Day of change

the first couple of RMH

the first couple of RMH

Today is officially the “Day of Change”, this is a day where we are encouraged to go to our local McDonald’s (who really needs to be encouraged to do that??!) and deposit our change in the collection boxes for the Ronald McDonald House.
We are happy participants in this activity, the Ronald McDonald House is literally our home away from home. Our first stay at an RMH lasted 8 months. For 8 months we had a place to sleep and home cooked meals, we also had a place to connect. When you live somewhere for 8 months you get to know people pretty well, whether you like it or not. After a few months in Minneapolis started getting to know other families, families we never would have known in our regular life. Families that had a sick baby, a chronically ill child, or had a perfectly healthy child at home who suddenly wasn’t perfectly healthy. We experienced a lot of loss, all of those families will stay with us for a lifetime.
We also experienced a level of friendship we never imagined. We refer to our RMH peeps (staff included!) as our family, and they are truly are. We got to know people on a level you probably shouldn’t, in a place you’d rather not be. We shared our ups and downs, and did it all in the comfort of a nice, big, comfy house.
When you have a child in the hospital life becomes about that child. RMH gave us an escape, it gave us a place to sleep at night, we didn’t have to worry about how we would pay for it, or how long we could stay.
We also never had to worry about where our meals would come from. THIS is huge. First of all, the expenses of eating while your child is hospitalized add up. On top of that, hospital food can get pretty bad 🙂 At RMH volunteer cooks come in to make meals every night, and often times brunch on Sunday. There are fridge’s full of leftovers and pantries stocked with food that anyone can take from. The desserts alone can keep a tired mom and dad going 🙂
RMH made a profound impact on our lives, to give a little back we will be stopping by our local McDonald’s tonight to drop some change, pick up a Sweet Tea (Isaac’s favorite!) and spend a few minutes being grateful.

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Esophaversary….

Brand new esophagus!!!

Brand new esophagus!!!


5 years ago tonight, this was what we were looking at…….. a little boy who had been in surgery for somewhere around 8 hours. Today is the anniversary of the day Isaac got his esophagus connected. It is a day we dreamed about for almost a year, and now one we will soon be replacing with a new type of “versary”.
This picture isn’t easy for most people to look at, but it is really one of the most beautiful photos ever taken of Isaac. On this day we were so excited to see him that we didn’t give the nurses time to clean him up, we rushed right in to see our brave boy.
Recently, there has been some talk amongst medical parents of a photo of another little boy, in the hospital and connected to wires and machines. This little boy’s dad had a photo of his beautiful, brave son banned by facebook for being offensive (they have since apologized). I see photos of these kids and I am in awe of what they live through and overcome.
I photograph all of Isaac’s journey – because it is a part of him, and it is beautiful. It shows just how strong and resilient he is. It gives us a way to remember the beauty of moments that we may not have seen the beauty in at the time we were living it.
Tonight we will celebrate Isaac’s esophaversary with ice cream, and remember a time when ice cream wasn’t even possible.

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he’s complicated….

he lost a tooth!

he lost a tooth!

This week I got to have a talk with Dr. V, the surgeon in Cincinnati who is leading the team that is now working on Isaac. As with every conversation we have ever had with a medical professional he started with “well, Isaac is pretty complicated”. And he IS pretty complicated, but he is also our beautiful almost 6 year old.
It’s hard to look at that gorgeous face and know how very complicated he really is. It’s also hard to know that these “complications” get in the way for him to the extent that they do, and that they are what is predicting his quality of life at this point.
What it comes down to is that Isaac’s lungs need protecting more than anything. The biggest concern is the dirtying of his lungs, and what that could do to his respiratory status later in life. We have never placed emphasis on his lungs before, but this amazing team is. They are discussing him a lot, and they are determining the best way to make his life fully livable.
We are very excited about what we have heard so far, and we are happy to have once again found a team that is willing to take on an uber complicated little boy.
As Dr. V and I talked shop he asked how Isaac is doing, and I told him about this our latest excitement (see above!)….. Isaac lost a tooth! He was nearly as excited as we were, and the beauty of a little bit of “normal” excitement wasn’t lost on him. That was when it started to make sense, a surgeon who understands the excitement of losing a first tooth….. it is pretty complicated, huh?

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He had a GREAT day!

Best day ever!

Best day ever!


Today, Isaac declared it was the “best day ever”. This is because he got to see his friend “Shout” from the Fresh Beat Band. He actually got to see the whole band, but he feels a connection to his Shout. Because Isaac had such a great day I’m ready to lay out what he’s facing to repair that esophagus, I have tried to write this post a few times, and always get bummed and stop.
I talked to a member of the Cincinnati team this week, and the conversation threw me for a loop. Essentially, they are proposing something bigger than we had expected (file this under “be careful what you wish for”). We have hoped and prayed that they would see the problems that we have seen and come up with a way to fix them. The fix they are proposing is BIG.
Broken down, what is being proposed is something similar to a gastric bypass. They will use his small intestine and just bypass his esophagus and stomach. This will give him exactly what we have hoped for – a way to eat small meals (safely!) and access to G tube feeds (much more user friendly). The reason this one was so hard on us is that it is an incredibly permanent fix. What we’ve done all along is patching, with the intention of these patches becoming fixes. The patches are not fixing him, not even a little bit.
The go big or go home approach is one we support. We know that Isaac’s issues are twofold, he has the crappy esophagus with the recurring hole and he has horrific reflux, which causes him to aspirate into his lungs – not ideal for a healthy life.
The easy fix, just replacing his esophagus with colon would solve the crappy esophagus problem, but not the reflux/aspiration problem. There is no reason to do another patch. We KNOW this. The problem is, how do we wrap our heads around such a permanent fix and know it’s right? How do we commit Isaac to a lifetime of small meals and potential of G tube feeds forever?
We have wrestled with this all week. We still have time to think about it and discuss it with the surgeon.
Luckily, we had already bought Fresh Beat Band tickets for this weekend, sometimes we have to let go and have fun to put it all in perspective. I reached out to our friend Shout yesterday, and of course he brought Isaac backstage today.
During the concert today I watched Isaac sing and dance with his brother and cousin. He had no worries. Sometimes that is what I need to let go of my worries, to see him in his no worry state. The more I think about this surgery (and I think about it A LOT), the more I realize it may just be the best thing for Isaac. We chose this team because they are good, because they think outside of the box and they are devoted. They share our concerns, they want to fix them as much as we want them fixed. They refer to Isaac as “our boy”. This is what has driven us to find the best doctors all over the country, a devotion and ability to fix that we are willing to travel to.
So, because Isaac had a good day, we all had a good day. Because of this good day we can now look at the potential surgery he faces in a new light.

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the low down

breaking the rules!

breaking the rules!


Tuesday and Wednesday brought us to some pretty intense findings on Isaac. We met with the GI and lung doctors on Tuesday to talk before his scope on Wednesday. GI didn’t bring much news, just that we’ve starving him 🙁 With formula feeding it’s hard to tell if he’s getting enough, and apparently his weight is telling us he isn’t. So operation “fatten up a boy” begins now.
His scope brought us a lot of nothing, and also a lot of something. What we know are a few things. Isaac’s connection between his esophagus and lung had closed, but they could still see a hole in the esophagus. The problem with the connection being closed is that they obviously can’t fix what they can’t see. On top of this, the esophagus Isaac has is crappier than we thought. Where the scarring is there is a 2mm opening, they can dilate it to 8 mm – that’s not much. Without serious intervention his esophagus will continue to scar and stop working.
So – what do we do? They are leaning towards removing the lobe of his lung that is the issue. That is the very least. They are meeting to discuss him, and discuss if the should just go ahead and replace his esophagus with colon.
This would be a major, major surgery. Recovery will be rough. Knowing this, this is the one chance we have to give Isaac some sort of functioning esophagus – some chance at normalcy. It would give him a chance to eat little bites of food when we wants to, and be G tube fed and not connected to a feeding pump 19 hours a day.
As scary as the surgery is, we feel we owe it to him. We hate that we have all invested so much in this esophagus and we are just going to let it go, but Isaac and his daily happiness are much more important.
So, this week they will discuss our boy and get back to us. They may go ahead and say it’s time to operate and be done. They may say to wait for the next fistula with the understanding that when it happens we head there the next day…… either way, we are confident in this team and prepared for whatever they may decide.

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