“Her 5th birthday”

We had a fantastic visit with the developmental pediatrician.  I was incredibly impressed that she had thoroughly researched Gaucher’s disease beforehand and that she asked tons of questions, some that no one else has asked of us before!    We were with her for almost an hour as we discussed almost every aspect of Hannah’s health and condition.

Hannah was exhausted (it was naptime), and she was thrashing around in my arms as the doctor was listening to her chest.   At that point, Hannah pulled out her trach … again.  Right in front of the doctor.  The only reason we noticed was because we heard actual crying noises, and Daddy and I looked at each other and both knew right away.  It was actually good that the doctor saw it because she noted that Hannah’s color was good, she was not having any breathing difficulties, and that she was fine during the whole episode.

Towards the end of the meeting, the doctor said something that stuck with me.   Basically, “we need to work to get her to her 4th or 5th birthday.”  Straight up, no beating around the bush, etc.   That was her ‘guesstimate’ prognosis based on what she learned of Hannah’s disease progression symptoms.

What struck me was that this was the same prognosis I have had in my brain for the past few months.  The age of 5 years.  I have no factual basis for it, but just from what I know of this disease and how she is progressing in terms of it.   I hope, hope, hope it is longer.   But I also have to be realistic too.

But to hear another doctor say the same thing was just an eye opener.

Reality is though, our goal every day is to just get Hannah to that next birthday.  Whether it be her third birthday, her fifth birthday, or her tenth birthday.    We live our life knowing that Hannah is a gift that we were chosen to get to experience the joy of loving and being her parents for however long she is with us.   For every day that Hannah goes to sleep after a happy and painfree day, we know that we are doing the best we can for her. 

Her third birthday is coming up in …. 304 days!