I’ve been delinquent. I apologize. There’s a lot going on here, but nothing life or death. At least not that we know of…

Ramona has been getting very busy. Always on the move, rolling, pulling up to kneeling, almost crawling and just being very wiggly in general. We had her six-month evaluation meeting with the OT, PT, DT, speech therapist and service coordinator from Early Intervention. No big changes in her treatment plan, but we will be meeting with a nutritionist to help with the process of weaning her from her feeding tube. She is about half there in terms of her oral intake. We have also decided to get her an orthotic helmet to help correct the wonky head shape she’s developed from spending a ton of time on her back. Think Charlie Brown. More on that in a second.

Simon has added another stunt to his Jackass Baby: The Movie repertoire. You may or may not know that Simon is a very adventurous eater. Yesterday he decided to eat…wait for it…CAT VOMIT. Yes that’s right, when I wasn’t looking our cat Helmut threw up an esophogus-shaped tube of pre-moistened cat food on the kitchen floor. Simon, who I guess figures I might leave snacks for him on the floor, went over and scooped up a handful and put it in his mouth. I came onto the scene when he had just discovered that cat vomit does not actually taste as good as it looks. Now a normal person might spit it out, but Simon just kept swallowing as fast as he could to get it over with while giving me a very confused and slightly accusatory look. I grabbed him, wiped his squishy hands and gave him some water to wash it down. When I put him down to go clean up the throw up, he followed right behind me. I didn’t wait to find out, but I’m pretty sure he was going back for seconds.

So Ramona is getting this helmet. We’ve agonized over it for awhile, about 6 months, and I think we’re all finally ready. I realized that my hesitance was about preserving her quality of life in the present just in case she didn’t have a future. Like if she were to die before or during her next surgery, I would regret having spent four months of helmet time that could have been helmet-free time. I’ve decided now that we should just step out in faith and assume that she has a long, happy life ahead of her. Which will be considerably happier if she doesn’t look like the guy on the Lemonheads box.

And we get to decorate it. This gives me a nice, false sense of control over the whole process. It will be fun to pick and execute a design, although it’s pretty high-pressure to pick something “perfect”. Which is why I don’t have a vanity plate or a tattoo. We’ve thought about keeping it neutral to go with all her little outfits. We’ve also thought about going for a laugh and writing something on it: “Under Construction” or “If You Can Read This, Give Me A Cracker”. But I think between the feeding tube and the helmet, we should be trying our best to preserve her dignity, so we’ll probably skip the jokes (but please feel free to pile on the suggestions!).

So all in all we’re doing well. Ramona had a mysterious blue spell today that made my own heart clench up, I’m really hoping it’s not a sign that surgery is looming. It might just be the cold she’s got, we’ve been getting one bug after another since the beginning of September. Please pray that we’ll stay healthy and well-rested. Please pray for wisdom as we continue to face some difficult decisions regarding Ramona’s care.

Love, Jane.

Here they are in the kitchen, mixing it up…