DAY OF LIFE 174

Today is Friday and it has been over a week since my last update...

You know the old saying...NO NEWS IS GOOD NEWS?

Well, that is the case indeed!!  (AND....If the truth be told, my Nana went on "vacation," and my mommy and daddy were SO busy taking care of me and regular life that they didn't have time to do regular updates.  They have gotten so used to having Nana's help, but she will go home for good on 6/6/2011 - VERY SAD FOR US, BUT HAPPY FOR GRANDPA.)
I really am doing better everyday...I am having MORE good days than BAD days and this is a good thing...

It's a preemie step process, but I am working hard and I don't act like I am in as much pain as I have been in the past (haven't had any ibuprofen OR tylenol since my last post..YEA!!)

I still keep everyone pretty busy and I still have someone with me almost round the clock.  Some "nights" are better than others and I still do this strange sort of "thrashing" movement that no one knows about...

BUT..we are so so so so thankful...so thankful to be home and alive!!

I have found my hands...my mommy & daddy were so happy to see me put my hands in my mouth because before I was not having any "deliberate" hand movements...I would just look "up" and have my hands "down" by my side, so This is a HUGE step.....

My eyes are improving too...

My family still doesn't know "what" I see...

Some days they think I can't see very well based on my behavior, but other days, my eyes come "down" and I seem to "follow" things...(those days are very exciting!!)

In the past week, my surgeon's office visited me and they were SO impressed with my tube...My g-tube is totally healed...(mommy still changes the dressing out every day to keep it dry.)  They saw me swallow and suggested that my family give me "tastes" as I guess sometimes babies with a tube lose interest in eating by mouth..BUT..In the near future, they suggested that I get another "swallow" study done to see "where" stuff goes when I swallow.

This is new...My family is putting me "upright" on their shoulder sometimes and for a few seconds, I seem to be okay with it (which is a HUGE improvement because I have NEVER - EVER liked anything touching my belly - even before the feeding tube.)

Tummy time is still a challenge though...my neck muscles are very weak, but I am trying hard to lift my head...my family keeps working with me and my g-tube doesn't seem to be bothering me (although my parents NEVER put me directly on it..I am always propped up so the tube doesn't have pressure on it.

My breathing is still very noisy on some days and I sound like I am gasping for air...my "position" can change the noise or how "hard" I am working or "not" - so my favorite position is to be bent BACK as FAR as I can (and boy am I STRONG when I bend backwards - THOSE BENDING BACKWARDS MUSCLES ARE VERY DEVELOPED....my my parents' arms get a workout and the ONLY thing that gets me out of this STIFF position is my binky.  I love my binky!)   :)

My mommy had a developmental Doctor appointment today that she cancelled because she just couldn't bare to hear how "behind" I am..(not really sure if they would have "said" that to her or not, but many other people have said this. I have several people that visit me and they give my mommy good "tips," but their "assessments" say that I am NOT developed like other kids my age...I guess that what happens when a person spends a long time in the hospital...they get a little behind...)

BUT..again, we are looking at the WHOLE PICTURE and in the WHOLE PICTURE, I have come so far, and I will develop at my own "pace"...and as the title of this blog says:  BENWRITESHISOWNSTORY, right?

The pace is a little slower in Holland anyway and this is just fine!!

We are so grateful for where we are...Each day is a gift...a "present" indeed!!