One thing that Paige has always been “good” at is eating. From the day she was born until about 14 months she breastfed like a champ. I started her with rice cereal at 4 months old, just as I had with Will, and progressed to Gerber purees in the following months. While Will refused to take a bottle until he was around 8 months old, Paige welcomed one with no problem. While she was lagging in just about every other milestone, eating was something that just seemed to come naturally… but not perfectly.
She still spit up her milk on occasion and gagged on thin purees. She coughed in between bites here and there were times (and there are still times) she chokes on chunks of food resulting in a total loss of a meal and a huge mess to clean up.
A common concern for children with Lissencephaly is aspiration from food or drinks that could lead to pneumonia and other pulmonary infections. A lot of times, Liss kids die from infections like these so we’re super careful about what and how we feed her. We like to be as prepared as possible so when she was 9 months we scheduled a Feeding and Swallow Study at the Children’s Hospital to see just HOW she was eating but mainly to see if she was aspirating any of her food and drink.
The study consisted of feeding Paige by bottle, breast, and by spoon. Although we found that she was indeed NOT aspirating, we still had some work to do. Paige had a lazy latch and got tired on the bottle and any thin purees were usually thrusted out of her mouth with her tongue. The solution was a change in bottle position, lots of breaks, and thickening purees to a consistency that she tolerate.
Feeding Paige has been a complete trial and error since she started pureed foods. There’s no blueprint for what to expect for her, eating wise. Currently, at 16 months old, she is eating at a 10-11 month old level and we’ve worked hard to get her there! Every week, her Occupational/Feeding Therapist spends a half hour working on feeds with her and we have a Nutritionist come to the house to make sure she’s getting all of the good stuff she needs.
Like I said, there aren’t a lot of role models for feeding Liss kids because they’re all so different so I’d like to share what’s been working for us, so far.
Top: Mealtime Notions baby spoon. It’s bendy and textured and is easily grasped by little hands. If your kid is anything like Paige, we use the “hand clutching” to our advantage and let her grab on. Add a little taste on either end and, if we’re lucky, Paige brings the spoon to her mouth!
Middle: Nuk brush. This tool is used before feedings to massage her gums, roof of her mouth, tongue, and lips to promote sensation. This tool is especially helpful during teething because kids are more prone to bite down on the end which is something we want Paige to learn for eating solids.
Bottom: Nuk flat spoon. This spoon is AH-MAZ-ING because it is flat and wide. To stop Paige’s tongue thrust, I use the flat end to push down on her tongue during feeds. I’m essentially stopping the thrust and forcing her to use her lips to cover the food and keep it in her mouth.
I’ve been having a BLAST with making Paige’s food. I’m trying to nix the Gerber as much as possible because,
1. It’s expensive.
2. She’s not a baby anymore.
3. l have more control over her nutrition.
My grandmother gave me a Ninja Bullet and it has made my life SO much easier. I previously had the Baby Bullet but it couldn’t hack some of the proteins I was trying to puree and it sadly burnt it out. Anywho, making the foods I want for Paige has been so easy and I know she’s getting the nutrition she needs.
Here’s what I do:
1. Buy any assortment of fruits, vegetables, and proteins.
2. Puree food in Ninja (or any blender or food processor you have) to desired consistency. (I like to make my purees a little thin because I like to thicken it myself with oatmeal or grains for added calories). Also note that if adding calories are a goal, like they are for us, use chicken stock for your vegetable and protien liquid and juice for the fruits.
3. Pour puree in ice cube trays and freeze for 2 or more hours until frozen.
4. Pop out and place in gallon sized plastic bags.
Here is my stock pile from yesterday made entirely of canned and frozen fruits and vegetables. I pureed canned spinach, black beans, mixed vegetables, carrots, peas, green beans, garbanzo beans, wax beans, blueberries, pineapples, peaches, pears, and a tropical fruit mix. I also had pureed ham and chicken from the day before.
What’s awesome about this is you can mix and match to make an actual meal and different ones every day! All kinds of vitamins and minerals and all that good stuff. It’s also very easy to measure because each of my ice cubes is 2 ounces and I know how much she is getting.
Paige’s feeding schedule is something like this (omitting bottles):
Breakfast: Greek yogurt with one ice cube of fruit. I nuke the fruit for 30 seconds and mix in the yogurt.
Lunch: I mix and match 2 different vegetables with a protein. I thicken it with either baby oatmeal flakes or grains to the consistency she likes. This is a little over 6 ounces of food.
Snack: 4 ounces of applesauce or 2-3 ice cubes of fruit.
Dinner: 2 vegetables, 1 fruit, and 1 protein thickened with oatmeal flakes or grains.
Snack (if needed): 4 ounces of Cream of Wheat cereal with whole milk.
I’ve actually started to have a lot of fun making Paige’s food and I’m thinking of blogging more recipes to share! I’ve got so many ideas!!
We’re also working on Puffs.