Pixie Dust, Princess Magic and Christmas Cheer!Trip report Day 1

[MagicMomentsMom]

Well I'm just jumping in here and starting my PTR! It seems so far away--but it's only 153 days So here goes! We're staying from Dec 1st to Dec 12th at the Pop Century Resort


Introducing the Magical Princess Seeking bunch of characters


Princess GenevaClaire(formerly known as Preemie Princess), the 4 year old miracle star of this party and our very own princess here in the mtns!

Daddy Prince, aka Ben--in the land of the 40's

MommyQueen, aka Veronica--37 (nothing cute or funny about it, lol)

Our little family almost never happened--we had several very sad disappointments during our first 12 years of marriage--with 5 angels who are waiting for us all in Heaven. We became pregnant with GenevaClaire and fear and apprehension set in--we were afraid, very afraid. But the pregnancy passed the fearful mark, I was fat, happy and moving along very healthy--then the bottom dropped out. I woke up one January Morning, feeling fine--but as the morning went on the scene went from normal to horrifying. I was a pleasant 25 weeks preggo, doing the dishes, picking up the kitchen on a Saturday. Then the braxton contractions (or so I thought) started--"ok, I thought, no biggie" but those contractions started coming on a regular timed interval, then some other things started happening--my worst nightmare was happening all over again. A little time and prayer passed as I waited for the Doc to call me back, unfortunately he left his bedside manner at the office, because he proceeded to tell me that she was not viable and would not live. He told me to go to the hospital and they would call him if he was needed. Talk about a kick to the gut--I was heartbroke and horrified. We set off for the hospital, we were in L&D triage for just over an hour--when they determined I was in full blown premature labor--the race was on to stop it--unfortunately they couldn't--our preemie princess was born at 25 weeks, a micro preemie, weighing in at a whopping 1lb 15 ounces--12 inches long--not breathing, no cries to announce her royal birth--just silence--they did revive her and I saw her just for seconds before she was whisked off to the NICU.

Our world was about to spin on to the wildest ride we've ever been on, called the NICU rollercoaster. (believe me it's one ride you don't want to fastpass or get back in line to ride again) It's been 4 years, and 6 months since we got on it--pretty soon I really want to get off this ride....

 

[MagicMomentsMom]

oops--the pic of me and GC is too small--I'll fix and upload again!

 

[Lamping3]

You are truely blessed with a beautiful daughter. What a trooper you have to be to endure all you have! Can't wait to hear more!

 

[MagicMomentsMom]

Here is the first pic we have of DD at 2 days old--

and here's a pic of her from July 4th weekend

She has fought long and hard--some of this story may seem heartbreaking but it's really a testament to her strong will and her successful fight to overcome all of her adversities---her NICU journey was 3 months of systemic sepsis,Staph, BPD, ventilators, heart trouble and ROP Stage 4. She was discharged from the NICU and had to return 9 days later to the hospital for blood clots in her legs--discharged again, only to return a mere 3 days later for emergency bilateral laser surgery to both eyes to prevent total blindness from the ROP. We thought she was in the clear until she began silently aspirating into her lungs--the lungs were severely damaged from the ventilators and her lungs were not fully developed--causing BPD. So the damage was nearing a fatal point her, she was classified as a failure to thrive with imminent death--they admitted her into the hospital for a Nissen Fundoplication(to tie the stomach in a knot, to prevent fluid from reentering her lungs) and Gtube(feeding tube) surgery. One of the worst days of our life, because my beautiful 5 month old, 8lb baby girl died on the table during the surgery. She was revived after 3 minutes--but she suffered brain damage and now has Cerebal Palsy, which effects her walking pattern and swallowing pattern among other developmental issues. BUT that is such a small part of her life--she is a beautiful, happy and spoiled, little girl! That's her abbreviated birth story--I won't go into much more of her medical stuff, but I wanted to share just a little bit--the info might be needed as we plan and play with the princesses!

Her 1st trip to Disney is to celebrate her life, her struggles and her triumph over it all--she started her life as a preemie princess and now she finally gets to meet the Disney princesses!

 

[scoot241]

What a wonderful reason to celebrate! Glad to hear your daughter is doing well.

 

[MagicMomentsMom]

What a wonderful reason to celebrate! Glad to hear your daughter is doing well.

Thank you so much! We think she's the best reason to celebrate!

 

[MagicMomentsMom]

A little about Mommy Queen, aka Veronica, me

I came into this world 6 days after Walt Disney World opened to the public --I almost made the opening date, lol.

I've been to Disney world twice in 37.5 years--1st trip was in the 70's with my parents--I was 7 or 8, but there are no pics of the trip. My mom had just gotten out of the hospital with major abdominal surgery, she was on so many meds, she felt horrible. So when she loaded her camera, a 35 mm, she didn't realize that she didn't have some sort of battery installed. She took lots of pics, but it wasn't actually working I have a few fond memories of that trip--the swiss family robinson tree house, riding Space mtn with my mom, frozen bananas on a stick, and the tea cup ride and my mom being deathly sick and eating lots of takeout pizza...
Fast Forward to my senior year in high school (1989) I was a DECA member in High School and had previously competed in my State Championship and won 1st place in a few events--which granted me the right to compete in Florida at the National DECA Championships. I placed 3rd in Marketing and won a college scholarship. We only spent one day at Disney world, but I remember running for Space mtn at rope drop I also have some great pics of the parades too--just need to find them and dig them up. We left Disney World the day before MGM opened at Disney World.

I never thought much about Disney again until my Daughter was born--when she was a year old, me and the grands started talking about planning her 1st trip to DisneyWorld. Sadly, they won't be coming with us on her first trip, due to my Dad's health, they have encountered some issues with very high medical bills. I'm hoping I can save up enough money in 2010 to surprise them with a December trip next year paid for

Now the other stuff you're dying to know about me lol. I'm an avid photographer, I'm shooting with an Canon XS SLR--I've got a few lens I like to play with but nothing fancy. I play with photoshop alot too I've been scrapbooking for about 14 years and have worked for a few scrapbooking companies producing samples over the past 4 years. I tend to do just paper scrapping but I do like digi scrapping too!

Next up is Daddy Prince, aka Ben...........

 

[MagicMomentsMom]

You are truely blessed with a beautiful daughter. What a trooper you have to be to endure all you have! Can't wait to hear more!

Thank you!

 

[MagicMomentsMom]

Late Breaking news We have been given the opportunity to stay in a beach house in Charleston for 5 days FREE---wooooo hoooooooo! Our friends have the week at the beach house for free--the MIL paid for two weeks so we're headed down August 18 or 19th and staying till Sunday! We're so excited because this will be GenevaClaires FIRST ever beach trip yipppppeee! So I'm on a mini planning mission to get us ready to go--but this is a very laid back week--so not to much to plan (thank goodness, don't want to cut into the disney planning time, lol)

 

[m!ssemmx0]

Here is the first pic we have of DD at 2 days old--

and here's a pic of her from July 4th weekend

She has fought long and hard--some of this story may seem heartbreaking but it's really a testament to her strong will and her successful fight to overcome all of her adversities---her NICU journey was 3 months of systemic sepsis,Staph, BPD, ventilators, heart trouble and ROP Stage 4. She was discharged from the NICU and had to return 9 days later to the hospital for blood clots in her legs--discharged again, only to return a mere 3 days later for emergency bilateral laser surgery to both eyes to prevent total blindness from the ROP. We thought she was in the clear until she began silently aspirating into her lungs--the lungs were severely damaged from the ventilators and her lungs were not fully developed--causing BPD. So the damage was nearing a fatal point her, she was classified as a failure to thrive with imminent death--they admitted her into the hospital for a Nissen Fundoplication(to tie the stomach in a knot, to prevent fluid from reentering her lungs) and Gtube(feeding tube) surgery. One of the worst days of our life, because my beautiful 5 month old, 8lb baby girl died on the table during the surgery. She was revived after 3 minutes--but she suffered brain damage and now has Cerebal Palsy, which effects her walking pattern and swallowing pattern among other developmental issues. BUT that is such a small part of her life--she is a beautiful, happy and spoiled, little girl! That's her abbreviated birth story--I won't go into much more of her medical stuff, but I wanted to share just a little bit--the info might be needed as we plan and play with the princesses!

Her 1st trip to Disney is to celebrate her life, her struggles and her triumph over it all--she started her life as a preemie princess and now she finally gets to meet the Disney princesses!

There are tons of pictures like that first one in my house...my sister and I were born 4 months early and we both have CP (but it affected us differently). We're now turning 15 and August and made the honor roll in school. Our grandma finally took us to WDW in 2007...my TR's in my signature. It was an amazing experience for me...she'll definitely remember it forever

 

[MagicMomentsMom]

There are tons of pictures like that first one in my house...my sister and I were born 4 months early and we both have CP (but it affected us differently). We're now turning 15 and August and made the honor roll in school. Our grandma finally took us to WDW in 2007...my TR's in my signature. It was an amazing experience for me...she'll definitely remember it forever

You are an amazing girl! Way to go on the honor roll!!!!! I'm off to read your trip report from last year!

 

[m!ssemmx0]

You are an amazing girl! Way to go on the honor roll!!!!! I'm off to read your trip report from last year!

Aw thanks. People tell me those kinds of things all the time...I guess I'm just used to it after 15 years

 

[raider97]

As a mother, my heart breaks for you reading your story of what you have been through. You have such a beautiful little girl. We are also going this Christmas. I look forward to hearing about your planning and getting to know you better.

Stephanie

 

[MagicMomentsMom]

It's been an exciting few days around here--it started out with a puppy falling in a hole at 2:30am and living with us for a few days until we found his home and getting a brand new kitten all in the same 24 hours I'd like everyone to meet Belle....

She's such a sweet kitty and GenevaClaire is over the moon about her!

We're getting ready for the beach trip-I hit up a bunch of clearance sales yesterday and got some cute stuff--and today we're headed to the mall to see if we can find any other good sales!

 

[MagicMomentsMom]

As a mother, my heart breaks for you reading your story of what you have been through. You have such a beautiful little girl. We are also going this Christmas. I look forward to hearing about your planning and getting to know you better.

Stephanie

You are so sweet! Do you have a trip report? I'd love to read it!

 

[MagicMomentsMom]

ok sooooo I have some exciting news...........



are you ready for it???









I added on 5 more days to our Disney trip I was sitting here playing around on the reservation website, saw that there were more days available during our trip time and I got a wild urge to call and add them. Actually I sat down and thought about GenevaClaire and having to push her to see/do things at a pace that will not be comfortable or enjoyable to her (or us) so the extra time lets us take more time to enjoy, no rushing, no sensory overloads on her part or anxiety attacks. So now the official trip dates are Dec 1st thru Dec 12th

It keeps getting closer and closer to the double digit days on the countdown--which I'm making her a countdown "chain" sort of, that will start at 90 days--a combination of Mickey's and princess crowns Hopefully I can get it finished up after we get back from Charleston, SC next week.

Plus her 1st day of Special Needs Preschool is next Tuesday--i'm so sad. My baby girl won't be home with me during the day I'm scared to death but it is a special needs classroom, with a very small class size, 12 kids and 3 teachers. Plus her Occupational therapist and special ed teacher will work with her each day/week. She's very excited---
She also started seeing a special ABA therapist to help her with transition issues, eating issues and potty issues. SO we have a lot of homework to do between now and her next appt with the dr in Oct. She will be using a PECS daily schedule, we use one now, but not to the extent that they will be using from now on--

one more day and we're Charleston bound--this will be GenevaClaire's first trip to the coast--first time to view the ocean and play in the worlds largest sandbox I've been planning ahead for covering her feeding tube and trying to keep out the sand and yuck--found out that I can use Glad press and seal wrap--who would have thought??? Plus I got some more tagaderm to cover it to, just in case the press n' seal doesn't work out for us. I've got a million things to get packed, washed, done, etc by Wed morning at 6am--but here I am dis'ing away. We're going with friends of ours who have a little boy who is 9 months younger than GenevaClaire and a little girl who is 18 months younger than GenevaClaire and she loooooooooves to play with them so this is going to be such a wonderful trip for all of us! So I'll have lots of pics to share I'm sure when we get back

***Plus I should have some samples of the awesome silk my mom is using to make GenevaClaire's Aurora dress out of! Can't wait for her to get it done--it's a total Christmas princess version! I loooooove my mom--she so rocks on the sewing!

 

[Lamping3]

Veronica- I was wondering where you had went! That is so great about the extra days! There are so many more "non park" things you can fit in with extra days......Have you thought about the campfire sing along, watching Wishes from one of the monorail resorts beaches, or even just resort hopping looking at all of the Christmas decorations!

hugs for your transition to your baby going to preschool!

Have fun at the beach!

 

[MagicMomentsMom]

Veronica- I was wondering where you had went! That is so great about the extra days! There are so many more "non park" things you can fit in with extra days......Have you thought about the campfire sing along, watching Wishes from one of the monorail resorts beaches, or even just resort hopping looking at all of the Christmas decorations!

hugs for your transition to your baby going to preschool!

Have fun at the beach!

Awww thanks for thinking of us! We're up to our ears trying to get ready for the beach, school, new therapies--all the fun stuff I'm spending every waking minute I can planning the Disney trip! Ben says I'm OBSESSED (yep that should be in capital letters with a little sarcasm thrown in, he thinks I'm crazy) Wishes from one of the resort beaches will work out perfect for her, she can't tolerate the loud noises, but loves to look at fireworks--so that's a perfect option for her!Thank you so much for suggesting it! I thought about the horse drawn sleigh ride at FW and the campfire, we're doing the my disney girl tea party, possibly the wonderland tea party if they can accomodate her special needs (or at least let me hover by the door to make sure she's ok, lol):

 

[MagicMomentsMom]

well I'm officially stressed, lol. Spent the past 4 hours running around and packing, loading the car and stressing, lol. It's a rental house so nothing is there--so it's been sheets, blankets, towels etc. the whole nine yards plus food, clothes... I've packed waaaaaay toooo much. But It's making me so grateful that I don't have to pack all this stuff when it comes Disney time! And right before bed GenevaClaire starts coughing--asthma attack coughing or caught something yucky coughing--not sure yet. Gave her some zyrtec to see if it might be her allergies and she had her nightly inhalers--so heaven help us that we don't have to visit an ER at the beach and deal with hurricanes/tropical storms or both I'll see everyone soon--send us lots of good weather and good health wishes!

 

[MagicMomentsMom]

Wooo Hoooo--double digit countdown to play with the princesses!

We had a FANTASTIC trip to Charleston/Folly Beach! We ended up staying an extra night and got home late on Sunday. GenevaClaire had soooooo much fun. We had one serious scare with her on Thursday afternoon--we spent time at the beach and then came back to the beach house--well we promised her a trip to the Pirates Cove Playground up a few blocks from the house. It was about 5pm--so we thought it would be cooler, etc. Well after 10 minutes she looked like she had been put into a shower with all her clothes on--wringing wet from sweat, rapid pulse, you name it. So we put her in the car, got the a/c cranked--she keeps telling us she feels really bad. I'm trying to find an urgent care or hospital on the GPS menu, but it can't find one. Me and DH are both starting to freak out--so we drive off Folly Beach Island and head towards Charleston, in the direction of the nearest hospital we could find on the GPS. She rested on the drive, we got plenty of fluids in her and then she started to perk up before we got to Charleston. She also said that her head had stopped hurting so much. So I decided we would be ok administering pedialyte by Gtube for the rest of the trip and Thank God she didn't have a full on heat stroke. No more playground trips for her--
She also had a run in with some seashells on the bottom of her foot--so we ended up at the dr's office yesterday evening so he could give her some antibiotic cream for what appeared to be a slight infection in each area that the seashells had scratched/punctured her foot. She didn't even tell us that she had stepped on anything, she never felt it. We tried and tried to get her to keep the water sandals on, but she couldn't stand the sand when it got in them.

I woke up to a cold Sunday morning--UGH! Now it's a full blown respiratory infection....

GenevaClaire started her Special Ed Preschool full time this morningI've missed her so much this morning. It's a half day session today so I get to pick up my sweet girl at 12:30--Can't wait to hear how her first day went!

Ok so now on to some pics!