Look where we are now....

There are 3 times of the year that sometimes create a "funk" for us(mostly me).....
Christmas, Bubby's birthday and the anniversary of his diagnosis. 

This time of year marks the anniversary.  March 31, 2011, was the day we saw the geneticist, and for the first time in our lives heard the term PKS.  We got the official confirmation like a week or 2 later.  How the days, weeks and months, that followed, were both so vivid and so foggy.  Holding it together in the doctors office and then just sobbing in the car to Tim.  Me-thinking the worst....Tim-bringing me back to the positive.   

Today,  I thought about that day.  I had a moment at therapy with Patrick where I just wanted to cry.  Not because I was sad, but because I realized how far we have come since that day.  He has been doing so well lately and progressing so beautifully.... and then it dawned on me, that we have gone through this "diagnosis" period, this year, without realizing it.  No funk, No fog, No tears.

I see how far HE has come AND how far WE have come too.   All of the fears that I had initially, most are still there, but I have come to realize, that they will always be there, and I have to accept that(most days).   And....I have realized that we have fears for each of our kids, just in different ways.  I am not saying I will never have this funk again during this time of year.  I will.  I am sure of this.  But I am thankful for this year.  I am thankful and so proud of how well Patrick is doing right now.....how far he has come....how he has proved people wrong....how he has just amazed us and brought so much to our lives....how holding something as simple as a toy, brings me to tears....how he has taken the unknown of what was ahead and made it a bright spot in our lives. I am so proud of him.  I am so thankful to him for making me a different person, than the one I was in that genetecists office 3 years ago. 

I love you Bubby...You're simply da best :)


Here is what I did in therapy today.  These were taken in order.....

Ok...I'm holding a fan(bubble maker)



 I think I like it

 Yup, I do!

 This is just the best..

 Quite Amazing...

I could get used to this

 

All by myself

 

 

 The Best :)

 

 

My Performer

Patrick is really enjoying his new therapists :)  He surprises me everyday with some of the things he is starting to do.  In the past few weeks we have been working on putting weight on his legs and the walking motion.  We have also been working on him trying to grab food to bring to his mouth.  Last week, he actually grabbed my hand, which had a spoon full of yogurt in it, and he brought it to his mouth!!!  So exciting!!! 

Its so funny sometimes that simple things like this, that Jameson and Avery just did...are such an exciting thing in our house!! 

                                                                               Should I tell them I want to bungee jump?

 

Yesterday, he rode a tricycle around.  He did really well!!!  He also has been using his little suspension device to walk around the room.  He isn't really walking, but he is moving his feet the way he is supposed to.  So we are excited about his progress. 

 I'm outta here!

 

I don't think I am supposed to lay down in this

 

I know some of his pictures look like he isn't enjoying things, but he is or he does eventually.  Patrick has a temper and is stubborn.  He will complain with just about anything new.  So we have to do it for a while, before he realizes, "Oh, this is nice, I can do new things."

 



He is still loving school as well!  Today we went to his Spring Concert/Talent Show.  Such fun!!  Avery was able to go with Jameson and I because her school still didn't have power from the hurricane winds yesterday.  Ya know...the day it was almost 70?  Ya know...before the 3 inches of snow that put us over the edge for the snowiest winter since...well...EVER??  Whatever...68 by Thursday.  Keep moving.


Ok, back to the concert.  He showed his amazing musical side by completely ignoring the instrument on his tray.  He thought his skills would be more useful, as a dancer/clapper....everyone else agreed.  He rocked it!  The rest of the students in his school were AMAZING as well!!  I can't say enough about the staff and their dedication to getting each class and student up there to perform a song.  It's an experience that brings you back down to a place where you appreciate the little things.  Jameson and Avery had a blast and cheered on each and every class.  I feel lucky that our family gets to be a part of such an inspirational group of students and staff!

 

They were singing "Under the Sea"

 

I don't want to show off my mad music skills quite yet

Jameson and Avery are great.  BRAG ALERT:  Avery got all A's on her report card and was in the higher portion of Advanced in her MEAP scores.  With the exception of Social Studies.  She made it to the higher proficient, but was tested on Michigan history, but wasn't living here when they taught it(I won't give my thoughts on this).....so I would consider that fantastic!  

BRAG ALERT for Jameson: he has moved on to not eating his goodies in his diaper, to just now removing his diaper.  Yay for Progress(I think)!!

Patrick's bed should be in around the end of April :))  So excited!!! 

I am still working on my project with all your pics in the shirts.  I feel like there aren't enough hours in the day right now!

Happy Easter, Passover and (hopefully)Spring!!