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Old 04-18-2010, 08:03 AM   #136
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Sounds like you are getting everybody set for the trip! I still have some last minute shopping to do...hopefully after this week I'll have some free time.
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Old 04-18-2010, 08:20 AM   #137
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I almost forgot...I wanted to tell you this. We have a friend through another group (who also happens to be going to GKTW the same dates as us!). Anyway, they travel to Cincinnati Childrens from New Mexico for all of her medical care. They had tentatively scheduled a bladder augmentation for July, but all of the testing this week showed things were going well enough that they want to hold off on the augmentation at this point, and they are going to do the botox to hopefully reduce the bladder spasms and help to continue to increase the bladder capacity.

I just wanted to share with you, as I know this is similar to what you are going through with Ty. She is elated that they are avoiding the augmentation surgery for now. This little girl currently caths through a mitrofanoff every 2 1/2 hours, does bladder irrigations with gentamicin, and takes ditropan.

Many of the kids with colorectal malformations like Catherine also have uro issues. We are lucky that aside from a single kidney with a history of reflux and stones, she now has no uro issues.

ANyway, when will Ty have the botox done? Where do you go for his uro care?
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Old 04-18-2010, 02:02 PM   #138
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Sounds like you are getting everybody set for the trip! I still have some last minute shopping to do...hopefully after this week I'll have some free time.
Im doing a little hear and there. It seems like our trip is so far away so I do little things to keep up the momentum.

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I almost forgot...I wanted to tell you this. We have a friend through another group (who also happens to be going to GKTW the same dates as us!). Anyway, they travel to Cincinnati Childrens from New Mexico for all of her medical care. They had tentatively scheduled a bladder augmentation for July, but all of the testing this week showed things were going well enough that they want to hold off on the augmentation at this point, and they are going to do the botox to hopefully reduce the bladder spasms and help to continue to increase the bladder capacity.

I just wanted to share with you, as I know this is similar to what you are going through with Ty. She is elated that they are avoiding the augmentation surgery for now. This little girl currently caths through a mitrofanoff every 2 1/2 hours, does bladder irrigations with gentamicin, and takes ditropan.

Many of the kids with colorectal malformations like Catherine also have uro issues. We are lucky that aside from a single kidney with a history of reflux and stones, she now has no uro issues.

ANyway, when will Ty have the botox done? Where do you go for his uro care?


That is great news that they may not have to do the augmentationI hope the botox helps her. It definately seems like they are doing it more now.Are they doing the botox at Cincinnati? Ty has all of his urological care done at Cincinnati.They have been amazing through this whole thing. They even sent us up to Chicago to see if they could help. He caths every 3 hours but doesn't have a mitrofanoff. He also does the gentimycin flush's and is on ditropan as well. Does she have kidney reflux as well?

Ty has his botox on May 18th. When is your friends daughters botox?Please let them know they are in my prayers

Yay that Katherine has no uro issues. The reflux is pretty scary for me with him I can't imagine it in a single kidney.
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Old 04-19-2010, 09:33 AM   #139
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Yes, she'll have the botox in Cincinnati. Her VCUG this time was great, and showed no reflux. She isn't have the botox done until October. We're really excited to meet them at GKTW, as their little girl and Catherine are the same age.

yes, the whole single kidney thing is hard to deal with. It limits Catherine a lot. She had grade 3 reflux when she was born, but it was gone when the tested her at 18 months old. Just one of many miracles in our life. She's not allowed to play any contact sports where the kidney could get hit though. Thankfully, in kindergarten, it's not much of a risk, and the PE teacher is so good about making the games safe for her. I don't think she's ever had to just sit out and watch. However, on the soccer field every weekend...she has to be a cheerleader for her sister and brother. She takes it all in stride, thankfully!
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Old 04-19-2010, 10:50 AM   #140
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Yes, she'll have the botox in Cincinnati. Her VCUG this time was great, and showed no reflux. She isn't have the botox done until October. We're really excited to meet them at GKTW, as their little girl and Catherine are the same age.

yes, the whole single kidney thing is hard to deal with. It limits Catherine a lot. She had grade 3 reflux when she was born, but it was gone when the tested her at 18 months old. Just one of many miracles in our life. She's not allowed to play any contact sports where the kidney could get hit though. Thankfully, in kindergarten, it's not much of a risk, and the PE teacher is so good about making the games safe for her. I don't think she's ever had to just sit out and watch. However, on the soccer field every weekend...she has to be a cheerleader for her sister and brother. She takes it all in stride, thankfully!
That is so good to hear her vcug didnt show any reflux. I hope the botox helps her. The Augmentation seems like such an invasive surgery. We are so thankful they have been able to hold off this long for Ty.

What a great pe teacher Catherine has. Having great teachers definately help. to her for taking it all in stride. Ty does too thankfully. With him having to have the urodynamics test every 3 months just seems like it would be hard. He never complains about one test. Never says a word about all the dr apts or anything. Its just amazing. Just brings tears to my eyes what our kids go through but they keep on going. Definately strong kiddo's
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Old 04-20-2010, 08:32 PM   #141
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I had to post this Ty funny. He was a big helper to dh this weekend working on the cars. They went to the store for a few things. When they came home I was sitting in Sierra's room talking to her as she had just came in from a Girlscout overnight. Ty walks in and says mommy we had a "messy situation" at the store Apparently dh dropped some bottles and they busted all over the floor. Poor dh but oh Ty lol. I just had to laugh. He was as serious as could be
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Old 04-22-2010, 07:53 AM   #142
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This week has been a full week. Both kids had state testing and after today they will be all over with for the year Then we can countdown till summer vacation

We also had to get a furnace and central air. Our furnace kept coming on and shutting off coming on and shutting off. And our air wouldnt keep our house below 78 degrees and Ty gets pretty heated so we went ahead and got it before it got too hot. Our furnace was the orginal one put in. So we got that done this week.

Ive also been working on washing and sorting our summer clothes. Trying things on and getting ready for a yard sale this year for the old clothes. And going through some of my stuff around the house trying to downsize. Too bad I can't downsize all of this paperwork
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Old 04-22-2010, 11:41 AM   #143
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I hate cleaning out drawers and sorting through that stuff! Good for you for getting it out of the way now.

Sorry you had to buy a new AC and furnace...that's an expensive venture!
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Old 04-23-2010, 01:15 PM   #144
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I hate cleaning out drawers and sorting through that stuff! Good for you for getting it out of the way now.

Sorry you had to buy a new AC and furnace...that's an expensive venture!
It sure was. I am so glad that is out of the way. Now we have to get our electric converted from fuses next week before we can't get a fuse to go back in. Our fuse sockets are stripped. Ahh one less thing to have done. But wow this stuff is a hefty price!
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Old 04-23-2010, 01:19 PM   #145
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We have a dinner reservation!

We will be going to Garden Grille on Thursday at 4pm to dine with Chip and Dale.

We have ressies at 4pm which I think will work out great since we will be in Epcot that day and it will be toward the end of the day for us before we head back to GKTW for the Winter Wonderland.
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Old 04-25-2010, 05:14 PM   #146
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I tried to respond to your message, but I am not very good at figuring out these boards. I post stuff and am never sure where it will end up. If you didn't get my response, I will try again.

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Old 04-25-2010, 07:37 PM   #147
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I tried to respond to your message, but I am not very good at figuring out these boards. I post stuff and am never sure where it will end up. If you didn't get my response, I will try again.

Katie
humm I dont see anything I can understand. It took me forever to figure the board out!
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Old 04-25-2010, 08:03 PM   #148
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Big give!!

We have been invited by the wonderful people of these boards (I call them angels) to be apart of the Big Give!

I can't tell you all how excited we are. We can't wait to see what great things come! And I am so greatful that the family is included. Sierra has had a hard time sometimes and feeling "left out" as when we have gone to apts and admitted she has always had to go to grandma's as my husband could not take off work to watch her. So for her to be included it just really melts my heart. I want her to enjoy this trip as much as Ty. We are so happy that Harry Potter opened when it did because she is absolutely one of the biggest fans and is looking so forward to going there.(and it opens on her birthday)

Another happy note too! I havent spoken to my sil since my fil's passing(not by my choice) and we have been texting back and forth all day. It has broken my heart so bad. And with not seeing my niece and nephew since (even on thier birthdays I have had a really hard time. Many tears have been shed but I cannot change things they have to work out. Well she texted me last weekend and we have just "gabbed" away all day today. And I am so happy and thankful! I just hope hearts can heal.And this is a start!!
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Old 04-26-2010, 08:32 AM   #149
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Hooray for the BIG GIVE!!! We all know how amazingly generous they are. I am right there with you on making this trip about all of the kids. Certainly Catherine has been through more, but really, the other kids in these families have their own struggles and deserve this wish as well.

Good news about getting back in touch with your SIL. Family can never be replaced.
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Old 04-26-2010, 03:11 PM   #150
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We are sleep study bound Ty is having problems with paleness and fatigue so the pulmo has ordered a sleep study to rule out hypopsomething?? where he would be shallow breathing at night.He really feels it is more like a vasovagal response with his reflux though. Ty is dx'd with dyautonomia by symptoms rather then tests and he wants us to persue testing which will mean another trip to Cleveland Clinic or somewhere that sees kids for it which there arent too many that I am aware of. He mentioned Familial dysautonomia. He also asked why he hasnt had the nissen for his reflux. From what I understand the Nissen is not for kids with motility issues as it can cause some big problems. As bad as I dont want him to have hypopwhatever it is it seems like it would be the easiest to treat and it would give him the better chance of getting more energy during the day.
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