Shawn-Brooklyn's Wish Trip MAW/Disney Cruise Jan 6-10th 2013

Discussion in 'Pre-Trip Reports and Plans' started by Cassondra, Oct 29, 2012.

  1. Cassondra

    Cassondra Mouseketeer

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    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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  3. Lilfoot93

    Lilfoot93 DIS Veteran

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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
     
  4. Cassondra

    Cassondra Mouseketeer

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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.
     
  5. Cassondra

    Cassondra Mouseketeer

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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!
     
  6. Cassondra

    Cassondra Mouseketeer

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    Thanks Jackie! We are very excited!
     
  7. Cassondra

    Cassondra Mouseketeer

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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.
     
  8. Cassondra

    Cassondra Mouseketeer

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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.
     
  9. angel's momma

    angel's momma DIS Veteran

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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. :)
     
  10. Cassondra

    Cassondra Mouseketeer

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    [​IMG]

    Here he is...Shawn-Brooklyn
     
  11. angel's momma

    angel's momma DIS Veteran

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    Aw, he's adorable!
     
  12. NEmel

    NEmel Mouseketeer

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    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.
     
  13. Lilfoot93

    Lilfoot93 DIS Veteran

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    OH MY!! He is such a cutie!! I LOVE the curly hair :)

    Jackie
     
  14. Cassondra

    Cassondra Mouseketeer

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    Thanks!

    Thank you. I'm so glad there are foundations like MAW that celebrate all that they have been through.
    Thanks Jackie...that was a good hair day :)
     
  15. Cassondra

    Cassondra Mouseketeer

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    Here is a photo of Shawn-Brooklyn at 8months old about 2 weeks into his hospitalization with bacterial meningitis.
    [​IMG]
     
  16. Cassondra

    Cassondra Mouseketeer

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    And here he is at 2 1/2 years old about a week after his kidney transplant
    [​IMG]
     
  17. Cassondra

    Cassondra Mouseketeer

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    Here he is with a grumpy face and his hospital buddies... he wasn't very happy about anything at this point. This was probably the only time he went into the hospital feeling just fine only to wake up (a few days later due to sedation meds) and felt horrible. Plus he had a central line in his neck so his hands were restrained. The transplant was a blessing but it took a toll on his body for a few weeks.
    [​IMG]
     
  18. Cassondra

    Cassondra Mouseketeer

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    And here are his battle wounds as I like to call them. The smaller ones on either side of the steri strips are from his dialysis caths. The big one down the middle is from the transplant.
    [​IMG]
     
  19. Cassondra

    Cassondra Mouseketeer

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    And here he is with his big brother Taeshawn

    [​IMG]
     
  20. angel's momma

    angel's momma DIS Veteran

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    So sorry that he had to go through so much.

    You have 2 sharp looking boys!
     
  21. LittleEsmom

    LittleEsmom Mouseketeer

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    You have two very handsome little boys! Many ((((hugs)))) and prayers as you plan for your awesome voyage!:banana::woohoo:
     

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