balloondoggle
Earning My Ears
- Joined
- Mar 30, 2010
- Messages
- 57
Day 5 is in the can.
The end is near.
The end is near.
Nothing like a little electronic isolation to make those long stays more enticing. Hope all is well.Yes...I'm back. Nine days in the hospital with no WiFi wasn't fun. I hope I can now catch up on everything.
[...] especially your avatar photo, with kayla wearing the clown nose. [...]
Day 5 is in the can.
The end is near.
Yes...I'm back. Nine days in the hospital with no WiFi wasn't fun. I hope I can now catch up on everything.
does any one have any info on these 2 gktw activities. in our info from maw it just says "casting for catfish" is on tue and fri nights, and only mentions the pool party. neither of these are listed on gktw website, so i'm guessing they're pretty new. also on gktw website (and on this thread) i've seen mention of a gktw info packet, is this sent to your home? the only info we received from maw about gktw is about our airport greeter, some activities, and very vague info about the villas and meals. a lot of the info we were given contradicts what's on gktw website. it's not really a big deal, i know it will all be explained at orientation, it just makes it difficult to plan our days if I don't know what's going on at gktw.oh well, we leave in 8 days...and we're so excited!!!
![]()
does any one have any info on these 2 gktw activities. in our info from maw it just says "casting for catfish" is on tue and fri nights, and only mentions the pool party. neither of these are listed on gktw website, so i'm guessing they're pretty new. also on gktw website (and on this thread) i've seen mention of a gktw info packet, is this sent to your home? the only info we received from maw about gktw is about our airport greeter, some activities, and very vague info about the villas and meals. a lot of the info we were given contradicts what's on gktw website. it's not really a big deal, i know it will all be explained at orientation, it just makes it difficult to plan our days if I don't know what's going on at gktw.oh well, we leave in 8 days...and we're so excited!!!
![]()
does any one have any info on these 2 gktw activities. in our info from maw it just says "casting for catfish" is on tue and fri nights, and only mentions the pool party. neither of these are listed on gktw website, so i'm guessing they're pretty new. also on gktw website (and on this thread) i've seen mention of a gktw info packet, is this sent to your home? the only info we received from maw about gktw is about our airport greeter, some activities, and very vague info about the villas and meals. a lot of the info we were given contradicts what's on gktw website. it's not really a big deal, i know it will all be explained at orientation, it just makes it difficult to plan our days if I don't know what's going on at gktw.oh well, we leave in 8 days...and we're so excited!!!
![]()
My name is Jessica and I'm the wife of Rick, and proud mother of Dominick 6, and Laila 2.
Dominick is our wish child. I got pregnant with Dominick shortly after my 18th birthday (surprise! ) and during my routine mid-pregnancy ultrasound the doctors found some abnormalities. We were told our baby didn't have a face, a brain, only half a spinal cord, and under developed legs. A month later we saw a maternal fetal medicine doctor who diagnosed Dominick with spina bifida.He did indeed have problems with his legs, spine, and brain, but with surgery and proper care he would live. We were told he would have developmental delays, physical delays, and require 2 surgeries in the first few days of life, and various other surgeries through out his life, as well as bowel and bladder incontenence. As an effect of the spina bifida he has hydrocephalus, neurogenic bowel and bladder, arnold chiari malformation II,and hydronephrosis. He was given a 5% chance of not being paralyzed. This doctor told us they only place in our area that can give him the care he needs is at Milton Hershey Medical Center. So that's where Dominick was born.
Dominick was born 4 weeks early through scheduled c-section, and was immediately taken to the NICU. But we got a wonderful surprise, he was not paralyzed, he could wiggle his toes! The day after he was born he had his 1st surgery which put his spinal cord back in to the spinal column, and closed up the opening. At 5 days old Dominick had his second surgery, in which they placed his first VP shunt system to control the hydrocephalus. The next day when my baby was 6 days old I finally got to hold him! When Dom was 8 days home he got to go home! He immediately started receiving physical therapy. Medically speaking the next year was pretty uneventful. In May 2005 Dominick's dad and I got married. Two weeks after our wedding Dom had surgery scheduled to correct strabismus, an eye condition in which the eyes try to focus separately sothe brain shuts off the weak eye. That went well and he now wears bifocal glasses to fine tune his vision. The major issues started in June 2005 when Dom had his 1st shunt revision, the dr made a major mistake and Dom ended up needing 5 subsequent surgeries to fix this problem. He had 3 surgeries in a 5 week span,all of which were emergency, they just had a really difficult time correcting the dr's mistake. Then in December 2005 the scar tissue on the top of Dom's head tore open because it was so damaged it couldn't stretch like it needed to in order to accomidate his growing skull. Dominick spent 2 weeks in intensive care with an external shunt in his brain, an infection in his spinal fluid, and a cast from his armpits to his toes( poor thing also had a broken femur at the time). They ended up having to do plastic surgery to repair the large area of damaged skin ( about the diameter of a tennis ball). Luckily that seemed to do the trick! Dom has had the same shunt since then. His most recent surgery was in September 2009. This was an ACE(antigrade continence enema). They took his appendix, connected one end to a port in his tummy, and the other end to the top of his bowel. Now every day pass a catheter of an enema bag through the appendix and can irrigate his bowel directly where it needs to be. He in now in big boy underwear! Dominick is starting 1st grade in 2 weeks and has far exceeded everyone's expectations! He really struggles with reading writing, he is at a level you would expect a 4 year old to be at, but he is at a 4th grade math level(this he got from his dad). He gets PT,OT, and speech every week. Right now we are still trying to come up with the perfect bowel and bladder regimen for Dom, but we're getting there. Every time we see a dr we are given a new complication to watch out for. So far he has every one of them. The most recent being seizures.
I also have a beautiful little girl, Laila. She just turned 2. When we learned of Dom's health issues we thought we didn't want any more children, but decided we wanted one sibling for him, a special friend, he says. After 2 years of fertility treatments, and treatments to prevent spina bifida, I got pregnant. We call Laila our super baby. She has been advanced from the day she was born. All the doctors and nurses came to see her the day she born because they never saw a baby hold their head up the day they were born. Poor Dominick gets mad because he struggles every day with his homework and Laila comes over and tells him the answers. I have a feeling their teenage years will be very interesting!
Back in May we got in contact with another family at Hershey Medical Center and they asked if Dom has received a wish. We said no, so they referred us to MAW. Dom was so excited to hear that he was approved! He immediately knew what his wish was, the one thing we were never able to give him. He wanted to go to Mickey's house!! So in the middle of July we meet with our wonderful volunteers, and 3 day later we found out his wish was approved! So we're officially going to Disney!
We will be there at the same time!! Do you have a PTR?
I called about the per-arrival packet. They said to expect it the week before we go. Which is this week I guess.
We now have our dates for Dom's special trip, September 18-24th!!
We are very excited. I keep crying everytime I think about it, of course I cry about everything!
Here's what our plans are for the week
Sat sept 18:
4:30 am - Me and dh get up and hit the showers
5:00am- get Dom up to do his ACE flush
6:00- dh gets Dom dressed, I get Laila up and going
6:15- give the kids their dail quota of poptarts while we double check that we have everything
6:45- be on the porch with all our luggage
7:00- Limo arrives!
now that I'm looking at this maybe I better get up earlier....?! lol
8:15am - arrive at PHL, navitage the airport, survive security in tact(none of us have ever flown, and I'm freaking out)
10:20am- depart PHL for MCO
1:00pm- arrive at MCO, meet our GKTW greeter
the rest of the day is up in the air(not literally, that's the morning's activity)
we're scheduled for 7:45 pm orientation, i'm hoping we'll be able to attend an earlier one to get it out of the way. the rest of the day we will spend exploring GKTW
we have to stick to our morning routine because of Dom's ACE flush, it has to be done at the same time everyday, 7:00 am, so we'll be getting up early every day, bed time on the other, I guess we'll see.
sun sept 19:
up bright and early! Today is the day that Dominick's wish will really be fulfilled, to meet Mickey Mouse! Our first full day will be spent at MK!! Breakfast at GKTW then off to MK! Lunch probably at Cosmic Ray's, or wherever we happen to be when the kids get hungry. I'm hoping to make it till wishes at 10:00pm but I don't see that happening. Maybe a mid day break will help. We'll play it by ear, bedtime is usually 9:00 so with having to get up early, I don't think we'll make it
mon sept 20:
EPCOT today! today is our only ADR at the rose and crown, dh is dying for some bangers and mash. Dom loves science so I think we'll be spending a good bit of time at future world, I'm personally looking forward to world showcase. we'll do breakfast at GKTW and stop in to see the characters at the theater, then off to EPCOT. Maybe we'll last long enough today to see some fireworks....
tues sept 21:
today is a down day for us, Is there such a thing with 2 kids? We're gonna skip the parks today. Am at GKTW, I really want to have some time to experience GKTW, and have some time to just play. We're planning to head to DTD for a few hours after lunch, then back to GKTW for the catfish contest, Dom loves to fish!
wed Sept 22:
get up, have breakfast, and do some horseback rides. then off to AK and maybe HS. My kids have never been to the zoo( a shame I know living so close to zooamerica and philly), so they're excited about AK,and Dom is into Dinosaurs so he's looking forward to digging up some bones, like his crush Dr. Brennen(from the show "bones")(lol, ok so not quite the same thing, but I'm not telling him that!) We're not sure if we're gonna go to HS, my kids are too little to do most things there, and the things that we want to do there are not musts, so I think it will all depend on our energy levels and how fast we make it through Ak. Lunch is planned at flametree BBQ, yum!
thur sept 23:
seaworld! DH wants to do the shark deep dive, but doesn't want to book it right now cuz he feels guilty about spending the money, so he said maybe while we're there we'll call to see if there's any availability. Dom doesn't like the idea of his dad swimming with sharks(he says it doesn't make a difference to him that his dad will be in a cage), maybe we shouldn't have let him watch jaws. seaworld closes at 6 so back to gktw for the christmas party. my son thinks that this is the actual christmas, so he's really excited, and he keeps trying to convince me that we need to pack the artificial tree. silly kid
frid sept 24: time to head back home
our flight leave MCO at 2:00 pm, so after our 11:00am check out at GKTW we'll probably get in one more carousel ride then head to the airport.
This will be our first visit to Florida for us all, so we're really gonna play things by ear. I'm usually a planner, but I want this trip to be relaxing and fun. We plan to take our time, and enjoy all the little details,and a full week together without having to worry about anything
Disney World here we come!!![]()
I have a question for all of you crafty people out there that do sewing and all of that stuff
We have been getting our big give gifts and when we try the shirts on, Austin complains that the stitching is not soft and he does not like the way it feels on his skin.
Is there something I can buy to cover that up so that the stitching is not touching his skin on his chest/tummy area?
Would it work to just buy some fabric and find a way to attach it on the inside of the shirt to cover the stitching?
does any one have any info on these 2 gktw activities. in our info from maw it just says "casting for catfish" is on tue and fri nights, and only mentions the pool party. neither of these are listed on gktw website, so i'm guessing they're pretty new. also on gktw website (and on this thread) i've seen mention of a gktw info packet, is this sent to your home? the only info we received from maw about gktw is about our airport greeter, some activities, and very vague info about the villas and meals. a lot of the info we were given contradicts what's on gktw website. it's not really a big deal, i know it will all be explained at orientation, it just makes it difficult to plan our days if I don't know what's going on at gktw.oh well, we leave in 8 days...and we're so excited!!!
![]()
We are going for our wish trip to Disney and will be staying at GKTW. We are wondering if anyone else has gone on a wish trip and extended it to stay extra days in Orlando and paid for it on their own. If so how did you work this out with the wish organization as far as flights and things like that went. Thanks
Mindy
We now have our dates for Dom's special trip, September 18-24th!!
We are very excited. I keep crying everytime I think about it, of course I cry about everything!
Here's what our plans are for the week
Sat sept 18:
4:30 am - Me and dh get up and hit the showers
5:00am- get Dom up to do his ACE flush
6:00- dh gets Dom dressed, I get Laila up and going
6:15- give the kids their dail quota of poptarts while we double check that we have everything
6:45- be on the porch with all our luggage
7:00- Limo arrives!
now that I'm looking at this maybe I better get up earlier....?! lol
8:15am - arrive at PHL, navitage the airport, survive security in tact(none of us have ever flown, and I'm freaking out)
10:20am- depart PHL for MCO
1:00pm- arrive at MCO, meet our GKTW greeter
the rest of the day is up in the air(not literally, that's the morning's activity)
we're scheduled for 7:45 pm orientation, i'm hoping we'll be able to attend an earlier one to get it out of the way. the rest of the day we will spend exploring GKTW
we have to stick to our morning routine because of Dom's ACE flush, it has to be done at the same time everyday, 7:00 am, so we'll be getting up early every day, bed time on the other, I guess we'll see.
sun sept 19:
up bright and early! Today is the day that Dominick's wish will really be fulfilled, to meet Mickey Mouse! Our first full day will be spent at MK!! Breakfast at GKTW then off to MK! Lunch probably at Cosmic Ray's, or wherever we happen to be when the kids get hungry. I'm hoping to make it till wishes at 10:00pm but I don't see that happening. Maybe a mid day break will help. We'll play it by ear, bedtime is usually 9:00 so with having to get up early, I don't think we'll make it
mon sept 20:
EPCOT today! today is our only ADR at the rose and crown, dh is dying for some bangers and mash. Dom loves science so I think we'll be spending a good bit of time at future world, I'm personally looking forward to world showcase. we'll do breakfast at GKTW and stop in to see the characters at the theater, then off to EPCOT. Maybe we'll last long enough today to see some fireworks....
tues sept 21:
today is a down day for us, Is there such a thing with 2 kids? We're gonna skip the parks today. Am at GKTW, I really want to have some time to experience GKTW, and have some time to just play. We're planning to head to DTD for a few hours after lunch, then back to GKTW for the catfish contest, Dom loves to fish!
wed Sept 22:
get up, have breakfast, and do some horseback rides. then off to AK and maybe HS. My kids have never been to the zoo( a shame I know living so close to zooamerica and philly), so they're excited about AK,and Dom is into Dinosaurs so he's looking forward to digging up some bones, like his crush Dr. Brennen(from the show "bones")(lol, ok so not quite the same thing, but I'm not telling him that!) We're not sure if we're gonna go to HS, my kids are too little to do most things there, and the things that we want to do there are not musts, so I think it will all depend on our energy levels and how fast we make it through Ak. Lunch is planned at flametree BBQ, yum!
thur sept 23:
seaworld! DH wants to do the shark deep dive, but doesn't want to book it right now cuz he feels guilty about spending the money, so he said maybe while we're there we'll call to see if there's any availability. Dom doesn't like the idea of his dad swimming with sharks(he says it doesn't make a difference to him that his dad will be in a cage), maybe we shouldn't have let him watch jaws. seaworld closes at 6 so back to gktw for the christmas party. my son thinks that this is the actual christmas, so he's really excited, and he keeps trying to convince me that we need to pack the artificial tree. silly kid
frid sept 24: time to head back home
our flight leave MCO at 2:00 pm, so after our 11:00am check out at GKTW we'll probably get in one more carousel ride then head to the airport.
This will be our first visit to Florida for us all, so we're really gonna play things by ear. I'm usually a planner, but I want this trip to be relaxing and fun. We plan to take our time, and enjoy all the little details,and a full week together without having to worry about anything
Disney World here we come!!![]()