Tonight Isaac, his dad and his grandpa Joe head to Minneapolis to have his esophagus dilated. This is as routine as it gets for Isaac, we have our fingers crossed that Dr. Hess decides he does not need monthly dilations at this point, but if he does we’ll return in a month. It’s never easy to send Isaac off while one of us has to stay behind, but we will always do what’s best for him.
Isaac has been a bundle of energy lately – he is mostly using his powers for good (although Eli may disagree with that statement!). He “talks” nonstop – he is becoming quite the parrot, he has difficulty pronouncing many sounds – but can imitate the words enough to copy us, we have had to start choosing our vocabulary carefully! We are excited to see how Isaac does as he has more and more speech sessions.
On the trach front…. Isaac has not been able to tolerate capping. We have tried it when he is sleeping (and presumably the most relaxed) and while he kept his oxygen rate up pretty well, he was working very hard through his chest and belly (imagine the way someone heaves after a long run). Dr. Preciado has presented the idea of using a laser to once again remove just a little bit of tissue behind Isaac’s vocal cords, giving him a slightly bigger airway. The risk with this is aspiration in the future, but Isaac is making it clear that he is just not all the way there yet. He is able to wear his speaking valve most of the day, so he is pretty darn close!
The trach thing is a bit of a bummer, he was so ready last fall. We have faith that the trach will be out, and hopefully next spring we’ll be having a big goodbye to the trach party!
In other news – sweet Ireland had a rough weekend, keeping her doctors very busy. She threw just about every obstacle she could at them, but today is doing much better. Ireland’s new colophagus (cross between an esophagus and colon!) has brought back many old feelings for us. To wait so very long to have your child “whole” (5 years in their case!), and then to have the high of a successful surgery tempered by the fears and “what if” worries can really take a toll on your emotions. Watching your child lay in a bed, unable to move or in pain is the worst sight for a parent – you are not in a position to make it better or fix them.
Fortunately, we have pretty amazing kids – and they come through each of these events even stronger than they went into them. We have seen Isaac becoming such an insightful, sensitive little boy. Yesterday a friend of his from school was crying, Isaac approached him and sat down in front of him while holding his hand. As Isaac got up he hugged his friend and patted his head…….. clearly some of his life experiences have made him into this amazing little boy!