Esophaversary!

Isaac, with a new esophagus!

This week we actually missed the anniversary of Isaac’s esophagus being connected, it was October 2nd. The photo above shows him literally hours after that amazing, long awaited moment – it’s not pretty, but it was the most beautiful moment of his life.
For almost a year we had fought for this esophagus. We learned how to fight, and how far we were willing to go to get Isaac fixed. In all honesty, when he was born we didn’t get it. We thought we were just waiting for him to grow and gain weight, so that he could simply have a surgery and get an esophagus. We had NO IDEA. We had no idea we would ultimately have to make a decision to take this baby halfway across the country to get him the care he deserved (the nurse that gave us the courage to make that call will get her own blog post SOON – because really, the woman who saves your baby’s life deserves that!).
What we thought would be easy, was not. The early surgeries to attempt to connect and stretch Isaac’s esophagus actually damaged it further, had we not taken Isaac to Minnesota I’m not sure he’d have an esophagus now.
For a few years we celebrated this day. When Isaac was initially connected we invited friends and families to send us a picture of them “cheersing” esophaguses – and we still have those photos in his scrapbook. It was a big deal not just because he could swallow, but because of what we had been through as a family to get him there. We had endured distance, no paychecks, little sleep, long hospital days and lots of heartache to get that esophagus. It was something we couldn’t forget.
This year we forgot, just like that. I think it’s because we finally left crisis mode. We are comfortable, and finding our way to normal. We are used to Isaac’s esophagus (and all of the drama it brings with it!). I think forgetting this anniversary means life is good. The esophagus isn’t the focus of our day – and that’s nice.
To celebrate today Isaac ate 3 skittles, he ATE them 🙂 He’s making strides, and they are huge!
Monday he heads to Philadelphia, for a week of testing to determine the next step for his ribcage, positive thoughts are appreciated!

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even superheroes get sick

Isaac is a lot like a superhero in a lot of ways, not all are good ways. Just like a superhero he is hard to topple, and he comes back from adversity in a way most people don’t understand.
He is like a superhero in other ways.. when he falls, he falls hard. It is rare for Isaac to get a normal illness, and even then it is rarer for him to simply recover. Today Isaac didn’t seem right when he got off the bus, when you’ve been doing this for a while you just know. He laid on the couch all afternoon (not a good sign), and finally started coughing up green trach secretions.
Just like the superhero he is, he didn’t complain. He didn’t give away any clues that something was hurting him. I realized late tonight he had been signing more, and when he spoke it was in a whisper… I asked if his throat hurt, he nodded yes. He never would have told me, he would have compensated – because that’s what superheroes do, right?
We’ve already decided he’ll stay home from school tomorrow and probably pay a visit to his favorite dr, and hopefully he’ll have something silly like strep. With any luck our superhero will be back to himself by the end of the weekend.
We are headed towards his big evaluations in Philadelphia in a few weeks, and he needs to be healthy for the trip. Our next few weeks will be spent obsessing over his health and working hard to keep our superhero at top speeds 🙂

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surprises….

jacket

A few weeks ago I was watching our local news, a story caught my attention. There is a local artist who paints jackets with personal healthcare stories, she calls it the “walking gallery”. Her own family was deeply impacted by a health care crisis and has a story – from that she found inspiration. I have looked through the pictures of her walking gallery and been amazed.
Ultimately I sent her a jacket, and Isaac’s story – bare bones. I said he has undergone 21 major surgeries, we have spent countless months away from home, he has lost his health insurance for reaching a lifetime max at the age of 1…. what she created from that is above, and it is nothing short of remarkable. I saw the picture and literally gasped. What she captured is amazing. I am so very honored and happy to have found her.
We tell Isaac’s story, we tell it to everyone – now we have another way to tell it. It’s important to tell Isaac’s story, because it could be anybody’s story. Even if your children are healthy now, things happen….. sometimes horrible things happen.
We have connected to so many people because of Isaac’s story, because we have openly shared it. He is an advocate for making something beautiful out of something crappy. He is overcome, he perseveres……. and he FLIES. What he has endured in four short years is remarkable, most adults couldn’t do what he has done and continue to smile. This child has taught us what it means to fight, and he has shown others that a trach and a g tube don’t really change who you are.
We are so proud to be a part of the “walking gallery”, our stories need to be told.

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Isaac!

Tomorrow, this kid starts his last year of preschool! He’s pretty excited 🙂 We’re all excited! Isaac has grown so much this summer – his speech has come so very far and he loves to show off his smarts. He actually speaks to us now in sentences – SENTENCES! Mind you, this child just started talking a year ago. It’s so amazing each time he excitedly tells me a story – we now know what is in there!
The other night Isaac was spelling on his Ipad, he asked me how to spell one of his nurse’s names. I spelled it twice, then spelled another nurse’s name twice. Two days later I hear him on his Ipad – he’s spelling the nurses names – correctly! I’m pretty sure we’ve got the next head of the class on our hands.
We know this school year will bring at least one surgery, it’s been a while since he’s had a real operation. I dread booking it and having it looming over his head, but it’s unavoidable.
Isaac has to have his spinal cord untethered before the possibility of rib stretching in Philadelphia. I often feel like I’m lying to him when he is having such a great time and doesn’t know what looms in his future. The thought of recovering from more major surgery a few times this year breaks my heart.
So, while we are excited for the school year to get underway, the things we know are coming our way definitely cloud it. It means tough recoveries for Isaac, time off of work for mom and dad, travel costs when we go to Philadelphia, and juggling our other kids….. it just gets a little bit tougher each time.
Tomorrow we will be excited for the first day of school and all of the fun that comes with it!

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busy, busy, busy!!

Sometimes in Isaac’s world no news really is good news! We brought him home a week ago, and he’s been doing great! We decided to proceed with our plans to hit up a few theme parks this week……. so glad we did 🙂
We drove to PA on Tuesday and went to Dutch Wonderland, it’s such an awesome park for the littler ones. Isaac rode tons of rides (including bumper cars) and we spent a good amount of time in the water park – which he could do since he had his PICC line pulled 🙂 Our trachie baby loves the water, and we love to break rules – so things work out well on that front.
On Wednesday we met friends at Hershey Park for another great day. Isaac rode more rides, and again visited the water park. He was super excited to share this day with friends.
As always, Isaac’s joy was infectious. His smile really tells a story, his feelings are written in it. After a horrible week last week of TEN pokes and lots of uncertainty it was so wonderful to feel his joy. His excited tone when he talks about it now is so fun.
It is great to be in a position to go have fun when we can, and to have a kid like Isaac who teaches us that even though we can’t take long, extravagant vacations we can take an overnight trip to a couple of really cool theme parks and get that necessary reminder about what is really important in life – the amazing smiles of three kids are top on that list!

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