Long time no see!


We have gotten so busy being normal that we have failed to update in a LONG time! Isaac has been super busy being a normal 8 year old 🙂 Cub scouts and T ball have been keeping him busy – along with a lot of reading (a new favorite).
Along with all of this normal we have been keeping up with the business side of Isaac. We have been to Cincinnati twice this year – once for a normal scope, which left us in the middle of an important discussion. After years of asking “when can he get the trach out?”, his doctors were prepared to answer that! His team feels like his right ribcage needs to be opened up a bit, allowing that right lung the ability to expand further – if we can achieve some growth in that ribcage we are ready to start working towards getting that trach out!
Of course, nothing is ever easy with Isaac, so we weren’t sure how this would happen. He went back to Cincinnati a few weeks ago, and met with an orthopedic surgeon who had news regarding that ribcage. Many years ago we sought help with the ribcage via a procedure called VEPTR, this involves placement of a rod along the ribcage, every 6 months or so the rod is stretched – encouraging the ribcage to expand. When we discussed this surgery 4 or so years ago, Isaac was too sick. We kind of just assumed it would be out for him forever.
We were wrong! He is now so healthy that it is the BEST option for him. We are pretty relieved, as we weren’t sure what they would do about the ribcage, all other options were sounding pretty scary.
This one isn’t easy – the initial rod placement surgery is easy and fairly quick, but the recovery can be extremely painful. Of course, the painful part has all of our hearts beating a bit fast – because no parent wants their child to experience pain, and because in all honesty – Isaac has been through more than his share of this.
Isaac had a lot of questions about this surgery and decided quickly that he would not like to have it – he does not want anything else “inside” of him. He was very open to talking about it and is open to going to therapy to discuss his concerns and work through it.
So, this summer will be filled with lots of fun, and a little bit of therapy to get him ready for another big step. It won’t be easy, but the results will be so worth it.

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