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Old 10-29-2012, 04:19 PM   #1
Cassondra
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Shawn-Brooklyn's Wish Trip MAW/Disney Cruise Jan 6-10th 2013

Hi everyone. We have just received the dates for our son's make a wish trip this Jan 2013. We will be on a 4 night disney cruise to the Bahamas. This is our first trip as a family and we are so blessed that Shawn-Brooklyn is finally healthy enough to travel. We were first contacted by MAW last summer after he was referred by one of our local children's hospitals. We were so thankful for the wish but at the time he wasn't really ready for a trip so our make a wish volunteers were nice enough to give us an extension. After all this time we are finally ready to go!

A little bit about our family.... Shawn-Brooklyn is 4 years old (our make a wish child.) He loves Cars and Mickey Mouse so I can't wait for him to meet Mickey! Taeshawn is 7 years old. He is an amazing big brother. He has always been so understanding of his little brother's health and does his best to cheer him up when he's in the hospital. My name is Cassondra and currently I'm finishing my last few weeks of school to become an RN. And then there is Shawn, DH, who does his best to keep the house together while we both work and I'm finishing school.
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Old 10-29-2012, 04:41 PM   #2
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I am so glad that Shawn-Brooklyn gets his wish! A cruise sounds like a lot of fun! I can't wait to hear more about your upcoming trip!

Jackie
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Old 10-29-2012, 06:51 PM   #3
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I am so glad that Shawn-Brooklyn gets his wish! A cruise sounds like a lot of fun! I can't wait to hear more about your upcoming trip!

Jackie
Thanks Jackie! We are very excited!
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Old 10-29-2012, 07:02 PM   #4
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Year Two...

We spent over half of the summer in the hospital with Shawn-Brooklyn due to different illnesses. He just could get a break.

And then it happened we got the phone call we had been waiting for. They had a kidney for Shawn-Brooklyn. We had to be at the hospital right away (which is a 2 hour drive from us) so we grabbed the bags that I had packed months ago and got in the car. Shawn-Brooklyn received his transplant on October 9,2010. He was in surgery for about 5 hours and then was moved to the intensive care unit where he stayed for several weeks.

The first week was really hard. It was almost like a flashback to the meningitis. He had central lines coming and going, a breathing tube and his body was so swollen from all of the fluids they had to keep pumping into him to get that kidney going. Plus he was so small and the adult kidney took up so much room it caused a lot of problems with him breathing.

Just like before he stood strong and made a full recovery. Once we went home he took his first steps, he finally had the strength to walk.
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Old 10-29-2012, 07:11 PM   #5
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Fast forward...

He is now 4 years old and we just passed the two year mark since his transplant. His life is so much better now. He can run and play just like any other child. He is getting caught up developmentally and growing so fast.

Some of his favorite things to do...stay the night at grandma's house and to go swimming. Due to him being on dialysis every night and his dialysis cath these were things he couldn't do until after his transplant.

The kidney is working great but one day he will need another one so we just pray that this lasts as long as possible. He has 7 medications that he takes twice a day to help prevent rejection and keep him as healthy as possible. They also draw blood a few times a month to keep an eye on everything.

He inspires me every day with his strength and courage. He has surpassed all of my hopes and continues to grow in ways that I never imagined. I'm so thankful for this make a wish trip for us to celebrate him and his health.
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Old 10-29-2012, 07:30 PM   #6
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So sorry that Shawn-Brooklyn, and your family, had to go through so much. So glad that things are so much better for him now.

Looking forward to hearing all about his wish.

We're in IL, so not too far from you.
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Old 10-29-2012, 09:53 PM   #7
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Originally Posted by Cassondra View Post
Fast forward...

He is now 4 years old and we just passed the two year mark since his transplant. His life is so much better now. He can run and play just like any other child. He is getting caught up developmentally and growing so fast.

Some of his favorite things to do...stay the night at grandma's house and to go swimming. Due to him being on dialysis every night and his dialysis cath these were things he couldn't do until after his transplant.

The kidney is working great but one day he will need another one so we just pray that this lasts as long as possible. He has 7 medications that he takes twice a day to help prevent rejection and keep him as healthy as possible. They also draw blood a few times a month to keep an eye on everything.

He inspires me every day with his strength and courage. He has surpassed all of my hopes and continues to grow in ways that I never imagined. I'm so thankful for this make a wish trip for us to celebrate him and his health.
Written so well! I feel the same way about Carter. These kids are so brave and go through so many trials. It continues to amaze me every treatment that we do.
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Old 10-29-2012, 04:42 PM   #8
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Shawn-Brooklyn's Story....


On February 23, 2009, a day before I turned 8months old, my mommy rushed me to Mercy Hospital. I wasn't eating or moving and I couldn't open my right eye. The ER doctor started running blood tests and eventually did a spinal tap. I had bacterial meningitis.

They immediately began antibiotics and I was admitted to the pediatric intensive care unit. Over the course of days I was sedated to allow by body to continue to fight the disease that was trying to kill me. My red blood cells were dissolving and my blood was not clotting. I was given several blood transfusions during the first few weeks to keep my numbers up.

My heart was working over time so my breathing was also fast. I was put on a ventilator to control my breathing so my body could rest. While I still had the bacteria in me from the meningitis it settled in my right lung and caused pneumonia.

My meningitis caused several other problems including complete kidney failure. I had to have surgery to put in a dialysis catheter and I began to have dialysis 24 hours a day.

After being in the hospital for three weeks I began to have seizures on the right side of my body. My doctors did an MRI which showed that I'd had a stroke on the left side of my brain, above my ear. It was about the size of a robins egg, and the good news was it was already absorbing on its own. The bad news was that it was on the part of my brain that controls my speech and my understanding of speech, so I had to learn my first words again.

The MRI also showed that my brain was not absorbing my spinal fluid as fast as it should. The fluid is slowly building up on my brain which can cause me to be irritable and sometimes vomit. My doctors are hopeful that in time it will correct itself so I won't have to have surgery because right now I'm not stable enough for it.

I spent almost 3 months in the pediatric intensive care unit. The dialysis has supported me and I now have end stage renal disease. I am now being transferred to the University of Iowa Children's Hospital while my mom goes through 2 weeks of training so she can perform my nightly peritoneal dialysis. I'm going home with a feeding tube in my nose, that I really like to pull out. I will also have physical therapy several times a week because I also lost all of my muscles while being sedated and on bed rest for several weeks. At this time I'm starting to sit up again, but I still need some extra support, and I've relearned how to smile and coo.
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Old 10-29-2012, 04:53 PM   #9
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The First Year...

We finally made it home a few weeks before his first birthday. Words can't express the joy and celebration that we had when he finally made it home. He had been through so much and still had so much ahead of him.

In July of 2009 he had to have two surgeries. One to put in a new dialysis catheter and the other to remove some of the fatty tissue that lines the abdominal cavity. We were having problems with catheter getting stuck in the tissue.

One of the biggest problems that children with renal failure face is nutrition. Their bodies can't absorb the things they need most like calcium for their growing bones. We learned this in September of 09 when he fractured his radius. This happened from a normal tumble that he had while learning to walk furniture.

In October he had a BEAR hearing test. Meningitis can cause hearing loss. We found out that he had severe hearing loss in his left ear and mild loss in his right. He now has hearing aids, which are helping a lot with his speech.

As the winter months came we were in and out of the hospital several times a month. The meningitis did a number on his immune system. Every little cold requires extensive testing. He gets chest xrays, blood and urine tests, and his nose swabbed every time he doesn't feel good. And even if it is just a virus he almost always ends up with a secondary infection that requires hospitalization.

Just a few days before Christmas we received the best news. He had been put on the UNOS wait list for a kidney. We are still waiting for that special phone call that will change his life for the better. Unfortunately we have not found any donors that are a match because he can only take type O blood. For now we continue to wait.

In February 2010 Shawn-Brooklyn had eye surgery. This was to correct the muscle damage that the meningitis caused. His eyes look great again!

In April he had another surgery to have a feeding tube put in his stomach. This is to give him an extra boost in his weight. For his transplant they would like to have him as close to 25lbs as possible. For the last few months he has been back and forth around 20lbs.

June...Happy 2nd Birthday!
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Old 11-05-2012, 07:58 PM   #10
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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   #11
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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   #12
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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 11-07-2012, 01:43 PM   #13
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Love the Halloween pic!

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Originally Posted by Cassondra View Post
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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Karen (the momma) Ian (the daddy) William - 8 (the Cars boy) Matthew - 6 (the all out Disney NUT)

Trick or Treat Trip Oct 11-16th 2014
Shades of Green :

Our MAW PTR
To Kidney - and Beyond!

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

Kidney-versary trip 2011
MAW trip Feb 17 - 23 2013
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Old 11-07-2012, 02:05 PM   #14
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Love the pics
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
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
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
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Old 11-10-2012, 08:52 PM   #15
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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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