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Old 03-25-2010, 12:50 PM   #1
wishin' on a star
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A wish for a special little girl! Catherine's Make a Wish trip! May 17th-23rd, 2010

Hi everyone...

Wow! I am SO happy to be here, sharing our story!! I am Laura, married for almost 11 years to my DH Dave...and busy stay at home mommy to Carmella (8), Catherine (6), and John (5). Catherine is our child who was granted a wish. This has all been quite the whirlwind adventure, so I am kind of happy for the opportunity to get it all down in print for the memories!

After a very easy, normal pregnancy, and the fastest delivery of any of my kids, I was handed a beautiful little girl. All was right with the world, and she seemed perfect. Then they took her to the nursery for her bath and a quick checkover by the pediatrician...and that's when things started to fall apart.

The first discovery was a bowel defect, and then they discovered a significant heart murmur. Off she went to the NICU, where further tests confirmed that she only had one kidney. A geneticist came by and told us all of the possibly chromosomal disorders she may have, and they began running tests for these. My beautiful blond girl was the biggest baby there at 5 lbs 9 ozs. As the story unfolds, her bowel problems needed a temporary emergency colostomy, but her heart problems made her very unstable to go through the anesthesia. She was transported to a hospital that was better suited to handle her heart problems, in case anything went wrong during the colostomy surgery. We are lucky that we live in the Washington DC area, and have the choice of many excellent doctors in a pretty close by radius. She was VERY sick after the surgery, and her heart even stopped once. I pretty much never left her bedside. She had been put in the PICU, so parents were allowed to spend the night. I couldn't imagine leaving my child alone for one minute.

At 10 days old, she had her first open heart surgery. This was a repair of a coarctation of the aorta. She came through it with flying colors, and within two days was sent to the regular floor. Things were looking up. But not for long. We discovered she had hydrocephalus, although it didn't seem too bad, so we would just wait and see whether this developed into a problem or not. She also had reflux into her single kidney. And she wasn't gaining any weight, because she couldn't keep any food down in her stomach. They thought this was a side effect of a cardiac med she was on. She was on TPN for weeks, until they finally repaired the pyloric stenosis at 4 weeks old, and she could finally eat...V E R Y S L O W L Y. We finally got to take her home at 5 weeks old.

The next few months brought more surgery, making her a new "bottom", so she could get rid of the colostomy, and then two cardiac catheterizations because her aorta developed scar tissue, and then they discovered her pulmonary arteries were very narrow as well. At 10 months old, we headed up to Philadelphia to CHOP and she had a pretty major open heart surgery to enlarge her aorta and pulmonary arteries. About this time, she started going cross-eyed in one eye. But, not just your "run of the mill" cross eye, because the muscles were completely stuck looking in. Lots of specialists later, she had a surgery to correct this. Then they decided to put a shunt in for the hydrocephalus. We are currently in "wait and see" mode with her heart. Knowing there will be more cardiac issues as she grows, but living in the moment of things going well. Anyway, you get the gist...now it's lots of follow ups and monitoring, waiting for the next step. Oh, and the genetics testing? Never showed anything. We agonized over this testing, and ultimately we have no overall diagnosis. It doesn't change where we are and who she is. Most docs agree that she is "unique", and there is probably no other child with the same combo of birth anomolies.

Through all of this, she has proven to be the most amazing, intelligent, happy little girl. She's in kindergarten today, in a regular classroom, reading better than anyone in her class. She loves to write, sing, and dance. She can't do all of the sports her friends do, but she's always on the sidelines cheering her brother and sister on in whatever activities they are participating in. She's a Daisy Girl Scout and loves everything about life. She has lots of friends, and many of the big kids at her school just adore her. She has a contagious smile.

So, the cardiologist asked me about Make a Wish, and we thought about it for quite some time. But, it didn't take us long to realize that this was a perfect time for a wish. She's doing so well right now...it's like a celebration of life, and all that we've survived.

The wish granters tried to come in February, but living on the east coast we were slammed with back to back blizzards that kept them from coming. Finally, when the snow began to melt, Christy and Amanda came over to meet Catherine and get her wish. They had armfuls of presents for all the kids. Catherine wished for a family trip to Disney World, and to meet Sleeping Beauty. We said our goodbyes, and didn't hear from them again for 3 weeks. Then...an envelope came in the mail approving her wish. We gave them dates, hoping to go in May, but knowing it was right around the corner we were skeptical.

To my surprise, two days later I received an e-mail from Southwest with our airline confirmation! That was how I found out about the dates! So, we'll be staying at GKTW, and heading down there in the middle of May. I haven't seen any other MAW dates on the DIS for this week, but we do know another family from a support network that will be down there the same dates with their 6 year old wish child as well! We've made some ADR's and plans, but I really just want to relax and let it all happen as it may.

We are so grateful to MAW for the opportunity of a lifetime for our family. DH and I went to Disney World for our honeymoon 11 years ago, and we can't wait to share the world with our kids. They are beyond excited...it's the only topic of conversation at the dinner table lately! This is not any trip we could afford, so we do feel SO blessed!! And, how lucky am I to have found the DIS? Seems like an awesome place to share our dreams, plans, and memories. I will post more (and pictures too, when I figure it all out!) as we make more plans!
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Old 03-25-2010, 01:05 PM   #2
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Welcome!!!

Great start to your PTR!!!

Your kiddo sounds great!! She sounds like she deserves this trip very much. You will all have a blast! I have been reading lots and lots of the TR and PTR for the wish families. I guess you could say I'm addicted- but in a good way! Your DD sounds like she has gone through quite a bit and so could use a great family vacation.

I have a special place in my heart for Girl Scouts!! I was in them for years and I am a troop leader now. My DD is a girl scout too (in my troop) and loves it as well.

Can't wait to read more!!
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Old 03-25-2010, 01:39 PM   #3
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Thank you for the welcome!

I am the leader of Catherine's Daisy troop. I love my crazy Daisies! I have 17 kindergartners and 1st graders this year, and we have a blast every meeting. My older DD, Carmella is a Brownie, and there was no way I was going to leave Catherine out of the fun, so I became a leader and started a new Daisy troop for her and her classmates. For all of the things she can't do, there are so many things she can do as a GS.
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Old 03-25-2010, 03:12 PM   #4
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Hey Laura!!!

Welcome!!!

Congrats on the Wish!!! Can't wait to keep reading along with you!!!

My wish child, Brigitte and your daughter have ALOT in common. Brigitte also has had a few open heart surgeries and a few caths too!! She has Noonan Syndrome. Her cardiac defects are pulmonary stenosis, hypertrophic cardiomyopathy, ASD and we just found out in Feb. she is missing her entire right coronary artery. They think she had a heart attack at some point and it clotted off. During her first OHS she had her main proximal pulmonary artery enlarged. She also has strabismus!! But is usually the happiest kid in my house!!!!

Good luck planning!!! What ADR's do you have booked???
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Old 03-25-2010, 04:50 PM   #5
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Quote:
Originally Posted by wishin' on a star View Post
Thank you for the welcome!

I am the leader of Catherine's Daisy troop. I love my crazy Daisies! I have 17 kindergartners and 1st graders this year, and we have a blast every meeting. My older DD, Carmella is a Brownie, and there was no way I was going to leave Catherine out of the fun, so I became a leader and started a new Daisy troop for her and her classmates. For all of the things she can't do, there are so many things she can do as a GS.
Wow! You have even more in your troop than we have!! Every year we start off with a bang, and then it dwindles down to our usual 5-6 girls that have been with us since Daisy-hood. Right now, we still have about 14!!! That's crazy for us. Usually everyone drops out for some reason. We do a few field trips, a couple badges and parties- so the usual. We just finished cookie sales- hopefully everyone will turn in their money! So glad I'm not the cookie mom. Next year ours will be Juniors- I can't believe it....
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Old 03-25-2010, 05:13 PM   #6
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Quote:
Originally Posted by pnutallergymom View Post
Hey Laura!!!

Welcome!!!

Congrats on the Wish!!! Can't wait to keep reading along with you!!!

My wish child, Brigitte and your daughter have ALOT in common. Brigitte also has had a few open heart surgeries and a few caths too!! She has Noonan Syndrome. Her cardiac defects are pulmonary stenosis, hypertrophic cardiomyopathy, ASD and we just found out in Feb. she is missing her entire right coronary artery. They think she had a heart attack at some point and it clotted off. During her first OHS she had her main proximal pulmonary artery enlarged. She also has strabismus!! But is usually the happiest kid in my house!!!!

Good luck planning!!! What ADR's do you have booked???

Hi Shannon! Thanks for the welcome. I will try to add some more tomorrow about what we have booked so far. We've tried to make a lot of "just in case" ADR's.

It does sound like Brigitte and Catherine have a lot in common! She has severe pulmonic stenosis, and has had stents placed in both branches. That has bought us quite a bit of time in between surgeries, being able to open the stents up in the cath lab. Who ever thought that having a child have a cardiac cath would be easy? Well, it is compared to the open heart stuff! Sounds like Brigitte has been through quite a bit and is a special girl! I look forward to getting to know everyone more! I love reading the stories and trip reports...it's addicting!!
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Old 03-25-2010, 07:26 PM   #7
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Hi Laura!!

Subbing in! Can't wait to hear more! Sounds like Catherine and all of you certainly deserve to celebrate at Disney! YAY!

I know what you mean about making a lot of ADR's....I need to cancel the "just in case" ones that I made!!

Also, my oldest daughter is a Daisy too and loves it. I'm the designated cookie mom for the troop-- just so I can have an excuse to eat them!!
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Old 03-25-2010, 07:53 PM   #8
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Welcome.. I'm subbing to follow along :-)

My daughter has Hydro, shunt, Strabismus and PDA...

Can't wait for more info on your trip
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Old 03-26-2010, 09:39 AM   #9
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Quote:
Originally Posted by noahsketomom View Post
Hi Laura!!

Subbing in! Can't wait to hear more! Sounds like Catherine and all of you certainly deserve to celebrate at Disney! YAY!

I know what you mean about making a lot of ADR's....I need to cancel the "just in case" ones that I made!!

Also, my oldest daughter is a Daisy too and loves it. I'm the designated cookie mom for the troop-- just so I can have an excuse to eat them!!
Hi! Looks like your trip is coming up quickly! You guys must be getting so excited. I started to read your PTR last night. It's so addicting once I start reading...my house is falling apart from neglect! The laundry is piled high! It's all for a good cause, I guess!

Yea for Daisies, and the cookie mom? That's a crazy job, so good for you to take it on!



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Welcome.. I'm subbing to follow along :-)

My daughter has Hydro, shunt, Strabismus and PDA...

Can't wait for more info on your trip
Thank you! Sounds like Ashley and Catherine have some things in common! I'll have to get over and read your story!
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Old 03-26-2010, 10:28 AM   #10
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Hi there!

I went to put your trip on the Wish Trippers thread yesterday and the boards went down for maintenance for 2 hours.

But it is on there now!
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Old 03-26-2010, 10:50 AM   #11
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Hi there!

I went to put your trip on the Wish Trippers thread yesterday and the boards went down for maintenance for 2 hours.

But it is on there now!
THanks Maroo!!
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Old 03-26-2010, 11:23 AM   #12
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Some pics, and a little more introduction!

So, I figured the rest of the family needed a little more introduction. And, I hope I have figured out how to post pictures. I am kinda clueless when it comes to this stuff, so I'm muddling my way through!

Here's a family pic...
Myself and DH Dave
Catherine, Carmella, and John


I am 39 (for at least another month or so!). Used to be an ICU/Burn RN, but now stay home. Working got very hard with three kids, and one with special needs, so after John was born I became a SAHM. Not an easy job, that's for sure. I love to run, and am currently training for a women's sprint triathlon at the end of the summer. I am NOT fit, but long to be...perhaps that's another story you could follow along with me! I also love to read and cook, and LOVE being at the beach.

DH Dave is also 39 (although constantly reminding me that he's younger than I am!). He works at corporate HQ for a large hotel chain. Middle management, white collar. He plays baseball every week in a league, and coaches John's team. We've been married for almost 11 years!

Carmella is 8 years old, and in 2nd grade. She's a teenager in the making! She recently cut off about 6 inches of hair but I apparently haven't taken any new ones of her since the big chop. The girls share a room, and are really the best of friends. She plays basketball, and will give soccer a try this spring. She's definitely the most shy of my kids. Loves all the big girl Disney shows like Wizards of Waverly Place, Hannah Montana and Suite Life.


Here's Catherine. She's 6 1/2 now. We held her back a year because of everything she has been through and gave her a year to grow socially. It was the best move we ever made, and gave her tons of confidence. She's bubbly, and a friend to anyone who will have her. What she lacks in size, she makes up for in personality! She's all princess and pink.



John is 5, and in pre-k. He's had his share of struggles due to asthma, which we think is finally coming under better control. I think he thinks Catherine is now his little sister since he is now bigger than her! Catherine doesn't think it's so funny, and she always reminds him that she's older and smarter! John plays baseball, soccer, and loves to ride his scooter. He is constantly on the go, always has something to say, and is truly everyone's friend. While Lightning McQueen and Star Wars are his favorites, he is even willing to dress up as a princess every now and then, just to have someone to play with.


One mor recent one of all 3!
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Old 03-26-2010, 12:45 PM   #13
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Thank you for sharing the family pics... Beautiful Family :-)

Your trip isn't to far after mine :-)
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Old 03-26-2010, 01:10 PM   #14
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DH Dave is also 39 (although constantly reminding me that he's younger than I am!).
OMG!!! That is so my DH too!! He is like 6 months younger than me and always has to remind me that he's the younger man!! lol

Also- your 8 year old is just like my now 9 year old!! Wizards of Waverly Place and Hannah Montana are a way of life for her! I think she will literally freak out when Hannah Montana finally quits making new episodes.

Great family pics!! Uber cute kiddos!
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Old 03-26-2010, 01:10 PM   #15
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Hey Laura.................

and a big Welcome from another cardiac family. My Matty has Hypoplastic Left Heart and has had 3 open hearts, countless caths and then some (I've started forget.........thankfully LOL). He's a little bit of thing too and I also held him back a year for school primarily because of his size but also just to give him a 'leg up' when he finally did go. He is also in Kindergarten. CHOP is such a wonderful cardiac hospital. It's nice to be in good hands. We went on our Wish trip in December so I'm hanging around here "trying" to finish our TR and fiddling around with a new PTR for a trip we've got going in 5 weeks. Looking forward to following along and offering up whatever help/support you may need along the way. GKTW is just incredible. You'll have a ball and make memories for a lifetime

oh, and.............you have a beautiful family!
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