I can’t believe my sweet boy is 15 months old already! His first year was one for the books and, having just gone through this with TJ, we have so been looking forward to all of the exciting growing and changing that happens when babies turn into one-year-olds. Jacob’s first year was full of appointments, tests, and a lot of time figuring out how best to treat and handle his various health issues. We knew there would be some follow-up in his second year, but we were really hoping to have all of the figuring out and diagnosing behind us by this point. Well, that’s not the case. At his 15-month appointment, we learned that he needs to see General Surgery and possibly start Physical Therapy. As a mother, it’s so challenging for me feel like he’s struggling or uncomfortable or anything other than perfectly healthy; but, I know we are working to get him the care and follow-up he needs and I’m hoping that he will grow out of as many of these things as possible!
Feeding/Swallowing and Belly Trouble
Jacob had a Modified Barium Swallow Study at Boston Children’s Hospital a few weeks ago to check on his laryngomalacia and see how his feeding therapy has been helping. The good news is, his swallowing is greatly improved! We’re still working on thinning down his liquids, but the feeding therapy has been working really well for him and teaching him how to swallow safely. The not-so-great news is that he’s still choking a little bit when he drinks, so he’s technically still high-risk for respiratory infections, but, fortunately, he’s only had one and it was pre-COVID. The hospital has so many safety guidelines in place that we felt as safe as possible going in and being there for the study. It was definitely a strange feeling being in such an empty hospital, but we are always so grateful to have such an amazing resource so close to us.
We’ve also been able to wean Jacob off of his reflux medicine, which is a huge step forward! He still has some foods that don’t quite sit right with him and give him some belly pain, but we know what those are for the most part. One of the new developments with Jacob’s GI journey is that he hasn’t gained weight in quite a few months. It’s not immediately obvious when you look at him since he’s always been a good size baby and he looks perfectly squishy, but he’s been stalled at his current weight for about 6 months. We expected his weight gain to slow down and his weight percentile to drop since he started in the >99th percentile and stayed there for a while since he did a lot of breastfeeding for comfort in the beginning, but this is one of the things that I’m most worried about right now. We have an appointment with his GI doctor on Monday morning, and it’s the first thing on my list of questions!
FPIES and Dairy Allergy
We’re so grateful that Jacob has such a long list of foods he is able to eat safely, and that he really does love eating a good variety of foods. The trouble with Jacob’s FPIES is that his triggers are really some of the most common ingredients in a lot of prepared food – rice and oats are in basically everything. We haven’t gone out to eat as a family since COVID, but we have ordered in a few times and we haven’t found anything we’ve been able to order for him yet. Even grilled chicken usually has something that’s not safe for him to eat in the seasoning. So we’re still following with Jacob’s Allergist and keeping them updated about new foods that may be potential triggers, but hopefully we can just keep our annual appointment and not need much other follow-up!
We tried to introduce dairy a few weeks after Jacob’s first birthday, and it didn’t go as well as we had hoped. He didn’t have any hives or other signs or true food allergy so that was really great, but he did have a lot of GI trouble. I started by just using regular butter in the pan I use to make his scrambled eggs, and then after two days of that I mixed regular milk in with his eggs instead of Ripple, and let me tell you, the boy’s belly was not happy. After a tough 48ish hours, he got everything out and we haven’t tried again. His pediatrician is so glad that he doesn’t have a true milk/dairy allergy and feels we should give it another shot, but I just feel so bad giving him something I know will hurt his belly, even if it’s just a learning/adjustment curve, so I think we’re going to continue to hold off for now. He’s doing great with all of the dairy alternatives we’ve found, so this is one boat we’re not going to rock for the time being.
Next Steps and New Specialists
In addition to all of the belly, allergy, and feeding/swallowing things we’re following, Jacob also has a kidney condition called hydronephrosis, which basically means his urine has a hard time getting out of his kidney, so we have a follow-up kidney ultrasound scheduled for around the time he turns 18 months. We’re also going to see General Surgery in a few weeks for another new issue that I’m not quite sure what to make of yet…more on that as it develops. And, the biggest and hardest thing for me, he’s still not walking. I know there are plenty of kiddos who don’t walk until after 15 months, but I am pretty worried it’s another piece to a bigger puzzle with Jacob so we’re going to start with an evaluation and possibly some Physical Therapy.
Phew. It feels like a laundry list and there’s always another appointment to schedule or test to have, but I know that in the grand scheme of things, he is just fine. Despite the challenges he faces and the “abnormal” first year he had compared to his brother’s, our sweet Jacob is happy, curious, so smart, and such a lovebug. He’s also fiercely independent and such a trooper – I don’t know if it’s because he’s so used to going to these appointments and having tests done, but he never even blinks an eye, even when we trick him into thinking he’s going to drink milk and hit him with a cup full of barium haha. I can’t thank all of you who check in on Jacob enough – your support means the world to us!
xo,
Stephanie
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