Hello! After spending many weeks enjoying other people’s pre and post trip reports, I thought it was about time that I introduce our family. I’ve read so many great trip reports, I just hope I can do mine justice!
Here’s our family:
Me: Alison, a mostly stay-at-home mother who still does some consulting work on the side. Although I spent 22 years in public accounting, nothing has been a more fulfilling role than my 9 years as a mother to our wonderful boys. Yup, that was 22 years in accounting, and I didn’t start after elementary school! Do the math, and you won’t be surprised to hear that I turned 47 recently. How did that happen?!? I can’t be 47…can I?
DH: Peter, likes to point out that he’s the younger man, but as he turns 46 in September, that doesn’t hold water. Also a Chartered Accountant (we’re from Canada), he now works in the mutual fund industry. He’s an avid cyclist…rode >10,000 kms –whoops, make that 6,000 miles – last year. He’s a terrific Dad who has been so supportive and loving to our little premies. Didn’t think he’d like WDW that much for our first trip in 2006, but was pleasantly surprised…enough that he agreed to a Disneyland trip last December.
DS’s: Our twin boys, Douglas and Mark. Mark is our Wish child, although when I think of what they went through upon birth, Douglas is pretty deserving, too. The boys will be turning 10 on October, just over a week before we leave for our Wish Trip.
We're heading to Orlando, especially WDW, on November 1, 2008. We're spending a week at Give Kids the World, the most amazing place for families of Wish kids enjoying their special time together. We're also adding on 3 nights at our own cost to round out the trip. Mark's describes this trip as his "unfinished business in Orlando" trip. More on that later!
Douglas and Mark were born over 3 months early, at 26 weeks, each weighing just over 2 lbs. For those of you with premies, it was really a very typical, up and down, experience. We saw most of the premie issues: respiratory issues with extended intubation, intraventricular hemorrhage, PDA’s, retinopathy of prematurity, aspiration pneumonia, and then all the time to learn to feed and grow, baby grow. Mark’s lung issues were more severe initially – Peter was there as Mark struggled as he had bleeding in the lungs. With Mark failing, there was a stat call for doctors, respiratory techs…and the crash cart. Thanks to a specialized ventilator, he pulled through. He also had a “brain bleed”, leading to a ludicrous moment we’ll always remember – being told Mark had this bleed, that they didn’t know how severe it was, they were doing a head ultrasound to assess, and that we should consider what we would like them to do in the case of poor results…and then the doctor said: “well, it’s just about lunch time. Maybe you can get something to eat while we do this testing”. Yup, as if I ever dreamed I could ever eat again at that point?!?
Douglas took us down several frightening paths and then would pull back, right at the abyss. And he just loved respiratory support, and only finally came off it once his brother left the hospital. It was like he realized that if he could just give up that low flow, he could be back together with his twin. And 3 days later, he was – and other than ongoing lung issues, he hasn’t looked back.
When we left the hospital after 3 ½ months, we were hopeful that all was well. After 6 months at home, it was clear that Mark’s body just didn’t move the same way as Douglas’. An NICU follow up discussion confirmed that Mark had cerebral palsy.
Fast forward to today:
Mark and Douglas are entering Grade 5 at our local public school. They are bright, interesting fellows who make us proud. Mark’s CP is assessed as “moderate”, and he uses a walker to get around most of the time. He’s working hard to master quad canes, but is still building his confidence. He is age appropriate re: his cognitive, social, verbal skills.
Mark had severe gastroesophageal reflux and eventually had surgery when he was 4. In the meantime, he had been deemed “failure to thrive” and a feeding tube was placed when he was 3 to supplement his nutrition. He still has the feeding tube, because at age 9 ½, he weighs a whopping 44 lbs! Every night, I hook up his feeding which runs 2.5 hours while he’s sleeping. I’ve mastered sleeping on the floor in the hallway outside their room, getting up at 1:30 to flush and switch it off, then climbing into my proper bed. OK, well sometimes I start the tube and come back downstairs to see what’s new on these boards, which is why I’m often posting late at night.
As well as some minor surgery both boys had when they were 1, Mark has also had surgery to correct his drooling (controlling this is a motor skill that ws impaired by his CP, redirecting the saliva flow has eleiminated it completely), and has botox injections to manage his spasticity (yup, botox like the wrinkles, but I'll never be able to get it because as Mark says "I can't believe people would actually choose to go through those painful injections just to look younger!"). For Mark, a botox session means 15-20 injections. His weeks include daily stretching and physio with us, as well as 2 physio appointments.
Mark does have real issues with stamina, and we need to make the most of our time in the parks because his energy can fizzle fast. The GAC has been so helpful so we can make the most of our days. We need to be sure we don’t push too far, or he’ll wind up back in the hotel room, not feeling well. We know – it’s happened both trips so far, and we’re determined to have everyone stay healthy this trip!
I haven’t tried posting pictures yet, but here’s a link to a recent newspaper article about Mark returning to Camp Awakening, an overnight camp for children with physical disabilites: http://www.thestar.com/FreshAirFund/article/451319
Admittedly, by the time this pic was taken, Mark was “done” with smiling for the camera!
Well, I could say so much more, but this is already so long! In my next post, I’ll tell you about how Mark's wish is being granted by the Starlight Starbright Children’s Foundation of Canada!
Alison
Here’s our family:
Me: Alison, a mostly stay-at-home mother who still does some consulting work on the side. Although I spent 22 years in public accounting, nothing has been a more fulfilling role than my 9 years as a mother to our wonderful boys. Yup, that was 22 years in accounting, and I didn’t start after elementary school! Do the math, and you won’t be surprised to hear that I turned 47 recently. How did that happen?!? I can’t be 47…can I?
DH: Peter, likes to point out that he’s the younger man, but as he turns 46 in September, that doesn’t hold water. Also a Chartered Accountant (we’re from Canada), he now works in the mutual fund industry. He’s an avid cyclist…rode >10,000 kms –whoops, make that 6,000 miles – last year. He’s a terrific Dad who has been so supportive and loving to our little premies. Didn’t think he’d like WDW that much for our first trip in 2006, but was pleasantly surprised…enough that he agreed to a Disneyland trip last December.
DS’s: Our twin boys, Douglas and Mark. Mark is our Wish child, although when I think of what they went through upon birth, Douglas is pretty deserving, too. The boys will be turning 10 on October, just over a week before we leave for our Wish Trip.
We're heading to Orlando, especially WDW, on November 1, 2008. We're spending a week at Give Kids the World, the most amazing place for families of Wish kids enjoying their special time together. We're also adding on 3 nights at our own cost to round out the trip. Mark's describes this trip as his "unfinished business in Orlando" trip. More on that later!
Douglas and Mark were born over 3 months early, at 26 weeks, each weighing just over 2 lbs. For those of you with premies, it was really a very typical, up and down, experience. We saw most of the premie issues: respiratory issues with extended intubation, intraventricular hemorrhage, PDA’s, retinopathy of prematurity, aspiration pneumonia, and then all the time to learn to feed and grow, baby grow. Mark’s lung issues were more severe initially – Peter was there as Mark struggled as he had bleeding in the lungs. With Mark failing, there was a stat call for doctors, respiratory techs…and the crash cart. Thanks to a specialized ventilator, he pulled through. He also had a “brain bleed”, leading to a ludicrous moment we’ll always remember – being told Mark had this bleed, that they didn’t know how severe it was, they were doing a head ultrasound to assess, and that we should consider what we would like them to do in the case of poor results…and then the doctor said: “well, it’s just about lunch time. Maybe you can get something to eat while we do this testing”. Yup, as if I ever dreamed I could ever eat again at that point?!?
Douglas took us down several frightening paths and then would pull back, right at the abyss. And he just loved respiratory support, and only finally came off it once his brother left the hospital. It was like he realized that if he could just give up that low flow, he could be back together with his twin. And 3 days later, he was – and other than ongoing lung issues, he hasn’t looked back.
When we left the hospital after 3 ½ months, we were hopeful that all was well. After 6 months at home, it was clear that Mark’s body just didn’t move the same way as Douglas’. An NICU follow up discussion confirmed that Mark had cerebral palsy.
Fast forward to today:
Mark and Douglas are entering Grade 5 at our local public school. They are bright, interesting fellows who make us proud. Mark’s CP is assessed as “moderate”, and he uses a walker to get around most of the time. He’s working hard to master quad canes, but is still building his confidence. He is age appropriate re: his cognitive, social, verbal skills.
Mark had severe gastroesophageal reflux and eventually had surgery when he was 4. In the meantime, he had been deemed “failure to thrive” and a feeding tube was placed when he was 3 to supplement his nutrition. He still has the feeding tube, because at age 9 ½, he weighs a whopping 44 lbs! Every night, I hook up his feeding which runs 2.5 hours while he’s sleeping. I’ve mastered sleeping on the floor in the hallway outside their room, getting up at 1:30 to flush and switch it off, then climbing into my proper bed. OK, well sometimes I start the tube and come back downstairs to see what’s new on these boards, which is why I’m often posting late at night.
As well as some minor surgery both boys had when they were 1, Mark has also had surgery to correct his drooling (controlling this is a motor skill that ws impaired by his CP, redirecting the saliva flow has eleiminated it completely), and has botox injections to manage his spasticity (yup, botox like the wrinkles, but I'll never be able to get it because as Mark says "I can't believe people would actually choose to go through those painful injections just to look younger!"). For Mark, a botox session means 15-20 injections. His weeks include daily stretching and physio with us, as well as 2 physio appointments.
Mark does have real issues with stamina, and we need to make the most of our time in the parks because his energy can fizzle fast. The GAC has been so helpful so we can make the most of our days. We need to be sure we don’t push too far, or he’ll wind up back in the hotel room, not feeling well. We know – it’s happened both trips so far, and we’re determined to have everyone stay healthy this trip!
I haven’t tried posting pictures yet, but here’s a link to a recent newspaper article about Mark returning to Camp Awakening, an overnight camp for children with physical disabilites: http://www.thestar.com/FreshAirFund/article/451319
Admittedly, by the time this pic was taken, Mark was “done” with smiling for the camera!
Well, I could say so much more, but this is already so long! In my next post, I’ll tell you about how Mark's wish is being granted by the Starlight Starbright Children’s Foundation of Canada!
Alison
Great start!!!
I'm reading along and can't wait to hear more.
