Thursday, September 29, 2011

Katy’s First Day of Preschool

My girl rocked her first day of preschool.  I mean rocked it… in her typical rock star style.

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( I couldn’t decide between Preschool or Nursery School… thinking long term… she will have another  year of preschool and I haven’t decided how I was going to document it.  So I used both… I wonder if it will be as easy to get her to pose for her 10th grade 1st day of school photo)

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I am so happy that Katy was given this opportunity to experience preschool before her long term admission.  She tells us everyday how fun it is and asks if she can please go back tomorrow?!! 

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We are both so proud and excited for our girl… especially…

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This is only the beginning my girl is going to do great things in this world.  I love you Katy!! Just remember Mommy always come’s back… have fun and keep smiling!! XOXO

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Next up Patrick… I don’t think I will handle that drop off as well as I did this one.

Wednesday, September 21, 2011

Katy Girl Admission Update

Thank you to all who have reached out to us and offered support in one way or another.  Team Katy is filled with amazing, caring and wonderful people who I know will get us through this next step.

Amazing things are happening for Miss Katy.  After much discussion with the team it was decided it was best not to rush into an admission.  Katy’s current status is not life threatening.  Although an admission is necessary and the next step in our journey, we have a bit of control on the when.

Katy was very much looking forward to going back to dance class and starting preschool.  All things we want her to experience.  It hardly seemed fair to not give her that opportunity

As of right now the plan is that Katy will continue with dance and will start PRESCHOOL on MONDAY!!

She will be Tinkerbelle for Halloween and get to Trick or Treat.  Then we will be admitted the first week in November.  We will definitely be spending Thanksgiving in the hospital, but haven’t given up hope that we will be home for Katy’s 4th Birthday and Christmas. 

Thank you for all the prayers and love. 

Stay tuned for first day of school pictures!!!

Tuesday, September 13, 2011

Katy’s September Cardiac Clinic Update

Today was Katy’s Cardiac Clinic.  ACK!!!!

Looks like we have come to a fork in the road and it is time to make some major decisions for our little girl.  Decisions that no parents should have to make, sacrifices to Katy’s quality of life as well as our entire families.

I knew that this day would come… I knew that it was always  a possibility… I know that we are on borrowed time… I also know that it SUCKS.  ( sorry… but it does)

It appears that we have reached another plateau.  Katy has not gained any substantial weight less then two pounds in the past year.  All our hopes and dreams for the G tube have failed us.  Recently she has also stopped gaining height.  All not good, really concerning this to both Mike and I and the team. 

So what do we do?! What are our options? A new heart would be great!!  But, given that Katy has been listed for 16 months and we are still waiting… we have to be a bit proactive and expect that we could be waiting for possibly another year.

We don’t have a year to wait and expect that damage won’t be done to other organs and cause irreparable damage to her growth.   

Katy needs to be in the best possible place nutritionally when it comes time for her heart.  This will make her recovery from Transplant that much easier. 

Our next step the  step I have dreaded.  Is to hospitalize Katy and start her on IV drugs (Milrinone) to help improve her heart function.  The hope is that with this med helping relieve some of the increased pressures and that the calories she is usually burning up will be used to improve her growth.

It is a big hope and there is no guarantees that this will even work.  So the plan would be for Katy to be hospitalized for a minimum of 6 WEEKS to give this a shot.  If it were do work then we would be hospitalized until Katy got  a new heart. As a result Katy’s Status on the transplant list would go from a Status 1B to a Status 1A which makes her 4x more likely to get a heart than at her current 1B status. 

It’s not really an if it’s more like a when. 

We need to work out logistics:  Childcare, finances, holidays, etc. etc.

We will once again need our Team Katy to kick it up into high gear… and rally around us.  You are what get us through. 

Friday, September 09, 2011

You still here?

I hope so… I promise I have a good reason for being MIA… I had a picture catastrophe.  No really, it was a  living nightmare.  I downloaded my camera card full of wonderful memories, deleted the card.  (Do you know where this is going?!  Only to open  he non existent  files on my computer… poof they were gone.

Devastated is an understatement.  I was actually so upset that I was speechless… which if you know me I am never speechless.  I had no words and I had no idea how I would move on from that moment…OK now I am being a bit melodramatic.  Mike was confident that he would be  able to recover the lost data from the memory card that I deleted.  His words were comforting, but really useless until I was able to see the images  ahh…my sweet sweet pictures!! Yup they were there… and for $25 they could be mine.  Best $25 dollars I have spent in a long time.  So I now own the program, if you ever need your photos recovered from your memory card I can make it happen for you. 

So now that I have them all organized safe and sound on my hard drive, external hard drive, and on DVD’s I am ready to share with you all the amazingness that has been going on.  Well that was a big build up… I mean everyday is amazing but you know mostly we are the same. 

No big announcements…

Katy is still waiting for her heart… yup we have been waiting over a year. 

Patrick is still adorable as ever!!

No, I am not pregnant.

But, we did have a fun summer.  Lots of pool time, time with friends and family.  I am to tried to even to post a picture,  or figure out how I plan to catch up…back date… jumbled mess… etc., etc.,  I will sleep on it…however there will be photos LOTS of photos that are all safe and sound.

I am now rambling… until tomorrow…

XOXO

A.