wishin' on a star
DIS Veteran
- Joined
- Mar 22, 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!
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!
Your DD sounds like she has gone through quite a bit and so could use a great family vacation. 
Next year ours will be Juniors- I can't believe it....
It's all for a good cause, I guess!
I'll have to get over and read your story!
when it comes to this stuff, so I'm muddling my way through! 
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.
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 
I think she will literally freak out when Hannah Montana finally quits making new episodes. 
I am younger then dh. He recently had knee surgery so I had to remind him who was younger
