Another day, another doctor

So today Miss M and I visited the craniofacial surgeon who repaired her bilateral cleft lip back in October.  Repair is doing great.  However, we (Miss M’s daddy and myself) have noticed an increase in her fussy behavior and a decrease in her eating.  Often it seems like she is hungry, but just won’t take her bottle.  The result is not pretty.  From the surgeon’s perspective, it seems like her weight gain is less than stellar as well.  Since we’ve already been to our normal pediatrician, who pretty much blew off our concerns, the surgeon suggested we might head straight to a GI specialist.  I’m going to wait until after the holidays…maybe a week off work/daycare and some tlc will get her gaining again.  For now, we have a petite lil 6 month old, weighing in at 13 lbs 6 oz…

I fervently hope that my child grows to be big and strong so that she can handle all of the surgeries and therapy that she will deal with and experience minimal pain.  And I hope that I can figure out how to be there for her and lift her spirits when she does experience pain, fear, and disappointment.  I love you Miss M.


The start.

Our daughter, Miss M, has Klippel-Feil Syndrome.  I know a day will come when she questions us, her parents, wanting to know more about her journey, why she was born this way, why we chose specific medical treatments, what our thought process was during her childhood.  If I’m anything like my own mother, I won’t remember unless I write it all down.  So, since I’m writing it down, I might as well make it public.  It was the most discouraging thing in the world for a “google” search to take me to the Rare Diseases office at the NIH.  Maybe if someone’s google search takes them here, and they can gain some hope and feel like they aren’t alone in their struggles, it will make my efforts to record Miss M’s history useful to others as well.