In the 15 months since then, she has been doing feeding therapy along with her speech therapy. She has made a lot of progress. Unfortunately, in this scenario, progress often means she'll tolerate a food on her plate or maybe touch it, not that she'll actually ingest it. The most useful progress is that she now drinks the full meal replacement pediasure. She'd happily live on just that if we let her, which isn't so good, but at least we have an easily transportable "safe" food that supplies the minimum nutrients she needs.
So, I come across this blog post tonight about another child with these problems. I tried to post it on facebook, but realized my heart was racing out of empathy for this mother and I had much too much to say about this to limit it to a sentence or two.
If you know us, or know someone like us, you need to read that post. It describes Secora. It describes why she's in feeding therapy. This really exists and it is not solved by forcing foods or bribing with dessert or sending them to bed hungry. These are not picky eaters.
"But I know how it feels to have nothing he can eat...and to have his anxiety so high he is in tears and to have him telling me that he is hungry."I know this feeling much, much, much too well. My anxiety "breakdown" back in 2012 coincided with a time when my 16 month old would sit with me daily and sob, "hungee....eat....." but gag on every single solid food I offered her. I still nursed her all day and all night, but she wasn't growing. We discovered Girl Scout Thin Mints were a "safe" food so the doctor and the OT said, "then feed her Thin Mints" and we bought cases of them (recently she has decided she won't touch GS cookies with a 10 foot pole...losing foods is one of the more frustrating attributes of this problem).
When reading this post, I only saw 3 differences between this story and our story:
- Secora's problems started from the beginning, there was never a regression until the hospitalization. In hindsight, I see it started with unusual nursing behavior from day 1 and she never started solid foods "normally". She was in OT because of eating problems by the time she was 1.
- The child in this post is 7. Secora is nearly 4 and has been making some hopeful progress lately, so maybe it won't be so bad when she's 7? We never know because feeding problems lead to food jags and food jags lead to "dropped foods" (things once eaten that she'll violently refuse for months).
- Unlike the child here, she CAN handle different packaging and presentation of the exact same food item. Took a year of feeding therapy to get there, but we can put juice in a different cup and it still gets ingested. Yay.
I'm also grateful to finally be at a point where she can sometimes tell us what is "wrong" with a food. It is helping us figure out ways to make certain foods more palatable and find things that she can eat. It makes me both proud and terribly sad to see her at therapy these days. She tries so hard. She willingly walks into that room every time and does what her therapist asks of her. When she can't, she suggests an alternative on her own. Sometimes she stops, takes a deep breath and then does the really hard thing she didn't think she could to. Today it was licking a goldfish cracker. Then she gagged and shuddered and heaved, took a drink, and kept working. When she gets home, she's exhausted. She typically lays on the floor or sits on my lap until nap time and then sleeps at least 3 hours. Many days, I wish I could do the same.