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Old 11-05-2012, 06:23 AM   #31
Cassondra
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Just ordered a few things for pirate night on the cruise...hats and eye patches! I'm thinking of getting us all jack sparrow costumes. At first I wasn't sure if we would get all dressed up...but when else are we going to be in the middle of the ocean having a pirate party!?
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Old 11-05-2012, 12:52 PM   #32
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And what a great time to be having that pirate party - when IA is probably cold & dreary. Are the boys excited about getting to be pirates?

Angel found a pirate gown costume on clearance the day after Halloween, so we picked it up. She's not much of a pirate fan, but even she can't resist the lure of dressing up for the party.
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Old 11-05-2012, 04:01 PM   #33
Cassondra
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And what a great time to be having that pirate party - when IA is probably cold & dreary. Are the boys excited about getting to be pirates?

Angel found a pirate gown costume on clearance the day after Halloween, so we picked it up. She's not much of a pirate fan, but even she can't resist the lure of dressing up for the party.
My thoughts exactly. I found some pirate accessories on sale. Big brother Taeshawn is picking out their costumes. Of course he wants the top from this one and the hat from that one lol. I haven't decided on one yet but I figured we might as well all dress up! When they found out it was a pirate party they were really excited!
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Old 11-05-2012, 06:34 PM   #34
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There are some threads on the board with awesome magnets you can print off for your state room door. Don't forget about your fish hook extender too! I found some shirts on a website with mickey heads wearing a bandana. I'm going to take a stab at making my own! Congrats for flight info! What airport do you leave from?
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Old 11-05-2012, 06:50 PM   #35
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There are some threads on the board with awesome magnets you can print off for your state room door. Don't forget about your fish hook extender too! I found some shirts on a website with mickey heads wearing a bandana. I'm going to take a stab at making my own! Congrats for flight info! What airport do you leave from?
We leave from the airport in Des Moines and then I think we transfer in Atlanta. Magnets sound like a great idea. What is the fish hook extender? I think I've seen that mentioned before but I don't know what it is. I've seen those mickey shirts too they are cute!
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Old 11-05-2012, 07:58 PM   #36
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We leave from the airport in Des Moines and then I think we transfer in Atlanta. Magnets sound like a great idea. What is the fish hook extender? I think I've seen that mentioned before but I don't know what it is. I've seen those mickey shirts too they are cute!
Wasn't sure if you were closer to Des Moines or Omaha. The fish hook extended hangs outside your door on the hook they have. People can leave you little gifts and that is where they can put your mail.
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Old 11-05-2012, 08:53 PM   #37
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Hello fellow kidney mommy! So glad your son is doing well right now! I know about the horrors of meningitis too. Matthew had meningitis 5 months post transplant and he coded twice on us. It was so scary! These little guys tend to keep us on our toes don't they!! Good thing they are cute. I wasn't able to donate to my son either, tore me up! The one thing you want to do for your baby is make him feel better and to be told you can't - it's heart breaking. But in trying to save his life, he has ended up saving mine. The docs found out on my work ups that I have borderline stage 2-3 kidney disease. It's usually not found so early, so they are optimistic we can take preventative care for several more years before starting up dialysis or anything. I often joked when I was taking my little bundle of boy into the hemo unit, that one day there would be the both of us fighting for the tv!
Can't wait to read more about your trip and the process of planning. I've been on a cruise, but not a DISNEY cruise! Ooooh, it's going to be so much fun!!
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Old 11-06-2012, 07:09 PM   #38
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Hello fellow kidney mommy! So glad your son is doing well right now! I know about the horrors of meningitis too. Matthew had meningitis 5 months post transplant and he coded twice on us. It was so scary! These little guys tend to keep us on our toes don't they!! Good thing they are cute. I wasn't able to donate to my son either, tore me up! The one thing you want to do for your baby is make him feel better and to be told you can't - it's heart breaking. But in trying to save his life, he has ended up saving mine. The docs found out on my work ups that I have borderline stage 2-3 kidney disease. It's usually not found so early, so they are optimistic we can take preventative care for several more years before starting up dialysis or anything. I often joked when I was taking my little bundle of boy into the hemo unit, that one day there would be the both of us fighting for the tv!
Can't wait to read more about your trip and the process of planning. I've been on a cruise, but not a DISNEY cruise! Ooooh, it's going to be so much fun!!
Meningitis too?! Man these two have a lot in common. His doctors always joke that he's just too much trouble for one name so it's good I gave him two How did he do with the transplant surgery? Shawn-Brooklyn had a lot of problems at first and had to stay in the PICU for longer than they expected. He also clotted off his aorta during surgery which just added problems. I'm so glad they found out about your stage 2-3 kidney disease there are so many things that they can do to prolong that time frame when it is caught early.
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Old 11-06-2012, 07:10 PM   #39
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Wasn't sure if you were closer to Des Moines or Omaha. The fish hook extended hangs outside your door on the hook they have. People can leave you little gifts and that is where they can put your mail.
Oh that sounds like fun. We will have to make one. I'm sure the kids would get a kick out of it.
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Old 11-06-2012, 07:25 PM   #40
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Happy Halloween!

"Fishing"



He loves taking pictures!

At a Make A Wish event at the wish kids baseball field
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Old 11-07-2012, 01:43 PM   #41
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Love the Halloween pic!

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Meningitis too?! Man these two have a lot in common. His doctors always joke that he's just too much trouble for one name so it's good I gave him two How did he do with the transplant surgery? Shawn-Brooklyn had a lot of problems at first and had to stay in the PICU for longer than they expected. He also clotted off his aorta during surgery which just added problems. I'm so glad they found out about your stage 2-3 kidney disease there are so many things that they can do to prolong that time frame when it is caught early.
His surgery went down without a hitch fortunately! However, he had some complications after surgery as well. He's been on 4 blood pressure medicines since he was 14 months old and finally diagnosed with congestive heart failure due to the toll it was taking on his body. (his blood pressure would run 160/100 on a good day with his 4 meds and 200/120 on a bad day - needless to say, we were in the hospital quite a bit on 'stroke" watch!) The docs changed up his bp meds to an IV med that just happened to have a very rare side effect of interacting with prograf. Well, if it is rare - it will happen to my son (I'm sure you know the feeling!) His prograf went through the roof with this trough levels in the 40's! He was delirious and out of his mind. Scratching his skin on his face off, screaming uncontrollably and ripping out his IV's and catheter even. He was only 18 months old. The high levels of prograf did cause prograf toxicity to his kidney, so his creatinine has bumped up more than it would have been. Plus, his pain was only controlled with TYLENOL for the first 15 hours POST surgery. He would hold his breath since he was scared and they said he was having respiratory issues and with morphine of the like, it would only suppress his breathing more! Needless to say, I got a patient advocate on that right away! But the damage was done and he developed post traumatic stress disorder due to it. We hit our first rejection episode at 6 months, but have had smooth sailing since. (where's some wood? I'll just use my head!)
How scary about the clotting of his aorta! EEK. I think i would have flipped out had I been told that. Is he doing well for now?
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Trick or Treat Trip Oct 11-16th 2014
Shades of Green :

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Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

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Old 11-07-2012, 02:05 PM   #42
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Love the pics
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Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
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Old 11-09-2012, 08:16 PM   #43
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Hope he has a good time on his cruise. Can't wait to read more about it.
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Old 11-10-2012, 08:52 PM   #44
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Love the Halloween pic!



His surgery went down without a hitch fortunately! However, he had some complications after surgery as well. He's been on 4 blood pressure medicines since he was 14 months old and finally diagnosed with congestive heart failure due to the toll it was taking on his body. (his blood pressure would run 160/100 on a good day with his 4 meds and 200/120 on a bad day - needless to say, we were in the hospital quite a bit on 'stroke" watch!) The docs changed up his bp meds to an IV med that just happened to have a very rare side effect of interacting with prograf. Well, if it is rare - it will happen to my son (I'm sure you know the feeling!) His prograf went through the roof with this trough levels in the 40's! He was delirious and out of his mind. Scratching his skin on his face off, screaming uncontrollably and ripping out his IV's and catheter even. He was only 18 months old. The high levels of prograf did cause prograf toxicity to his kidney, so his creatinine has bumped up more than it would have been. Plus, his pain was only controlled with TYLENOL for the first 15 hours POST surgery. He would hold his breath since he was scared and they said he was having respiratory issues and with morphine of the like, it would only suppress his breathing more! Needless to say, I got a patient advocate on that right away! But the damage was done and he developed post traumatic stress disorder due to it. We hit our first rejection episode at 6 months, but have had smooth sailing since. (where's some wood? I'll just use my head!)
How scary about the clotting of his aorta! EEK. I think i would have flipped out had I been told that. Is he doing well for now?
Yes, knock on wood, he's doing great. He's had the usual colds here and there and a nasty lung infection a few months ago but all things considered much better. Every time something comes up I'm like oh he has pneumonia or oh he has this etc and everyone around is like what I would be freaking out why are you so calm...I'm sure you can relate. When you have been through so much those "little" things are just bumps in the road. I'm so glad you are an advocate for him too. You know him better than anyone else and sometimes others just don't understand that they really can have things like PTSD at a young age. How is his heart doing now? Are the meds "controlling" his bp? Shawn-Brooklyn has been on amlodipine this whole time but we have never had bp like that. How scary.
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Old 11-10-2012, 08:53 PM   #45
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Love the pics
Thanks!

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Hope he has a good time on his cruise. Can't wait to read more about it.
We are very excited. He keeps asking if he can go swimming with mickey now lol.
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