Packing in the calories for Hermione since the cleft repair isn’t the easiest thing. We’ve had to get creative in order to help her grow (and we’ve seen some great weight gain in the past couple of months, she’s closing in on 20 lbs FINALLY!)
When she was on formula, we could just fortify it to squeeze them in. But we’ve been off of formula for three months now, and are on solids completely. With a cleft palate child, all of those food introductions get wonky. Normal kids get solids introduced slowly starting at 6 months, then gradually move to table foods by 18 months. Hermione didn’t get to start solids until she was more than 14 months old because of her palate. Most babies learn solids slowly, she got a crash course. She had to learn in a whole different way how to move foods to the back of her mouth.
Her palate is closed but still short and her uvula doesn’t quite fit to block the entrance to her nasal cavity, so we work hard to keep it from coming out of her nose. Table foods help a lot with that. But she does eat some mushy kinds of things, like this recipe.
We aim for 1200-1500 calories per day. A normal 18 month old weighs 25 lbs and needs 900 calories to grow. Hermione is 20 lbs and has always needed more calories to gain, and that’s still the case. She burns more than normal kids, mainly through all of the awesomeness that she creates during the day. With four little mouths to feed, getting those kinds of calories into her can be a little insane. Hermione has the same thing for dinner nearly every night and this is it. She scarfs it and sleeps from 6:30pm to 6:30am on a belly full of super peanut butter applesauce. It’s working well for now, but part of the fun of kids is that things are always changing!
- 3/4 cup applesauce (Yes this is the kind with added sugar, that’s intentional. We’re really just trying to pack it in with her)
- 2 Tablespoons peanut butter (again, the kind with added sugar.)
- 3/4 cup baby cereal
Mix the applesauce and peanut butter. Heat until warm in your method of warming (microwave, stovetop, whatever you like). Mix in the baby cereal until it’s really chunky and thick, see below. You can add a little soy milk if you want it thinner, or use less baby cereal.
Protein 10 grams
Carbs 78 grams
Fat 19 grams
Sodium 103 mg
Jude’s godmother, a childhood friend of mine (Trisha you’re awesome!), is forever sending the most awesome care packages for the kids. In all seriousness she is one of the most thoughtful people that I have ever known.
A couple of years ago she sent this book for the boys, Shark vs. Train. We’ve read it dozens of times, but hadn’t touched it in months. Yesterday the boys rediscovered it, and wow we read it over and over.
Shark vs. Train starts out with two little boys (who look strikingly like Yeats and Jude) running for the toy box, where they pull out a train and a shark. The book is then the story of what happens when a shark and a train compete in various tasks, from selling lemonade to trick or treating to playing basketball to jumping cars Evil Kenevil style.
The pictures are just wonderful, incredibly detailed and just cartoonish enough to really appeal to a 4-7 year old. There are enough surprises in the details to keep us looking closely with every reading. The book is written with some tongue and cheek style to engage the parents as well as the children, which is wonderful considering we tend to read our favorite books several times a day.
One of the best parts of the book is that the boys go to replay the story! Immediately Jude ran to his room to grab his shark and the train. Then they played in the living room with them for the longest time. I love books that inspire play and especially creative play, which is a super aspect of this one.
We read a LOT of books in our house. Some become staples and favorites, others we only read once. Shark vs. Train is one that we come back to again and again.
Click on the picture below for a link to where to buy this great book for a kid in your life! Or go check out your local library.
Shark vs. Train
After a week on Clonazepam (Klonopin) to ward off seizures while she was getting past infected ear pits, Hermione is finally weaned off.
This drug is such a blessing, as it allows her to stay off daily seizure meds like Keppra, but being on and especially coming off is no fun at all. We give it to her whenever she gets sick, or when lately when she isn’t visibly sick but has a short seizure that doesn’t require doctor care but can potentially lead to a bigger one.
While on, it makes her grumpy, sleepy and dizzy (we know this because her balance issues get worse while on it) and when she comes off the withdrawal can be brutal. We wean her to a half dose for a day or two before we cut her off. While coming down from the med, she’s so grumpy! And jumpy. And once we cut it, her reaction is like clockwork. Little sleep at night and no daytime nap, followed by her just zonking out. And when you have a kid with a history of seizures who sleeps like that, the thing in the back of your mind is wondering whether she seized when you weren’t looking and is now postictal, or if it’s just that she’s sleepy.
I know some adults who have been on Clonazepam for short stretches. They tend to say that it’s rather traumatic. People can hallucinate and loose touch with reality. And the withdrawal is pronounced. Makes me wonder intently about what is going on in her little body and head when all of this is happening.
But the great news is that thanks to this medication, we’re three months without an ambulance ride! HOW AWESOME IS THAT?? Pretty darn awesome. As such, the pills are worth it, warts and all.
(Quick followup to this post: We did have an ambulance ride four days after I posted this originally on March 9th. We used Clonazepam as a rescue med, which has worked on a couple off occasions and is an off label use. This time no dice. She only seized for 12-15 minutes and was done seizing before EMS took her out of the driveway. No PICU stay. Still no fun!)
Wishing a super happy birthday to my mom! She doesn’t like having her picture taken, so Hermione was kind enough to cover her grandma’s face. Such a beautiful and strong woman. I’m incredibly blessed to have her for a mom.
Also thanks to my grandmother, who to be fair did all of the work on the day Mom was born.