Mickydees
Earning My Ears
- Joined
- Mar 31, 2007
- Messages
- 67
Hi all, following is Collin's Pre Trip Make A Wish Report. I hope many of you enjoy getting to know Collin and become informed about his disease. We will be going October 10 - 16, 2009. I will begin by introducing the cast of characters:
Collin (our wish kid) Age 6 will be seven 7/25
Angellyn Age 12
Mishelle Age 17
Lisa - Mom
Carey - Dad
As most other families we feel there are other kids that are more deserving. So reluctantly we let our MD recommended us. We are so looking forward to this trip. It will be a much needed break from our daily battle.
Briefly, Collin was a healthy boy until 11/07. He had fallen off his bed and bumped his head. (It was later explained the fall did not cause his vision loss but he was most likely already starting to have vision loss which caused the fall) He was taken to the ER, had a CT and everything looked fine. However within a few days he began losing his vision. After a visit to his eye doctor we were sent to a Pediatric Neurologist. After being quickly put into the hospital in Savannah, GA and starting a round of steroids and more tests it was determined Collin had Optic Neuritis. He was diagnosed with MS. In March of 08 we were sent to Children's Hospital at UAB in Birmingham, AL. We were then told we were not dealing with MS but with something called Devic's Disease. Don't feel bad we had never heard of it either. Instead of trying to explain it here feel free to visit http://www.collinsquest.org. Breifly it is a disease that attacks the mylen (an outer protective covering) on his nerves. This is what caused his initial vision loss and subsequent back and leg problems. Collin did regain much of his vision back but has had flare ups since then where he loses some or all of his vision. So far the steroid treatments bring back most of his vision. He is currently receiving monthly chemo treatments along with IVIG in between. This helps although he does have occasional flare ups and is not able to hold out for long periods of time. In the summer of 08 our Ped Neuro relocated out of state. Being unable to find another Ped Neuro familiar with his disease we moved from SE Georgia to NE Birmingham, AL to get the care he needs.
In a nut shell that is what brings us to our wish trip. Collin is so excited about his trip. We look forward to getting to know the other wish trippers. Feel free to offer any advice for our trip or if you have questions we will be glad to talk with you.
Guess that's enough for now (if anyone is still with me). Great to be here and looking forward to our adventure.
Collin (our wish kid) Age 6 will be seven 7/25
Angellyn Age 12
Mishelle Age 17
Lisa - Mom
Carey - Dad
As most other families we feel there are other kids that are more deserving. So reluctantly we let our MD recommended us. We are so looking forward to this trip. It will be a much needed break from our daily battle.
Briefly, Collin was a healthy boy until 11/07. He had fallen off his bed and bumped his head. (It was later explained the fall did not cause his vision loss but he was most likely already starting to have vision loss which caused the fall) He was taken to the ER, had a CT and everything looked fine. However within a few days he began losing his vision. After a visit to his eye doctor we were sent to a Pediatric Neurologist. After being quickly put into the hospital in Savannah, GA and starting a round of steroids and more tests it was determined Collin had Optic Neuritis. He was diagnosed with MS. In March of 08 we were sent to Children's Hospital at UAB in Birmingham, AL. We were then told we were not dealing with MS but with something called Devic's Disease. Don't feel bad we had never heard of it either. Instead of trying to explain it here feel free to visit http://www.collinsquest.org. Breifly it is a disease that attacks the mylen (an outer protective covering) on his nerves. This is what caused his initial vision loss and subsequent back and leg problems. Collin did regain much of his vision back but has had flare ups since then where he loses some or all of his vision. So far the steroid treatments bring back most of his vision. He is currently receiving monthly chemo treatments along with IVIG in between. This helps although he does have occasional flare ups and is not able to hold out for long periods of time. In the summer of 08 our Ped Neuro relocated out of state. Being unable to find another Ped Neuro familiar with his disease we moved from SE Georgia to NE Birmingham, AL to get the care he needs.
In a nut shell that is what brings us to our wish trip. Collin is so excited about his trip. We look forward to getting to know the other wish trippers. Feel free to offer any advice for our trip or if you have questions we will be glad to talk with you.
Guess that's enough for now (if anyone is still with me). Great to be here and looking forward to our adventure.
. I'm just so excited I want to know dates!! 
His doctor did a mini evaluation and said he was doing great. So no changes on treatment. At home meds stay the same and will continue with once a month chemo treatment (cytoxin). Hope he can keep it up and still be doing good for our MAW trip. Was told they had sent in paperwork for trip. So everything should be good to go now. Mom (Lisa) is having a great time at Premier national rally in Dallas. She can't wait to get home to show everyone the new jewelry. Think she also misses us a little. 
Collin had a rough time with her being gone yesterday. But he is doing ok today. Hope everyone has a great weekend
