Tuesday, November 29, 2011
As we suspected the labs confirmed that Katy is once again headed towards congestive heart failure. It breaks my own heart to write those words. It’s just so hard…she can be so good looking great running around the house and the next she is asleep in her chair.
As of now the plan is to admit Kate on Thursday for another “tune up”. They start her on Milrinone for 5-7 days and then we will hopefully be home in time for all the Christmas Festivities.
Katy has never followed the typical treatment path. When it comes to Congestive Heart Failure she is playing by the book. This is the typical path prior to transplant. Basically it is a horrible roller coaster ride of admission for 1 week home for 1 month, repeat. Eventually the time between admissions will get shorter until eventually her heart is completely dependent on the Milrinone and we wait in house for a heart.
All I want for Christmas is a donor heart…
Monday, November 28, 2011
We had such a great weekend… there were a couple not so great moments, but I am focusing on the great ones. I am reminded once again how lucky I am to get to be the mama to two sweet babes…
oh my they are such great, funny, intelligent kids. …must be because of their dad. OK enough gloating.
Thanksgiving morning we had a lazy relaxing morning. Watching the parade. Katy loved the all the dancing . She was dancing all over the living room. Patrick was all over the Spider Man routine… this was the first year either of them had any interest in it.
After about my third cup of coffee. I headed to the kitchen to make the stuffing to bring to dinner. I was happy to have a very eager helper…
Once we were all dolled up we were on our way to Papa’s… with two adorable pilgrims in tow.
Then we attempted to get a family shot…
I love the last one of everyone but me and my toothy grin…. ARGGGG!!! Mike is going to try and work his Photo Shop Magic on that one. I’ll let you know how that works out.
Papa got Patrick…
…true Sullivan style. My dad loves playing with food…he once dumped an entire salad on my head.
After visiting at Papa’s we went to visit my aunt and
all some of my extended family.
I wasn’t kidding when I said Katy & Patrick ate their way through the day. Everyone is always amazed at the amount of food they eat. I swear our day revolves around food… breakfast, snack, lunch, snack, dinner, snack…it’s amazing we ever leave the kitchen.
They worked off all the extra calories with a jam session with Uncle Mike
Every black Friday for the last few years I have headed out with Kris… to do some serious Shop til you Drop shopping. Shopping with Kris is not for the weak… I remember the year I was 8 months pregnant with Patrick she had me out at 4AM and out until well after 7PM. I am still amazed I didn’t go into labor.
This year she let me sleep until 4:30AM. We went to Dunkin Donuts, Kohl's, Hobby Lobby, Sears, Old Navy, The Disney Store, Gymboree, Lunch at Ruby Tuesdays, Wal-Mart, Dunkin Donuts, Target, BJ’s , and lastly Dunkin Donuts one more time. She had me home by 5PM.
I didn’t do much shopping. I never do… for me it is more about be out and about in the hustle and bustle that is Black Friday. I get the urge to run in and score the 65” TV just because it is a Door Buster… the thrill of the chase. It really kicks my Christmas spirit into high gear. This year I had to settle on scoring Katy’s Christmas dress for $15 but by 3pm I was singing Christmas Carols, Kris said I was off key and ridiculously loud… I say the best way to spread Christmas Cheer is singing loud for all to hear. Ok, maybe Will Farrell said it in Elf, regardless I believe it to be true.
I was exhausted when I finally got home. I quickly got my second wind… the kids excitement for the first Christmas special of the year was contagious. They were staying up late to watch the Elf On the Shelf Christmas special. It was really sweet and maybe a tad corny. I may or may not have cried. I loved their excitement and the way they were mesmerized by it… excited at the possibility that their very own elves Bubbles, and Salsa could be on there way from the North Pole. I love reliving all of the same excitement from my own childhood, except now I appreciate it ten times more than I did then.
Saturday morning was a bit scary and stressful…. It’s never good when the first thing out of Katy’s mouth is “I don’t feel good” she was white as a ghost and her breathing was a bit rapid, she was thirsty thirsty thirsty, and craving any salty food she could get her little hands on.
I really thought that we were headed in to the ER for at the very least an x ray and blood work.
Keeping in true Murphy Style… we had big things happening and couldn’t just sit and wait for this Roller coaster to stop… we had a surprise in our kitchen waiting for us. It looks like Bubbles & Salsa made it, and they had a gift and a letter from Santa reintroducing them.
So excited to see what antics these little elves will cause for us….
At some point Katy found her way to our bed…which basically means I can be guaranteed a foot in the face every 4 minutes or so… there really is no other foot I would like it my face so it’s all good. I just can’t wait for her real bed to get here…. so I can take refuge in there.
Thankfully, Katy woke up and was feeling GREAT!! We are guessing the the salty diet of Thanksgiving pushed her a little over the edge, thankfully we were able to help rebound her and we seem to be doing good. The balance between salt, fluid and potassium levels seem to be very delicate.
After being up for almost 20 minutes Patrick spotted Bubbles and Salsa jamming on the Harmonica and playing the tambourine…. those little rascals.
I had to work on a couple orders this morning one of them being Krissy’s and I need to bring it with me today. So I did that while Mike and the Kids rewatched Elf on the Shelf and built forts in the living room. I love that my studio butts up to the living room, because even if I am working I am still part of the family.
Once that was done it was time to go to Kris & Mindo’s to celebrate our Thanksgiving #2
We ate some more… we played… we ate some more…we worked on our touch down dance… we ate some more!
The kids got along really well.
Krissie read just one more story to Patrick about 4 times.
Katy commented on all her family being together…. made my heart smile. She get’s it they are our chosen family.
I hope you and yours had a great weekend spent with family and friends that are like family.