Hey everyone! It’s been forever since I’ve updated on Emmy Klemme. She is the smiliest, happiest, loudest little gal! She’s a really fun age - pulling up and cruising all around the furniture. Trying to gain confidence to take her first steps all by herself! Summer is going to be really fun and busy.
We had a swallow study today and she didn’t make any progress. I’m super bummed :( We have to thicken all liquids to nectar-like thickness. We currently use oatmeal cereal and gel mix to do this. Anything that is not thickened is aspirated to her lungs, which of course would cause pneumonia. The ST doing the swallow study today said that her epiglottis is delayed in closing. So when thin liquids go down her throat, the epiglottis does not shut, so her airway is just open. Honestly, thickening is not that big of a deal, but you just want “normal” for your child.
We hadn’t been using the g tube for a month or so and then Emmy got two ear infections, strep, and then another gi bug. (Thanks, daycare ;) LOL) Just kidding, we love daycare. But, she will hardly eat when she’s sick so in that sense, the g tube is a blessing!! We’ve had to start using it again at nights to get her those extra calories. Due to sickness, she lost some weight and isn’t quite caught up on gaining it back. She was only 17 lbs 9 oz today. They are recommending adding butter, cream, avocado, peanut butter etc to her foods to fatten her up. And whole milk with heavy whipping cream to make “super milk” for her! Sometimes she’s a great eater, sometimes she hardly wants to eat. It’s stressful to me. You just imagine your child will sit at the high chair and chow down, pack on the lbs, and get chubby cute rolls, and well, that’s not really how it’s going for us. We just offer her all the foods and hope for the best!
I had the courage today to ask how long we will have the g tube. The pediatric surgery doc said she will want her to make it through another Winter without use before it will be taken out. It helps keep us out of the hospital because we always have a way to hydrate her that isn’t orally. Again, the g tube is a blessing, but also a total pain lol.
Overall, I have to remind myself that these are not huge things and how well she is really doing for being a 26 weeker!! She was only 1 pound 5 oz at birth and has done every little thing ON HER OWN TIME!
Please send a little prayer or good vibes or whatever you do for Emmy to gain a bit of weight!!
Laura Klemme
