A Night With The Rockettes

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…

Another Admission

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

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…

October Admission Day 2 10-27-2011

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)

Katy Girl Update

Yesterday was a big day for Katy.  She had a Cardiac Cath.  The first one she has had since last year, when the results landed her on the transplant list.

Yesterdays cath brought GREAT news…

NO new damage to her heart or lungs!!! 

I was eerily calm heading into this surgery.  I usually (as you know if you have read any of this blog) a hot mess leading up to Katy’s appointments.  For whatever reason I wasn’t this time. I think I just knew that there was nothing that could be worse than last year! 

It was a long day (15 hours) but we avoided an admission!! Which is always a good day in my book.

Kate was supposed to be first case, but was bumped for a very sick baby from the CICU.  It’s hard to get upset about being bumped when you know the circumstances.  We are just thankful that Kate is well enough to be bumped.

She was handling the delay OK (considering she was probably starving) 

They finally took her back around 11:30 after giving her some loopy juice, Mike walked her back to the Cath Lab.  Once she was settled . Mike and I grabbed a bite to eat and went back to see her at  around 2pm.  Katy was very agitated and was having a difficult time coming out of the anesthesia.   Which was difficult since she needed to lay flat for 5 HOURS.  As a result of her being upset she kept lifting and thrashing her leg, and complaining that her incision was hurting (my boo-boo is hurting) she had disturbed the clot and was bleeding.  I came back from the bathroom as the nurse was calling for the fellow and for anesthesia.  There was a lot of blood (probably looked like more than it really was) They gave her more meds to relax her and they were able to stop the bleeding by applying pressure for about 30 minutes.  After that episode, amazingly Katy was able to lay flat and watch Disney movies for 5 HOURS.  I still can’t believe it.

She then needed to have a chest x ray and then we were released at 9:15pm.

It’s hard to believe that we are quickly approaching the 1 year mark since being listed. 

Thanks for your continued prayers and support.

 

Prayers for Sweet Sweet Harrison.

The CHD world was rocked to it’s core today, as the news spread that yet another little heart warrior had earned his wings, a too young of an age.

I imagine that he is happy and his heart is healed as he plays at the playground in the sky.

I worry for his parents. I pray that they have a strong support system to help them pick up the pieces and carry on. Harrison, is not here… but he is and always will be in their hearts.

I am sad today so very sad… at times the tears have come down so hard. I am grieving a little boy who until his passing I had never even heard of. I’m mad about that… I wish I “knew” him while he was a live. I wish I had followed his mom’s care page and prayed for him, as I do all our heart “friends”

I know that there are lots of different outcomes as we write our heart stories. I usually can find comfort from the babes that a triumphant and rejoice with their families, and it gives me the strength to face another day.

Then a story like sweet Harrison’s comes a long and shakes me to my core. I let my mind go to that place that is always there and that I keep buried with memories of chalk and ice cream. Praying with all my might that my girls story ends with a Happily Ever After. Because that is what I need and want so desperately for my sweet baby girl. I want exactly what I know Harrison’s mama wanted for her beautiful little boy…and I am ANGRY that she didn’t get that.

All kids are special! All kids are a miracle…. but there is something about these heart babes… they have a twinkle in their eyes and smile that will melt your very own heart. They don’t give up.,.. they fight for each and everyday they have here on earth.

I was so oblivious to this before I had Kate. I am angry that I was so oblivious….and I am angry that I no longer have that ability.

Please as you say your prayers tonight say an extra for Harrison and his family.

Who knew Library Story Hour would be so hard…

for this mama!

Wakefield has an AWESOME Story Hour for babes to 5 year olds.

I decided to take advantage of it, Patrick on Tuesdays and Katy on Fridays.

Seeing Katy with a group of her peers I realized how different my girl is.

Her special heart make her small…so small for her age, her doctor doesn’t even give us the growth charts anymore since she isn’t even on them.

She has the ambition of a 30 pound 3 year old but the gross motor skills of a 20 pound 12 months old.

Breaks my heart… actually have shed tears.

Thankfully, she is oblivious to the differences for now.

Tomorrow Katy has her first ballet/tap class. I’m so excited, and a bit nervous for the reasons mentioned above.

I know one way or another my girl is going to ROCK it out!!

243 Days

243 days since Katy was listed for a new heart.

243 days of worry.

243 days of uncertainty.

243 days of praying.

243 days of smiles.

243 days of tears.

243 days of jumping EVERYTIME the phone rings.

243 days of questioning if this is really needed.

243 days of accepting that this needs to happen.

243 days of learning to love our new normal.

243 days of Why us?

243 days to learn our new normal?

243 days embracing the journey.

243 days of milestones passed .

243 days of accepting our reality.

243 days of planning for the unknown.

243 days of hoping for a miracle

243 days of hope

243 days of being thankful that we have been able to wait this long at home.

243 days of sadness

243 days of happiness

243 of anger

243 of laughter

243 days of loving our girl.

Katy was listed for a new heart 8 months ago. On June 29th it was decided that the best course of treatment for our sweet Kate and her special heart would be a new one. It was speculated that she would have her new heart within 4-6 months, although the average wait time for her age and status is 6-12 months. We thought were told she would have her new healthy heart by Christmas. We thought by this time, Katy and her new heart would be living the new chapter in our lives.

We never guessed she would be thriving and living life at home with her special heart.

I am so thankful for this borrowed time. Since this is the life and heart I know. For the most part I know what we are up against.

I am afraid of what a new heart means for Katy.

New fears… handing my baby girl over to the surgeons to crack her chest open, place her on bypass, hold her little heart(s) in his capable hands, pray that her new heart starts beating right when its supposed to, seeing my darling daughter on a ventilator,again (the picture of her on that at 3 weeks old still haunts my memory) praying she recovers fully, and without setbacks, caring for her chest wounds, new meds, and of course our biggest fear REJECTION!

I don’t know when her new heart will come. No one does. I pray it comes soon. I pray that Katy is able to continue to wait at home with us.

I don’t know who this girl is…

But, I love it!

Katy has been eating up a storm! I mean my goodness… her appetite is back and in full force. Mike and I couldn’t be happier. We both keep saying to each other “Look at her eat!”

*****************************************************************************************Apparently doing the above is the new blogging trend for switching topics…

******************************************************************************************Katy’s hair is getting so long…finally!!!

*****************************************************************************************

I love that Katy & Patrick LOVE each other. I have never met two siblings that get along as well as K & P. They are so loving, caring and kind to one another. Makes me one proud and happy mama!

*****************************************************************************************Introducing the Next American IDOL… (Please read in your best Ryan Seacrest voice)

They are usually in bed before American Idol.

Tonight we got home late, and they were playing nicely so they were up when it came on.

Patrick ran to get the microphones…then they both proceeded to sing, and jam out along with the American Idol contestants.

Look out America… I see a new generation of Donnie & Marie Osmond

Kids Say the Funniest Things

Katy is really funny… she has a sense of humor and “gets” things that would go over the heads of most 3 year olds. I love it! I also have to be really careful of what I say around her!

While at the doctor’s the other day. Our nurse Elizabeth was talking to Kate and asked her where she got her outfit, and Katy matter of factly replied”Target” If you know Kate you know her favorite store is Target! Elizabeth said. “Wow, Katy you really love Target, is that your favorite store?” Kate: “Yup, it’s my favorite store!” Elizabeth then asked: “What’s Patrick’s favorite store” Katy then replied: “ Home Depot!”

We all burst out laughing… I have no idea why she said it. It she said it in a tone that was like…Duh! Obviously it’s Home Depot!

Now that I write it out, I have no idea why we all thought it was so funny! I guess it was because it was unexpected…clearly the gender roles are already well defined for Miss Kate!

Katy Girl Update 3-7-11

Katy woke up this morning and looked the best she has in weeks. She had rosy cheeks, she was running around the house! Didn’t appear to be a child that was headed in for a full work up to check for congestive heart failure. She looked FANTASTIC! I actually felt bad that we even called since I wouldn’t have called on Friday if she was looking like this… and I might have actually gotten some sleep! Not complaining… actually we couldn’t be happier. We both decided we should go in and just get a baseline.

Kate was once again reminding us that she is a ROCKSTAR! She was very brave for all her tests. Blood work, X Ray, and the dreaded ECHO! She was amazing!

So what’s going on with Katy Girl?

On appearance we can all agree she looked fantastic.

Dr. Blume was very happy to see her looking so well. Her blood work is not back yet. Her X ray showed some fluid in her lungs, but not enough to be overly concerning.

Kate was a Rockstar through her entire echo…

Her echo showed no change. So it was basically decided that Katy must have had a bug or something and she worked through it. We will continue to supplement with tube feeds and hopefully we can continue to wait for a new heart from the comfort of our home.

Thank you for all your prayers and kind words over the past couple days. They mean the world to us, and clearly are working!

We love you!

Love,

Amiee, Mike, Katy & Patrick!

Stream of Consciousness

I mentioned back here that we were noticing some subtle changes in Katy. For the past two weeks or so we have noticed Katy becoming increasingly more tired and cranky. When the changes are subtle it is so hard to know if it is heart related or just 3 year old related. To be cautious and to make sure that we weren’t unknowingly ignoring a sign of congestive heart failure, we called the team explained that Katy was requesting naps, ( where she had most recently just starting to get to the point of not needing a nap) more cuddle time on the couch and just a bit more cranky and demanding.

The team heard us, and agreed that it could be heart it could be a 3 year old. Lets wait and see. Ahh… my favorite response, wait and see, right up there with a “it’s a virus” diagnosis. They both mean there is NOTHING I can do… lets see were it goes!

So we went about our life… Mike and I had our first visit with the trainers at the YMCA, I started back to classes… just a few more sessions to go. We painted, and shopped, had bath time and folded, LOTS AND LOTS of LAUNDRY! ( I swear it multiplies by the time it comes back up from the laundry room. )I am sad to say that as much as I try… I can’t seem to get the laundry ( that is all folded and separated by family member) into the DRAWERS!!! Anyone else have that problem?!

OK. Back to Katy…

We did all that knowing and silently acknowledging to each other, that Kate wasn’t right and wondered what was going on, praying she would snap out of it and we would continue to wait for a new heart from the comfort of our home. ( We still might be doing that… We don’t know anything different as of right now)

So yesterday, we realized that in addition to Katy being lethargic, and cranky she had really no appetite and ZERO interest in eating. Still drinking and peeing ( which is a good thing) but, really ate NOTHING yesterday. That symptom alone would be enough to scare us, add that with the whole cranky tiredness we have going on and there really is no denying that this is more likely heart related… and not just a tired 3 year old.

So for the second time since we had the G tube placed back in August, I was happy to have it last night. With Kate refusing to eat we can be sure to know she is getting X amount of calories and vitamins, through her tube feeds. I would much prefer for her to eat her calories, but if she won’t then I know we can maintain her with feeds. For Kate to lose what little weight she has would be devastating.

So we called the team this morning and of course they agreed that the no eating was a concern and it was time for a full work up. So Monday we are headed in for blood work, EKG, Chest X-ray and an Echo. Hopefully, they all come back normal, or maybe her meds just need to be tweaked.

I’m Working On

( Blog Topic from Ali Edwards)

I’m working on organizing prints and ordering more prints in an effort to get scrapbooking and current on our family albums. Mike is helping with this process, and he so kindly pointed out to me, just how far behind I am. Which further validates my decision to do Katy & Patrick’s yearly albums digitally.

I’m working on making our house more like a home. We moved four mouths ago, and although the space is functional, it needs some reorganization and decorating. First room on the agenda is the kids bedroom, I want it to be a functional, fun & welcoming space.

I’m working on a new knitting project, after my crochet fiasco ( I just can’t get the hang of it) I casted on a cute knit sundress for Kate. It’s a bit out of my comfort zone, but definitely something I can handle.

I’m working on fundraising for the NSTAR walk for Children’s Hospital Boston! I am so very proud of everyone that has joined our team and is raising money for the hospital that has and continues to save my daughter’s life. I can’t wait to walk with all of you on June 12th.

I’m working on typing all of our favorite recipes. I HATE the mix matched recipes, some printed, some handwritten, some stained, assorted sizes. Looking to have them all neat and orderly, and I may even print them and put them in a BINDER!!! Don’t hold me to it.

I’m working on trying not to think about the fact that Kate has been on the transplant list for 7 MONTHS. I am trying to not watch the calendar pass us by, and all the dates that I in my head and said she would have a new healthy heart by, and this part of our story would be behind us. I know in my heart that the perfect heart for Kate will come when it is most needed, and I’m working on making peace with that.

Children’s NSTAR walk

How can we ever give back to the hospital that continues to save our daughter's life. We try and donate whenever we can, toiletries kits for the parents on 8 EAST, cookies at Christmas for the staff on 8 South, in that capacity we are only able to reach a handful of people.

Alone, we can't make a difference, but together I think we can. Together with 5000 other thankful people we can help raise over a MILLION dollars to give back to the hospital that has given us, and our sweet Katy Girl so much.

It is my hope, that you never need to know what a wonderful place Children's Hospital is. I know that before I learned of Katy's heart, I never knew just how lucky I was to live 15 minutes from one of the best, if not THE best Children's Hospital in the world. So together with our family and friends we hope to ROCK the WALK in honor of our ROCKSTAR Katy. Will you join us?!

To join Katy's Rockstars please go to: NSTAR WALK Sign Up sign up under Katy's Rockstars.

Can't walk but would like to help us give back, there are several ways to donate. You can donate directly at:Donate to NSTARs Katy's Rockstars Team, contact me to send a check, or use credit card/PayPal ChipIn!

If you have already joined our team or donated. THANK YOU!!! from the bottom of our hearts. THANK YOU for continuing to support our family as we embrace our journey. We love you and could not do it with our all of the ROCKSTARS that surround us.

Go RED

What's the #1 killer of women?

Heart Disease. About 8.6 million women world wide die each year due to heart disease. If that doesn't seem striking to you here's another statistic. 267,000 women die each year from heart attacks, just heart attacks, no other kind of heart disease, these 267,000 women are SIX times as many than those who die from Breast Cancer each year.

I meant to post this yesterday, to remind everyone.  Sorry…sometimes life gets in the way. 

Just wanted to thank of you who wore red today! We really appreciate it.  We hear so much about cancer and most often it is hard to mistake those bald heads.....but remember that Heart Defects are the number one killer of children...and heart disease is the number one killer of women. You cannot see their broken hearts underneath their clothing.

DISCLAIMMER: I try not to be all CHD (Congenial Heart Defect Awareness) All the time on here.  But, obviously its very near and dear to our hearts.  I plan to use this month to use this blog and spread some awareness about a very deadly, and very UNDERFUNDED Disease.

 

The Deep Dark Post

I am so frightened.  Sometimes I can’t believe this is my life.  Sometimes, the overwhelmingness of it all makes it hard to breathe.  I feel like someone is sitting on my chest.  I wonder how we will ever get through this.  I wonder if we ever will.  I try so very hard to put on a brave face, and smile and enjoy this life and each and every day because I know its what I am supposed to do or expected to do.  When really all I want to do is cry, yell, scream.  I am angry, I am angry that this happening to me, to Mike , to Patrick and  most  of all I am angry that this is happening to my sweet sweet baby girl.

I don’t know how to express these next feelings, other than  Mike I feel very alone.  I feel like no one else understands or wants to understand what our life is.  Not to say we haven’t been shown some amazing support .  Because we have, and were are forever thankful for that.  I mean more like there is a disconnect.  As I said I don’t know how to explain it.  It’s just lonely.  Which isn’t anyone’s fault if anything its my fault, I have pulled a way a bit recently and hope to face the world again soon!

Mike and I have had to make sacrifices because of the hand we have been dealt.  Those sacrifices come in various forms.  We have sacrificed friends, and sadly some family because they just didn’t get it and just couldn’t understand where we are and what we are facing each and everyday.  The old saying holds true, when tragedy hits, ( I hate to say tragedy, but I guess when you are faced with the unimaginable) you really do learn who your friends are.  It has been a huge awakening to us.  People who we thought would be there for us, surprisingly weren’t.  I was enlighten to learn  just how truly selfish some people are, and you know what we are better for it.  A LOT of our time is filled up with doctors appointments and such, our time is valuable and I would much rather be spending it with those that truly love us, so that is what we do.

Sometimes like tonight, or should I say this morning  since it is 3AM and even though I should be sound asleep (sadly, I don’t think Ambien is working any longer) I wonder how we will get through this, and I find myself willing the phone to ring, with Transplant on the other end, telling us they found the perfect heart for our princess, since the heart I gave her, the heart that grew inside me was not perfect and has failed my girl, has failed us all.

And even though the thought of transplant and all its associated risks scares me, the uncertainty of when this heart she has is going to stop working scares me more.   So once again, I am forced with not choosing the best most wonderful option, but the lesser of the evil. 

But, I know tomorrow will be filled with laughter, Mickey Mouse Club House,  lipstick, and potty dances!

I know that 95% of my day will be filled with normal happy mommy joys!   Until, its time for meds, or I catch a glimpse of her G tube and I am reminded that nothing about this life is normal.

Potty Training Take 2

You might remember back in August when we attempted to potty train Katy.  It turned out to be a bust, at the time I thought it might be her high doses of multiple diuretics, when now I realize it was more likely that she just wasn’t ready. 

Last week while shopping at Target, Katy’s favorite store, (mine too) we were shopping for tights and Kate spotted Minnie Mouse underwear that she just had to have.  I explained to her that once she was ready to use the potty we would get them.

The following day, she announced she was really really ready to use the potty and she wanted the Minnie Mouse underwear, we were out running errands and Target was not on the list.  She was persistent, and I decided that if she was ready it was worth the trip to Target.  We bought the underwear and some Pull Ups and talked about being a big girl and using the potty and Pull Ups only for bed.  She said she was ready, the real question was I?  I bought three packs of underwear, 21 pairs.  I expected to be cleaning up a lot of pee.  Today is Day 5 and we haven’t used our entire supply of undies yet!!!   She has peed more on the potty than she has off… although today was rough, she had 3 accidents in 2 hours.  We were celebrating Patrick’s birthday with our playgroup and clearly using the potty was not a priority.  I am happy to report once everyone left she went back to using the potty!  Needless to say Mike and I are very proud of our little and we are all doing the Potty Dance!  

My only advise to mom’s out there trying to potty train…is that they will train when they are ready.  Simple, but very very true.  Also, if you try it and it doesn’t work don’t be afraid to put the underwear away and try again in a few months. 

Stream of Consciousness

Yesterday I started back to my 10 hour school day! Oh, MY!

It’s a long day, but its nice to be with friends, and feeling knowledge flow in to my brain, discussing sometimes debating with others about beliefs and feelings on various subjects, sometimes hot button issues.  It’s nice to have a “safe” environment to defend your beliefs and opinions.  I know the kids have a great day with daddy.  Yesterday, I left them all a  love note, when I got home Katy asked me about the love list I left with red marker.  I love that she is old enough to get things like that.

We have been busy running errands and preparing for Patrick’s SECOND birthday! Yup, he is going to be 2! My goodness!   2 years have flown by.  He is very excited (as is Katy) for his monkey party!   Need to plan the menu and shop for that this week, and I still have favors and his banner to make.  More on that later

Katy’s G tube site is looking FANTASTIC… I hate to even write that for fear of jinxing us.

Mike and I  ( really just Mike, since I have not been feeling 100% for the past couple days) has been working hard on our house to simplify.  Which makes my heart happy and clears my mind.  It also, is a reminder that as long as we have a house full of babies… it’s never going to perfect, and you know what I am OK with that.  As long as the house is clean a little clutter won’t kill us… I am just trying to keep the clutter to  a minimum.  Basically, I want our home completely livable and comfortable for Patrick and whoever comes to care for him, when we get “THE CALL” which is why I think it has been so high on my to do list.

Speaking of “THE CALL” we are trying to prepare as best we can, I mean its nearly impossible to plan for something that you don’t know when its going to happen.  But, we have a semi plan in place and I am feeling comfortable with that.

Sorry I don’t have any new pictures to share… all has been kind of boring around here.  I should have some fun snow pictures by the end of the week! It sounds like we are getting hit hard!! Super excited for that, but it is making my birthday errand schedule a bit cramped. 

New Years Resolutions

Do you make them?! I always have and they have always included big, long overwhelming lists of how I was going to change myself into something I am never going to be.  Skinny, more organized, neat, perfect wife and mother.  I am sure lots of people make the same kind of resolutions and if you ask them by March how they are doing on those resolutions, they can’t even remember making them. 

I know a lot of people who have just decided to give up the tradition of making resolutions.  For me, I like traditions, I like to follow the trend, I like to celebrate.  For instance… we have heart pancakes on Valentine’s Day, Green Milk in March, Dye Easter Eggs… no one eats, Love on mom in May complete with breakfast (or at least coffee in bed) followed by a day loving on me! June…Tell/Show Daddy what a Rock Star he is to our family, July, Fireworks and seafood at Browns, August lots and lots of beach days and cold lemonade, September, New Shoes, and new school  home office supplies, soon to be school supplies. October, Pumpkin Picking and Trick Or Treating. November… Stuffing and reminding everyone what we are thankful for.  December…. baking cookies, singing Christmas Carols, CHRISMAS CARDS! and of course January …New Years Resolutions.

So for me my New Year’s Resolution is to:

sim·pli·fy

verb \ˈsim-plə-ˌfī\

sim·pli·fiedsim·pli·fy·ing

Definition of SIMPLIFY

transitive verb

: to make simple or simpler: as a : to reduce to basic essentials b : to diminish in scope or complexity : streamline <was urged to simplify management procedures> c : to make more intelligible : clarify

This life is precious, my days are busy and I have a lot I want to accomplish.  My goal this year is to prioritize and take time to enjoy my husband, Kathryn and Patrick. 

I want our home to be neat and tidy and comfortable…. we deserve it.  Our home should be our haven not our shrine of things.

Meals should be easy and healthy so that we eat more of them at home.

There are many ways I can simplify.  I am looking forward to this clean slate that for some reason the New Year just pops in my lap.

2010 in Review

Oh, 2010 I am so happy to pack you up and KICK you out the door!

2010 wasn’t all horrible, it actually had some pretty awesome moments. I grew as a person, wife, mother, friend and daughter. I was challenged and faced with obstacles I NEVER thought I would face. I rewrote my hopes and dreams. I prioritized what was really important, and what was not. I learned that I am a fighter and I can and will do whatever it takes. I learned to rely on others and accept help. My faith in humanity was renewed. I learned who my true friends are and those who were not. ( I need another word for learned)

I met some amazing people, some of who I never physically met, but who have prayed for us and got me through some dark times. I reconnected with some family, that have proven to be a huge source of comfort and support. I loved my family more than I thought was humanly possible. I stopped to soak in the moment…be it bath time, story time, dinner, or late night cuddles with my husband. I ‘ve learned that sometimes I just need a day to cry and be off, and that its OK for those days to happen, but not to let them consume me.

So really I have a love/hate relationship with 2010. I think 2011 is going to prove to be just as trying, in a whole new way. Regardless, 2010 has given me the knowledge and strength to take whatever 2011 has in store.

January

Patrick turned one!

February

We took Katy to Disney on Ice on Valentine’s Day

Mike and I celebrated 8 years of marriage

March

Katy started drop off play group with early intervention

We visited our cousins in NH for St. Patrick’s Day

Patrick had his 1st hair cut

April

Katy fell at the playground and ended up with 1 staple in her head.

May

We celebrated Logan’s Birthday Party

Another wonderful Mother’s Day

Mike surprised me with a trip to visit my Auntie Cheryl

Patrick and I headed to North Carolina

Lots of Bbq’s for Memorial Day

June

6/1/10 Our world was rocked to it’s core. Kathryn has a Cardiac Cath and MRI on the 1st and the results showed that her special heart was failing and her care was passed on to the Transplant team at Boston Children’s Hospital.

Mike celebrated his 52nd birthday with family and lobsters!

Katy fell and needed stitches.

July

Patrick said Katy!!!

Katy had an NG Feeding Tube placed

Katy was listed for a heart, status 1b on the 29th of July

August

Keys for Katy benefit at The Shannon Door was a great success! Still so very Thankful!

Make A Wish came out to grant Katy’s wish to go to Disney!

Back to NH to visit with Cousins and celebrate our newest cousin Nia’s Christening.

We celebrated Sierra’s 1st Birthday

Katy had G Tube Surgery

Patrick fell and ended up needing 5 staples in his head.

1 month on transplant list

September

Katy’s story is airing on local radio stations and in many newspapers

Amiee celebrated her 30th BIRTHDAY

Katy’s Make A Wish trip to Walt Disney Word

2 months on transplant list

October

WBZ 4 did a story on Katy

Our cousins hosted another benefit for Kate! Great to have so much support and love!

Katy gets G Tube infection

We lost one of our favorite aunties! RIP Auntie Cheryl

Katy and Patrick were Mickey and Minnie for Halloween!

3 months on transplant list

November

Quite month

Thanksgiving celebrated with family and friends!

4 months on transplant list

December

Katy had G tube surgery again… peg to Mic Key NO ADDMISSION

Katy turned 3 and had just as many birthday celebrations!

Katy’s tube infected AGAIN!

Christmas was AWESOME!

Blizzard of 2010 was spent at Auntie Krissie’s complete with sleepover!

Disney Princess’ on Ice

5 months on transplant list.

Our year in photos:

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From our family to yours I hope that the new year makes all your dreams come true ( or a few anyway)

Much Love,

Amiee, Mike, Katy & Patrick