…. when you are busy being HEALTHY!! The past year for Isaac has been nothing short of remarkable. He has been healthier and happier than we ever thought possible. He was up and walking 2 days after spinal cord surgery … Continue reading →
This is a common sentiment when it comes to Isaac. Friends and family often ask “how is he now”. Or we find ourselves out meeting strangers at a farm (which happened today) and someone inquires about Isaac’s trach….. I’ve mastered … Continue reading →
We use the word brave a lot with a kid like Isaac. He is brave, he has proven it over and over again. Sometimes though, it’s okay to not be brave. We walk a very fine line with the use … Continue reading →
… never brag about how great Isaac is doing, he will make you regret it! On occasion Isaac aspirates, the food he has in his stomach (most likely formula) comes up his esophagus and finds it’s way back down his trachea – towards his lungs and out of his trach. This happened last week. One big risk when Isaac throws up is that he can tear his esophagus, so we panic a bit when that happens.
He seems to have come out of it fairly unscathed, but typically an episode like that is a sign that Isaac needs to have his esophagus dilated. The awesome news is that it’s been about 3 months since he’s needed a dilation, and at one point we were doing them every 4 to 6 weeks! We decided to play it safe and get him to MN to see Dr. Hess for that dilation.
Of course, we decided it on Friday and scheduled him for the following Wednesday- 5 days later! This left us to find airline tickets, and a place to stay, and pack (including tons of medical supplies!) and work out all of the little detail in FIVE days.
It looks like we did it, tomorrow morning Isaac will head to MN with daddy and an awesome friend of daddy’s who’s helping us out on this trip. We are hopeful that Isaac will have an uneventful dilation and will be back home on Thursday.
We are still so proud of how brave and strong he is. He handles all of this in stride, and helps us keep our perspective with all of it.
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 🙂