Pre-op testing day .... So far

*** Picture above is the house that we are staying in.

Well last night went pretty well – the room has a full sized bed which when I saw it, I got that same feeling that I get when a hostess at a restaurant is seating us and brings us to a booth that I know is going to be a challenge for me to fit in -- the thought of sleeping in that for a guy my size with a pregnant wife felt like we'd be facing an inevitable night long game of Tetrus.  That said, by the time it was bedtime, Gracie was so comfy, that we didn't bother putting up the Pack-N-Play they put in the room for us. The girls got the bed and I slept in the fold out chair – It actually wasn't too bad and I knew that it was totally my turn since from Wednesday on Carrie will be sleeping in either the little window cubby in the ICU or the infamous bed of nails (AKA fold out chair) in the step down unit.  She fussed a lot throughout the night, but in true Gracie fashion was in a great mood this morning.  The girls got ready and headed to the hospital very early which is a very nice ¾ mile walk away.  Their day will no doubt be spent in several waiting rooms as they go the through checklist of x-rays, tests, blood tests, etc to prepare for the big day tomorrow.  My job today is to stay in the room and try to get some work done.  I have to admit, sometimes the dad part in this heart baby thing can be difficult – as boring as it can be in the hospital, it's hard to be away from her.  I hate to say it's gotten easier -  I think repetition numbs you a bit in everything you do, but I remember after her first surgery a year ago, that feeling of having to leave the hospital and drive towards work – It sort of felt like when you were a kid and fell down or something and cried so hard that the world was spinning, etc.  The first time you do it, it's so hard to accept that the world hasn't stopped for everyone else like it has for you – everybody else is living their lives despite your's being turned upside down.  As the dad, I've had to put what we've had going on with Gracie to the side for several hours at a time to concentrate on work or to attempt to make life as normal as usual for Lylli.  It's been challenging at times, but we've managed to get this far and keep my job and Lylli is doing great  – I am glad that I am in a profession that I can work remotely sometimes.  This gives me the freedom to be here and still be able to work a few days instead of taking all of this time away unpaid.  I still have to be away from Lylli for awhile, but am very excited to see her on Saturday.  

OK, so I better get back to work…   

Touched Down in Bean Town

My mom stayed in Lylli's bed last night because our flight was so early today, so Lylli slept in our bed with us -- My night was spent dodging elbows and kicks from midnight until just before 4 AM. I've got to say, I have never appreciated being repeatedly kicked in the back so much. We packed up all of the bags and medical equipment and made our way to the airport. I'll admit my first mile or two were spent wiping away tears because I know these hospital stays are tough on Lylli -- I had a really hard time leaving her today. This trip wasn't quite as smooth as the others have been for getting through security. It seems that I forgot that Carrie put a gallon Ziploc bag full of bottles of liquid medicine in my carry on laptop bag so after all my stuff was pulled off the track as it exited the xray machine, I turned back to look for Carrie to give her a shoulder shrug, and saw her and Gracie standing in a little glass walled cubical – Apparently I'm not the only one that failed to remember all the important details - Carrie forgot that she had an ipod in her back pocket that wasn't remembered until the agent found in the pat down after she went through the checklist of things that she removed to ensure that the metal detector did not go off (I'm sure it didn't help that she was carrying a baby with cords dangling out of the bottom of her outfit). The lady got a little chippy with me and sarcastically inquired about how I didn't know the 3/1/1 rule that has been in effect for over 8 years. I, of course, respectfully informed her that I wasn't trying to smuggle toothpaste or shaving gel, like the poor old guy that had to forfeit his freshly bought drug store treasures, but would have gladly removed my medically fragile daughter's medicine from my carry on if I would have remembered that my wife put them there. So after our pat downs, liquid vapor tests, and bomb dustings, we finally made our way to the gate. They refused to tell us how full the plane was so we were unsure if we were going to be able to get a row of seats to ourselves (insert big ass joke here – but really, it was more about the portable oxygen machine, oximeter, the baby – ok, you're right, it gets tight without all that stuff). Luckily they lowered the upgrade fees and when you consider checked bag fees, etc – it only came to around another $100 total for both of us - so since neither of us got the other a Christmas gift this year, we decided to upgrade to first class. Of course, after we boarded, we noticed that the plane had several empty rows that we could have had to ourselves – We're still a little skeptical that its less of a rule that they couldn't tell us how full the plane was and more of a way to get people to upgrade – oh well, we skipped breakfast at the airport had plenty of room for Gracie and the oxygen, and well, you get the idea! It felt so wrong to not take advantage of the free booze, but decided to pretend I was mature adult and opted for a cup of coffee and eventually a ginger ale.

Gracie had some rough patches where she was a little noisy, but the people around us either pretended we didn't exist or were pretty understanding and because of the tail winds, etc, today's flight was just over 2 hours landing us in Boston a little after 11 AM. We debated whether to try and maneuver the train system, but after looking over our inventory, and hearing that we would have had to take shuttle to one line, take one train so far, transfer to another train and then walk a few blocks after that, we elected to take a cab straight to the place we are staying. Luckily, they had our room ready early, so we checked in and took a walk around town (we walked in the opposite direction of the hospital since we'll see plenty of that side of town later in the week). We had lunch at a Chinese restaurant that a guy on the street recommended and hit Trader Joe's for a few groceries (and dark chocolate caramels). We took a short nap, then went downstairs and had a couple of sandwiches delivered. Before we ordered, Carrie met a woman that also has an infant daughter (9 months) named Gracie, with a heart condition and Ds. I gave them some space as they talked and listened occasionally from afar – I have got to say, I cannot be more proud of her. To hear her speak to others about our journey – it is so amazing to listen to all that she has learned to this point – between her career as a special ed teacher and everything she has learned in her short time as a heart mom, she is so in her element and I see how much she can relate to these moms and wants to reach out to them the way others have reached out to her. But of course, she does it in such an unassuming yet confident way – I could hear in the voice of the other mom how much she appreciated the conversation that they were having. We all know I am a lucky man, but I am so proud of and thankful that she is the one that I am going through all of this with. Anyway, Gracie is sleeping on the bed right now and we are both sitting in the dark – me on my laptop and Carrie surfing the web on her ipad. Tomorrow is pre-op testing to prepare for Wednesday.

If I survive the bites that I took of the rotten pumkin pie tonight as we were exiting the kitchen, I hope to update this blog more often this trip – so check back for updates – or of course, if you don't want, how does Carrie so kindly put it? "all of the extra words" – you could also check in at Gracie's Caringbridge site – http://www.caringbridge.org/visit/graciedelaney

Happy Holidays everyone -- If you could, please keep our baby Gracie in your prayers

Do 2012...

So as the year comes to an end I've been given a lot of thought to how the heck I will pull off my goals for  2012 – I feel the same about resolutions as fellow blogger and do lifer Scott Schultz – see

http://what-if-i-lived.blogspot.com/

That said – like so many things in the past several years, I haven't held myself accountable, so just like signing up for the 2011 Twin Cities Marathon and not following through with it, it's been nothing for me to say I was going to save the world, become an underwear model, filthy rich, etc, etc – on Jan 1^st – as well as take all kinds of pride in my resolution to fix everything and tell anyone who will listen about how this time I will do it.  The mind really is an amazing thing.  I sometimes wonder with all of the lies I've told to myself and others how I can continue to look people in the eyes, let alone myself in the mirror.   What did Einstein say is the definition of insanity again? – doing the same thing over and over and expecting different results.  Yeah, that about covers it – year after year (month after month, post after post) – I've talked a great game – essentially countless number of  "look at me, let's celebrate my victory before I've done 1 thing to earn it"  moments.  Well, there's nothing that I can do about the things I didn't follow through with in the past – the one thing that I can do is to alter my behavior.  So in the footsteps of Scotts Blog post above, someone who I hope to become friends with this year and run with a bit, I want to tell you some of the things that I hope to achieve this next year:

1.        I signed up and plan to get the year started by running the Polar Dash 5K on January 1^st  – Carrie and Gracie will still be in Boston, but I will be returning home with Lylli a few days before that day.  This is my starting point for the year – I will be running it (probably running/walking at this point) with my sister-in-law.  I have not run in some time and will be basically starting over, but am using this race to set the tone for the year.  2012 is the year where I follow through with my words

2.       I signed up and plan to run the Lucky 7K mid march.  At that point, I hope to be down a few pounds from the Polar Dash and also at a point where I can enjoy the run a little more.

3.       On Sept 14^th, I will be turning 40 years old – I found a marathon in Walker, MN the next day – I am going to do everything in my power to be ready for and finish this marathon.  Because I have been struggling with how I haven't followed through with things, I made a deal with myself – If I do all that needs to be done to get myself to a place where I can complete a marathon, I will have then proven to myself that I can commit to something bigger than myself and at that point will go back to school to get my masters degree.  Something I've wanted to do for awhile now but have afraid to start and not follow through like so many things in my life   

4.       A couple of other things that I'm thinking about doing is the Monster Dash, maybe Grandma's Half, the TCM full or 10 Mile – Also, the Do Life Boys have had to pull out of there 52 marathons in 52 weeks effort, but have promised to make many events around the nation in 2012 – I would really like to figure out a way to meetup at a marathon late in the year and run in their pace group.

2012 is going to be our year  – I need to make myself healthy so I can be here for a long time for my wife and three kids (yes, I said three – Carrie is due on May 30^th)

As for the underwear model comment – stay tuned – a quick word of warning, I've been thinking about using public embarrassment as a motivator and in true Ben Davis fashion ( www.bendoeslife.com ), been toying with the idea of posting a "before" pic of me standing in my boxers for everyone to see – haven't quite decided if I'll have the guts to do that yet – but just thought I would warn any of you that plan on following this blog in the future – I do plan to do a better job at using this as a tool to update my progress and help hold me accountable.    

I'm done half-assing this amazing life of mine!!!!

Preparing for Boston

Those of you that have found my blog from one of the Do Lifer site(s) are probably thinking a whole different thing when you read the theme of this post.  Unfortunately, in order for me to run the Boston marathon, I would need to drop about 4 hours on my marathon time and at least 100 lbs – more on that effort later, but first:

 

We are so very busy trying to get all of our ducks in a row (and celebrate some last minute pre-Christmas celebrations) before we leave for Boston early Monday morning.  I have to admit this trip is a hard one (I guess most of them have been at this point).  I know that the team at Children’s Hospital of  Boston is amazing and only looking to do what’s best for Gracie, but I can’t help but be scared that we are pushing our luck having her 4^th open heart surgery in just over a year.   Whenever she comes home after an extended stay in the hospital, it takes awhile for her to relax – She doesn’t sleep well at all  - it’s as if she stays on guard every night, just waiting for the next doctor or nurse to come in and try to draw blood or take an x-ray, etc.  These last couple of days have been great – she has been such a happy baby and has slept so much better.  It seems that she is finally just getting over her latest trip to Boston in November and here we sit, just a few days from going back - this time, not just for a small procedure to see how her heart is doing, but for another major open heart surgery.  I know kids are resilient, and all of this stuff happening so early on in her life is the best for her, but I can’t wait until our little girl gets to a point where she doesn’t have to have a major surgery every 3 months.  We have been so excited to see how well she has been doing and the thought of taking any steps back is very difficult.  We will be fortunate enough to be able to go to Lylli’s Christmas dance recital this coming Sunday afternoon, but unfortunately Gracie’s surgery, next Wednesday is on the same day as her Preschool Christmas recital.  It just breaks my heart to not be able to be there in the crowd for her.  I am crushed to know that she won’t find me in the crowd and tilt her head to the side and do that little bite the lip smirk as she stands up there with pride singing Christmas songs for her daddy.  Gracie, Carrie, and I are going to Boston on Monday – it is especially hard this time for me to leave Lylli behind – She means everything to me and the thought of her missing her mommy and daddy is hitting me especially hard today.  Fortunately, my amazing in-laws will be bringing Lylli out to be with us over Christmas.   We are moving from the Hospital family housing for a couple days when they arrive to stay in a hotel near the hospital.  On December 15^th, last year, I was praying that I could have my family together at home on Christmas day.  This year, being home isn’t important  -- I’m just praying that God blesses, once again, the hands of Gracie’s surgeon Dr Pedro del Nido and his team to fix Gracie’s heart . Sure, this Christmas will be spent in the hospital, dinner most likely prepared in the kitchenette in our hotel room, the important part is that we will be together.  

 

 

 

 

 

 

 

Santa

 

So I started a long rambling post filled with all of the heart stopping quotes we got from doctors over Gracie's life in an attempt to portray how wonderful this day is to my family, but decided that there is absolutely no need to bring up anything negative on such a wonderful day.  I'll admit I've secretly held in my head this day as the day that I would know that things are going to be alright. I started to attempt to put into works how much this little girl has brought to my life and realized that I can't say it any better than my wife did today on Gracie's Caring bridge site, so I thought I would share her words as well as a beautiful montage she put together for her birthday:

"One year ago, I wasn't sure what our future with Gracie would be. I wasn't sure if, in the future, today was going to be a happy day or a sad day. I am so excited and humbled and amazed and thrilled that today will forever be a happy day. Our Gracie is ONE today! It has been a ROLLERCOASTER of a year - as you all know. We have learned SO, SO much about heart defects, hospitals, support from others and celebrating what you have. We would never have learned these things without going through this journey. And we have met the most amazing people. People who are walking the same road we are walking have quickly gone from strangers to close friends. People from all over the country - some who we have never even met in person - have become an amazing support system. Strangers have come out of the woodwork to help people they have never even met, just because Gracie's story touched them. Doctors and nurses have worked tirelessly to take care of Gracie in her sickest moments and give us comfort when we were most scared. And, of course, our friends and familly have been there for us every step of the way. We could not ask for more than what we have this year. As Thanksgiving approaches, we are VERY aware of all that we have to be thankful for.


Happy Birthday, Gracie Jo! You are loved more than you will ever know!


Here is a video we put together for her first year..."

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She Takes the Cake!

I haven't posted for awhile - But promise to start up again in the near future -- Lot's to catch up on. Wanted to share this montage with you!

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A Heart Mother

Carrie and I spent last night at the Ronald McDonald house inside the Minneapolis Children's hospital.  Gracie is getting better every day and will most likely be coming back home in a day or two.  I feel like an old pro around that place at this point.  Carrie told me that she got to see some friends at the hospital today. Jennie is the mother of Micah, a little boy with Down syndrome who has also been no stranger to the hospital in his few short years.  I've only met him one time - at this year's Step Up for Down Syndrome walk, but at the point I met him, he was wore out and about to fall asleep -- he was definitely done for the day.  Every time Carrie meets up with them, she is so filled with optimism about Gracie's future.  She raves about this little guy and speaks about how seeing him reminds her of all of the potential that Gracie has.  I mentioned earlier that I felt like an old pro at the hospital these days, but I remember very vividly how when I was petrified to be there and Jennie, a stranger at that point, showed up at the hospital when Gracie was just days old with a basket full of goodies and things to read while we were there.  She is quite the advocate for her little guy and we hope to be for Gracie what she is for Micah.  October is Down syndrome month and she has vowed to blog every day this month.  I wanted to share a poem that she posted in her blog today -- I'll admit, I changed some of the he's to she's to relate closer to our story, but I really liked this poem - I can relate as Gracie's dad, but can only imagine how close this hits to home for Carrie:

A HEART MOTHER

One day my world came crashing down, I'll never be the same.

They told me that my child was sick. I thought, "Am I to blame?"

I don't think I can handle this. I am really not that strong.

It seemed my heart was breaking. I have loved her for so long.

I will not give up on this child. I will listen to your advice.

I will give my child any chance. No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube. My child must survive!

Will she need a lot of therapy? Will she gain the needed weight?

Please God, help me do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder...

How many parents would love that sound. Tomorrow I will be kinder.

As another Angel earns her wings, I run to my child's bed.

I watch her sleep for quite a while. I bend down and kiss her head.

I cry for the parents whose hearts have been broken. I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life and guide us through each day.

My mind says savor each moment she is here, but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "Will she be alright?", to watching her reach out her hands.

With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line, I look to them and smile.

You see, my child is loved so much. I would face ANY trial.

That scar I trace with my finger: it's the door to her beautiful heart.

God must have known how much I'd love here (just as He loved her from the start).

A heart mom is always a heart mom, now wise beyond her years.

For those who have angels in heaven, our hearts share in your tears.

Every day I will try and remember, I was chosen for her (and no other).

I will always embrace that beautiful day... When I became a "Heart Mother."

~ Author unknown

The Race

I know its been awhile since I've posted to this blog -- So much is going on these days and once again I find myself a bit overwhelmed and unsure where to start.  Gracie is back in the hospital with a virus that has made her miserable and was causing a valve in her heart to leak and have too much pressure.  She's recovering and will be fine and hopefully will be back home someday soon.  My training has taken a back seat -- I'll be honest, Its probably because I got down on myself for not being ready for the full Twin Cities Marathon.  My good freind Dave who was going to run it with me, followed through with his end of the bargain -- I am so proud of him, but find myself often pouting and questioning what it is inside of me that stops me from following through?  I hope to make a few blog entries soon and ramble about some of the things going on in this head of mine, but until then, a friend posted this video on his facebook site today -- its footage from a race that I actually have shared with others before.  Everytime I see this, it brings tears to my eyes -- I really see this as a metaphor (if that's the word I'm looking for) for Gracie's life -- this whole journey we've been on is tough and has had its setbacks, but in the end, I just know that little girl is going to excel.  I also hope some day that I can do the same -- despite the countless number of reasons that have kept me where I am physically over the recent years, I am still working (harder at times than others) towards my goal of running a marathon before I'm 40. 

The Hook

If you look closely in the middle of this picture, between the two closet doors, you’ll see “The Hook”.  I put this hook up in my bedroom a couple months ago so I see it in the morning when I wake and just before I go to sleep every night.  My wife cracks up laughing when she looks at it because I was nervous to not put it too low where someone could hit it –  OK, so I admit, the odds are pretty low that someone’s eye would ever get too close to it to have to worry about that.  That said, you’ll be happy to know, I put it high enough to assure that this could not happen anyway.  I’ve laid out strict rules for the hook – It’s never to be used for a bath towel or robe or anything else besides a medal that I get for finishing a marathon (although I may hang a ½ marathon medal on it if I do one, but only as a placeholder because at this point that in itself will take a lot of work for me to accomplish).  I haven’t told her yet, but I’m thinking about putting vinyl letters in the space between the closets that say “Do Life.” Wonder what she’ll think about that idea?  Regardless, I will hang a marathon finisher medal on this hook before I turn 40 in September of 2012!!!  

Thanks, I Needed That!!

I knew this was going to be difficult, but never imagine how tough it would be emotionally.  I had totally turned into that couch potato guy -- last night, I had put my long run aside all weekend and was looking for every excuse in the world to not do it.  I stood at the door almost with tears in my eyes because I just wanted to sit and relax the last bit before my Monday work week.  Well, I'm proud to say that I talked myself out the door and did my run -- my wife was working on this for my birthday in a few weeks, but could tell that I needed it, so this was waiting for me to see when I got home from my run - My cup Runneth over!

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For good measure -- today was supposed to be a rest day, but with new found motivation, and the fact that I worked from home today, I went out for a short two mile run at lunch!

Accountability - Time to Finally Match my Actions to my Words

Last week, Ben Davis of the Do Life Movement featured me and this blog in one of his posts (HERE).  Because of that, many people have recently visited for the first time.  He also mentioned in an interview (HERE) that Gracie’s story and my desire to get healthy because of it was one of the most memorable stories that he heard on his 30 city “Do Life” tour this summer.  What a wonderful honor.   As I look back on this blog since its inception trying to see it through the eyes of someone that is visiting for the first time, I am forced to admit what I’ve really been struggling with lately - that I have been mostly just talk for many years.  The very first post from this blog I talk about how I’m going to get healthy.  That was in early December of 2008.  Countless posts since then talk about how I need to do something, but here I sit today basically in the same place.  That said, I follow two blogs religiously – one is Ben’s referenced above, bendoeslife,  and the other is a blog by Travis Colby called finally airborne .  Both of these guys started their blogs at the beginning of their journey to get healthy, both started them after I started mine.  Since that time, both of them have lost over 100 lbs, both have finished multiple marathons.  As a matter of fact, Ben has completed two ironman’s and Travis is training to complete one early next year.  Both of these guys were bigger than me and are now Ironmen.  Two nights ago, it took me almost an hour to run/walk 3.5 miles - every single run is a struggle, but it was for them at first as well – I’ve got a long way to go, but am done living like I'm OK with where I’m at, because I’m not – I can look back at posts on this site and clearly see that.  I started this blog to keep me honest and to make me accountable, an attempt to make my actions match my words, and have somehow avoided it while still being able to look people in the eyes.  This really is the turning point in my life – Our journey with Gracie has forced me to see things in a different perspective and from now on my actions will match my words.  I am done being all talk.  I am going to continue to “Do Life” and become that happy healthy husband/dad/person that my family/I deserve(s). 

A busy weekend full of reminders

Friday night, we met some relatives from Florida for a quick bite to eat before they headed to Target Field for the first time to see the Twins play the Yankees (ugly game, but a beautiful venue).  After dinner, I dropped the wife and kids off at the house and headed north with my brother-in-law to my mom’s house to help her move.  They are in the process of moving over an hour further away, so by the time we got done unloading the truck and back home, it was well after 11PM.  I must admit, I’m not always happy about the decisions that the people in my life make (and believe me, I know that I’m no saint and am certain they feel the same about me at times).  But I do know, and have vowed to work on remembering that, they are my family and family is always there for each another when they are needed.
  

Saturday morning, we slept in a bit (OK, I slept in a bit) and eventually headed up to my in-laws cabin which is fortunately so close to our house that we were still able to get there just after noon.  We spent the day out on the boat and enjoyed the slower pace that comes with living life on the lake.  At one point the girls went to the beach so Lylli could swim and I went on a boat tour of the lake with my father-in-law and Carrie’s aunt and uncle.  My in-laws have a cute little late 60’s run-about that often gets compliments from others – even those driving the bank busting, way out of my tax bracket dream boats often greet us with a nice comment about it.   It’s definitely a neat little boat, but not what you’d say screaming with power.  The low point of the day was when everybody else had to move to the front of the boat in an attempt to plane out – unfortunately, still no luck, the front end stayed lifted so high that I could barely see in front of us.  The tour consisted of the three of them sitting as far to the front of the boat as they could while the less than svelte, sun-burnt five-headed (much less hair than on what used to be my forehead), sweaty son-in-law sat alone in the back - two feet lower than the rest.  I couldn’t help but be a bit self conscious when passing and waving to the other boats.  Heck, I probably would have chuckled myself.  After the wonderful reminder that I was not comfortable enough to enjoy the lake in the same way as the shirtless folks we waved to on our tour, we headed back to the cabin and eventually home. 
 

On Sunday we headed to the state capitol to cheer on my step-sister and sister in-law and their team as they finished the Susan G Komen 3 day walk and to watch the closing ceremony.  Deb was one of the walkers that walked with them, I won’t begin to try to explain exactly how we know her, but for ease of explanation, I’ll just say she’s a friend of the extended family.  She is a two time breast cancer survivor and was chosen to raise the final closing ceremony flag.  The whole time I watched her, I thought about how supportive she was to us with Gracie while at the same time facing such a fight herself.  I have to admit, there were times when I left the hospital this past year and had to go to work where I was numb and confused about how life could just go on, business-as-usual, all around us while we were in such a fight for Gracie’s life.  I think the reminder that everybody faces major life changing events no matter if they are your best friend, a stranger, or your worst enemy – this is something that we all have in common – that guy that just cut you off and shot that dirty look on your drive in this morning, before you return the favor with the bird, remember that instead of letting him be the nameless, faceless target of your aggression, that we all do in fact have this in common and maybe he is crying inside because he just had to leave his sick daughter at the hospital to provide for his family, or has just lost a loved one or is currently struggling through some other life changing event.  Anyway, back to my story - throughout our time at the walk and ceremony, several things came to mind that made me extra emotional.  I saw the thousands of tired limping-bloody-blistered footed walkers hugging their families and friends as they finished the three day 60 mile walk.  The energy in the air was so happy and sad at the same time – but what an empowering environment.  It reminded me of how so many people have to fight so hard due to things that they have no control over – reassuring me that I need to continue to work to control my life.  Don’t get me wrong, I’m not comparing becoming out of shape to having a life threatening disease – quite the contrary – the event served as a reminder that I can control this and in order to properly respect those that lose their lives to things out of their control, I need to follow through.  At one point, my wife and I looked at each other, both of us with tears in our eyes.  I think she put it best, saying that it seems causes of any sort have taken on a whole new meaning to both of us.  Having gone through what we have with Gracie has changed us both very much.  During the ceremony, a large group of walkers released several pink balloons into the air – as they flew higher and higher into the sky, we both could not help but think about the family we met in the hospital that lost their beautiful daughter this past year.  I just know that Eden got very excited seeing all of those pink balloons coming her way.  I also found myself thinking about how that same location is the finish line for the Marathon that I signed up for and will not be running.  I wondered how in the world will I be able to go there with my head held high to cheer on my buddy Dave on October 2^nd while thinking the whole time that I am supposed to be running with him.  All I can do is face it head on and know that I am working hard at this and getting better every day.  There are going to be highs and lows in this journey, but in the end, I will do it.   On a positive note, I spent the afternoon with my girls at this wonderful event – the day before Gracie’s nine month birthday (yes TODAY she is 9 months old!!!!) dancing with her as she smiled that beautiful smile – a smile that every time I see it,  confirms how lucky I am and that I am right where I’m supposed to be.
  

I went home and with a newfound determination did my planned 4 mile run – sure, between the walking and running, it took close to an hour and I will need to speed things up quite a bit to not get swept when I run the half marathon in October - but on a Sunday night where I was tired and would have previously sat on the couch and watched TV, I got myself out there and did it.             

Gracie's Trip to Boston

For those just joining this blog, my second daughter, Gracie, was born in November of 2010 with Down syndrome and some very severe and rare heart defects. After two major heart surgeries at the wonderful Children's Hospital in Minneapolis, the doctors there were unable to give us the answers we needed - the best they could do was to "buy her some time" - This was not an answer we were satisfied with and set out to find someone that could. We found Dr's Del Nido and Marx (surgeon and cardiologist respectively) at the world renowned Children's Hospital of Boston. This was our last hope to save Gracie's life, so in May we flew to Boston and with a very complicated surgery, they were able to give our girl a four chamber heart -- she is now a part of a very small group of kids with this condition that were given no hope at home, yet were able to go to Boston to be repaired. This is a little montage my wife put together of her trip. These little girls are my world and the reason I am working so hard to get healthy.

Make a video - it's fun, easy and free!
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26.2 B4 40

So I had come to the realization that I wasn’t going to be ready for the full Twin Cities Marathon on October 2^nd, broke the news to my wife and made that painful phone conversation with my buddy Dave (The undertaker, last man to let you down) that I wouldn’t be joining him in “our” first marathon.  It was a pretty tough little patch for me – I even sunk deep enough into a mini-depression that I skipped some runs, etc.  I am so upset with myself for not following through with things and have vowed to not do that anymore – So instead of looking at this as a failed attempt, I am just making a realistic adjustment to allow me to eventually achieve my goal.  Instead of the full marathon at the beginning of October, I am now going to run the Monster Dash half marathon at the end of October.  That said, I still had my goal of completing my first Marathon before my 40^th birthday on September 14^th, 2012.  Looks like it won’t be the Twin Cities, because that takes place in October – close, but still not before my 40^th birthday.  So as I started searching for marathons, it occurred to me, I will not have Dave to pace me on this one and at my size/pace, there won’t be any pace groups that I can hang with.  Then, as if a sign from whatever power you believe in, I read the Bendoeslife blog as I do daily and learned of their plans for 2012 to run 52 marathons next year and act as unofficial pacers for those like me finishing towards the end of the pack.  I literally got tears in my eyes – What timing!   So as I continue my training,  I am eagerly awaiting to see their schedule for next year and if I have to fly across the country to run it with them, I will do that.

 

SUDS 2011

Last year at the Step Up for Down Syndrome walk, 85 people joined us on a beautiful day to celebrate what was at that point an uncertain future for our unborn baby.  Since that day, Gracie has arrived and though we've had some scary times, we are happy to say that her future looks bright.  The support of our family and friends (and friends of friends) has been so wonderful.  We invite you to join us this year to walk as part of "Team Walking with Grace".

The walk, this year, will take place on September 25 at the Midway Picnic Pavilion at Como Park in St. Paul.  The walk itself officially starts at noon, but the area is full of booths and kids' activities that get started way before the actual walk.  We would like to invite everyone to come early (anytime after 9 AM) to enjoy some breakfast treats and visit, checkout the other activities, and of course see our Amazing Gracie.

We will provide a "Walking With Grace" t-shirt to those that do not already have one.  Please remember when you RSVP to this event to include the shirt sizes of everyone in your group needing a shirt. 

Your response to the evite is important so we can be sure to have enough food and shirts for everyone.  Here is the link to the evite: http://new.evite.com/services/links/T7MGQUS4DY
there is no need to officially register for the walk (through the DSAMN.org site), it's very informal, just let us know if you plan to join us so we can plan accordingly.  In order for us to get the shirts in time, please RSVP with numbers and sizes by September 4th.

We are hoping to take a picture of our whole group at 11:30.

Also, for those that would like to join us and do not want to walk – that's no problem.  We will have a popup canopy and chairs, etc – There are many people that don't do the walk – the event has plenty to do without it. 

Here is a link to more information about the event:      www.dsamn.org/stepup

Thanks again for all of your support over this past year – we hope to see you at the Walk

~The Delaneys

Do Life.

I admit, this blog goes in so many directions (kind of a lot like the writer).  When I first started posting, it was just after the birth of our first daughter, Lylli – the goal was to chronicle my attempt to get healthy and become a good dad.  I got caught up in any number of other things and once again slipped further down the path of not being able to buy clothes off the rack (and to give you a hint, I haven't gotten any taller).  The theme of my posts moved quickly into bathroom humor aimed at the couple of high school/college buddies and their coworkers that I knew followed it.  Then suddenly, we got news about our second daughter very early in the pregnancy having Down syndrome and a congenital heart defect.  I can't say I ever imagined being the father of a child with a disability – That's just one of those things that happens to other people.  So then, I started posting my thoughts about how my new life would be with Gracie in it.  Other people started following it – to be honest, it even forced to go back and delete some of my rants about stall #3 in the office bathroom and my view on the cons of the horseshoe toilet seat.   Then Gracie was born this last November and the doctors told us she wasn't going to make it – I had times when I posted something almost daily and other times where I rarely posted (for instance when my wife was reporting all of the details on Gracie's caringbridge site  - for those interested see the link on the right side of the blog) – Gracie had two major heart surgeries in Minneapolis to "buy her time" and despite the skepticism of the doctors in Minneapolis, in May we went to Boston to the best surgeon there is and he fixed her heart – It truly was a miracle and the support from our network of family and friends was amazing.  I am a very thankful and blessed man.

For those that follow this blog – Because of what we've gone through this last year, you know that I've come to the realization of "What kind of dad would I be to continue to live a life that ruins this perfectly good heart that I've been given when Gracie has had to fight this hard just to have a life because she was born with a bad heart?" – So my buddy Dave calls me up awhile back and asked if I want to do the run this year at the Twin Cities marathon – we both have done the 10 mile race that day in the past and he knew I was very disappointed the last time did it.  So I told him, heck yeah!  I was bound and determined to run the Twin Cities 10 mile somewhere between the 9 minute pace I ran at the first year they had it and the 12 minute per mile pace I ran a few years ago at almost 300 lbs.  I talked to him a couple days later and he informed me that he was talking about the full Marathon – Holy Crap!  I couldn't even run to the mailbox without a break.  My guardian angels swooped in and offered me up a coach that has outlined my training and I have been running 4-5 days a week for about a month and a half.  I still can only run probably at most a mile before needing to walk, and most wouldn't even consider my running pace, running, but I feel myself getting better every day.  I bought and had to return a Garmin 405 gps watch because my wrists were too big – but found an earlier model (the 305) that works with an extender band – I'm so used to running (ok mostly still walking) with my iphone playing music in my ears, but have recently gone out on a few runs without it now that I have the watch to "pace" me.  When I get to a point where I want to give up, I think of my girls and sing "Fix You" by Cold Play in my head – that finally brings me to the reason for tonight's post:

As I make my way on this journey to become healthy, I've stumbled across many blogs – most of them are either a parent of a kid with a disability or someone in their own pursuit of being healthy.  One blog is from a guy name Travis Colby (http://finallyairborne.blogspot.com/) – Travis was kicked off a ride at Disney because of his size—that was his tipping point – he's a former fat guy turned fitness fanatic journaling his weight loss journey and multiple marathons, etc.  One day he posted the youtube video of Ben Davis –  I believe I shared it on this site the same day – I still, watch this video fairly often – I can relate so much to what he was feeling -- the montage is to "Fix You" by Cold Play – I hope to have a montage of my own like that someday -- heck I've started taking the bus to work – the other day I found myself in the back seat in tears watching the video on my iphone – Ok, I wasn't sobbing, but I had to quickly turn it into a yawn to hide the fact that I was so emotionally effected by something I was watching.  Ben promised his grandma over Christmas of 2008 – that he would face his depressed and unhealthy life head on – in fact, his blog www.bendoeslife.com , I believe was originally created for her to keep tabs on his effort.  Since that time, he has lost 120 +/- lbs, has finished multiple marathons, as well as at least one ironman (with his dad, Pa, and brother, Jed) – they are all currently training for another.  It's this blog where I believe I originally got the statement that Pa told the boys – "You don't see old fat people" – That really hit home -- I use that line all the time now and think of it quite often since I'm almost 300 lbs and just over a year shy of 40 with 2 year and 7 month old daughters and plan to keep trying until we have a boy – I plan on being around for these kids for a long time and in order to do that, I needed to make some changes.   All three of these guys are spending the summer travelling across the country in a station wagon, to spread their theme to "Do Life" by hosting a series of free 5k's  www.dolifemovement.com – check out each of their blogs on that site.  I religiously follow them now and I wanted to encourage the masses to do the same.  Next Thursday, July 14^th, they will be in Minneapolis  for one of these 5K's  http://dolifetour.tumblr.com/post/6055649788/minneapolis

 I wanted to encourage you to join them/me – please don't be intimidated if you're not a runner – even if you just want to get some motivation to get started on a similar journey – many people walk it, there are people my size and bigger as well as seasoned runners.  The emphasis is not about how fast you finish the run.    Details about the 5k are on the dolifemovement site above.   I contacted Eric Perkins at Kare 11 hoping he'd do a "Perk at Play" segment about their tour this summer and maybe join us that day – he responded asking when, but I don't know if he contacted them.  Anyway – they are asking that we spread the word -- so I am!

June 30th 2007

What can I say that I haven't already said about my wife?  I'll spare you most of the same ol' sappy stuff that I've touched on a few times during our journey so far with Gracie.  It's crazy to think that four years ago today, we gathered in a park with a couple hundred of our family and friends and got married – When I think back about that beautiful day, I wouldn't have changed a thing.  Back then I knew I was lucky to marry her, but as we've faced the many challenges that have been presented to us since that day – I have to add, also, how thankful I am.  I don't know how I would have made it to today without her as the yang to my ying.  She is so many things that I am not – and I can't thank her enough for the wife she is to me, but more importantly, the mother she is to our daughters.  It's easy to be happy when everything is going great, but we've had some scary times already and to see how she's been during those times proves without a doubt that she is who I am supposed to be with – Some people originally may have only seen the quiet, easy to please, beautiful woman (like I said, my opposite) – but I think, by now, so many have also gotten the opportunity to see how amazingly strong she is too.  Because of her, Gracie is going to live a long life – Just one of the many reasons that I am beyond proud of her.

 

Carrie -

Thank you for putting up with me and for becoming my wife – thank you for being such a wonderful mother to our amazing daughters -- and thank you for supporting my, at times, pathetic effort to get healthy – I know its selfish of me to come home after work and then leave you, with a wild 2 year old and crying baby, to go run – I know you know how important it is for me to get healthy and your support means everything.   Thank you for putting up with me on those days where I spend more time pouting about getting to this point than doing something about it.  You don't see old fat people and I plan to spend many evenings as an old man hanging out with you in our rockers on the porch talking about how proud we are of our children (I originally typed girls instead of children, but as you know another Delaney family cousin was born just the other day – of course a girl – this has to be some sort of a record – You've got to think the odds are that the next one will be a boy – you ready?)     

Just One of Those Days

Well I think it’s all catching up with me – After doing the Heartbeat 5000 5k with the girls (ok not officially, but we were there and visited with people), and having lunch at our favorite local Mexican restaurant, I snuck out of the house on Saturday afternoon to watch some buddies play softball at the local summer festival – I got way too caught up in the moment and the fact that I was given the green light from my wife to stay out and have fun - I had way too many beers from the beer tent – I rarely go out anymore, and besides being a little obnoxious, I was home early (got a ride) and it was harmless fun and frankly, I needed to blow off a little steam, but I need to learn to say “when” because I heard the phrase “we talked about that last night” several times on Sunday from my wife -- I don’t like it when I’m “that guy” and am told by others that they heard I had fun on Saturday  –  and when the next day I bring up several things that we covered the night before and have no recollection – that’s not good – I’m not saying I’ve got a problem, but I am saying that I am going to be a little more aware the next time I decide to let loose.  I woke up Sunday feeling terrible and skipped my long run for the week  -- I can’t believe I made the decision to do something that resulted in me missing the most important run of the week for my training -- I was so depressed and ashamed on Monday that I could barely get out of bed.  I went into work a little late and spent the whole day in a funk.  I guess everybody has those times when they are down on things and I thankfully have managed to stay pretty upbeat over the last several difficult months, but I couldn’t help but feel like I’m letting my family down.  Every day, I remind myself of the saying that “you don’t see old fat people” and I am truly trying to make some changes in my life to get myself to a healthy weight, but I think I was way too optimistic about training for this marathon – We’ve got so much going on these days – its difficult enough to try to get back to a “new” normal life after 7 months of hospitals and heart surgeries – but add to that the fact that every day, I’m reminded of how truly out of shape I am – it’s really mentally taking its toll.  I don’t think it helps that I am seriously in need of some time away from work  – Life has been so stressful this past year and I don’t have the option to take any time off to relax – and believe me, I’ve never needed it more in my life.  I went out last night for my scheduled run – although being discouraged by my slow pace and short distance travelled in the 40 minute workout – I did feel a bit better when I was done and am not going to give up on my quest.     

 

 

 

 

Found This Online - Author Unknown

My face might be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As god in the heavens

Looks down from above

To him I'm no different

His love knows no bounds

It's those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I've chosen

Will help me get started

For I'm one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I'll do as you do

But at my own pace.

Gracie's Benefit on May 7th

For those that know me, you’ve noticed I’ve kind of started to make a habit of making a long winded speeches at events – here is what I  read to those that were left at the end of the benefit on May 7^th.  There were so many others that came to the event, and I want to be sure you all know how thankful we are, so I’ve decided to put it here for those that weren’t there at the end of the night – and thanks again!!

 

 

When we were first approached about this event, we were both pretty uncomfortable with the idea.   We talked about how everybody has times in their lives where things get rough and feel that there are so many people that have it so much worse than us - but after many convincing conversations about it with several of you, we decided that we would go along with the idea.  In fact, this event just goes to show how blessed we are.  Now that it’s here, I will admit that our financial situation is much different these days – We are obviously faced with additional expenses and at the same time have needed to become a single income family.  This event will allow us to not have to worry about the financial part of our trip to Boston.  As the husband and father to this family, I can’t begin to tell you how thankful I am to all of you for that. 

 

Between word-of-mouth, facebook, daddythefatty and caringbridge sites – there has been a lot of information put out there about Gracie’s situation.  But if you don’t mind, for those of you that don’t know her whole story, I thought I’d take a minute and recap our journey to date. 

 

When Carrie was 12 weeks pregnant, she got an extra ultrasound to test for the risks of certain chromosomal abnormalities. We honestly just did the test to get an extra peek at the baby – In fact, since it was already the 2^nd ultrasound for Gracie, I didn’t even go and was happy for my sister-in-law, Kim, to be able to go along with Carrie and share in the excitement – Never in our wildest dreams did we imagine anything would show up as out of the ordinary, and frankly, even if it did, we wouldn’t do anything different.  The mood in the room quickly changed when after checking the baby for a minute, the technician suddenly said he had to go get the doctor. The doctor came in and looked at the ultrasound and said the baby had fluid all around her – this is referred to as hydrops.  They then sent us to a perinatologist a few days later and another ultrasound showed that the baby looked the same – hydrops all over her body and a buildup of fluid behind her neck, also known as a cystic hygroma, that measured 11 mm – they worry about anything over 3.  It was at that point when they told us that the baby wouldn't make it. Not that she MIGHT not make it, but that she wasn’t going to make it. When we asked them for our realistic odds - the doctor said maybe a 3% chance at best - Babies with these issues just do not make it to term.  We were pretty devastated - went home and discussed the options that were presented to us – We both felt strongly that if she had any chance at all – we would give her that chance.  We went back at 14 weeks and nothing had changed - We went back again at 16 weeks – Each visit just waiting for them to tell us that the baby’s heart had stopped, but this time, the hydrops was GONE! It was truly a miracle because apparently that just doesn’t happen.  We decided to do an amnio to figure out just what was going on with our baby.  After a few of the longest days ever, the amnio results came back and we found out that our baby was a little girl with Down syndrome. Now – Down syndrome we could handle. We know and love many people who have Down syndrome and have had serious conversations about adopting a child with Ds someday.  In addition to Down syndrome diagnosis from the amnio, they also noticed in an ultrasound that our baby girl had some heart defects. She has holes in the wall between the chambers of her heart. That’s in itself is pretty scary, but we had already done enough research to know that is actually fairly common for kids with Down syndrome and medicine today is generally pretty successful at fixing that – However, the biggest problem is that her heart was also “unbalanced” – In her case, the left side was much smaller than the right.  She now had much better odds of making it to term, but the doctors were still not overly optimistic about her chances of surviving much past birth if her left ventricle did not grow.  The doctors continued to monitor her very closely throughout the rest of the pregnancy.

 

After a very short labor, Gracie was born on November 22 at Abbott and rushed immediately to the NICU at MPLS Children’s Hospital. They immediately did an echo and saw that her heart was still very much unbalanced. This would be a tough diagnosis for any baby, but especially for a baby with Down syndrome.  Something about that extra chromosome makes the 3 surgeries required to make her heart into a functioning 1 chamber heart not go well.  Because of this, we were first told that they would put a small band around her pulmonary artery that would restrict blood flow to the lungs to “buy us some time”.  The day after Thanksgiving they brought us into a small room and told us of our options –  we thought we were going to go over the details of her upcoming band procedure, but they instead informed us that after further analysis, they decided the band would not work for Gracie.  They told us that we could either do “Supportive Care” – which translates into letting her go comfortably or to do the first phase of the 3 stages of surgeries that I mentioned earlier.  At that time they told us she had a 50/50 chance of making it through the first surgery and that it was most likely going to be a tough road ahead.  The thing I need to add about the 3 phase surgery is that the 1^st surgery, the Norwood is generally done just after birth – the 2^nd surgery, aka the Glenn procedure is done around 6 months, and then the 3^rd surgery, the Fontan is usually done around 2 years of age – Unfortunately, kids with Ds do not traditionally do well after the third surgery and in most cases do not make it – so we knew from the start that if we chose this path, it would be to “buy her time” as we searched for another way to fix our baby girl.  To recap – our choices were the surgery for the chance to “bring her home” with no guarantees about her quality or length of life or supportive care. We were informed that the team of doctors and surgeons that went over her case at Children’s had differences of opinions on which one we should choose.  However, there was no doubt what we had to do for our baby - it was a 50/50 chance or no chance.  So we chose the surgery.

 

Gracie did amazingly well with the Norwood surgery. She sailed through and recovered better than anyone expected. After the surgery was over, her biggest hurdle was feeding before she could go home. It became clear to us that she was not going to be able to take enough by mouth to grow and thrive, so we decided to put in a feeding tube. They did an upper GI study to make sure everything was where it should be and discovered that her intestines were malrotated, so they could not do the simple procedure they had planned. So, a bigger surgery was planned for placement of the g-tube and to fix her intestines. But, in true Gracie fashion, once they got in the operating room and opened her up, they discovered she was NOT malrotated after all! So – they placed the tube and she was back on the road to recovery and headed towards home.

We brought Gracie home on December 23 – just in time for her first Christmas. We had to quickly learn how to use feeding pumps and oximeters to measure her blood oxygen levels. She did really great at home and we LOVED being together as a family.  I can say, although we weren’t able to spend a lot of time with family and friends, it was the best Christmas I’ve ever had and I was/am more thankful for everything in my life than I’ve ever been. 

 

Our lives returned to as normal as it could be with the medicines, feeding tube, doctors’ visits, home nurses, therapists, early intervention teachers, etc – So I guess it you could better describe it as our new “normal”.  Gracie was home for about 6 weeks when she caught a cold which caused her oxygen levels to dip in and out of the too low range for her. Then one night, February 7th, they dipped into that lower than acceptable range and stayed there, so we brought her into the ER. That started a pretty traumatic chain of events that ended with her having another heart surgery to give her a bigger shunt that would allow more blood to go to her lungs. It was a very scary time because she did not respond well to the surgery and had to be put back on bypass a second time in the operating room. She got through it, though, and has done great since then.   What I’ve failed to mention up to this point is that Minneapolis Children’s has been wonderful, but have been unable to give us any sort of a long term answer for Gracie – as a matter of fact at one point, when she was struggling during her last stint at the hospital we were reminded that our original goal was to “get her home” insinuating that we should be happy with the time we had up to that point – Of course we are thankful for any time we have, but this was not our goal – Our goal has always been to do whatever we have to do to give our daughter a long and happy life.  That said, while in the hospital – because of the countless hours of research and networking that Carrie did since the moment we found out about Gracie’s issues, we sent Gracie’s information to Boston, the number 1 pediatric heart center in the country, maybe the world. We asked the doctors here to consult with them prior to Gracie’s first surgery and they had agreed with Minneapolis’ plan to do the Norwood, but said they would look at her heart again in the future to see of a repair was possible. A couple days later – we stated at the Ronald McDonald house at the hospital (each room is kind of like a nice hotel suite) – that morning I stayed in our room with Lylli watching Nick Jr while getting ready to go to work and Carrie went up to check on Gracie and wait for the doctors to do their morning rounds – suddenly, the door to our room flew open – it was Carrie, she pretty much threw her laptop at me and said “read this!!!”  It was an email from the doctors in Boston stating that they may have a plan to fix her!!  We were so excited - it was amazing because that meant she would not have to go down the 3 surgery, single ventricle path! Realistically, we know that the 3 surgeries would not lead to a long, high quality life for Gracie. But, Boston feels that they can repair her heart and turn it back into a 4 chamber heart!  That will be a LOT of prayers answered!  It’s at this point that I need to jump in and say something about my wife – Carrie, you are our hero – from the moment we found out about all of this you have not stopped researching and learning everything you can – you’ve talked to so many people around the country determined to find a way to fix her – we’ve sat in rooms with some of the most renowned surgeons and doctors in the field and you have been able to intelligently talk with them about what’s going on – you also were able to work the internet and find doctor Del Nido in Boston – a Harvard professor and the chief of surgery – Even the doctors here admit that if anyone can fix her, its him – It’s amazing to me that you are literally exchanging emails with him and did everything you needed to do to get him to take on Gracie’s case – One of the amazing things is that you did all of this despite the obvious skepticism of doctors here that she can be fixed – you refused to take that for an answer and have found someone willing to try – the amount of love that you have shown all of us during this time is amazing – You have been by Gracie’s side every single second of her life doing everything you’ve needed to do.  You amaze me every day with your strength and unconditional love – that includes the love for me who doesn’t always deserve it.  I want everybody here to know how amazing of a woman you are and in front of them thank you from the bottom of my heart for finding someone willing to try to fix our daughter.

 

OK – so since our last 30+ day stint in the hospital, Gracie has been doing well – We’ve just been concentrating on getting her as big, strong and healthy as we can before we head to Boston. It is by far the scariest thing that has ever happened in our lives. We know that if anyone can fix her heart, it is Dr. del Nido. We’re unsure about all of the details  -  the initial testing will tell them a lot more, but as of now, based on what they’ve seen so far,  it sounds like their plan may be to do it in 2 surgeries, 6 months apart. We will do whatever we need to do to get her healthy. We don’t know how long Gracie will be in Boston. It all depends on their decision based on the testing, how the surgery goes, and how she recovers. Carrie will stay in Boston the entire time, I’ll go for the testing, surgery and stay a few days until she is in a stable, recovery mode - then come back here to work and be with Lylli. Hopefully I’ll be able to make a trip or 2 back out there - best case scenario would be if I just go back one time to help bring her home because she recovers so quickly.  Gracie had a cardiologist appointment yesterday – the Dr said she is in as good of shape as she can be heading to Boston.   

 

That pretty much covers Gracie’s journey to date – we can’t thank you enough for all of the prayers and support that we’ve gotten during this time – We’re convinced its made all of the difference and the reason we are where we are today – that said – I ask that you keep the prayers, positive energy, whatever you think will help coming – We’ll take everything we can get 

 

I touched earlier on the financial aspect of today which is amazing, but the most important part of today for us is all of the positive energy being generated for our little girl just a couple days before we head across the country to get her fixed.  Our support system during all of this has been amazing - For those of you that want to follow along, we will do our best to update Caringbridge while she’s there. 

 

I also wanted to mention that last year we had 85 people join us as part of team Walking With Grace at the "Step up for Down syndrome walk" before she was even born  – we want to invite each and every one of you to join us this year on September 25^th at Como Park.  Its a really cool event and something we plan to do every year to celebrate Gracie and others in our lives with Down syndrome.

 

So despite this effort, I truly can’t begin to convey to you what all of this means to us and we want to thank every single one of you – I’m not going to mention any names specifically right now because there are so many people that have been instrumental in this event and I don’t want to leave out anybody – I believe they have setup a guest book and hope that all of you here today can take a minute to sign in and leave an email address  -- At the very least, we want you all to know that we will never forget this and promise to pay it forward.       

 

Thanks again so much and I hope everybody has a great time today.