Just recently Ella was complaining of her nose hurting while taking her bath.  At the same time she was also having rough nights, one after another.  Her bipap machine was also going off throughout the night...much more than usual. We put two-and-two together and figured out that her overnight mask was too tight.  For a few nights we experimented with different "tightnesses" until we found a happy medium.  So far things have been back to the normal nightly routines.  With one exception... During the time before we figured out what was bothering Ella she would always say to me, as I was bathing her, to "not wash my nose when you wash my face".  Of course, I obliged.   Once we figured out the bipap mask issue I figured this request would stop, yet she continued to say the same thing night after night. As time rolled along I gradually began "skimming" over her nose to make sure it was, in fact, getting clean...at least somewhat.  She never ...

I woke one morning this past week to read on my Facebook page that a young boy, a very young boy, died early that morning.  SMA took his life.  The post was a mixture of an author dazed and confused, angry and despondent.   The young boy was the fifth child lost to SMA (that I know of) in as many days.  Five days.  Five children.   The posts, when they appear, quickly fill with comments from all walks of life.  The thread grows longer every minute as more and more people chime in.  Many of whom have lost a child to SMA or some other disease.  Expressions of sorrow and support echo through the writings.  Sympathy and empathy abound.   The SMA Community is a tightly knit community bound together unwillingly by the strings of a disease most had never heard of.  Yet bound together we are.  As I have written so many times before, we celebrate our children's triumphs together, extend a helping hand when possible to one an...

Sitting across from Ella while on the hardwood floor, her back resting against the wall behind her, I see my three-year old concentrating on a game.  Her focus is sharp, her intentions are calculated, her body unnaturally fighting her desire to manipulate not only herself, but the world around her.   She sits in front of me, void of any braces, as she relies on her own devices to keep herself balanced. A considerable amount of energy on her part is used simply maintaining her sitting position as she plays the game in front of her. The game is a wooden board covered in a strong but thin plastic.  Pathways are carved into the board, intertwining and intersecting, and at the ends of the pathways are circles (almost like cul-de-sacs) which are of various colors.  There are tiny magnetized balls that are colored the same as the pathways' end circles, and a magic magnetic wand is roped to the board.  The object: using the magic magnetic wand one must move the ...

Our kids are small.  They're petite. They always have been. But Henry's size has caused a little concern with us and his pediatrician.   Henry has a disorder called Renal Tubular Acidosis (RTA).  He was diagnosed by a blood test shortly after he turned one year old.  Basically, having RTA means that Henry's kidneys are not working properly and he has too much acid in his blood.  Having this disorder can also cause stunted growth (which is why he was tested in the first place). However, there is an easy fix.  He's been taking a medication twice a day since he was one year old and has had normal blood tests ever since.  RTA is typically outgrown by the age of 5 or 6, so this spring we will be taking Henry off of the medication to see how his kidney function reacts. But Henry is still quite small.  He is at the 5th percentile for both height and weight and at his 5 year checkup last week, his pediatrician suggested that we take him to a ped...