Dysphagia Continued…

Since Lala was nine months old, she has had every liquid thickened to a honey consistency. She has never had ice cream or soup and only had a popsicle twice. For her third birthday, we had cake with chocolate pudding. It was more successful than ice cream would have been, by the way.

Last month she had her seventh swallow test – she has had one every 6 months for the past two and half years. It was hoped that she would outgrow the dysphagia, but in over two years, she hasn’t shown any improvement. In fact, at one point she actually complete aspirated the barium and didn’t make a peep. No cough, no sputter. Really, that’s not good.

We now had a decision to make. Either continue as we have been or start looking for cause. We saw a new ENT specialist on Saturday to start that ball rolling. He doesn’t have the full picture, but given her history, he believes that she may have a laryngeal cleft. Although leaving well enough is a viable option, she is growing up (as she keeps reminding me). She already begs for juice boxes “like Bobby”. Juice boxes cannot be thickened before drinking, that straw hole is just too darned small! And pouring it out into a cup is just not cool. Can you hear the screaming fit on that one? My ears are still ringing.

I can’t watch her for the rest of her life and kids make bad choices when faced with a restriction – it’s just a fact. Retainers are lost, glasses are broken, make-up gets put on in school, healthy lunches are traded away… you know you did it too. However, that juice box isn’t just an expression of independence. It represents another respiratory infection – possible damage to her lungs, scarring on the ear drum, pneumonia, hearing damage, etc. If we can fix it, we need to do it.

Our next step is Laryngoscopy. Lala will have to go under anesthesia for the procedure – not looking forward to that – but it should only take a few hours. At that point we will find out if what exactly is going on and how best to proceed.