These past few weeks have been emotionally draining on me. In the past 4 weeks this beautiful little girl of mine has had 7 more medical appointments, including two more hospital visits (one on this same day that these photos were taken) to help treat another ear infection and stomach bug.
Kalisye has been hit hard with colds since we moved, and now we are starting to really experience some of the bumps that come with her DS. We are so blessed that she has been in such good health, and while these bumps are small, it still hurts, as a mother, to see my baby struggle.
Her failed hearing test and ENT consultation has led to the scheduling of her first procedure under general anesthesia: a myringotomy with PE tubes. Her cardiology consult led to the scheduling of an overnight sleep test to assess her for obstructive sleep apnea (at the age of 16 months 😢) and her recurring cough when she drinks has earned her another appointment for a swallow evaluation to rule out aspiration.
Her tendency to lose weight quickly when sick, matched with her difficulty to gain weight, makes any little cold stressful that much more stressful. And her chronic congestion always makes breathing and drinking a bit more difficult...who knew that children as young as Kalisye could take Flonase, daily 🤷🏻♀️ While we are so fortunate to have healthcare providers who anticipate Kalisye’s needs, before they become serious problems, it never gets easier hearing that Kalisye may have to face, yet another challenge. Lately I’ve found myself questioning if I’ve been doing my part as a parent. Shouldn’t I have caught these things earlier?? How could I not have noticed that my child was having difficulty hearing?? Can any other parents relate? 🙋🏻♀️ On a very positive note, I would like to thank all of those amazing individuals (like all those at her daycare and our friends at our local Down Syndrome Association) and of course our very supportive family, who help make this journey easier, even during some of the harder weeks 💖
#KalisyeP #myupsidestory #nothingdownaboutit #momswhoblog #ds #t21 #theluckyfew