changes……

A sick little puppy

A sick little puppy


Last week this sweet boy started getting sick again. By Monday he was really, really sick. Sick enough that we scheduled a dreaded esophagram to check for leaks in his esophagus.
Unfortunately, our fears were confirmed, he once again has a big, gaping hole in his esophagus. A bigger hole than any of us have seen before. As the week has gone on he has gotten sicker still.
We reached out to Dr. Hess, we still haven’t heard back from him with a plan. In the meantime we trusted one of my fellow EA mamas and consulted with the surgeon who saved sweet Ireland’s esophagus (it’s actually colon in place of esophagus, but good enough!). He was quick to get back to me, and we felt really comfortable with the team approach he offered. They will do a full evaluation and their team will watch his scope together to discuss him. They will develop a plan and share it with us before moving forward, we are hoping they can patch his esophagus without opening him up, but worst case scenario could have them replacing part of his esophagus with colon.
We still love and trust Dr. Hess, but with this problem happening over and over we have to think about alternate ways to heal him. Isaac’s right lung is taking a beating, it is already showing us that. Dr. Hess told us that he cannot open Isaac’s chest again, and we believe him. It is so scary to not know what to do, and to have to build trust in a whole new team.
Of course, this won’t be easy, because the new team is in Cincinnati….. and we decided we were going at about noon today and need to head out in the morning. Today has been busy, lots of calls to set things up, lots of packing for both boys, lots of odds and ends. In the middle of all of this the love we have been shown is once again what is keeping us going. The calls, texts, emails and support from friends and family have been overwhelming. We know we are not in this alone – we know we are loved and supported in a huge way. We know the gift Isaac has brought into our lives with all of this support and love, a
and we are so happy to share him and his strength with everyone.
We will keep the updates coming as we know more.

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Merry Christmas!

Amongst a million other things, Isaac has taught us very important lessons about the meaning of Christmas. He has officially spent two Christmas’s in the hospital, which is two too many for a five year old. The only major holiday he has not spent in a hospital so far is July 4th, and we’re hoping to keep that one safe in the future!
The second Christmas Isaac spent in the hospital was devastating, for me. I made it a much bigger deal than it was, and he really was sick enough to need to be there. I realized in the middle of the night, just a few hours before he would have been opening presents that it really didn’t matter. On Christmas Day we had a steady stream of family in and out of Isaac’s room, and it was full of love. I stopped feeling sorry for Isaac (and myself) and focused on what we had. We had an amazing family and network of friends, a wonderful hospital just a few minutes from home that could care for Isaac (and nurses that came in while I was rocking him at 3 a.m. to make sure I got first pick of gifts for him since he’s so loved there!), and we had Isaac. It didn’t matter when he opened his presents, or whether he realized it was Christmas – it mattered that he was with us, and we were all together.
I go out of my way each year to take part in every holiday activity we can, because I never know when Isaac could get sick and miss out, and I want him to get all he can just in case. We have baked cookies, baked homemade Christmas presents for everyone he loves, decorated the house, experienced the Elf on the Shelf, visited Santa a few times, participated in a Christmas Sing Along……… and today Isaac participated in his very first Christmas Pageant! He was cutest little lamb in the house! Something so normal for any other kid was a huge achievement for Isaac. The things he has always missed out on are open to him now, and we are having so much fun enjoying it with him.
Tonight, he is snuggled in bed waiting for Santa, so normal 🙂
We are grateful for another wonderful year with 3 amazing kids, and grateful for the love and support that still pours in for our favorite little superman.

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beads of courage

When Isaac was in Minnesota as a baby we occasionally heard about a program called “Beads of Courage”. For every procedure a child endures, they get a bead. As you can imagine, kids really rack up some beads. We never looked into it, we were pretty distracted and really thought once this first trip was over we would be done (HA!).
Over the years we’ve seen kids show off their beads with pride. You get a bead for everything – dressing changes, IV pokes, surgery, doctor’s visits, tube changes, transfusions, xrays…. the list goes on and on.
I asked about getting Isaac in over the summer, and was told that there was a wait list. It is very sad to me that we have so many sick kids that there is a wait list for the beads. I kind of forgot about it after that.
Last night I got an email – Isaac was in. I was asked to tally how many of each bead he should get, seriously…… this kid is owed hundreds and hundreds of beads! Luckily they have streamlined, so when done retroactively the kids get a bead worth 100 beads for every bead earned. Instead of receiving close to 1000 beads in the mail we’ll get about 50, by my estimate.
From this point on we keep a tally, every time Isaac goes to the doctor, or has a procedure he earns a bead. It is a small token, but I just think it will be so amazing for him to have something tangible later in life to show all he has endured. It was very surreal last night as I estimated these things, and it brought back memories. Some things become so mundane in the hospital, but even a dressing change is a very upsetting experience for a little boy – and he deserves recognition for being brave and resilient.
We are excited to introduce Isaac to his beads and let him continue to show off what a brave little boy he really is.

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THE WHITE HOUSE

Future President!

Future President!

Our trip today totally earned all caps! We trekked to the White House today, and had the most amazing time. We were in the second row for a press conference the President was doing about Affordable Care, specifically what it has done for those facing lifetime maximums and pre-existing condition clauses. The audience was filled with people like us, people impacted by lifetime limits and pre-existing conditions.
The energy in the room was unreal. Even at 5, Isaac felt it. He cheered wildly along with the crowd, as usual – he seemed to understand something so much deeper than he should. Seeing the President speak, so close to us, about something so important to us (lifesaving, in fact) was a remarkable experience. It was one we will treasure for a very long time.
Isaac is remarkable, because he has the opportunity to be. He has the opportunity because he has access to the care he needs. He knows how deeply he is loved, and the lengths that we will go to in order to give him those opportunities.
Being in a room with the President who has helped us to help him was inspiring. We have a lot more work to do, and now we know we need to do it.

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so much excitement!

backstage with The Fresh Beat Band!

backstage with The Fresh Beat Band!

If you read this blog with any consistency, you’d know that Isaac had a very special belated birthday gift coming his way… not only did he get go to the Fresh Beat Band concert, but his buddy “Shout” left him backstage passes again. We got him just well enough to go to the show, he rotated between dancing in the aisle and laying on daddy’s lap to rest.
Once again, the meet and greet was wonderful. As Isaac’s turn approached he was spotted by Shout, who greeted him by name and gave him a wonderfully huge hug! It’s so nice to be able to tell them what they mean to Isaac – how many late hospital nights we have filled with videos of them. They really have gotten him through some tough times, and meeting with them is such an honor.
Because we like to up the ante when it comes to excitement we have MORE exciting news…. Isaac (and the rest of us) are going to the White House on Tuesday…. THE WHITE HOUSE!! I got a call this week inviting us to attend “an event with the President” – who would say no to that? We’re not sure what this entails, if we will get to actually meet the President or not, or even what time it takes place (they will tell us that the day before)… but it’s still so exciting.
We haven’t been shy about our love of Health Care Reform, or what it means to Isaac. Having an opportunity like this is more than we could ever ask for. I’ve always told Isaac someday he’ll live in the White House, now he can check out his future home 🙂

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