals due to seizures and overnight EEGS.  She has to be sedated for dental work.  MRIs and Ultrasounds - too many to count.  But none of that has the type of recovery surgery does.  I wish you all the best!!!

Seizures are so scary though. At least with surgery you usually know what to expect. Grace had a viral illness that caused seizures in March. It was terrifying! I can't imagine going through that all the time. We all have our struggles, just thankful to be able to share with other parents who know what it's like!

Sara