February 2015

So far, 2015 has not been a very good year.  Ella continues to have bowel and bladder issues and everytime an issue arises, it seems to be worst than the last time.

Ella developed a pseudonomal bacterial urinary infection 2 weeks ago.  It was causing her so much pain, she was screaming in pain literally every 3-5 minutes. I ended up taking her to the emergency room where they performed an xray and saw that she had a severe fecal impaction as well.  She had an “excessive amount of feces in her intestines” and a very large impaction the size of a softball high up near her belly.  On top of this she was suffering with a severe bladder infection.  They performed an enema in the ER hoping to give her some sort of relief, however, the pain just got so bad that they ended up admitting her.  The next few days were brutal.  Pain every 5 minutes, screaming and begging for it to stop.  Trying to push laxatives and enemas and ivs on a 4 year old is never easy.  But the pain was unbearable.  After 3 days, they decided to perform a procedure to manually remove the impaction.  She was put to sleep for this, thanks God.

Doc said that her bladder was so full of urine that it was pinching off the intestines making it impossible for any of the stool to come out.  So they were able to drain her bladder and then remove the blockage.  Ella was so much better after she woke up and we were finally able to go home.  Of course at home we had to deal with the yeast infection that came along from all the anitbiotics she took as well as the burn to her bum from the old poop.  She never gets a break.  When it rains, it pours.

This last hospital stay was very hard on her.  She used to be pretty good with doctors, but now she is really scared.  Everytime she sees a doctor now she is afraid they are going to hurt her.  She actually shakes out of fear.   The most difficult thing in life must be to see your own child suffer and to have no control over helping her.

During all of this, Ella also had her 6 month MRI.  Scans showed no significant change in the existing tumor.  It reamins practially the same size.  This is good.  No growth is good.  But shrinking or disappearing would be better!  One step at a time………..

Ella is now in preK.  She enjoys going to school and has made some great friends.  The teachers have been very accomodating to her physical needs and have been able to discreetly change her diaper on a regular basis.  She has had a few kids ask her why she wears diapers and she simply says that she has a hard time going potty.

She is such a smart little girl.  She amazes me every day.  The love of my life, she is my world.

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