Saturday, July 31, 2010
"CONTROL"
Submitted by Colleen and Derrick on Tue, 09/15/2009 - 8:03am.Those of you that know me... know I like being in CONTROL... I like things the way I like and I need things just so!! Yesterday at 7:40 I had to hand over that control to... the bus driver that picked Devin up, Caitlin that had to get him to his class line, the school nurse who was going to give him is meds and feeds for the first time, and his Para who is with him in school to make sure this all goes right... ahhhhh!!! I am twitching! He on the other had loves it. He is up and ready to go at 6:45, so far our morning have run smoothly. Raymond is not to happy because for the first time he has to take public transportation to school... If he had his way I'd leave Devin standing on the bus stop and drive him... LOL!!! Caitlin is my new right hand... she delivers his medications and feeds to school and makes sure he gets where he needs to go... My "responsible" daughter!!
Soooo! much change in my life!!! I've gone from... running to the doctor weekly, drawing labs weekly even twice a week at times, searching high and low for answers on how to make Intestines that were so broken work.... how could we get them to absorb, how can we keep his Liver from failing, how could we control the diarrhea and vomiting, how could we keep the bacteria from the intestines from spreading to his blood stream... how could we keep him alive with good quality of life.... When medically they were telling us nothing more could be done.... Time was ticking!! HOW, OH HOW!! can I do this??? With only one option left their wasn't much choice... Transplant was our only hope.... So then I spent the next 11 months sitting and waiting... some days accepting the wait and others being very inpatient.. always wondering... if this was the right thing to do, the wrong thing to do, would he survive, was I trading quantity for quality... so many questions but not a lot of answers...
Well, here we are almost 7 months after his transplant and he is off to school... Lunch box and all... I can't believe it!!! (as many of you know he never ate orally until transplant) His journey has been amazing!! It has been a learning experience from the very being... Devin is a (spoiled) little boy with an unbelievable will to live!!! and although I would like to put him in a glass bubble to avoid all the germs out their and the FLU season... I have given up the CONTROL!!! I have done my best to educate people on the importance of good hygiene and have supplied Clorox and Purell to prevent the spread of germs...
We transplanted Devin to give him QUALITY of life... so as I watch him bounce out of bed, eagerly put on his uniform, jump around the kitchen as I pack his lunch, and run off to the bus stop and get on that bus... (hardly looking back to say goodbye) All I can do is hope and pray that God watches over him during this germ infested season.....
PS... My loving husband claims.. I did not give up control I just let people borrow it during the day... LOL
So Disappointed....
Submitted by Colleen and Derrick on Thu, 09/10/2009 - 11:52am.As many of you know yesterday was Devin's first day of Kindergarten and his big Make A Wish Day!!! At about 4AM I woke up not feeling very well. By 6:30 I was sick as a dog!! Needless to say I completely missed the first day, I didn't even get a picture. Poor Caitlin got herself up and ready and headed to the bus stop... Then came time for Devin to get up and ready, thank god Derrick had taken the day off. Daddy handled getting him off to school..
Although I wanted them to continue on with Devin's wish they did not want to go without me. Unfortunately now it's been postponed until next season. Devin was VERY disappointed and I felt horrible about having to cancel... To make matters worse it was such a great game :(
Devin had a great first day!!
So Much Excitement....
Submitted by Colleen and Derrick on Fri, 09/04/2009 - 8:48am.Wednesday is Devin's first day of school... He is very excited about taking the bus and going to school with Caitlin... My independent 5 year old wants to take the bus on the first day.. makes me feel very needed!! Should be an interesting year because if it doesn't have to do with baseball, the Yankees, or PSP he has absolutely NO interest.. We shall see :)
Next in the exciting life of Devin.... On Wednesday he will be having his wish granted by Make A Wish... as many of you can already guess his wish was to meet the Yankees.. So off to Yankee stadium we go!! I hope we get a nice beautiful sunny day!!
Colonoscopy...
Submitted by Colleen and Derrick on Fri, 09/04/2009 - 8:38am.Complete!! What a long day for Devin.... first was the numerous attempts to get an IV in.. ahhh the joys of having no veins.. they were able to find one good site that I will now guard with my life... Everything went very well..
Dr. K said everything looks great.. no evidence of rejection, infection, or graft vs host issues... but of course we have to wait for the biopsy results to be 100%..
Biopsy results are in... Dr. K says everything is "GREAT"... Thank You Lord!!
Can't Believe...
Submitted by Colleen and Derrick on Mon, 08/31/2009 - 10:17am.Summer is coming to an end... We will be heading down to Georgetown Wednesday for Devin to have a Colonoscopy on Thursday. Everything is going very well, but as some of you may remember and some may not... right after transplant we had some trouble suppressing Devin's immune system... the drug they ended up using gives great coverage for 6 months or so... we hit 6 months on August 23rd... it's time for a look see!! I am a little nervous about this because I do not want to upset the apple cart. Devin is tolerating everything very well... except juice boxes is large quantities and regular Gatorade... this tends to give him diarrhea.
We have added a second immune suppression drug called Rapamune. This will allow them to lower the dose of Prograf and Prednisone. These three drugs will work together in preventing rejection.
Devin is stating kindergarten Sept. 9th.. I can't believe it!! Unfortunately they are talking about a horrible flu season... NOT good for an immune suppressed child. SOOOO we are trying to balance all this..
Please say a little prayer for Devin.. he is very anxious over Thursday.
Hopefully everything will go very smoothly and look beautiful!! One can only hope!!
"CONTROL"
Submitted by Colleen and Derrick on Tue, 09/15/2009 - 8:03am.Those of you that know me... know I like being in CONTROL... I like things the way I like and I need things just so!! Yesterday at 7:40 I had to hand over that control to... the bus driver that picked Devin up, Caitlin that had to get him to his class line, the school nurse who was going to give him is meds and feeds for the first time, and his Para who is with him in school to make sure this all goes right... ahhhhh!!! I am twitching! He on the other had loves it. He is up and ready to go at 6:45, so far our morning have run smoothly. Raymond is not to happy because for the first time he has to take public transportation to school... If he had his way I'd leave Devin standing on the bus stop and drive him... LOL!!! Caitlin is my new right hand... she delivers his medications and feeds to school and makes sure he gets where he needs to go... My "responsible" daughter!!
Soooo! much change in my life!!! I've gone from... running to the doctor weekly, drawing labs weekly even twice a week at times, searching high and low for answers on how to make Intestines that were so broken work.... how could we get them to absorb, how can we keep his Liver from failing, how could we control the diarrhea and vomiting, how could we keep the bacteria from the intestines from spreading to his blood stream... how could we keep him alive with good quality of life.... When medically they were telling us nothing more could be done.... Time was ticking!! HOW, OH HOW!! can I do this??? With only one option left their wasn't much choice... Transplant was our only hope.... So then I spent the next 11 months sitting and waiting... some days accepting the wait and others being very inpatient.. always wondering... if this was the right thing to do, the wrong thing to do, would he survive, was I trading quantity for quality... so many questions but not a lot of answers...
Well, here we are almost 7 months after his transplant and he is off to school... Lunch box and all... I can't believe it!!! (as many of you know he never ate orally until transplant) His journey has been amazing!! It has been a learning experience from the very being... Devin is a (spoiled) little boy with an unbelievable will to live!!! and although I would like to put him in a glass bubble to avoid all the germs out their and the FLU season... I have given up the CONTROL!!! I have done my best to educate people on the importance of good hygiene and have supplied Clorox and Purell to prevent the spread of germs...
We transplanted Devin to give him QUALITY of life... so as I watch him bounce out of bed, eagerly put on his uniform, jump around the kitchen as I pack his lunch, and run off to the bus stop and get on that bus... (hardly looking back to say goodbye) All I can do is hope and pray that God watches over him during this germ infested season.....
PS... My loving husband claims.. I did not give up control I just let people borrow it during the day... LOL
So Disappointed....
Submitted by Colleen and Derrick on Thu, 09/10/2009 - 11:52am.As many of you know yesterday was Devin's first day of Kindergarten and his big Make A Wish Day!!! At about 4AM I woke up not feeling very well. By 6:30 I was sick as a dog!! Needless to say I completely missed the first day, I didn't even get a picture. Poor Caitlin got herself up and ready and headed to the bus stop... Then came time for Devin to get up and ready, thank god Derrick had taken the day off. Daddy handled getting him off to school..
Although I wanted them to continue on with Devin's wish they did not want to go without me. Unfortunately now it's been postponed until next season. Devin was VERY disappointed and I felt horrible about having to cancel... To make matters worse it was such a great game :(
Devin had a great first day!!
So Much Excitement....
Submitted by Colleen and Derrick on Fri, 09/04/2009 - 8:48am.Wednesday is Devin's first day of school... He is very excited about taking the bus and going to school with Caitlin... My independent 5 year old wants to take the bus on the first day.. makes me feel very needed!! Should be an interesting year because if it doesn't have to do with baseball, the Yankees, or PSP he has absolutely NO interest.. We shall see :)
Next in the exciting life of Devin.... On Wednesday he will be having his wish granted by Make A Wish... as many of you can already guess his wish was to meet the Yankees.. So off to Yankee stadium we go!! I hope we get a nice beautiful sunny day!!
"CONTROL"
Submitted by Colleen and Derrick on Tue, 09/15/2009 - 8:03am.Those of you that know me... know I like being in CONTROL... I like things the way I like and I need things just so!! Yesterday at 7:40 I had to hand over that control to... the bus driver that picked Devin up, Caitlin that had to get him to his class line, the school nurse who was going to give him is meds and feeds for the first time, and his Para who is with him in school to make sure this all goes right... ahhhhh!!! I am twitching! He on the other had loves it. He is up and ready to go at 6:45, so far our morning have run smoothly. Raymond is not to happy because for the first time he has to take public transportation to school... If he had his way I'd leave Devin standing on the bus stop and drive him... LOL!!! Caitlin is my new right hand... she delivers his medications and feeds to school and makes sure he gets where he needs to go... My "responsible" daughter!!
Soooo! much change in my life!!! I've gone from... running to the doctor weekly, drawing labs weekly even twice a week at times, searching high and low for answers on how to make Intestines that were so broken work.... how could we get them to absorb, how can we keep his Liver from failing, how could we control the diarrhea and vomiting, how could we keep the bacteria from the intestines from spreading to his blood stream... how could we keep him alive with good quality of life.... When medically they were telling us nothing more could be done.... Time was ticking!! HOW, OH HOW!! can I do this??? With only one option left their wasn't much choice... Transplant was our only hope.... So then I spent the next 11 months sitting and waiting... some days accepting the wait and others being very inpatient.. always wondering... if this was the right thing to do, the wrong thing to do, would he survive, was I trading quantity for quality... so many questions but not a lot of answers...
Well, here we are almost 7 months after his transplant and he is off to school... Lunch box and all... I can't believe it!!! (as many of you know he never ate orally until transplant) His journey has been amazing!! It has been a learning experience from the very being... Devin is a (spoiled) little boy with an unbelievable will to live!!! and although I would like to put him in a glass bubble to avoid all the germs out their and the FLU season... I have given up the CONTROL!!! I have done my best to educate people on the importance of good hygiene and have supplied Clorox and Purell to prevent the spread of germs...
We transplanted Devin to give him QUALITY of life... so as I watch him bounce out of bed, eagerly put on his uniform, jump around the kitchen as I pack his lunch, and run off to the bus stop and get on that bus... (hardly looking back to say goodbye) All I can do is hope and pray that God watches over him during this germ infested season.....
PS... My loving husband claims.. I did not give up control I just let people borrow it during the day... LOL
So Disappointed....
Submitted by Colleen and Derrick on Thu, 09/10/2009 - 11:52am.As many of you know yesterday was Devin's first day of Kindergarten and his big Make A Wish Day!!! At about 4AM I woke up not feeling very well. By 6:30 I was sick as a dog!! Needless to say I completely missed the first day, I didn't even get a picture. Poor Caitlin got herself up and ready and headed to the bus stop... Then came time for Devin to get up and ready, thank god Derrick had taken the day off. Daddy handled getting him off to school..
Although I wanted them to continue on with Devin's wish they did not want to go without me. Unfortunately now it's been postponed until next season. Devin was VERY disappointed and I felt horrible about having to cancel... To make matters worse it was such a great game :(
Devin had a great first day!!
"CONTROL"
Submitted by Colleen and Derrick on Tue, 09/15/2009 - 8:03am.
Those of you that know me... know I like being in CONTROL... I like things the way I like and I need things just so!! Yesterday at 7:40 I had to hand over that control to... the bus driver that picked Devin up, Caitlin that had to get him to his class line, the school nurse who was going to give him is meds and feeds for the first time, and his Para who is with him in school to make sure this all goes right... ahhhhh!!! I am twitching! He on the other had loves it. He is up and ready to go at 6:45, so far our morning have run smoothly. Raymond is not to happy because for the first time he has to take public transportation to school... If he had his way I'd leave Devin standing on the bus stop and drive him... LOL!!! Caitlin is my new right hand... she delivers his medications and feeds to school and makes sure he gets where he needs to go... My "responsible" daughter!!
Soooo! much change in my life!!! I've gone from... running to the doctor weekly, drawing labs weekly even twice a week at times, searching high and low for answers on how to make Intestines that were so broken work.... how could we get them to absorb, how can we keep his Liver from failing, how could we control the diarrhea and vomiting, how could we keep the bacteria from the intestines from spreading to his blood stream... how could we keep him alive with good quality of life.... When medically they were telling us nothing more could be done.... Time was ticking!! HOW, OH HOW!! can I do this??? With only one option left their wasn't much choice... Transplant was our only hope.... So then I spent the next 11 months sitting and waiting... some days accepting the wait and others being very inpatient.. always wondering... if this was the right thing to do, the wrong thing to do, would he survive, was I trading quantity for quality... so many questions but not a lot of answers...
Well, here we are almost 7 months after his transplant and he is off to school... Lunch box and all... I can't believe it!!! (as many of you know he never ate orally until transplant) His journey has been amazing!! It has been a learning experience from the very being... Devin is a (spoiled) little boy with an unbelievable will to live!!! and although I would like to put him in a glass bubble to avoid all the germs out their and the FLU season... I have given up the CONTROL!!! I have done my best to educate people on the importance of good hygiene and have supplied Clorox and Purell to prevent the spread of germs...
We transplanted Devin to give him QUALITY of life... so as I watch him bounce out of bed, eagerly put on his uniform, jump around the kitchen as I pack his lunch, and run off to the bus stop and get on that bus... (hardly looking back to say goodbye) All I can do is hope and pray that God watches over him during this germ infested season.....
PS... My loving husband claims.. I did not give up control I just let people borrow it during the day... LOL
As many of you know yesterday was Devin's first day of Kindergarten and his big Make A Wish Day!!! At about 4AM I woke up not feeling very well. By 6:30 I was sick as a dog!! Needless to say I completely missed the first day, I didn't even get a picture. Poor Caitlin got herself up and ready and headed to the bus stop... Then came time for Devin to get up and ready, thank god Derrick had taken the day off. Daddy handled getting him off to school..
Although I wanted them to continue on with Devin's wish they did not want to go without me. Unfortunately now it's been postponed until next season. Devin was VERY disappointed and I felt horrible about having to cancel... To make matters worse it was such a great game :(
Devin had a great first day!!
So Much Excitement....
Submitted by Colleen and Derrick on Fri, 09/04/2009 - 8:48am.
Wednesday is Devin's first day of school... He is very excited about taking the bus and going to school with Caitlin... My independent 5 year old wants to take the bus on the first day.. makes me feel very needed!! Should be an interesting year because if it doesn't have to do with baseball, the Yankees, or PSP he has absolutely NO interest.. We shall see :)
Next in the exciting life of Devin.... On Wednesday he will be having his wish granted by Make A Wish... as many of you can already guess his wish was to meet the Yankees.. So off to Yankee stadium we go!! I hope we get a nice beautiful sunny day!!
Colonoscopy...
Submitted by Colleen and Derrick on Fri, 09/04/2009 - 8:38am.
Complete!! What a long day for Devin.... first was the numerous attempts to get an IV in.. ahhh the joys of having no veins.. they were able to find one good site that I will now guard with my life... Everything went very well..
Dr. K said everything looks great.. no evidence of rejection, infection, or graft vs host issues... but of course we have to wait for the biopsy results to be 100%..
Biopsy results are in... Dr. K says everything is "GREAT"... Thank You Lord!!
Summer is coming to an end... We will be heading down to Georgetown Wednesday for Devin to have a Colonoscopy on Thursday. Everything is going very well, but as some of you may remember and some may not... right after transplant we had some trouble suppressing Devin's immune system... the drug they ended up using gives great coverage for 6 months or so... we hit 6 months on August 23rd... it's time for a look see!! I am a little nervous about this because I do not want to upset the apple cart. Devin is tolerating everything very well... except juice boxes is large quantities and regular Gatorade... this tends to give him diarrhea.
We have added a second immune suppression drug called Rapamune. This will allow them to lower the dose of Prograf and Prednisone. These three drugs will work together in preventing rejection.
Devin is stating kindergarten Sept. 9th.. I can't believe it!! Unfortunately they are talking about a horrible flu season... NOT good for an immune suppressed child. SOOOO we are trying to balance all this..
Please say a little prayer for Devin.. he is very anxious over Thursday.
Hopefully everything will go very smoothly and look beautiful!! One can only hope!!
Six... Months Ago Today...
Submitted by Colleen and Derrick on Sun, 08/23/2009 - 6:26pm.
Six months ago today our lives changed forever... Six months ago yesterday at 8:40 AM, the phone rang to the tune of "ONE STEP AT A TIME" my feet felt like weights as I went to run for the phone.. my heart pounded!!! I tried so hard to stay focused and listen to EVERYTHING they said... my house went from silence to madness within minutes...
Off to DC we went... 4 hrs felt like 30 minutes in the car... before we new it we were there... were we making the right decision... would we get this organ... and of course what happens if.... if he doesn't make it....
I tried so hard to be positive... and wait for the word...
Well you all know how the story went... Devin is doing great!! We Thank God everyday for the second chance Devin has been given. We also Thank God for the gift that was given to him in a time of tragedy for our donor family... Our little donor angel will always hold a special place in our hearts!!
Thank You all for your continued love and support!!! It has been a long road of cheers and tears!!!
ORGAN DONATION... saves lives!!
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