I didn't even know that I was going to write an update about her when I took this picture, but very much like the pattern of her outfit, Avery is absolutely blooming this days.
Right before Christmas, I took Avery to see her nutritionist because I wasn't comfortable with how her clothes were beginning to fit her. Each day, it seemed as though there was a little extra room, a little extra sag... My suspicions were confirmed that Avery was not gaining weight and not lengthening quickly enough either. I was given instructions to increase the volume of her formula (an all-natural, organic, vegan, gluten-free puréed mixture for her g-tube) and the rate at which it infused into her stomach. I was also advised, for the first time (Avery had been prescribed this diet starting in July 2016), that this was not a complete diet for her- lacking in some calcium and protein (I'm just going to leave that right there... I'm still too sore about this revelation to gracefully discuss it in a blog post. Hehe)
We spent Christmas at the beach (as you probably know if you see my many Instagram stories and posts), without a nurse, so I was intimately aware of every single movement or hiccup she made for those 5 days (we had only planned to stay for 2, but we were having so much fun and Avery's 24/7 care was so much easier than I had remembered from our last adventure that we decided to extend our trip).
Avery soaked up every ounce of attention and co-sleeping and was happier and more alert than we had seen her recently, but this did not stop her vomiting- which she did several times during the day and night, every single day. This was especially stressful for me as the more volume we pushed (per our feeding instructions), the more she threw up and I was so preoccupied with her calories consumption! I knew this was not a sustainable program, so upon returning from our trip, I boxed up all of her formula and pulled out my blender. I began painstakingly tracking every ounce and calories- blending with a notebook beside me so I could calculate exactly what Avery was being given. Because I was blending real food and could control the thickness, I purposed to make the food a little heavier so it would be less likely to come up every time Avery coughed. Immediately, she stopped throwing up. (The second ingredient in her old diet was extra virgin olive oil. As you can imagine, every slight hiccup would send that junk right up through her mouth and all over everything... staining it forever- another sore subject. Hehe)
Another change we made after returning was to cancel all of our weekend nursing care. Our weekends have been totally revolutionized. Of course, I get less sleep, but we're also much happier when it's only us around and I can control every second of Avery's care. We have a couple great nurses, but no one cares for Avery as well as we do. It's just fact. She also prefers to spend every waking moment with her family and I can't blame her- we are pretty great. Hehe.
These changes have made all the difference. Within a few days on her new blended diet by mama, Avery began fully crawling. In the last two days, she has begun pulling up on all the furniture and scaling the sides. She has learned 25+ words, and speaks up in conversations without being prompted. She's engaging in her therapy sessions (usually a 45 minute scream fest every day) and outgrowing her previous sensory fears. (For a baby who has been forced into MRI, CT and x-ray machines more than you can imagine, toy tunnels have been her worst fear. She couldn't even look inside a confined space before without screaming and gagging.) Last week, she crawled through without a fuss, time and time again.
Her central apnea is likely the same, and she still relies on machines at night to live, but these strides in the last two weeks have been so extraordinary that the knowledge that her brain stem impairment may be permanent stings a little less. Seeing her so much happier and living life more fully makes all of this so worth it.
She has another fronto-orbital advancement coming up this year, along with all her normal hearing tests, bronch scopes and eye exams. I know we may not always get the results that we are hoping for, but Avery does whatever she wants in her own time. No textbook can predict, no doctor has the final say... Jesus and Avery are making their own way. Isn't that just life, though? We plan and plan and God ultimately directs our steps. Sometimes those steps make us angry and disappointed. Sometimes we think we know the way more perfectly, but I am so gratefully to be directed by the One who can make streams in the desert and paths where there has never been one. I can't do those things, so even when the steps feel like walking on thorns for miles, I know that following Jesus will take me to the best destination, with miracles along the way and joy even in the suffering.
Jesus can always make a way, do you hear me, Avery's Brain Stem??? 😉
If you kept reading till the end, much love to you. Jesus can make a way in your life too.