She did receive this great balloon arrangement this morning from her Nanny and Granddaddy and was so excited I had to remind her not to jump around.  Crazy girl.  Just don’t want her to hurt herself of bust open something.

We said good bye to Grandma Judy this morning and now we are taking a few days to relax and recover before school on Monday.

We all want to say THANK YOU!!!

We received so many wonderful messages, prayers and thoughts during this.  It makes such a huge difference to know you aren’t alone in anything and that we have so many people out there cheering for Ellie is awe inspiring.  THANK YOU just doesn’t truly seem like enough.

Since Ellie couldn’t eat or drink we made a pact that none of us would.  We made it there and began the process of getting her settled and sleepy for the MRI and then the Cath.  She seemed fine and was laughing and joking with us until after she took the medicine to make her sleepy.  They give children a drink that makes them very sleepy and makes them loose their inhibitions.  It also contains a bit of amnesia so they only remember being with you and then waking up.  They don’t remember the gas mask or even really falling asleep.  That’s a really good thing.

I was actually ok until she started to cry (once the medicine started to work) and she keep saying “I’m so scared”.  That was when I actually got a upset.  It’s hard sending your little one into any type of surgery.  You put your faith in what you know are fabulous doctors and hope for the best.

We said goodbye around 8:15 when she feel asleep and was about to go to the MRI lab and had until 9:00 and the first update to figure out what to do.  We ate and drank coffee and tried to make time pass faster.

9:00 update still in the MRI lab

10:00 update about to go to the Cath lab

11:00 update they decided to actually try to dilate (balloon) her      mitral valve and they would be doing it soon.

12:00 update she would be out soon

Dr. Marx (Ellie’s Caradologist) was in the Cath lab and one of the ones to make the decision to dilate. He came out and explained that it seemed to go well. There was a slight tear but that it seemed to be ok and the pressure across the valve was so much better than before.  He also explained- completely unrelated to the valve- that there was a slight electrical problem.  The random elevated heart beat she has been having is actually causing her left side atrium (top part) of her heart to enlarge.  They are going to have a look at her EKGs and see how often her heart rate is elevating and decide what will be done with that later.  It didn’t seem to be a major problem or one they wanted to address right now.

The best sight of the day was walking into the room and seeing her smiling face as she ate the purple ice pop I had promised she would get.

She showed off her ET finger (the electrical device that monitors her O2 saturations).  Ellie also proudly informed us “I’m fine, I’m fine!” and that “it only took a minute and I was waking up.”  I was so glad it felt that way to her cause it sure didn’t to her father and I.

We stayed in the cath lab for a few hours and then she was transfered to the heart ward for the night.  Since they dilated the valve they wanted to observe her over night.  She was sleepy – good thing because she wasn’t allowed to move her right leg for 7 hours and keeping her still on a normal day is near impossible (which I relise now she is home).

I couldn’t resist getting her the largest most obnoixious balloon from the gift store.

Ellie was a bit sick to her stomach that night but that is normal and didn’t really get to enjoy her dinner which is a shame considering the way they deliver the food on most of the floors of the hospital.

This train carries the food from the kitchens.  It runs by itself, rings it’s bell to let you know it is coming and if you walk in front of it too closely it will automatically stop.  It’s really very cool.

Ken went back to the Yawkey Family Inn that night and Ellie and I had a slumber party in her room.

Ellie’s last cardiac cath took place three years ago- two years after her open heart operation.  She was growing and doing so well at that time they decided to just let her keep doing what she was doing for awhile.  We were told there might come a time when something might need to be done with her mitral valve because it was a bit small but then they liked what they saw right then.  So the plan three years ago was let Ellie grow stronger and bigger and see what happened.

The last six months there have been a few little things happening.  Ellie is still growing taller, putting on weight and most of all pink as can be, but there have been a few little things that have come up so her doctors sent out two different heart holster monitors to try to track her heart beats. They both came back normal.  Yet while we were in for her last check up in November her doctor saw and heard a few things that weren’t normal for Ellie.

So they have decided, since it has been three years since her last cath-  that they want to do a MRI and a cardiac cath to get more information on what’s going on and to see if the time has come to maybe go fix the valve.

That means we are heading to Boston on January 30th for the prep appointments and Jan 31st they will put her to sleep do a MRI and the cath and hopefully if all goes well we will be heading home that night late armed with more information and maybe even the beginning of a game plan.

Now back to explaining to a 6 1/2 year old.  Since we have been making plans with Ellie’s school and a plan for Sadie so we can focus on Ellie and not have an almost 3 year old running around the hospital for two days, we felt we needed to let Ellie know what was going to happen so she didn’t hear it from someone else.

How do you explain it.  She doesn’t remember anything from her open heart when she was a little over one and really doesn’t remember her last cath when she was 3, so we needed to explain to her what was going to happen.  We have always told her the truth about going to the doctors.  If it would hurt a little or not so she would always know when we said it wouldn’t hurt we meant it.  Telling her the truth always has made these things less scary.  We told her the basics and that was enough to upset her a little.  We heard “I”m a little freaked out”, and “I don’t want to” even a “are you worried Mom?”  I told her I wasn’t – cause really I’m not that worried about the actual cath, I’m worried about what it will show but I would NEVER tell her that- and that her doctors are really good and she has nothing to worry about.  I said we could write all of her questions down and ask the doctor when we meet with him the day before the actual cath.

We will keep everyone updated on what happens and what they find.  Thank you all so much for your support already, yours prayers and thoughts really mean so much to all of us.

Ellie finally perked up when we told her she will probably get to have a ice pop – or maybe two- after she wakes up.  Who knew that was all she needed to make it sound ok.  An ice pop.

And guess who else wanted in on the action:

Explore the flowers in our yard

Do a little crafting (warning be-dazzler is not as easy as it might appear)

Celebrate 7-11's Birthday on 7-11.

Beach-time

A little on screen time:

http://www.youtube.com/watch?v=I8SHYn4QuD8

That’s what we have doing so far.

Ellie decided she wanted a day at the American Girl Doll Store in NYC for her birthday.  When informed she could have that or a Birthday party she still stuck to her original plan so it was booked.  I mentioned it to my Mom and said it would be really cool if she came up for the day and before I knew it, it all came together.

Ellie and I took the train to Grand Central and Mom flew into LaGuardia and took the bus to Grand Central.  Ellie was convinced it was Amazing Race style and keep asking who was going to win the prize.  Needless to say even though she was with me she apparently was on both teams so she was going to win either way – and I think we all won just being able to be together for the day- but my Mom made it there first but only by a few mins.

We took a cab up to the store (Mom and Ellie’s first NYC cab ride).

Then the real fun began.  A doll was picked and outfitted (Ellie got money from almost everyone for her Birthday to spend so she suited her dolly up).  Allie – what Ellie named her dolly – made a trip to the hair salon and Ellie even had a picture made with her that became a magazine cover.  All of that before we even made it to lunch, whew.

Lunch was awesome!  They have the coolest room and because I told them it was Ellie’s Birthday she had a crown waiting at the table for both her and her Allie.   Allie even had her own seat at the table with her own plate and cup.  We ate very well and a Birthday cake arrived at the table complete with candles and a rousing round of Happy Birthday.  It was wonderful and Ellie was so surprised.  I know she felt special.  Heck I felt special and I wasn’t even the Birthday girl.

Since we still had time we decided to walk up to the Plaza Hotel and check out Eloise’s store there.  It was very cool.  They had a whole room where you could watch Eloise movies and a stage set up to play dress up.  It was fun to explore and of course the Plaza is just a site to be seen no matter what.

We made it back home in time for pizza and Ellie’s second Birthday cake of the day – see previous post for more about that.

It was crazy but wonderful.  Such a cool experience and I think Mom and I had just as much fun as Ellie.  I’m so glad I have both of them and that Ellie decided this is how she wanted to spend her 6th Birthday.

I took a deep breathe and tucked into the task.  After all, we were the only ones that would see it so it really didn’t matter, did it?  I was a bit scared of the whole tower thing so I made Ken do it.  I gave him a tray of rice crispy treats and a dowel rod and said go to it.  I proceeded to make the vanilla cake (Ellie doesn’t like chocolate) using a Magnolia Bakery recipe I found - http://www.food.com/recipe/magnolia-bakerys-vanilla-birthday-cake-and-frosting-139518.  The only complaint online was that it tended to taste like a sugar cookie. No complaint here, my family loves sugar cookies.  I used my own classic butter cream icing recipe.

Ellie cut out and placed all the flowers and I set her task of building the boulders (something to keep her busy since she was home on the day I put it all together).

This what the construction and consumption looked like:

I have to say there were no complaints around here, in fact very little talking at all, just eating.

Kindergarten is so important.  It is your first real experience with school and life and your teacher can shape the way you see and feel about school for years.  We are all so lucky Ellie had a wonderful teacher.  Just the right amount of love and caring and toughness.  Ellie loved her and school this year.  Thank you Ms. Banks for making the year such a success!

She has had field day and I must say it was way more awesome than any field day I had ever seen.  Ms. B the gym teacher is just amazing.  Full of energy and gets the kids so pumped up for it.  Each class has a name and a costume and I’m proud to say Ellie’s class (Banks Bumble Bees) won awards for most spirit and best costume.  I was asked to make the antenna and just have to sing the praises of black duck tape (I just LOVE it).

Ms. Banks Bumblebees

Buzz Buzz

Look at them bobbing

This week there was a field trip to a local beach.  Yup, seventy-five 5 and 6 year olds at the beach but not allowed to go in the water past there ankles.  What was I thinking when I volenteered for that one.  It actually turned out great.  So much fun and no one fell in or got too wet.

Today a singing performance at the schools town meeting.  They are singing Jack Johnson’s the sharing song – http://youtu.be/bfSpsnLyo18.  Ellie of course wanted to wear a dress cause she was going to be on stage.  I just love her.

Meanwhile Sadie and I are enjoying our last full Thursday, just the two of us, before Ellie is out for the Summer  (next Thursday is a half day).