The Murphy Family

Sweet Sweet Kate

2012-02-09T23:29:00.001-05:00

Has a bad bad cold.

I have tears in my eyes as I write this. The baby monitor is alerting me to every cough… and every breath. Trying to let her get some rest… but finding it so hard not to keep going in to check on her. We spent four hours at the pediatrician’s office in hopes of avoiding a trip to Children’s. We left with a “Watch her…if she gets worse you know what to do.” We did rule out Pneumonia, and she does not appear to be in congestive heart failure. All huge blessings!! However her heart rate is increased (129) and her 02 sats are low (94), all concerning, but not alarming.

I’m feeling helpless… I want to just nurse her through her cold with chicken soup, rest and a jammie day. I want to be the one to make her better, to know that what I am doing is enough. Not to have to consult with pediatricians, cardiology, transplant, radiology… all robbing me of my job as a mama. Not to have doctors doubt my decisions, to think they know my girl better than me.

I shouldn’t be crying over a cold… but I am. I am tired oh so tired, and I am annoyed at the mom who sent her clearly sick child to school last week and as a result took out half the class including two teachers and ultimately Katy. I know I can’t put her in a bubble, nor do I want to… but common sense is if your kid has green thick snot pouring out his nose, a horrendous cough, and those sick little watery eyes. KEEP HIM HOME!!! Enjoy that jammie day and chicken soup with your babe who will bounce back after a day or two of rest… and maybe just maybe you will spare my daughter, who will not bounce back with a cup of chicken soup and a movie day with mama… instead she will struggle to breath and cough so hard that she vomits.

Prayers are needed and much appreciated. She is a tough cookie… so much stronger than her mama. Smiling with a fever of 102… and making the nurses laugh. She is awesome so awesome and she doesn’t deserve this.

Prayers we can keep this moving and not end up in the hospital where RSV and GI bugs are running rampant.

February is all about HEART

2012-02-01T01:29:00.001-05:00

Everyday is all about heart for me. I never thought I would feel so passionately about a cause. I am usually not one to rally or preach or shout awareness for causes. There has just never been a cause that triggered a feeling of passion in me to educate others.

Obviously since we learned of Katy’s significant heart defect, my eyes were opened to the amazing, yet heart breaking world of Congenital Heart Defects (CHD). It just was never on my radar, I never knew just how common CHD’s are. 1 in 100 babies are born with a CHD. Forty Thousand Babies are born with CHD’s each year in the United States.

I find it maddening that I was unaware of the #1 birth defect.

It makes me wonder why was I unaware of the birth defect that is the cause of over thousands of deaths each year?!

Why was I aware of Down Syndrome, the Jimmy Fund and all the children suffering and dying from Cancer? But I was unaware of the #1 birth defect in the world.

I believe that it is because of the lack of funding. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. (http://www.childrensheartfoundation.org/about-chf/fact-sheets)

Since I became a mother to a child with a CHD. I have been blessed to meet many of the sweet babies with their special hearts have forever stolen a piece of mine.

Unlike the childhood diseases that are more recognizable, our heart babies aren’t always easy to spot.

Genevieve

Jaiden

John

Jordan

Ava

Rita

Sam

and of course the girl who has the most perfect broken heart I have ever seen!!

I have read, and talked and heard all these kids’ amazing stories. They each have endured more than any child should ever have to endure. Yet, they all have an unmistakable smile on their faces that make each day a little brighter.

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research. Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research. (www.childrensheartfoundation.org)

Can you imagine what we could do with more research for these beautiful babes, who even though they have been through so much in their short lives have an amazing spirit about them.

Please visit The Children's Heart Foundation for more information and ways to help make a difference.

So What He’s 3 and She’s 4

2012-01-23T23:57:00.001-05:00

And I just made their Birth Announcement Nursery Art.

You can judge me. The frames have been empty on their dressers since before they were born.

It’s OK… Because they are cute!! I love the subway arty style.

And when they are older and they are packing up their room, they won’t remember that I didn’t have them done until they were 3 & 4. They will think that they were always there.

There big kid room is coming a long… I am eyeing some ADORABLE Pottery Barn Bedding… but even if I could afford it…. I wouldn’t spend that kind of money on a set of sheets for me let alone kids. So I am on the hunt. Will share as it comes together.

Happy Birthday Handsome Boy

2012-01-19T09:25:00.000-05:00

Three years ago Mike and I were blessed with a healthy baby boy, and the world gained a kind, gentle, loving, caring and funny person.

Patrick you were and are a miracle and gift to our family. An easy going, happy spirited fun little one, that has brought nothing but pure joy to our family. Your timing was impeccable and I love that you and Katy are so close in age. You two have an amazing bond and I see it getting stronger and stronger each day.

You gave me a pregnancy I prayed for, no complications. I was just a normal pregnant lady.

You entered this world on your terms took your sweet time doing it.

I love that you are a caring sweet boy, just like your daddy. You are a definite care taker, a nurturer.

You have a smile the lights up a room and melts your mama’s heart each and every time.

Thank you little man for completing our family. For reminding me to stop and laugh and tickle, and enjoy this awesome life.

I love you to Infinity and Beyond!!!!

The Why vs. The Why Me

2012-01-17T21:20:00.001-05:00

Lately I have been focusing on the Why. Not to be confused with the why me, that I have struggled with in the past. It’s not that I don’t still struggle with the Why Me… I do just not as often. In some ways I feel I have made a bit of peace with the why me. Learning to take the good with the bad the natural ebb and flow of life. Focusing more on the haves and less on the have not’s.

This is a great way to live, it would be oh so wonderful to think that I can just bottle up my fears, sadness, and anger that go along with the Why Me. It’s not realistic for me to think that I can do that…it’s not just a switch I can turn on and off and even if I could, I’m not sure I want to… it reminds me to enjoy the good and the normal so much more. It has also helped me work my way through to want to know the Why.

I want to know what my purpose is. Not matter your religious beliefs (trust me I am still trying to figure mine out) I know that I do believe that each and every one of us has a purpose. I know that my main purpose is to be the best wife to Mike (I am working on it) and the best mother to both Kathryn and Patrick. To be a respectful loving daughter, and to be a kind and caring citizen. But, I think there is something more I can and should be doing.

Our life has been a state of unknown scary limbo for the last year and a half… the last 18 MONTHS. Katy has been listed on the heart transplant list for EIGHTEEN MONTHS! Pretty much unheard of… But, really our future has been unknown and scary since I was 18 weeks pregnant with my baby girl and the doctors first uttered those words. “There is something seriously wrong with your baby’s heart” on that warm, sticky August day when our world would never be the same and I spent the follow days, thrashing around in my bed inconsolable screaming WHY ME?!?! Why our baby that we have prayed for, begged for, endured more medical procedures and heartache then I ever thought possible. Maybe I have just focused on the more of the Why now because I realize that I may never know the Why Me? or maybe just maybe if I find the Why the answer to the Why Me will come.

The most important thing I have learned is to enjoy the small things. To really stop and take in your surroundings and be thankful for all you have. I have learned I am able to get by on a lot less, and still have a pretty amazing life. I have learned that people will surprise you when you least expect it and that one way or another we will be provided for. I have learned that I can count on my parents, friends, loved ones and strangers. I have learned people want to help… I have learned it is OK to accept help. I have learned that I can not control it all no matter how hard I try, and that in some instances it is better to give up control and just enjoy whatever the plan is. I don’t know how this story ends, but I do know if it were to all end tomorrow I could some how make peace with it. Knowing that I lived each and every second not worrying about our future.

I don’t know where my search for the Why is going to take me. I do know that I have a purpose and when I figure it out I am going to do BIG things with it! Big!!

For now I am going to be focusing on working on being the best wife and mom that I can be and spend some more time feeling happy… it’s a feeling I haven’t felt in some time and it feels A.M.A.Z.I.N.G

These guys might have something to do with it…

Stream of Consciousness

2012-01-12T11:15:00.001-05:00

January Edition

Not too much going on… no news is usually always good news with us.

Katy had an uneventful Christmas vacation… she didn’t really understand what school vacation was she thought that we were going on vacation…like leaving on a jet plane. So she was a bit disappointed when we told her that her vacation was snuggling up and having jammie days and getting to play with all her new toys. She seemed to think that was a pretty good option. Here she is taking a ~~Cat~~ Dog nap with Shelby. Yes, she is standing up and sleeping.

Lots of fun with family! I love watching them all play. They get along so well! So awesome!

She had a great cardiac check up… Dr. Blume is very well with how well she is doing. Fluid Restriction although it is hard on us to ignore her repeated requests for WATER…we can usually distract her enough.

Patrick is doing great, loves school and is getting excited about his 3rd Birthday!! Which like Kathryn’s will be low key to help prevent germs…and they will both have a HUGE bash in the summer.

Oh and the big news is that it is official we are CRAZY!! They Murphy Family has grown by one

Introducing

Miss Minnie Murphy

She has stolen all of our hearts and has brought such joy to even Shelby…

Sometimes you just need to do what you need to do…and I felt we needed some happiness. Shelby is a bit big for K & P to handle and I wanted something that K & P could help take care of and walk. Minnie has been an amazing fit to our crazy family. I don’t regret it at all, and it is something we wouldn’t be able to do post transplant…no new pets 6-12 months after transplant.

A Look Back on 2011 & A GIVEWAY

2012-01-03T23:33:00.001-05:00

Seeing our year through my blog headers.

I have a post I am in the middle of with the highlights of 2011… not sure if it will get posted or not.

I thought it might be fun to see some of the headers that have decorated my blog these past 12 months.

Which one was your favorite?

Leave a comment on here …and you mind find yourself the winner of an ADORABLE altered desk calendar.

Share my blog link on FB…leave a comment and let me know!

The more comments you have the more likely it is you will win.

I will have a picture of the prize tomorrow!

For now let the Giveaway Begin

Header1

Header 2

Header 3

Header 4

Header 5

Header 6

Header 7

The Christmas that almost wasn’t…

2011-12-29T23:02:00.002-05:00

WAS one of our best Christmas’ to date. Only tied with the Christmas of 1999 the Christmas Mike & I got engaged, and 2007 the year Christmas came 5 days early with the birth of our baby girl.
Christmas eve is all about the build up… the new Christmas jammies… the writing a note to Santa leaving cookies and milk for the big guy and carrots for Rudolph. Daddy reads ‘Twas The Night Before Christmas from the same book my dad read to me and my siblings when we were little. It’s all about the traditions.

I know that Christmas is not only about the gifts. However for a family with two little ones Santa has a lot to do with it. There are very few things as wonderful to see then the sparkle in you babes eyes when they see that Santa came and all the fun pretty packages under the tree for the, Thankfully with the help of a lot of elves, Santa was able to ROCK this Christmas.

For Mike and I the best part of this Christmas was both our babies coming down the stairs to find presents under our tree and not in a room at Children’s Hospital. One Christmas spent at Children’s was enough for us. We both knew it was a very real possibility, and we would have made the best of it. It was nice not to have to.
Instead this is what we were greeted with as Katy & Patrick entered the living room…

Then they both went straight for the bikes…

I won’t bore you with the 300 pictures I took over the 3 hours that it took to open presents… but I will say it was awesome!! AWESOME!

Now the question is where the heck are we going to put all this?!

A Night With The Rockettes

2011-12-21T21:18:00.001-05:00

I was so excited when our family was invited to see The Radio City Music Hall Christmas Spectacular. We were invited by Children’s Hospital and The Boston Celtics Shamrock Fund.

I knew it would be a fun night for our little dancer. Especially since after she saw the Rockettes perform in the Thanksgiving Day Parade she told us she wanted to be a dancer.
We met up with another amazing heart family, The Kaiser Family. They just so happened to be sitting in the same box as us which made for a fun time for the kids and gave Shannon & I a chance to chat. Sometimes it is so nice to talk to someone who gets it.

Katy & Bridget got along so well. Katy later told me her favorite part of the night was playing with her friend.

Patrick was memorized the entire time…

Changing the World in 4 short years…

2011-12-20T10:22:00.001-05:00

My Katy girl is a sassy precocious 4 year old!!

How did that happen? It is amazing to me how truly wonderful she is. Katy has a spirit about her that has gotten her through some pretty difficult days. She faces her struggles with a smile and lights up the room with the twinkle in her eyes. She reminds us to stop and live, laugh and love. She has touched the hearts of many people who have never even had the opportunity to meet her.

I am so lucky to be her mom… I think that almost everyday. She has a sense of humor (much like her mama’s) and a kind and caring heart just like her daddy. She is a great little big sister who just really enjoys life. No matter what she is doing she is doing it with a smile on her face. Unless of course I am asking her to help clean up, or it’s time to get ready for bed…then you will see the fiesty side of her that I love just as much if not more than her sweet side.
I have no idea what her 5th year has in store for us. I do know that we will enjoy every minute of it, because the years are flying by.
Happy Birthday Sweet Katy Girl!!

I Believe in Santa

2011-12-19T17:49:00.001-05:00

It's funny, when you are a child you are lost in the magic of Christmas, but then you receive that crushing blow that Santa is not real and that magic seems to go away.
For many, the magic returns when you have children of your own, and I've had the opportunity to share that Christmas magic with Katy and Patrick for the last 5 years. Mike & I have had the privilege to be the ones providing the magic, We’ve been the one that has brought pure joy to their faces all the while letting Santa take the credit, it has been magical.
This year however, we found ourselves in a position where for the first time ever, we weren’t going to be able to provide that magic for our children. Life circumstances took it away from me, and while I'm sure we would have had a wonderful Christmas just the same spending time with family and friends, I would have felt like a failure. Not getting to see that joy on their faces on Christmas morning because, for the first time ever, we just didn't have the money to do it this year
It all started with an email from Katy’s dance teacher, shortly after our last hospital admission. She was asking what she could do and that she and her friends and family would like to help “Santa” out this year. My initial reaction was to politely decline. Then I realized that she most likely wouldn’t take no for an answer. So I put my pride aside and focused on Katy & Patrick and thought about their Christmas Wish Lists knowing there was no way to make all those wishes come true as we had in the years past. So I emailed her their lists and said just one thing would be such a blessing.
Well within 24 hours I had another message in my inbox…requesting more ideas. WHAT!?! The list I gave was pretty hefty for each child. I never in my wildest dreams could have imagined that they could fill all those requests and come back asking for more.
This is a tough year for a lot of families, and to think that people, strangers were willing to provide for my family all these “extras” blew me away. With each email I cried a bit more… happy tears, thankful tears.
Shortly after Thanksgiving it was time to pick everything up. Miss Paula tried to prepare me for the magnitude of their generosity…but honestly nothing could prepare me for what was there for my family. I literally backed into Santa’s Workshop. I had told myself not to cry…but I couldn’t help it.
Every.single. item on their wish list was there in addition to beautiful clothes, shoes, boots, diapers, wipes and an abundance of gift cards.
The gifts are now wrapped and thanks to the generosity of others, Katy & Patrick are going to have a wonderful Christmas. We are going to experience that special joy on Christmas morning. That indescribable, magical feeling. I am so thankful, they brought the true spirit of Christmas to my home.
I don't know how I can ever thank you . I've always believed in the spirit of Christmas, but this year, more than ever, the spirit has touched me and my family and I am just so overwhelmed and grateful. So for those that I have already thanked, thank you again, and for those that I haven't, thank you from the bottom of my heart.
Merry Merry Christmas
Much Love,
Mike, Amiee, Katy & Patrick

Elf On The Shelf

2011-12-19T09:55:00.001-05:00

So this Elf on The Shelf idea has really taken off… I have to say I think it is a bit creepy. But, then again a lot of what we do is creepy if you really think about it. “He sees you when your sleeping”…need I say more?
This year it seems like Elf On The Shelf has just become another mommy competition. I think it is a fun thing and Katy and Patrick really enjoy looking to see what Bubbles & Salsa were up to the night before. We try to keep a positive spin on it… we don’t really like to do the whole Santa is watching and you will be on the Naughty List.
It’s fun and there is no denying that the kids get a kick out of it.
Here are some of the crazy things our elves have done!

So for all the Elf Haters… Merry Christmas!! I bet you are the same people who claim to hate flowers on Valentine’s Day when yours don’t arrive.
Funny read: Over Achieving Elf on the Shelf Mommies

Stream of Consciousness

2011-12-17T16:37:00.000-05:00

December Edition

I find myself filled with so many emotions this time of year. I think it is that way for a lot of people.

Christmas is a time to reflect on the year… to be merry and cheerful… to give more than you receive… to celebrate and kiss under mistletoe.

What do you do when the year you have to reflect on is the hardest year you have ever faced in your 30 years on earth? What do you do when you have nothing to give and yet are blessed with the kindness of strangers who just want to make Christmas magical for you and your family? What do you do when you would rather sleep than kiss your love under the mistletoe?

I’ll tell you what I am doing… I am faking it until I make it.

What do you do when the year you have to reflect on is the hardest year you have ever faced in your 30 years on earth?

I am reflecting on all the blessings that our family has been given. Katy is thriving at school and loving dance once again this year. Patrick is a school and has a place that is his own that he is loved on and comfortable and learning new things… it is his safe place when life gets crazy with hospital appointments and admissions. I am being reminded that people are good and want to do good. I am remembering all of our friends and family that have gotten us through this year and will get us through the next.

What do you do when you have nothing to give and yet are blessed with the kindness of strangers who just want to make Christmas magical for you and your family?

I am saying thank you…and praying for the day that we can one day Pay It Forward. I am using one of the gift cards that was given to us and buying the car behind me a cup of coffee… it hopes of making their day a bit brighter.

What do you do when you would rather sleep than kiss your love under the mistletoe?

You kiss because you know you are not going to be able to sleep anyway.

All of this is made easier when you have the luxury to see the Christmas through the eyes of your children. Katy & Patrick definitely make it easier to suck it up (for lack of a better word) They are so happy and excited for every little detail, and really their excitement is contagious.

So we do it all and we do it as BIG as we can. We don’t know what tomorrow may bring, but we know we have today. So today we are going to do it up and make the best memories.

It’s a Wonderful Life…

2011-12-08T23:14:00.000-05:00

Except when it’s not… but when it is it is so wonderful.

Daddy’s girl… forever and always!!

Me & My mini Me!! Love that boy!!!

Best friends… wow their relationship is so amazing!! I hope they are always this close.

My girl loves to dance

2011-12-08T22:51:00.000-05:00

I have said it before and I will say it again… Katy loves dance class. I am so thankful that we have had the pleasure to join the Catch the Funk family. They have really scooped us up and loved not only Katy, but our entire family. We are so blessed by the generosity of Miss Sharon who has made this dream of ours come true. I love watching Kate dance as much as she loves dancing. I have seen such growth in Katy’s social skills as well as gross motor all because of dance. She is loved by Miss Sharon and Miss Paula and it has been such a wonderful experience for our family.

Meeting Santa…

2011-12-08T11:41:00.000-05:00

= ~~FAILURE~~ Complete Success!!

We went to see the Big Guy… and oh it was magical!! Katy ran up to him and gave him a huge hug all before I even had the camera out. She had a lot to tell him and I think she was afraid she would loose her confidence. I have to say I was surprised when they both climbed up on his lap and chatted with him for a good ten minutes.

Another Admission

2011-12-06T22:42:00.001-05:00

So we made it through another admission. Thankfully it was pretty uneventful. The Milrinone did it’s job and Katy was bounced back pretty quickly. We are all just really hoping and praying that this “tune up” will get us through to Christmas. We are all pretty confident that it will, and if it doesn’t well I know for a fact Santa knows where to find Katy. He found her there when she was just 5 days old.

Katy’s resilience and happy self amazes me and everyone who meets her. Now that she is a frequent flyer on 8 East…we had a ton of visitors from all our favorite nurses!! Totally makes our days & nights easier.
We are home on STRICT fluid restriction as we are all in agreement that keeping her a bit dry will keep us out of the hospital. She is limited to 450 mls by mouth which works out to be about 15 oz. As you can imagine it is a struggle to limit her intake on our salt loving, spice seeking baby girl. So far so good. We weigh her each morning and are monitoring her breathing and activity and are so happy that all seems good.

Delicate Balance

2011-11-29T18:40:00.002-05:00

Katy was seen in clinic today, after a few questionable days of tiredness, being extremely thirsty and not much eating we knew it was time to visit the team.
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…

Thanksgiving Weekend Recap

2011-11-28T00:15:00.001-05:00

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.

*******Thursday********

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.

Katy ate her way through Thanksgiving Day…

Patrick did too… they are such good eaters!!

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.

Pie Time…

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

Katy loves her Auntie Dar!!!

*******Black Friday!!!******

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.

Obviously the Laundry Fairy didn’t come

So excited to see what antics these little elves will cause for us….

******Sunday******

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.

Be Thankful

2011-11-21T17:01:00.001-05:00

Be Thankful in all circumstances.

I love this time of year… I cherish the opportunity to reflect on the year, share what we are thankful for, and just be with loved ones. One of my favorite things to do is the 30 Days of Thankfulness that is viral on Facebook. I love to hear what others are thankful for… the big things like being Cancer free, their husbands, kids and then the not so typical Big things… but more the real life day to day things that we are thankful for… Starbucks… baby wipes… wine!

I have to say when November 1st rolled around… I felt anything but thankful. We were at Children’s, Katy was very sick and I was a mess. I could not participate… I was angry and frustrated. I was anything but thankful. I once again felt alone and left out. Reading what people were thankful for made me angry, possibly jealous. I couldn’t see past what our life was at that very moment. Most of all I was frustrated with myself that I could not find one thing in that moment to be thankful for…not one thing. So I gave up… I decided to skip being thankful…and have a pity party instead.

This past week I had my first teacher conference with Katy’s preschool teacher. As I was looking around the room, I spotted Katy’s Thankful Turkey. With tears in my eyes I read what my little girl is thankful for… she is thankful for going to restaurants, for the mall, for her mommy and daddy and Patrick, for her nurses that help take care of her, and Turkey. How awesome is she. I learn so much from her everyday.

Seeing her thankful turkey reminded me that I have so much to be thankful for… possibly more than I have had in years past. When I think back to November first, now from the comfort of my living room I am able to think of specific things I was thankful for. The thing is you can always find something to be thankful for. So I will leave you with 30 things that I am thankful for.

I am thankful for…

1. My amazing, strong, caring and understanding husband. Mike is my best friend and I am most thankful to have him by my side for better or worse, in sickness and in health, for richer or poorer. I love you baby, forever and always!

2. My girl Kate… my first born she made me a mama. The greatest gift I have been given. She is a ray of sunshine and has a strength like none I have ever seen. She has been making the world better since she took her first breath (almost 4 years ago) She is the epitome of a miracle and reminds us each and everyday. I love you to the moon and back Katy Girl.

3. My baby boy… Patrick. He is wise beyond his years, and can keep me laughing on my hardest days. He is such a perfect addition to our family. He is the best Little Big Brother and a ray of sunshine in our life. I love you to infinity and beyond Bubba!

4. Children’s Hospital and the fact that it is 20 minutes from our house .

5. Dr. Marx who diagnosed and followed Katy for her first 2 years of life and 20 weeks in utero. He got us through some difficult and uncertain times in our life. His bedside manner was superb and such a comfort to me during the most difficult time in my life.

6. The nurses and caretakers, they can make or break you when you are inpatient. They remind me that I am Katy’s mom and a BIG part of the team and to speak up and advocate, when I am tired and worn down. They remind me to go get a cup of coffee, to eat, or to sleep when Katy sleeps.

7. My parents. I could not get through any of this without them. They have been there for me physically, emotionally and financially. I love you!! Thank you! (This includes you Tracy)

8.Krissie… who is the best of the best she is my mom, my favorite aunt and my best girlfriend all rolled in to one. She loves me and my family like we are her own and she tells me like it is… she keeps me grounded and let me know its OK to fall apart and tells me when I am out of line. She recuses me for girls day out and spoils my kids. I love you like a fat kid loves cake

9. My friends that lift me up when I need it, but can also cry with me too.

10. Coffee… it gets me through the day

11. My camera… it gives me the chance to capture our life.

12. All the heart moms I have met and have walked this path before me and are mentors to me, and to the ones who are walking behind us.

13. Our extended family that have really shown us the love these past few years.

14. Katy’s amazing teachers, that have given her the opportunity and accommodated her needs and made this school year awesome!!!

15 Little Treasures School for their spot for Patrick, where he is able to grow and learn. All while have a fun comfortable consistent place for him. I have never before met a nicer, more caring group of teacher.It is an amazing place.

16. For everyone that has prayed or thought of our family during this crazy time.

17. Hearing people share Katy’s story…

18. Our current team of doctors headed by Dr. Blume who are making the best medically choices for Katy and helping guide us down the transplant path, and who love Katy.

19. Everyone that is an organ donor.

20. Under eye concealer

21. Ambien for the nights that it is too hard to sleep… it gives me the ability to get the rest I need to face another day.

22. Catch The Funk Dance Studio and Miss Sharon who has given Katy the gift of dance, and has built her self confidence and gross motor skills.

23. The Elves that are helping us make Christmas morning a bit brighter this year.

24. A sizeable stash of scrapbooking materials so that I can continue to enjoy my hobby.

25. Lastly, I am thankful for this blog… it has been a great outlet for me. A great record of our life and a way to communicate with lots of people.

What are you thankful for?

Just Some Thoughts…

2011-11-12T20:12:00.001-05:00

It is so good to be home. So good to be doing normal family things. Lot’s of laughing and snuggles. Hanging out in our Jammies and adjusting to the time change. Gosh it get’s dark so early!!!

We have been trying so new hair do’s. Katy’s hair has gotten so long and has really started to thicken up.

Katy is back in school and went to dance. She is so happy!! Feeling great! Looking fantastic. I think the “Tune Up” did her a world of good. She seems to be running at full throttle and we couldn’t be happier.

This last hospital stay has influenced Katy & Patrick’s play. There is a lot of hospital play and pretending to be Dr. Blume or Dr. Daley… Minnie get’s tube feeds, and Mickey has to have labs drawn. It has really been eye opening to just how much they “get”

Katy and Patrick had experienced another first. We all know how I live for firsts…

We took them to their first movie… The Lion King. They both did great…and were memorized the entire time. So thankful for the opportunity of a fun filled family day!!

We are still planning on an extended hospital stay right after Christmas… so it is looming over our heads a bit but definitely not consuming our thoughts. Usually by this time I am busily planning my princess’ birthday…however we made the decision to hold off and hold a summer…. Wonderland Party for her half birthday when hopefully life isn’t so hectic. Trust me their will still be cupcakes and celebrating our special girl on her actual birthday!!

Do you need Christmas Cards?

2011-11-09T21:58:00.002-05:00

Murphy Custom Creations… was born when it was decided I would stay at home when Katy’s medical needs proved to be more involved than we had originally thought.
To be honest I haven’t given it the time needed to grow into a successful business. A business that I love and is such an outlet for me. Of course the bit of extra money I can potentially make would also be a good thing…. given our current situation.
So I just kind of bit the bullet and started listing cards on Etsy.
I thought I would also share with all of you. I would love to make your Christmas Cards this year.

Custom Orders are my favorite. You can email me at amieemurphy@gmail.com for more information.
Thanks for your consideration
Fondly,
Amiee

Enjoying Life at Home

2011-11-04T21:26:00.001-04:00

I am SO happy to be home!!! But, my gosh does it look like a tornado hit. That’s OK I am happy to be among the chaos. Stepping on Legos…sleeping with Strawberry Shortcake Shoes, sure beats sleeping on a cot in the hospital any day.

I am going to try and answer a few questions that have come up.

How is Katy?

Katy is doing great. She is happy to be home and playing with her brother and is begging to go back to school. It is hard to know what helped Katy turn the corner was it…the Zithromax… the strict fluid restriction… or the Milrinone. I’m guessing it was not the Milrinone I think it was a combination of fluid restriction,Zithromax and a few doses of IV Lasix to dry her out. Time will tell. Katy is directing us and we will continue to follow her lead.

Why are you home?

We are h0me because as much as it is important to keep Katy’s heart healthy it is also just as important to keep her quality of life just as healthy. For me, and I think Mike would agree hospital living is hard on all of us especially Katy & Patrick and although it is hard to go back and fourth, I think as long as Katy’s health allows it is best. What that means is that there will be lots of follow up appointments and admissions for “tune ups” eventually Katy’s heart will just get too sick and we will have to stay in the hospital on Milrinone until Katy gets a new heart.

Is Katy still a Status 1A?

Unfortunately, Katy is no longer a 1A. Once she stopped the Milrinone IV she was put back as a Status 1B. Every time she is on Milrinone she will continue to gain time as a 1A. Thankfully the UNOS transplant list is strictly monitored, which although it’s hard for us right now, because we all want the gift of a new heart yesterday…. it is not Katy’s time. We have to have faith that the perfect heart for Katy will become available when it is needed.

Do you think about the donor family?

Of course we think about the donor family. On our greatest day, as we are all rejoicing for Katy’s second chance at life. Another family will be mourning the greatest loss. It is impossible not to think about them and where this sweet new heart has to come from. We hope that one day the donor family will find some peace in knowing their sweet baby lives on in our girl.

Do you still want me to drop off the meal I signed up for?

The Helping Hands site is still active and if you are still willing we would very much appreciate a home cooked meal from YOU! Although we are home we still have lots of appointments and labs and it would be great not to have to worry about cooking on those nights.

Thank you from the bottom of our hearts for all the prayers, gifts, kind words and for all the donations to $1 campaign. You mean the world to us and we are so thankful for each and every one of you.

Much Love,

Mike, Amiee, Katy & Patrick

My Head Is Spinning

2011-10-29T23:23:00.001-04:00

I am currently writing this post @ 10:30 pm on Day 4 of our hospital stay… Day 3 got lost in the shuffle. I will try and catch you up… Hold on…it’s a bumpy ride.

Day 3 Thurs. 10/28/11

8 am rounds… it is decided to start Katy on Zithromax just to be sure.

9 am Started the morning with a trip to x-ray to see how Katy’s lungs are looking.

IV went bad after only 2 days UGGGGHHHHHHHHHAAAAAHAHAHAH (do you hear my frustration)?

Fluid restriction increased Katy can now only have 400mil. by mouth. For a child who can chug 200 mil in a couple sips and LOVES her Salt this is a really difficult task… lots and lots of distraction.

11 am Patrick is at school…Mike comes up to take over I am a bit fried… go get coffee.

Wait 3+ hours for IV team to come and place a new IV.

Nana & George come up to visit… Bring a HUGE castle balloon that made Katy’s day.

It’s decided Nana will keep Patrick and I will go home to sleep once Katy is settled.

X ray is back and shows a bit of improvement. Katy looks better. Talk of weekend discharge?! ?! WHAT!!!!

IV Lasix is stopped… ( don’t want to dry her out too much)

6pm Dr. Blume comes to see Katy is thrilled with how well Katy looks… agrees with a possible discharge on Sunday?! !!

Katy is a bit sad and missing Patrick…so we open a Special Delivery from one of my friends and it is filled to the brim… Katy LOVED the distraction and all the goodies!

I decide I can’t leave…Mike and I both stay. I did sleep better knowing Mike was on duty.

A little chest PT from our Awesome Night Nurse

Day 4

Dr. Blume is in to see us bright and early. She is so pleased with how well Katy is looking. Says… “ Looks like you will be Trick or Treating at home” Mike and I are both completely shocked… but we’ll take it.

then…she takes a listen… a long listen…and says maybe not.

(see what I mean by the roller coaster this is all in a 5 minute time span)

Still sounds way too squeaky… really thinks we should try the Milinrone to see if it works, and if Katy can tolerate. We agree… and want to do what is best. Dr. Blume is off to see if there is room for Katy in the ICU.

There is a bed and Katy will be moved around 4pm… in the meantime we have a revolving door of visitors WE love visitors.

Katy’s preschool teachers Miss Jordan and Miss Gentry(who is also my friend) came to visit and brought lots of goodies for Miss Katy. Cards from all her friends… crafts… books so much fun stuff!! They also delivered the most ADORABLE Tinkerbelle Build A Bear from her other teacher Ms. Roberto who couldn’t visit. Jen also brought lots of goodies from the Stoneham Fire Department and a card signed by all the firemen…lucky lady!

Then Uncle Danny, Auntie Kim and Dawn came up with a HUGE Minnie Mouse and spent lots of time playing with Katy in the playroom!!!

The just before we were headed to the ICU… Uncle Johnny Boy came up to see Miss Kate…he always brings a smile to Katy’s face…and even played a game of Candy Land.

Then as we were getting settled….Papa arrived!!! Katy loves her Papa!

Unfortunately Patrick has a cold and couldn’t come up to visit. This was very hard on both Katy & Mama

The Milrinone was started at 5:50 a very low does to see how she tolerates it… as long as she is handling it well (which as of now 11:15pm she is) her dose will go up around midnight and her status on the transplant will go from a 1B to a 1A which will make her 4 times more likely to get a heart.

Patrick is at Papa’s nursing his cold. I hope my little man is better soon!

Oh, yeah and Boston is getting SLAMED with SNOW 6-8 inches in OCTOBER?!?! I guess it’s a good thing we will be Trick or Treating at the hospital.

Thanks for all your love, prayers and kind words.

Much love!

All the Murphy’s

October Admission Day 2 10-27-2011

2011-10-27T23:38:00.002-04:00

written at 11:30 pm
We had a pretty relaxing day…lots of coloring, movies and playing Hi Ho Cherry Ho. Around 5 pm we learned that the culture came back negative no Respiratory Infection. Good News?! I don’t know. Since that means without a doubt all the fluid and pulling, and rapid breathing and tiredness are due to Katy’s heart failure.
The plan is to continue with IV Lasix (diuretic) We are on strict fluid intake. (what goes in…must come out) As of right now the plan in to continue on this course of treatment and see if we can get the fluid off without the use of Milrinone.
Papa, Nana Tracy and Patrick came up to visit and brought lots of goodies for Miss Kate.
Patrick and Daddy headed home… saying goodbye was hard.
Thank you again for all your prayers and kind words and to Deb who has started the $1 Campaign on our family’s behalf. You can read more about that here: $1 One Single Dollar

Once Upon A Time…
That’s how a fairy tale starts. Once upon a time a girl met a boy and fell in love, once upon a time a young man came to the big city with a dream, once upon a time…and the story ends happily ever after. Today isn’t happily ever after. It’s the beginning, yet again, of Once Upon A Time.
Katy was admitted today to Children's Hospital. She is in Congestive Heart Failure and needs a heart transplant. Katy is 4 years old.
If you haven’t had a chance to read Katy’s mom’s blog post today, read it here: http://murphy216.blogspot.com/2011/10/katy-girl-update.html
http://murphy216.blogspot.com/2011/10/october-2011-admission-day-1-10-26-2011.html
Excerpt: Katy’s chest x-ray showed that she has some fluid in her lungs i.e. she is in Congestive Heart Failure. Basically this was completely unexpected…but at the same time completely expected.
I saw Aimee last week. Katy’s mom. And she’s amazing. Brave. Strong. Fragile. Fighting. Human.
On facebook, on the news, we read stories that touch us, we care. They stay with us, then life moves along. With Amiee the story is everyday. Its not just about Katy’s heart, but also a story about Mike, Patrick, their family dynamic and what a toll any illness takes on a family. I thought I knew some of what they were going through then, mid conversation, Aimee shocked me.
“I wish I could buy a cup of coffee”
I started then looked left and right to gesture for the waitress. “I’m sure they still have coffee” I said, still looking around. Amiee made a noise and I looked at her. She was staring at the table... I saw a huge tear. “I don’t mean now” she whispered. “I mean, I wish I could, you know, BUY a cup of coffee.”
And I still didn’t get it.
Finally Amiee looked me in the face.
And embarrassed yet honest she told me their situation. Ending with “And I don’t know what I can get for it, but if I can get up the courage to sell it, we are going to.” Twisting her wedding ring on her finger.
“Deb” she said “We are barely paying the bills. Between rent, utilities, parking, gas, car repairs, I don’t think we can do it this month. Basically, we’ve been using the fund to get Katy to the hospital, for the parking, for gas, for one of our meals there. She needs new pajamas with snaps for the IV cords, Patrick is growing. I can’t work because I need to be with her, Mike is taking care of the house, of Patrick. He can’t work consistently. We are waitlisted for housing aid and we are just about at the end of everything. And now Katy is going in. And I don’t know how we are going to make it.”
And I had nothing to say to her. I had no words to comfort her, no ideas. Because honestly, I can't imagine for a minute what she is going through.
In my professional life I’ve planned huge events. In my personal life, I’ve rallied. I’ve pep talked. I have motivation galore. “Write to Ellen!” “Start a campaign” but I am stumped. Because frankly it's too big for me. I dont have a job to give, I dont have the means to provide child care, the resources to drive a meal into Boston. I have 3 small children of my own and a husband constantly working.
BUT! I have a dollar.
And a stamp.
And an idea.
I thought “If I could start a facebook viral request.... If everyone everywhere could send just a $1. If everyone only knew that this tiny four year old is in Congestive Heart Failure and her parents have hit bottom, wouldn’t they help?”
Would it work?
Could it work?
$1?
From every friend of every friend?
I’m not asking anyone to donate more. I'm not asking anyone to give give give. But yes, I'm flat out asking for money. Because it's the only thing I know they can use, and it's the only thing today that I can ask for that I think could be given. And its the only thing that Amiee doesn't have the courage to do on her own. If she can face Katy's doctors, I can face all of you.
$1.
If you can, if you would,please post to your facebook or share where possible my request.
Please send one single dollar to:
Be A Rock For Katy
The Savings Bank
357 Main Street
Wakefield, MA 01880
Thank you.
(and if you can't, your prayers are far more valuable. Please don't let this request turn you away from this support page)
INSTRUCTIONS BY PAYPAL | Existing Account Holders
You will need a Paypal account
Go to: www.Paypal.com
Log In with your username & password
Select tab: Send Money
Into the text field To(Email or Mobile Phone), type in: bearock4katy@gmail.com
Into the text field Amount type in: the dollar amount of your gift.
Ignore the drop down text field: USD - U.S. Dollars.
Underneath the text boxes Amount and USD - U.S. Dollars you will see two tabs, Purchase and Personal. Select: Personal
You will see the words: This money is being sent as a: with (5) choices.
Select: GIFT
Then hit: Continue
You will be directed to a Review your payment and send page.
BUT WAIT!!! (optional)
BEFORE you hit "Send Money" scroll down to the section that says: Email to recipient
In the Subject Line, please overwrite the prefilled You've got Money text and enter the words: Katy Rocks
In the Message field, please write in any message you'd like the family to know and Your First and Last name (Email optional)