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Old 01-27-2011, 07:15 PM   #1
Mom2Miracles
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Princess Peanut's WISH Trip CWF/GKTW Pre-Trip Report! *We're HOME - Pg.37*

This is the start of our pre-trip Wish report! Our Peanut, Brynlea is getting her wish granted to see the Princesses at Disney World through Children's Wish Foundation of Canada (similar to Make a Wish). We are so happy for her (and her brother) to finally have a chance to just be kids, to have fun, and to be away from Dr's, hospitals, tests, surgeries, everything. The last few years have been incredibly hard on our family, but we are still standing and still taking everything that is coming at us. I talked to our wish co-ordinator today and we are hoping for the end of April/1st week of May to go. They are sending us our introduction package with some information and papers to fill out. They said once they get it back, they will try and get our dates confirmed. Of course, the dates are very dependant on her Dr saying if she medically stable to travel, so fingers crossed. Her Dr is only allowing her to go to school half days, because she doesn't think she is strong enough or stable enough for full days, so hopefully she'll make an exception for this very special trip.

I guess i'll introduce US!

I'm Kristy, AKA 'Momma' and my husband is Mike, AKA 'Dadda'. Brynlea, AKA 'Peanut', and our son Keltan, AKA 'Monkey'.

Our wish Princess, Brynlea (Peanut) is 4.5. She was born on June 3rd, 2006 and was full term. Despite a rocky pregnancy she was born healthy and we were over the moon to finally have a baby in our arms. It took us 18 months and one miscarriage to finally conceive her (via fertility meds). When we had our first ultrasound we found our she was one of triplets. Sadly, at 14 weeks we lost our identical twins, but she fought hard and finally made us parents. Shes had a long road since birth, with her first admission at 27 days old, and again at 3 months. She was diagnosed with GERD and allergies to both milk and soy. When she was 7 months old she all but stopped growing, and began to lose weight. Thats when the testing began, MRIs/CAT scans, x-rays, ultrasounds, test after test. Nothing was showing up. At 10 months old she was re-admitted and diagnosed with Pancreatic Insufficiency. Essentially she couldn't absorb fats, proteins or carbs. So she started medication to help her body absorb what she couldn't and bam, she started to gain weight, though it took some time. Finally at 15 months old she starting to gain. She had a smooth year and a half, she was still very small for her age, and shorter then her pears, and while she wasn't on THE growth chart, she was on her own. Everyone was happy. Then we started to notice that she was needing a rather large amount of enzymes to continue to gain weight - the amount that an average size man would need. Then she stopped gaining weight and within 6 months, she started to lose. She started seeing Specialists at Sick Kids in Toronto, yet we didn't really get too far. As good as they are in what they specialize in, because Peanut didn't fit in to their specialities, there was only so much they could do. In January 2010, things started to go down hill again and her stall in weight gain turned in to weight loss. Despite an increase in meds and putting her back on high calorie formulas, it wasn't working. They had talked about an ng-tube when she was baby and not gaining but when we started on meds, things turned around. This time, there was no escaping it. For whatever reason, she wasn't absorbing enough and her health was suffering. In April 2010 she had her ng-tube placed. To make an incredibly long story short since January 2010, she has spent more time in hospital then out. Which included missing her dance recital last June, missing her entire soccer season except the first 3 games, spending her birthday in the hospital, most of fall/winter of school (shes in JK), Christmas, I could go on and. Since June 2010 (none of this includes what she went through in the first 4 years of her life), shes had 5 surgeries, dozens of sedations for procedures, tube changes (tubes coming out, pulled out accidentally, infection pushing the tube out, tube malfunctions - you name it its probably happened), MRI, EEG (for possible seizures), 1 G-tube placement surgery (which was a surgery done in error - they screwed up another surgery and well, it wasn't good), 2 GJ-tube placement surgeries, 1 PICC line placement (was supposed to be 1 placement turned in to 2), 1 port surgery, emergency transfers to a hospital 2 hours away on 3 occassions, sepsis (she was so so, sick) that originated in her PICC line which led to them having to remove it, TPN 6 or 7 times, countless infections in her GJ-tube (which led to the removal of her tube completely once), having her NJ-tube put back in, and next week she is having bilater inguinal hernias repaired, hospital stays after hospital stays for weeks on end, the longest being a 6 week stint. She is now 100% tube fed, and doesn't eat orally. Not by choice, she couldn't keep anything down and was vomitting all the time. We don't have an official diagnosis of a disease/disorder, unfortunately. She doesn't fit in to any one category completely, shes a bit of this disease, a bit of that disease. We are either heading to Montreal or Children's of Philadelphia. She has been dianosed with Delayed Gastric Emptying, Severe Bowel Dysmotility, Pancreatic Insufficiency, Blind Loop Syndrome, GERD and is IGA deficient. She currently has a GJ-tube and a port in her chest (that she gets medications through, IV meds - quite often, fluids and all of her blood work done). Her veins are shot and she needed to have permanent IV access at all times, especially with the amount of times she needs TPN. She is fed 20-24 hours a day (depending on what is going on), and is on a myriad of medications around the clock. She sees her Dr weekly at the hospital as well as her Dietician, and we travel 2 hours away to see her GI Specialist and surgeon quite frequently. All we are doing, and all we can do is treat these seperate issues. Until we can find the main link of all of these issues and why they are happening so we can treat the big picture, she may continue to decline. She is quite small for her age, and while she is incredibly bright and a very happy child. She is so so brave. She is always smiling, and happy. She has big dreams and loves other people for who they are, not what they are. She has a heart of gold. When she grows up she wants to be a "tubie Dr" - she wants to help other kids like her. She has never given up, has always put on the brave face. If she does cry, its for brief moments and then shes smiling again. She wakes up from surgeries and even if shes in pain, she tries to smile or braves a smile. The Drs and nurses at our hospital love her, and she wins the hearts of everyone she meets. She is MY hero. But she is so tired, her body is sore, its just been such a long fight. Some days are hard for her, and I certainly don't blame her. They are hard for us some days. We are afraid that one day she is going to quit fighting. It scares us for what her future holds, but we've been told that her Drs here can't help her anymore (not that they can't treat her, just that they can't test her for anymore here - she needs bigger hospitals, more research, more experience). Its so hard to watch your child go from happy and care free, to scared. I have never felt more helpless in my life, then I do now. They can continue to treat her as we are, but we need some top Specialists who can research and test her for things they can't do here. Hence Montreal or Philly. Unfortunately, we don't get to make the choice unless we pay out of pocket which is crazy $$$$. So we have to let the Government decide (with rec's from her Specialists), since we want OHIP (Ontario Government health care) to pay. So she deserves this Wish trip SO much.

Keltan (Monkey) is Peanuts little brother, he is 3.5. Yes, they are just over a year apart. Monkey decided to make his grand entrance almost 2 months early. While the first 3 weeks of his life were tough, like his sister, he was brave and to this day is still very brave. He is an incredibly little boy, he is so bright and just the funniest little boy ever. He has the funiest one liners and its so hard to stay mad at hime. The faces he makes either make you laugh like crazy or make your heart melt. He is incredibly strong and brave, just like his big sister. He loves to take care of her and hug her when she sick or sad. He misses her so much when shes in the hospital and just wants her home. He's been through a lot while Peanut has been sick. Not having his best friend around has been hard on him. Not having me around all the time has been hard, as much as we try and explain things to him, hes too young to really "get" it. So he deserves this trip too. They both deserve to have it all, and I hope this trip gives that to them.

As for me and Dadda. We've been married almost 7 years (in April), we've been together almost 11 years. We've had a rough go to have our little family, and a lot of heartache. Besides our incredible Peanut and Monkey, we had a miscarriage just after we were married, we lost the idential twins in Peanuts pregnancy, and we lost 2 baby boys after they were born. We lost our son Everett, in September 2008 after he was born at 21w1d. My water broke prematurely due to infection and he was born 2 days later. He died in my husbands arms a little over 2 hours after he was born. In June of 2009, we were pregnant again and at 23w4 days my water broke, and despite all efforts our son, Leyland, was born at 23w5d. He lived for 2.5 days and died in my arms. Knowing you have to let your child go forever is the most gut wrenching thing in the world. Just typing this brings me back to the last moment I ever held my baby boys.... We fight every day for Peanut's health and we fight every day for Peanut and Monkey's happiness. We just want them to be normal kids...

So, with all of that being said...bored yet?

All of us in March 2010, just before her ng-tube was placed...


Peanut (Beg. of December)


Monkey (Christmas Day)


One of their professional Christmas pics


Me & my Peanut (this was taken just last weekend)


Looking forward to sharing our journey with you all!
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Princess Peanut's Wish Trip - CWF/GKTW Pre-Trip Report!!

Last edited by Mom2Miracles; 05-09-2011 at 01:55 PM.
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Old 01-27-2011, 07:33 PM   #2
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Hi Thank you for sharing your story about your Peanut. It made me so teary eyed! You have a beautiful family. I truly hope your trip to Disney gives her the 'umph' she may need to continue fighting. I can't wait to hear more about your upcoming trip and family. I can't believe the DR's told you they couldn't do anymore. I'm hoping when you go to the other hospitals they are able to give you the answers you need.
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Old 01-27-2011, 07:47 PM   #3
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Thank you for starting your pre-trip report and letting me get to know your family. As I was reading your ptr, the tears were flowing. Your little peanut and your whole family have been through so much. ALL OF YOU trully deserve this wish trip. You and your husband have suffered the worst loss than anyone should ever have to face and for that you are remarkable parents and you both deserve this too. I can't wait to read more. HUGS to all of your family
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Wish Trip Dates

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So sad it is over, but wonderful memories were made and awesome smiles and lots of happy tears!!!

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Old 01-27-2011, 08:24 PM   #4
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Hi

Thank you for sharing your story and congrats on your wish trip.

Just a quick question is there a Now I Lay Me Down to Sleep organization(NILMDTS.org) in Canada? I know it was started in the US here a few years ago....It's a wonderful org that does photography for parents with children who won't live beyond a few days... or didn't live to birth. I was just wondering with your story, if they were able to provide their services?
It's a wonderful service.

I will be subbing and following your ongoing story!

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Old 01-27-2011, 08:55 PM   #5
Mom2Miracles
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Originally Posted by brookerene View Post
Just a quick question is there a Now I Lay Me Down to Sleep organization(NILMDTS.org) in Canada? I know it was started in the US here a few years ago
Unfortunately I don't have a good story to report about NILMDTS, but yes, they are in Canada. They let our family down in some of our darkest hours, and even in the aftermath they continued to let us down. We have some wonderful photographs of our baby boys (many many), along with some other amazing momentos thanks to the hospitals they were born at.

Thanks ladies for following our journey...We're so excited!!! We haven't told Peanut (or Monkey yet), as we want to wait until the dates are finalize. They don't have any concept of time when its that far away. They are going to go NUTS!!!
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Old 01-27-2011, 10:26 PM   #6
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[QUOTE=Mom2Miracles;39724257]Unfortunately I don't have a good story to report about NILMDTS, but yes, they are in Canada. They let our family down in some of our darkest hours, and even in the aftermath they continued to let us down. We have some wonderful photographs of our baby boys (many many), along with some other amazing momentos thanks to the hospitals they were born at. QUOTE]

Oh I am so sorry..... that's disappointing and disheartening.....I do part time photography and signed up to provide this service (I haven't had to yet, praise God) and I know I would be a little frightened to do it but would do my best.... I am so glad the hospital got some shots for you.... I think it is important to have those momentos....I wish I was able to change that experience for you...

I am so glad that you are getting a wish and that your little ones will be watching from heaven...this will be exciting for your family.. I can understand waiting to break the dates to the kids.... my daughter keeps thinking we are going any time!



Take care...
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Old 01-27-2011, 10:55 PM   #7
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Kristy, I'm so glad you started your PTR. Princess Peanut and Monkey are truly adorable kiddos. I can't believe how much they've been through... and you two as well. Peanut and Monkey are the same age as my Sydney and Caiden. Sydney is in JK as well. I hope CWF finalizes your dates soon.
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August 2006 - ASMo (7 days); March 2007 - ASMo (5 days); July 2008 - POR and Dolphin (14 days); February 2009 - Poly and Swan (10 days)
August 2010 - DD's Wish Trip! Grand Floridian (11 days) (PreTrip Report http://www.disboards.com/showthread.php?t=2443630)
Princess Sydney's Magical Wish Trip Report http://www.disboards.com/showthread....1#post38079645
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Old 01-28-2011, 03:02 PM   #8
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Loved reading all about Peanut and Monkey (and you and DH too)! I am SO happy you are being blessed with a Wish Trip, I know it will bring you many happy, wonderful memories to help you through all of the tough medical challenges you continue to face!
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Old 01-28-2011, 03:05 PM   #9
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Kristy, I'm so glad you started your PTR. Princess Peanut and Monkey are truly adorable kiddos. I can't believe how much they've been through... and you two as well. Peanut and Monkey are the same age as my Sydney and Caiden. Sydney is in JK as well. I hope CWF finalizes your dates soon.
Kristy, Please forgive me for posting this for Joanne...I still hope you have a chance to finish your TR...I have checked several times, PLEASE let me know if you do.
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Old 01-28-2011, 06:05 PM   #10
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Thanks ladies for reading along, and the warm welcome. I am looking forward to getting our package of information next week, I think it will make it feel more real.
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Old 01-28-2011, 06:09 PM   #11
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Hi and welcome to the Disboads. Peanut and Monkey are such cutie pies. So glad Peanut is getting her wish. Can't wait to read more about your PTR.
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Old 01-28-2011, 06:32 PM   #12
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Kristy, Please forgive me for posting this for Joanne...I still hope you have a chance to finish your TR...I have checked several times, PLEASE let me know if you do.
I will Judy. Both you and Kristy have asked questions that I've tried to answer but I know it would help you and so many others if the report was finished. I've managed to do two more days but haven't posted them yet. I'll ask to reopen the TR this weekend and will post those two days at least on Monday. I'll post on the wish thread when I've done it.
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August 2006 - ASMo (7 days); March 2007 - ASMo (5 days); July 2008 - POR and Dolphin (14 days); February 2009 - Poly and Swan (10 days)
August 2010 - DD's Wish Trip! Grand Floridian (11 days) (PreTrip Report http://www.disboards.com/showthread.php?t=2443630)
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Old 01-28-2011, 07:38 PM   #13
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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I will Judy. Both you and Kristy have asked questions that I've tried to answer but I know it would help you and so many others if the report was finished. I've managed to do two more days but haven't posted them yet. I'll ask to reopen the TR this weekend and will post those two days at least on Monday. I'll post on the wish thread when I've done it.
YEA!!!! Thank you, I KNOW it is a LOT of hard work!!!
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Old 01-28-2011, 07:45 PM   #14
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Yay, I can't wait to see more of it...2 more days is a start.

So I heard from our wish co-ordinator today, shes just so nice. I had some concerns about food allergies and she said everyone at GKTW is amazing about working with families with allergies, as well as the Disney character meals. One less thing to stress about. YAY!
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Princess Peanut's Wish Trip - CWF/GKTW Pre-Trip Report!!

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Old 01-29-2011, 01:11 PM   #15
Mom2Miracles
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Is anyone even reading this? lol...I don't want to post to myself....

I posted this over in the Wish thread, but didn't really get any responses. I need help trying to plan some things and while i've gotten some good adice on where to look for things, its quite overwhelming.

We have to do BBB for my daughter, no questions asked. I know its better to book early, but I can't until our dates are finalized. I've heard its in 2 locations, is one better then the other?

My daughter ADORES the Princesses, Cinderella is her ultimate favourite, but has a soft spot for Belle and Ariel. lol...best suggestions for seeing there, or where to see them?

My son loves Toy Story (and Cat in the Hat), I know where to find the Dr Seuss stuff - IOA, right?, but what about TS. Buzz, Woody & Jessie?
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