Finally finding the time to write out our recap of a HUGE two weeks! This is a long update, so buckle up. 

During the Thanksgiving break Joy developed a yeast infection on her head (caused by excessive sweat) that prompted a 2-day total break from and a rigorous cleaning regimen of the helmet. We are now on a slow re-break-in schedule, working towards wearing the helmet 23/7 again but currently not wearing it overnight. The doctor is concerned it’ll want to come back so please pray that it doesn’t! 

Also during the Thanksgiving break, something inside Joy clicked and she started finishing every bottle I gave her with 100% consistency. The only time I ever used her feeding tube was purely for my own convenience sake- her overnight feeds, while traveling so we didn’t have to stop, etc. If you’ve been following along with Joy’s story for a while you’ll know how big that is, but to illustrate how much of a big deal this is: Joy has not completely finished a bottle on her own since getting her feeding tube placed in September, and even then it wasn’t consistent (she wasn’t typically finishing her bottles which is why the tube was initially placed- to feed via tube what was left in the bottle to ensure she got the full nutrients and calories she needed). After getting the tube she slowly became more tube dependent, and right before her surgery she was at a point where she’d only intake MAYBE half an ounce out of 4 by herself on a good day. I had voiced this concern over and over but was met with all kinds of resistance on trying to help her with her feeding skills to ensure she didn’t become completely tube dependent, mostly explaining the goal right now is getting her weight percentile caught up to where it needs to be and that we’ll work on her feeding skills to wean from the tube later once she’s hit that mark. 

We met with her Craniofacial/cleft team last Tuesday for her post-op which went well (she’s healing great!) and during that visit one of the team speech pathologists I had never met before stopped by. I excitedly shared about Joy’s at that point full WEEK of consistent bottle completions and was STILL met with the opinion that Joy wasn’t ready to get off her tube. Joy’s weight percentile has dropped to the 28th, having gained only 3 oz over 3 weeks. This could potentially be explained by Joy’s surgery and the stress that has caused on her body, but we are also starting to wonder if maybe Joy has something off with her endocrine system. It wouldn’t be surprising as part of that system runs directly alongside the Corpus Callosum, but she hasn’t yet been tested for it. We have referrals to that department in the works.

The speech pathologist went as far as to say we needed to start talking about getting a surgically placed G-tube that goes directly into her stomach via a port (Her GI doctor tried to push this on me before her surgery to which I promptly responded with a resounding HECK NO. So the fact I’m now getting hit with this from another medical team infuriated me). I naturally starting arguing with this line of thinking. Why on earth does Joy need an extremely invasive surgery to put in a feeding tube when she hasn’t even needed the one she has for a whole week?? The answer I was given was that because Joy has a history of oral aversion and feeding distress (and still does- she will only eat for me, not Daniel or anyone else who tries, and only in one very specific position) she will need to show that she’s over it before they can comfortably agree to wean her from the tube, and since you’re not supposed to have an NG tube in for longer than a few weeks (she’s had one since mid September) and certainly cannot still have it during her palate repair surgery in May, we needed to move to the next step of getting a surgical placed tube. 

Well it’s almost like Joy understood what the doctors were saying so when we got home from our long day in Dallas on Tuesday, she promptly threw up the end of her feeding tube. I used this as an opportunity to see how long we can go without having to put it back in. It’s now been nearly a week and it’s still out!! Joy has been a CHAMP at finishing her bottles. I am so incredibly proud of her! The only concern of Joy’s pediatrician with coming off the tube is monitoring Joy’s weight gain to make sure Joy isn’t now expending too much energy eating all her bottles that she stops gaining adequate weight. Our next weigh in be on December 16 so please pray that Joy continues to gain weight well!

Through all of this, everyone on Joy’s team has failed to even consider starting to address the **WHY** behind Joy only eating being held by me in a specific manner. But Joy had her evaluation with the Texas ECI feeding therapist on Thursday and talk about a Godsend! In her one hour evaluation of Joy she determined that the left side of her mouth is much stronger and more developed that her right which perfectly explains Joy’s eating behavior. When I learned this I wanted to cry tears of joy— finally someone is ready to help Joy improve at what I know she’s been able to do instead of sticking a band-aid on the situation by defaulting to continuing use the feeding tube. We will begin therapy soon to strengthen the other side so she can eat from her bottle like a normal baby 😅

Texas ECI physical therapy came by this morning and she agreed that the helmet is slowing her progress in many aspects of her motor skills, particularly when it comes to head control. But overall she was very impressed with the way Joy was moving! She observed that Joy’s left and right sides of her brain seem to be talking to each other well- which is huge considering her ACC! 

I’m very excited for the ball to start rolling for both of these therapies. They are going to help Joy out so much!! 

Please pray that Joy continues to eat her bottles well! And for my conversation with her GI doctor on 12/16 to go well. They don’t know Joy’s tube is out (her pediatrician and cleft teams do) and I’m expecting to get some serious pushback from them about keeping it out when they didn’t think she was ready. But I stand by my decision- what purpose is it serving if it’s down her throat but not being used?? 

Thank you all for the continued prayers and support!!