Hope 4 Delaney

Hope 4 Delaney


Hotel CHOP and Happy Birthday to you. . . .

Posted by hope4delaney on May 10, 2010 at 1:10 PM

Yup....2 Years Old!!! Where has the time gone?? Delaney has been such a wonderful light in our lives that looking back, we cannot imagine life without her.  The struggles we face daily with her and her care are overwhelming some days, but to hear her giggle, to tease her sister or to just be down right bad, brings tears of joy to my eyes. What a lucky mommy i am to have this little bean to keep me laughing.


We had a recent stay at Hotel CHOP on Thursday May 6th. Delaney is very good now at expressing herself. She had been telling us that she has "boo boo belly" lately so we had been keeping a close eye on her activity "down there". During her last visit, a scan of her abdomen showed alot of stool in her large intestine and colon so Dr. Caboot and Dr. Goldfarb recommended we up the dosage of Miralax in an attempt to clean her out at home.  She continued along the same path. A consistent 2 a day pooper she remained, even with the increase in laxative. Then, all of a sudden, she stopped.  Day two of no activity and we were at the clinic with a very unhappy Bean.  Her appetite decreased significantly, she was distended, and just not her perky lil self.


Scan #2 reveal the same as scan #1......poop. So Bean was admitted for a "clean out" in the hopes that no major blockages would be detected and to help move things along for her.  We agree as parents, that an aggressive approach to her treatment is the best thing for her.  We feel that the longer you drag it out with her, the more irritable and impatient she gets. We want "the quick fix" but know that isnt going to be realistic with her treatment depending on the circumstances.  So,  she was admitted and an endoscopy was done.  (there is a fancy name for it-but it escapes me at the moment) They filled my baby with 1000 cc's of fluid to help the "poop get outta my belly" as Laney told the radiologist. It was really cute. They provided a small amount of sedation for her during the treatment since the last time this was performed, it was traumatic. (for her and us....HORRIBLE!!! to say the least.) The sedation worked well. She cried a few times but was easily calmed by myself and Bernie. Much better this time :)


We returned to our room, gave Bean her favorite McDonalds chicken nuggets, french fries and vanilla milkshake and waited......... then the fun began. :roll:


Mommy got pooped on, but thankfully brought a change of clothes and was able to clean up in time for bed.  Daddy decided to spend the night so I could get home to RIley.  It was a rough night, with Bean getting up a few times throughout. However, 24 hours later, we were being discharged!!! Scan #3 performed in the morning showed "no poop"...... she was officially cleaner on the inside than she was on the outside.  It couldnt have worked out better as we were two days away from a birthday celebration for this little fighter!


We will stay ontop of the poops with Bean as she is to remain on an increased amount of Miralax for a little while and slowly back her off to a lower dose.  She is doing very well and amazed us again at how quickly she rebounded.


We are looking forward to a summer of fun as BPA already opened the big pool and Delaney thinks its the best thing in the world!! Scares the" poop" outta mommy that shes fearless so life jackets will be on before she step one foot outta of the car. Hey - everything i gotta to to keep this little one around, you can bet i'll be doing it!


Birthday kisses from Bean to you! Hope everyone stays big and strong over the summer and enjoys the sunshine.:cool:


love always,


Bean's Mommy

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