Saturday, August 25, 2012

Hello…

Anyone still here?  I am sorry for the lack of posts…. I am even more sorry that there are no pictures to share (maybe I can try and steal some off of Instagram)

Well we are home… I still can’t believe it.  We have been home for two weeks! Two weeks at home on Milrione  with a Picc line and as a status 1A…I still can’t believe it myself. Katy has been a 1A for the past 6 weeks (although she does have some 1A time banked)

Other than a few minor glitches it has been a VERY good decision for our family.  A decision that wasn’t made lightly by anyone involved.  We all had our doubts and we all wondered if we would be successful… I will say It has not been as easy as I thought it world be.  It’s a big deal to have a child home on a potentially dangerous drug that is often used in a ICU environment in some hospital settings.  So we have learned to care for her line (better than the Visiting Nurses that were sent out and we have since parted way with)

Really I can not say enough things about how well Katy is responding to Mirlrione.  Had I had known that it would have been possible to do this at home I may have agreed to it a bit sooner. Especially when I can SEE the benefits now of Katy’s clothes fit… clothes that she has been wearing for the past 3 years. 

And the pressures that they measure through blood work was the lowest number it has ever been…when she was admitted  6  weeks ago the pressure was 264 today after just 6 weeks of Milrione  her number is 17.  This is the BNP that is used to measure the level of Heart Failure. This was amazing. 

I also, just wanted to take a moment to once again thank you for you cards letters emails gifts.  I try my hardest to give a personal thank you to each and every one of you, but inevitably something gets missed.  For instance someone sent the cutest little hair ribbons one is shaped like an elephant and a few others…and I wasn't;t there when it was opened…so thank you.  We love them.  We love everything… I can’t tell you how happy a pack of Hello Kitty Tattoos in the mail means to my girl.

Thank you! Thank from the bottom of our hearts. For the prayers the good thoughts, the words of encouragement and everything else our amazing “village” has done and provided for us during this unbelievable experience.  Looking forward to the day that this is all far behind us and we can start giving back.

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I also wanted to share with you that The Be A Rock 4 Katy Foundation was chosen as the recipient of this years Colin Classic.

Colin Charles Domanico was born on August 31st 2006.  Colin had a multitude of heart issues, and was a fighter through three open heart surgeries and many many hospital ions. Sadly on September 28th 2008 Colin passed a way.  One of his parents biggest fears was that he would be forgotten.  His Uncle Brian has made it his mission to make sure that those fears never come true.  That Colin will be remembered for his hard to get smiles, and his love for the Wiggles.  One of the ways he is doing that is by hosting a yearly golf tournament to raise money to help families like ours who a struggling during this difficult time. 

Unfortunately, Katy is not well enough to travel to CT. to take part in the Colin Classic.  However, if you are a golfer and are interested in helping keep Colin’s memory alive, and helping our family through this journey.  Please feel free to print off the sign up sheet or to contact Brian Domanico  bdomanico@charter.net

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4 comments:

The DuBois Family said...

I love you Aimee!!! Hugs and kisses to all of you. Thank you so much for always taking time to update. I know your time is limited and I really depend on the updates they keep me sane. I hate being so far away I wish I could help more. we are having a yard sale and Kaylie is going to do a lemonade stand for Katy!!! I am making signs and stuff for her table so if you have a copy of Katy's story please send it to me. oxoxoxo

Anonymous said...

I don't know how I found your blog but I did--when Patrick was really little. I have watched each day for an update and have Katy on my list of kids I pray for. I am so glad to hear that are able to be home and that the medication is doing its job so well while you wait. God's blessings.

Carolyn
(a medically retired Lutheran pastor in Las Vegas)

Anonymous said...

I meant to ask if there was a way you could email me your address so I could send Katy some mail.

Carolyn
(the same medically retired Lutheran pastor in Las Vegas)

Stefenie said...

Praying for all of you!