After waiting since JANUARY we finally have Cole's newest surgery date!!! This is HUGE NEWS! We were promised in January that he would have the surgery over and done with by mid-spring... Well, CCS, Medi-Cal, authorizations, etc... some of you know what I am saying. Our surgery date is set for Tuesday, August 2, early in the morning. This is a repeat of a surgery he has had three times before. In basic terms, the dr. will shoot his left vocal chord with a botox type substance, and this will make it easier for Cole to swallow without aspirating into his lungs, easier for him to breathe, and easier for him to talk. It will last approximately 4-6 months. Then we will wait to be scheduled for the same surgery again. He will do a post op two weeks later, and be ready to move to North Carolina by Saturday, August 20th! Yahooooo!
Showing posts with label CHOC. Show all posts
Showing posts with label CHOC. Show all posts
Thursday, June 23, 2011
Hip! Hip! Hooray!!!
After waiting since JANUARY we finally have Cole's newest surgery date!!! This is HUGE NEWS! We were promised in January that he would have the surgery over and done with by mid-spring... Well, CCS, Medi-Cal, authorizations, etc... some of you know what I am saying. Our surgery date is set for Tuesday, August 2, early in the morning. This is a repeat of a surgery he has had three times before. In basic terms, the dr. will shoot his left vocal chord with a botox type substance, and this will make it easier for Cole to swallow without aspirating into his lungs, easier for him to breathe, and easier for him to talk. It will last approximately 4-6 months. Then we will wait to be scheduled for the same surgery again. He will do a post op two weeks later, and be ready to move to North Carolina by Saturday, August 20th! Yahooooo!
Thursday, September 25, 2008
Oncology
My heart is so full as I sit down to write my thoughts out today. Oncology. Wow. That is one of the scariest words to me.
Cole goes to CHOC (Children's Hospital of Orange County) every Monday and Thursday. They are the best hospital for children in all of this area. The toughest cases are all referred here. Down in the basement are the therapy rooms. They are like huge rooms with tons of fun equipment. Think sporting goods meets Toys R Us. Cole's favorite thing to do is climb up on a Tarzan rose swing and swing across the room and land in a big pit of balls. I'll try to video it next week.
This week we added a third and fourth hour to his normal weekly schedule. So we are at the hospital an our later then usual. We learned that this is when the Oncology kids get to come and play.
Oncology... I don't know how to express how amazing these kids are. They all wear masks, because any germ could literally destroy their frail systems and they would not survive it. Many of them wear full protective gear. Gloves, blankets, full covering. Some have beautiful hair, many do not. But everyone of them smiles. The entire time... smiles. How? I do not understand it. Smiles... These beautiful children are so happy. They love to get off their floor of the hospital and go play. Some come down to the therapy rooms, and some go out to the front lawns and playground. They are friendly, and kind, and full of questions. They love to talk to Cole. They want to know all about his backpack. They want to know if it is his chemotherapy bag. They ask him lots of questions and say things like, "awww poor little guy." These, the kids who have no hair and have to talk through masks... feel bad for my little boy who is healthy and thriving. They are not sitting up in their room full of self pity and despair. They are out playing, and from what I could tell, they live for these hours where they get to get out and play. One little boy about 8 years old was playing t-ball on the front lawn. Annaleese is 7, Latin American, and she loved playing with Cole, mothering him. I overheard a darling little Asian girl, maybe 6 years old asking if they could just sit outside. Just sit... and then I looked at the sky. And wow! It was so beautiful. And I wanted to just sit outside. These precious children of God are so happy to be able to play... to get a break and be away from their rooms. Some are accompanied by iv poles and lots of tubes. Cole and I are really familiar with that. All of them have a therapist or nurse with them. All walks of life, all nationalities, all languages...
I guess I just wanted to say thank you to my Heavenly Father. Thank you for the amazing health my children both have. And thank you for CHOC hospital having programs to help these children get better. But most of all, thank you for giving these children your joy, your love and your spirit. These children were happy. They were wonderful. They are my heroes.
Cole goes to CHOC (Children's Hospital of Orange County) every Monday and Thursday. They are the best hospital for children in all of this area. The toughest cases are all referred here. Down in the basement are the therapy rooms. They are like huge rooms with tons of fun equipment. Think sporting goods meets Toys R Us. Cole's favorite thing to do is climb up on a Tarzan rose swing and swing across the room and land in a big pit of balls. I'll try to video it next week.
This week we added a third and fourth hour to his normal weekly schedule. So we are at the hospital an our later then usual. We learned that this is when the Oncology kids get to come and play.
Oncology... I don't know how to express how amazing these kids are. They all wear masks, because any germ could literally destroy their frail systems and they would not survive it. Many of them wear full protective gear. Gloves, blankets, full covering. Some have beautiful hair, many do not. But everyone of them smiles. The entire time... smiles. How? I do not understand it. Smiles... These beautiful children are so happy. They love to get off their floor of the hospital and go play. Some come down to the therapy rooms, and some go out to the front lawns and playground. They are friendly, and kind, and full of questions. They love to talk to Cole. They want to know all about his backpack. They want to know if it is his chemotherapy bag. They ask him lots of questions and say things like, "awww poor little guy." These, the kids who have no hair and have to talk through masks... feel bad for my little boy who is healthy and thriving. They are not sitting up in their room full of self pity and despair. They are out playing, and from what I could tell, they live for these hours where they get to get out and play. One little boy about 8 years old was playing t-ball on the front lawn. Annaleese is 7, Latin American, and she loved playing with Cole, mothering him. I overheard a darling little Asian girl, maybe 6 years old asking if they could just sit outside. Just sit... and then I looked at the sky. And wow! It was so beautiful. And I wanted to just sit outside. These precious children of God are so happy to be able to play... to get a break and be away from their rooms. Some are accompanied by iv poles and lots of tubes. Cole and I are really familiar with that. All of them have a therapist or nurse with them. All walks of life, all nationalities, all languages...
I guess I just wanted to say thank you to my Heavenly Father. Thank you for the amazing health my children both have. And thank you for CHOC hospital having programs to help these children get better. But most of all, thank you for giving these children your joy, your love and your spirit. These children were happy. They were wonderful. They are my heroes.
Sunday, July 20, 2008
CHOC day at the Long Beach Marina
There are lots of perks with having a "special needs" kid. If it is even fair to call him that, now that he is doing so great, I often feel guilty for his blessings. I don't know why. It just seems that we were "supposed" to have it so tough, and now that Cole is thriving, I feel like we have stolen blessings and we are running off with them like a thief in the night! It might not make sense... but that is the best way to describe how it feels sometimes.
However, then Cole throws up all over me for the fourth time in a morning, right as I've just gotten out of the shower and I have to do ANOTHER load of laundry before going to his 7th therapy for the week, and I think... "Yeah, bring on the perks."
So here are some of the fun perks.
Handicap Parking... it rocks. Seriously, there is nothing more to say... it totally rocks.
Fast Pass line at Disneyland... Again, words can't describe how much we love this perk. Way to go Cole! You have saved many cousins HOURS in line for Nemo alone!
Another fun thing is that with Cole being so involved at CHOC hospital, we were invited to go to the Long Beach Marina CHOC day. All the therapists and many of the kids and their familes got to come spend the day playing with jet skis, boats, kayaks, and other fun events. It was all free, and In-and-Out sponsored a yummy lunch! We had a terrific day!
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