Month: October 2014

Feeding Paige.. This is how we do!

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.

Equipment:

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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.

Food:

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.

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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!!

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We’re also working on Puffs.

Happy eating!

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It’s been a while! Navigating my way through parenting.

I haven’t updated in close to a month and that’s really far too long.  Quite a bit has happened and we’ve had some new and exciting beginnings!

First, on August 30th our Will turned THREE!  It’s taking me a while to actually believe he is now a preschooler but he is and he couldn’t be more excited about it.  Having a late August birthday makes starting activities and school a little trickier because he will either be one of the very youngest or one of the very oldest.  After weighing the pros and cons of both we decided to place him in the 2-3 year preschool program at a little church down the street.  It is a one day a week class and Will absolutely loves it!  He’s in a classroom with 3 of his friends and he is one of the oldest in the class.  A regular morning (which is 2.5 hours) consists of play time, story time, guided areas, songs, and snack time.  When school is over, the parents meet the kids at the door and I’m always greeted with a smiling Will who proudly hands me his “to-go” folder with art.  When we go home the art is promptly tacked up on our sliding door for all to see.  He’s officially a big kid now!

His next big activity is a gymnastics class.  Will is one of the youngest kids in this class but he loves it!  The class is great because they work with what three year olds love like running, jumping, dancing, somersaulting, and more.  It’s also a pretty structured class and the teacher is sure to keep them on task.  There are a lot of multiple directives, stations, and steps that help the kids focus while playing at the same time.  I’m pretty impressed with the program but more impressed with the teachers that can wrangle a group of small children for close to a whole hour!

My goals for Will in preschool and gymnastics are to learn to play in groups, take direction from adults other than Andrew or I, and learn and grow in his own way AWAY from me.  Most importantly though, I want him to have fun!  If I were being honest, and I am, I have to say that I’ve had a little bit of a hard time letting go of the reigns.  He’s only really ever been with me during the day.  I was the one to be responsible for his schedule and social life and now I’m not the one to do it all of the time.  It’s a hard thing to just hand your kid over to someone you don’t know and not know what’s going on.  I often wonder if he’s behaving himself?  Do his teachers see what a great kid he is like I do?  Am I missing any developmental red flags that they’ll blindside me with?  Is he on track?  Am I being overbearing? Is he having FUN?!

It’s funny, if I was not a parent of a profoundly disabled child, I’m not sure so many anxieties would run through my mind.  With Paige, we knew something was off in her early months but the actual diagnosis felt like we were hit by a bus that we didn’t see coming.  I guess a lot of my fears with Will going to school and the vulnerabilities of other people “analyzing” my child kick my senses into overdrive and I fear the worst.  A fear that I’m going to be told something is wrong with my typical child.  I honestly never thought about how Paige’s Lissencephaly diagnosis might affect how I parent my other child and I’m learning that parenting the two have to be completely different.  Because THEY are completely different.

Someone put to me like this.  As a mother, I have a toolbox I use for my children.  When Paige was developmentally delayed and we tried to reach for answers, I had to use a hammer to get them.  My hammer was nagging doctors, doing personal research, and basically demanding an answer as to why Paige wasn’t acting like a typical baby her age.  We KNEW something was off and we pounded away and got validation in the form of her diagnosis.  I had to use the hammer because she needed me to advocate for her in that way.  In Will’s case, I’m having trouble putting my hammer away.  If I get a school report that he’s not playing with other kids or not sticking to a play area the designated time, my emotions go to CODE RED!  If he doesn’t follow the exact procedure or goes astray, I feel the need to bring out my hammer again.  In my head, I go back to the way I felt with Paige.  I think because something doesn’t go completely “on course” something must be wrong.  In my head, if Will doesn’t do something he’s supposed to, there must be a reason for it and I want validation.

The only difference is… Will doesn’t need me to advocate for him the way Paige needs me to.  What he is doing is perfectly normal for a child his age to do.  He’s developmentally appropriate for a typical three year old and, bottom line, he doesn’t need me to use the hammer.  He needs me in a different way.  He needs me to not expect perfection because nobody is and I’m far from it, myself.  He needs me to trust that his father and I have prepared him for a setting that doesn’t include us.  He needs me to trust that he’ll be fine! Mostly, he needs me to be his support and biggest darn cheerleader in the world.  I know my kid.  I know he’s fun-loving, smart, active, curious, hilarious, affectionate, inquisitive, and an absolute joy.  He’s got the best qualities and I have to let go of my fears that the other shoe is going to drop.  For the past year, we’ve gotten used to and accepted that Paige is on her own path and unlike any other’s.  What I’m now finding is that navigating my typical child’s growth isn’t in the same world.  BUT.. I’m getting there!

I wonder if any other family has felt this way?

In other news, Paige is showing growing leaps and bounds in her own development! She is putting more pressure on her legs, playing with toys in both hands, and even starting to feed herself with a spoon! She’s continually happy and is the most easygoing kid. She’s incredible!