LeeLee2U
DIS Veteran
- Joined
- Jun 22, 2007
Hello!
and
I am attempting to write this TR for several reasons
#1 because as a wish family I was searching high and low for any help I could recieve
#2 Because I recieved enormous help from the DIS and the TRs I read on it
#3 Because our trip was well Worthy of being put in print
and finally
#4 Beacause of several of you that have repeatedly asked if I was gong to do one. Well here it is! i hope you all get on and read it. It's been my fear that no ine would subscribe.
O.k. A little back ground info first.
This trip came around because of my DS5. DS5 is truly MY miracle child! I emphasize on My, because I know several of you out there have miracles of your own!
DS5 because of a pre-mature birth (13 weeks early) has spastic diplegia cerebral palsy due to the lack of oxygen that occured during his birth. Ironically he also had ROP (retinopathy ofPrematurity) due to too mucch oxygen after birth!! Go figure!
He is still showing over 97% brain damage. This causes all the Drs a little confusion, because in 5 years his brain has hardly changed. Usually as a person grows older the brain wiring changes as they grow during the first few years of Life. This has been the cause of numerous studies to be done on my son. They (the Drs) really wanted to be able to show how the brain adapts and changes, well as there has been very little to no change with his brain there should have been very little change with B. Well that's not been the case My son has went from being vegatative with little movement. To a happy growing 5 yr old who is now in reg. Kindergarten with No special ed pull outs!
That being said, B does suffer from some unknowns that they don't hink were caused from the pre-maturity but they aren't sure. He has an unknown metabolic disorder that definatly is effected with how much or how little he eats, but has not affected his sugar level. He has a problem with losing skills when he is sick and it has been as long as 13 months before regaining them. This was thought to maybe be a form of mitochondrial defect. Int he studies done they found that he has extra mito cells. As this has not been seen before he is the subject of much research!! He suffers from migraines and fluctuating muscle tone that is not caused by the CP. He also has a sensory integragation disorder. He has a list a mile long of diff things that I want get into at this time.
On June 5th we were going into our local Wal Mart. Both the boys were very excited as we had just been to the airport to meet my nephew and go eat with him. Our boys and their cousins are very close and Matt my nephew is like a brother/uncle to them. He is in Iraq and had just come in for 2 weeks leave after being gone for over 7 months, so we were excited!
Anyway The Texas Wishing Well was outside WalMart taking donations to send a family to San Antonio on a Wish Trip. We pulled out some money and as usual I was asked if I had filled out an app for B. I replied with the usual No thank you and a lady recognized me. She said didn't we get you to fill one out? I said yes 2 yrs ago. she said "Did you ever hear anything?" "no I replied. Well here fill out another one. I took the flyer, smiled and walked into Wal-Mart. This has been going on since I did fill out the first app after a call from some one who had met the founder of the org. I met him, filled it out and never heard anything. I never would fill out another one. When leaving Wal-Mart the lady said there they are and She brought over Mr. Frank one of the founders. He told me you know this is not for you it's for your son. Promptly chastised I filled out another app. He apologized and said he remembered meeting us but did not know what had happened to our app.
The next day I got a call asking if I could email some pics. 2 days later I got a call saying B had been approved and because they had lost our app 2 years earlier they were putting him on the top of the list. They had just finished fund raising for the little girl we donated to that night. We were very excited! We ha never been on a family vac. since B was born and this was a dream come true!
Well before I go any further I need to give a cast of characters
ME: 33 Leah A bit scatterbrained
DH: 32(in a week) Shannon We call him Grumpy, but just like the Dwarve we love him anyway!
DS7: Tyler and he'll be 8 next week!! Very hyper, but sweet and my bIG helper, loves all things military and all things piraty
DS5: Braeton our WISH child! He has a BIG heart. He's very brave and strong. He loves all things DISNEY!!! He also loves pirates and all things military!
and I am attempting to write this TR for several reasons
#1 because as a wish family I was searching high and low for any help I could recieve
#2 Because I recieved enormous help from the DIS and the TRs I read on it
#3 Because our trip was well Worthy of being put in print
and finally
#4 Beacause of several of you that have repeatedly asked if I was gong to do one. Well here it is! i hope you all get on and read it. It's been my fear that no ine would subscribe.
O.k. A little back ground info first.
This trip came around because of my DS5. DS5 is truly MY miracle child! I emphasize on My, because I know several of you out there have miracles of your own!
DS5 because of a pre-mature birth (13 weeks early) has spastic diplegia cerebral palsy due to the lack of oxygen that occured during his birth. Ironically he also had ROP (retinopathy ofPrematurity) due to too mucch oxygen after birth!! Go figure! He is still showing over 97% brain damage. This causes all the Drs a little confusion, because in 5 years his brain has hardly changed. Usually as a person grows older the brain wiring changes as they grow during the first few years of Life. This has been the cause of numerous studies to be done on my son. They (the Drs) really wanted to be able to show how the brain adapts and changes, well as there has been very little to no change with his brain there should have been very little change with B. Well that's not been the case My son has went from being vegatative with little movement. To a happy growing 5 yr old who is now in reg. Kindergarten with No special ed pull outs!
That being said, B does suffer from some unknowns that they don't hink were caused from the pre-maturity but they aren't sure. He has an unknown metabolic disorder that definatly is effected with how much or how little he eats, but has not affected his sugar level. He has a problem with losing skills when he is sick and it has been as long as 13 months before regaining them. This was thought to maybe be a form of mitochondrial defect. Int he studies done they found that he has extra mito cells. As this has not been seen before he is the subject of much research!! He suffers from migraines and fluctuating muscle tone that is not caused by the CP. He also has a sensory integragation disorder. He has a list a mile long of diff things that I want get into at this time.
On June 5th we were going into our local Wal Mart. Both the boys were very excited as we had just been to the airport to meet my nephew and go eat with him. Our boys and their cousins are very close and Matt my nephew is like a brother/uncle to them. He is in Iraq and had just come in for 2 weeks leave after being gone for over 7 months, so we were excited!
Anyway The Texas Wishing Well was outside WalMart taking donations to send a family to San Antonio on a Wish Trip. We pulled out some money and as usual I was asked if I had filled out an app for B. I replied with the usual No thank you and a lady recognized me. She said didn't we get you to fill one out? I said yes 2 yrs ago. she said "Did you ever hear anything?" "no I replied. Well here fill out another one. I took the flyer, smiled and walked into Wal-Mart. This has been going on since I did fill out the first app after a call from some one who had met the founder of the org. I met him, filled it out and never heard anything. I never would fill out another one. When leaving Wal-Mart the lady said there they are and She brought over Mr. Frank one of the founders. He told me you know this is not for you it's for your son. Promptly chastised I filled out another app. He apologized and said he remembered meeting us but did not know what had happened to our app.
The next day I got a call asking if I could email some pics. 2 days later I got a call saying B had been approved and because they had lost our app 2 years earlier they were putting him on the top of the list. They had just finished fund raising for the little girl we donated to that night. We were very excited! We ha never been on a family vac. since B was born and this was a dream come true!
Well before I go any further I need to give a cast of characters
ME: 33 Leah A bit scatterbrained
DH: 32(in a week) Shannon We call him Grumpy, but just like the Dwarve we love him anyway!
DS7: Tyler and he'll be 8 next week!! Very hyper, but sweet and my bIG helper, loves all things military and all things piraty
DS5: Braeton our WISH child! He has a BIG heart. He's very brave and strong. He loves all things DISNEY!!! He also loves pirates and all things military!
Was it wonderful?
Tell us, tell us!
Plus I haven't been the exact picture of health, but hey I'm a Mom so I just Deal with it!!
