Looking Good!!

Submitted by Colleen and Derrick on Mon, 05/11/2009 - 7:34pm.

Devin's labs are looking good today!! His WBC is improving slowly. Thank God!! We are going back to Georgetown next Monday for his scope/biopsy, Cytogam and Pentamdine...

Hopefully this week he'll get to enjoy the nice weather!! Yesterday we let him go to Raymond's baseball game... he had a blast running all over...
he played outside all day yesterday.... baseball.... soccer.... basketball..... bike riding.... and of course was thrilled when the ice-cream man showed up!!

And Eating.... OH BOY!!!! he is putting his new intestines to work.... You would NEVER know that he had any problems before... He LOVES food!!

Happy Mother's Day....

Submitted by Colleen and Derrick on Sun, 05/10/2009 - 8:40am.

Happy Mother's Day!!! and Thank You all for following our amazing journey... I am so happy today to have this day with my three kids in one state... and good health... :)

Hope everyone has a Wonderful Day!!!

Good News :)

Submitted by Colleen and Derrick on Sat, 05/09/2009 - 8:00pm.

Devin's lab work looks better today.. So, the Bone Marrow Biopsy is on hold for now.. Hopefully his labs will continue to improve when we check them on Monday. We actually let him go out in the driveway to play today. He has been a great sport about all of this.. He rarely complains... just goes with the flow!! He spends a great deal of the day doing school work.. and EATING!!!

White Blood Cell Count...

Submitted by Colleen and Derrick on Thu, 05/07/2009 - 3:57pm.

Unfortunately Devin's WBC count is still very!! low... Of course we have Googled every medication he is on and has gotten over the last two months... just about every one runs the risk of causing this problem.... We are off to Georgetown again at the beginning of next week for a Bone Marrow Biopsy... I will probably know more about this tomorrow.... I pray that his numbers improve before he has to go through this... :( and that he remains healthy until this resolves.... any illness at this point would not be good... SO, we will remain in our house for the weekend....

Devin's Made A Recovery...

Submitted by Colleen and Derrick on Wed, 05/06/2009 - 4:00pm.

Last week I can not put into words how stressed I was over Devin... When we were discharged from the hospital after transplant they clearly spelled out the guidelines I was to follow... all went extremely smooth... I monitored what when into him and what came out... everything balanced.... I was happy... Yes!!! I am a control freak!!! then came the fever.... antibiotics... and a new set of guidelines... we came home and I couldn't get anything to balance... try though I may, I was working against the tides.... I was so stressed!!! :( I had spoken to the coordinator and the nutritionist and followed every suggestion.... to the tee... nothing seemed to matter!! When I spoke to the Dr on Friday night he made a few suggestions that improved the situation.... But, by Sunday I was ready to walk to Georgetown if I had to because something wasn't right... no fever, no vomiting, no belly pain, no complaints.... he just wasn't really eating well, not drinking great, and not tolerating his feeds.... he was putting out a lot.... I must have looked at the manual they gave me 20 times to see the signs of rejection... as though I don't have them memorized..

On the way to Georgetown on Sunday, for our Monday visit a light bulb went on.... STOP the bolus feeds... run them longer.... he was doing fine on continuous feeds.... AHHH maybe I was on to something... I was never so happy to see Dr K and his scope.... When he walked in the room I announced " I am sooo stressed, these feeds are stressing me out"
When he put the scope in and said everything looks great... it was music to my ears....

Well we left there this time with the same guidelines but I have a clearer understanding... Devin is doing AMAZING again.... we changed formulas again:) , we are running his feeds over 1 hr, which is working wonderfully!!.... he is eating and drinking like a champ.... Last night he ate 1/2 of a Filet Mignon and since 11:00 this morning he has been asking to have Spanish Rice and chicken on the bone... He ate that like a pro... and hid his leftovers so no one eats them.. LOL he is urinating good... his output in low... he feels great.... life is good....

Now lets pray for an increase in his WBC count tomorrow... :) and then maybe we can leave the house a little...

Hoping to post some pictures soon... (can't find my camera charger)

Today We Will Ask...

Submitted by Colleen and Derrick on Tue, 05/05/2009 - 3:14pm.

Today we are asking for special prayers for someone near and dear to us Devin's little next door neighbor at Georgetown... Thomas.. Today Thomas will be receiving his gift of life at approx 5:00.. Thomas gave Devin the will to get out of bed every day.. Even when he wasn't feeling so great.. He believed Thomas would be looking for him... Devin was there to cheer Thomas on as he took his first steps... and Thomas was there to cheer Devin on when he wasn't really up to walking. His bright smile and clapping hands made Devin feel special.. Now we are here to cheer him on as he receives his second chance at life... May God bless and watch over Thomas during this time... and May God give Mom and Dad the strength they need to endure this journey...

Back Home SafelY...

Submitted by Colleen and Derrick on Mon, 05/04/2009 - 8:24pm.

Dr. K called and Devin's biopsy was completely normal!!! Thank You God!!! He did great today... He is truly a little trooper!! His white blood cell count remains very low. We will continue to monitor this closely and keep him isolated from the world... Thank you all for the continued support!!

Scope And Biopsy Done...

Submitted by Colleen and Derrick on Mon, 05/04/2009 - 9:06am.

Oh big news!! Devin laid still while they did his scope and biopsy... No conscious sedation needed!! The conscious sedation nurses and Dr stood by to cheer him on... GO DEVIN GO!!! he was so proud of himself... Dr. K says the bowel looks great!! completely normal!! Thank God!! Final pathology results should be back later tonight or tomorrow. I was very relieved!!! We had some output issues this week that I STRESSED over.. But after getting here today I learned they were very minor and that some kids don't tolerate bolus feeds while they have a ostomy...

He's Back In Full Swing!!

Submitted by Colleen and Derrick on Sun, 05/03/2009 - 1:44pm.

Well we went from being very quiet and sleeping alot... to bouncing off the walls!! He's back in full swing... Dancing, singing, jumping on the beds, and playing baseball. It's been a long weekend for him because on Friday they notified me that his white blood cell count was 0.4.... VERY LOW!! so I isolated him from everyone... I am hoping it was the antibiotics he was on.... We are off to Georgetown tonight for our Dr visist tomorrow morning... Please pray that his biopsy looks good and that he does ok during his Cytogam infusion...