Breakfast - Bento style

Mornings are not my friend.  I'm a night owl and likely always have been.  I fondly remember my teenage years where I'd stay up most of the night then lounge in bed the next day sleeping until well past noon.  Thanks Mom and Dad for being so cool with that!  These days I don't get to sleep so long the next morning but I do have a tendency to stay up well past a reasonable hour.

When I rearranged the living room furniture a couple of months ago Chris' only comment when he came home to the new layout was that he was thankful that I did it during the day rather than at 10pm.  Seriously.

This year Emma moved to afternoon pre-school and we are both taking advantage of the schedule to sleep in a bit.  I usually wake up between 6:30 and 7am and finally venture out of bed around 7:30am while Emma gets up anywhere between 9 and 10am - and that's because I wake her!  She's a night owl, too.  

Unfortunately Julia isn't as lucky and leaves the house a little past 7am for school.  To help ensure she is eating a more balanced breakfast (3 waffles with butter isn't a my idea of a good start to the day!) I started making a breakfast bento-style box at night and it's all ready to go for her in the morning.  I don't have to wake up early to fix a meal and she LOVES the boxes because they are cute and have a lot of variety - it's a complete win-win!  She has even started to help me fix them the night before and I'm happy she is taking an interest in creating balanced meals.  

The bento boxes I use were purchased from Kangovou at a steep discount thanks to GMA Steals and Deals a few months ago.  I bought one for Julia and one for Emma for our summer lunches and figured they would also be helpful for Emma's school lunches starting in the Fall.  There are 5 various sized compartments and Julia fell in love with the containers as soon as she saw them.  She really loves "cute" when it comes to her food.  

Since Julia is on the school food plan and doesn't bring any food to school we decided to use it for school day breakfasts because she really wanted to start using them.  I try and make sure there is a vitamin, fruit, dairy and protein in the box and try and mix up the contents each day.  Here are a few examples of her bento breakfasts:

Organic strawberry yogurt, organic strawberries and blueberries, Club crackers, and an organic egg/hashbrown muffin.

Organic strawberry yogurt, vitamin with a few sprinkles to put on top of the yogurt, cucumber slices, 1/2 orange, PB&J on a Pancake 

Julia making her breakfast:  Organic Banilla yogurt, some pink sprinkles for the yogurt, homemade pumpkin bread, vitamin, organic strawberries and blackberries

Julia loves her "special" breakfasts and asks me to make her one most weeknights.  I'm amazed at how just adding this simple container to the mix has changed her morning eating habits.  We've even added in veggies such as lettuce in one of the bins and she is happy to gobble it down at breakfast.

I have also made a couple of bento boxes for Emma when we've been on the go all day.  Her food is mostly pureed so I use the press and seal Saran wrap over the compartments that have runny foods like applesauce and I store it flat in an insulated bag.  So far it hasn't leaked and Emma seems happy with a bit more variety to her foods.

I think it's safe to say that these little containers will be in constant use this summer and beyond!

Messy Mealtimes

I'm finding life messy lately.  I mean, take a look at the aftermath from tonight's dinner:

As you can likely tell from this photo, most of the mess is from Emma.  The good news is that she is not happy unless she gets her hands on her spoon to feed herself.  The bad news is the dog doesn't like to walk on the kitchen floor so clean-up duty falls to us.

Emma can't really feed herself so we help guide her spoon to her food, scoop the food and then help her guide the spoon to her mouth.  She has a certain spoon that she loves to eat with - it's the pink one on the floor near the empty bag that held the Valentine's tattoos that she is giving to her friends (mealtime bonus:  Emma will clear the table of anything in front of her in 2 seconds flat if we don't do it before her).  The spoon is made by Sassy and we have ONLY ONE.  We had one for a long time before Emma decided she liked it and would only eat from that ONE spoon without crying.  I decided this would not do - we must get a spare.  And so just when I let myself think we need a spare Murphy's Law kicked in and we LOST the one we had.  I'm thinking we must have left it behind at a party over the Christmas holidays.

Emma humored us by eating off her Z-vibe soft spoon a bit but she wasn't too happy with it.  I scoured local stores and the internet to get a spare thinking it would not be a problem.  Turns out this little spoon that I originally purchased at Target is an endangered species.  I finally found one at a Toy Train store (?????) and paid a small fortune to purchase their very last one and have it shipped to us.  If anyone sees a Sassy spoon with two spoon sides and the guards at each end which prevent Emma from putting the spoon too far into her mouth and choking herself by mistake - I think these guards are the main attraction Emma has to this spoon - please pick it up and send it to me and I'll reimburse you for the cost.

I wish I could say this photo is an exception to most of our mealtimes, but it's not.  Progress with feeding is messy business.  Really messy.  Especially when Daddy is helping Emma eat, which is not the case in the above photo.

We are making progress in feeding.  And I'll trade the clean house award for my child progressing on eating any day!

Bigger girl food

Emma still keeps us on our toes when it comes to eating.  She can go for a couple of days when she doesn't want to eat and will only drink smoothies followed by a few days of wanting to eat everything in the house.  I've learned not to get too worried if we are on day 3 of her not wanting to eat anything and that's when I stock up on some of her favorite foods in anticipation of the feasts she will want again soon.

But frequency of eating isn't the only thing Emma's changing these days.  She wants to eat more and more table food even though she isn't really ready for more solids without choking.  She wants to sit in her Childrite chair instead of her Special Tomato seat.  She wants to feed herself even though she needs lots of hand-over-hand help.  And if any dessert or sweet item is brought out before she is done her meal she promptly refuses to take another bite of her meal and demands to move on to dessert.

And so we are once again following her lead.

We stopped pureeing her food and are either chopping it up finely with the Pampered Chef chopper (that's been hanging our in our kitchen for ages looking for a reason to be used) or using the container that came with the immersion blender we purchased for her birthday.  The container is nice because it is an in-between texture of chopped and pureed and results in a bit of a chunky consistency.  The blender is the Cuisinart cordless rechargeable immersion blender with a couple of attachments.  We thought it would make travel easier if we didn't always have to preplan meals and bring them along - especially for when we are going someplace for a few nights - and would make eating out easier as we could just blend the restaurant food up in the cordless contraption.  We've found that it is very handy at the house, too, and it is often used several times a day.  (Note:  In case you are looking at purchasing one of these blenders, we purchased this item at Bed Bath and Beyond.  Emma and I went to the store to see it in person but it's an online only item.  However, if you order it at the store you can use the 20% off coupon that always comes in the mail.  Emma gave the cashier big smiles and turned on the charm so they also shipped it to our house for free making it a pretty good deal.)

For dinner tonight we had tacos.  Everyone in our house agrees that tacos are great so it was an easy Friday night meal eaten without complaint.  Since tacos would be hard to "chop" and then feed to Emma I just used the container attachment for the Cuisinart and it did a great job of turning the food into a form that Emma could enjoy.  Emma loves tacos and today was one of her eating days (horray!) so we even had to mix up another batch because she wanted seconds.  That made this Mommy quite happy!

For the last few weeks Emma has been putting up a fight when it's time to go into he Special Tomato chair to eat.  I'm not really sure why since she actually likes this chair.  Maybe it's a phase?  Anyway, we've been using her Childrite chair at the table on days when she won't use the Special Tomato.  It's not our preferred chair for meals since she sometimes tosses her head back and bonks it on the hard wood chair.  Also, it's not really secure and we don't want her to tip over and fall out of it so we make sure someone is right next to Emma at all times.  She seems to love this set-up even if we are less than thrilled about it.  I'm sure that, as with all things Emma, she will shake up where she wants to sit yet again and go back to her Special Tomato for eating.

So today I'm thankful that Emma continues to make progress with her eating.  That she is undaunted by the challenges she faces with her oral motor skills and her fine motor skills and is determined to one day eat table food independently.  That makes me very thankful, indeed!

Eating Update

Sometimes it's hard to see the amazing progress Emma is making when there are so many things we are working towards.  A friend reminded me of this over the weekend and so I want to take some time to celebrate how far Emma has come at mealtime.

Meals with Emma were a challenge from the beginning but her recent progress with eating and communicating is making meal times more enjoyable.  The fact that Emma takes all her food and drink by mouth and has never had a feeding tube is somewhat unusual for children with Emma's challenges.  Many children use a feeding tube for reasons that span the spectrum from using it to supplement meals all the way to completely replacing oral feeding.  Emma's slim body along with all food/drinks taken by mouth has - at times - made for some stressful meals but now we are at a good spot with eating.  She has a desire to eat and is really motivated to eat table food but her chewing and eating skills are limited and put her at a high risk for choking.  Her doctors (and us!) want her to continue progressing towards table food so she had an evaluation at the Feeding Clinic at CHOP which is rated as the best feeding clinic in our area.  

The evaluation overall was good.  It seems like we are doing all the right things to help Emma achieve her goal of the eating food off our plates instead of her own plate ;-)  We are moving her towards thicker and chunkier purees, giving her mashed foods, offering her meltable foods, assisting her with self-feeding.  Emma sooooooo wants to hold her spoon and feed herself!  The feeding team gave us a few suggestions including focusing more on drinking from a cup and having her therapists at school carry-over the suggestions during snack time.  Overall, though, it seems like we are already doing everything right to help move her along in starting to eat more table foods.  It will just take time and practice.  I do have to confess that I was slightly saddened that they couldn't give us a magic pill...

Since Emma isn't independently eating and she would like to have more control at meals we continue to use the iPad during meals to give her a voice and more control.  She uses it really well most days to let us know if she wants to eat or drink. We had been using the program Proloquo2go but after working with it for a year and a half we decided to try out another program.  Emma's friend had been using My First AAC app and when I saw her use it I knew it would be good for Emma since you can LOCK the screen so it doesn't keep scrolling which was one hurdle with Proloquo2go.  This feature along with the pre-made categories filled with pre-school age words really makes this program a good fit for us.  

Here is a video from today's lunch.  The screen is set up with two icons - Milk and Fruit.  The program allows for the screen to display up to 8 options but Emma's motor control isn't good enough to accurately select between 8 items with her hands and 2 seems to be the magic number for her accuracy.  Her communication being limited by hand motor control is a key reason we are moving towards the system that uses eye gaze technology - we don't want Emma limited to choosing/saying only two items at a time.  Anyway, we use Milk to mean drink and Fruit to mean eat since we can only show 2 items at a time.  Emma knows this and is quite good at requesting what she wants without prompting.  Using the iPad during meals has cut down on lots of crying when we are trying to guess what Emma wants.  You can see the screen of the iPad at about 1:05 into the video.  

Note:  I would say that sometimes I could forget to focus on the fact that Emma now has a method to request food items that she uses consistently during meals and that she actually takes all her food/drink by mouth and instead focus on the fact that Emma can be quite messy while eating.  But, I'm learning to celebrate her progress rather than focus on what we are still trying to improve!

Here are a couple of more videos from the other day.  Notice how Emma has the choice of two different food options - a chunky applesauce and rice krispies with almond milk.  Both are harder for her to eat than a puree and she is able to request which food item by her protest sound or happy sound.  It will be nice once we have our own Eco2 so we can program it with multiple meal items that she can access via her eyegaze instead of being limited to 2 options as she is right now on the iPad.

Mealtime Communication

I've been trying to have Emma "formally" communicate a bit more during meals.  This is a bit hard for both Emma and us, but I'm convinced it will help in the long run.  Because we are not always there to feed her and others might not know Emma's subtle communication methods I would really like to give her a voice during meals that is understandable to others outside of me and Chris.  

Emma is excellent at non-verbal communication - batting my hand away if she doesn't want food, opening her mouth and even sometimes saying aaahhhh when she wants more, reaching out for what she wants if we give her a choice, leaning over in her chair if she doesn't want that person to feed her (she really has a strong preference to have me feed her), face lighting up if we ask her does she want something that she does want, etc.  She is also excellent at crying and whining during meals.  Oh, how I love my girl!

In Proloquo2go (on the iPad) the Meals & Snacks option has two items - eat and drink - and we have a cut out cover that goes over the iPad to make it easier for her to select her choice.  I took a video of our lunch session yesterday and it went pretty well in that Emma eventually chose the items she wanted on the iPad.  You can also see a lot of her non-verbal communication in this video along with hearing her more frequent vocalizations.

I'm happy for this progress.  Slow and steady progress wins the race.....slow and steady progress.  Learning to eat is a slow process.  Learning to communicate is a slow process.  Learning to communicate while eating is a s...l...o...w process.  I certainly wouldn't mind if it sped up a bit, but I'm happy for the strides Emma is making and that all her hard work and determination to eat table food is working.  Seriously, Emma rocks my world!

What does Emma eat?

Emma enjoying her birthday cake

One topic that often comes up with parents of children that are poor weight gainers is food, glorious food! I've already done a post on the challenges of getting Emma to eat and I'm so thrilled that she has recently gained a lot of ground in eating better! I think a lot of the changes we made to the diet along with all the oral motor exercises are a large reason for her improvement, so I thought I would share a bit more on this subject.

We like to provide a lot of variety in Emma's diet and do not have any real dietary restrictions other than keeping her consumption of whole milk to an absolute minimum to help with her reflux. Here is what Emma could eat on a typical day:

• Emma's main drink is a mixture of mostly almond milk, a bit of unsweetened coconut milk and Metagenics Ultracare for Kids. This replaced the Pediasure that left Emma with constipation and reflux issues - since switching drinks we've pretty much eliminated both. I'm not recommending this for others, but if you do want to consider this drink please check with your nutritionist for the recipe.
• For breakfast we do a variety of different things, depending on the day. We do smoothies on the days that we have to be out of the house quick since it gives her great nutrition and she drinks it without any problems. Other days she could have some organic baby cereal or oatmeal with an adder. This fall her favorite way to eat cereal is with apple butter or pumpkin butter mixed in. We also give her eggs, pancakes, waffles, meat, etc. for breakfast - basically whatever we eat I blend or mash it up so she can eat it easier.
• For lunch she either has leftovers from dinner the night before or a YoBaby yogurt. This yogurt tends to be a bit runny so I add graham cracker crumbs or other food to give it a better texture for her to eat. I also usually give a fruit - mashed banana, applesauce, etc. I have recently started to add avocado or veggies to the fruit mixture.
• Dinner is a variety of things. Emma is pretty happy eating what we eat after I mash or blend it up for her. A lot of the food I make is organic and I like to make recipes from the book First Meals by Annabel Karmel. I also make Emma some great stews. Kate did a guest post on Ellen's To the Max blog and her son's nutritionist offered up a stew recipe and I've recently made some for Emma and she just LOVES it! This stew recipe is a staple in my kitchen now. The stew I made for Emma today consisted of flounder, parsnips, carrots, sweet potato, turnips, onions, zucchini and parsley. I have to say it's really tasty and Julia even loved it! The nice thing about the stew is that I can mash it instead of pureeing it.
• Emma is also showing great interest in more solid foods. She likes to take bites of peanut butter and jelly sandwiches from Julia, buttered toast, goldfish crackers, baby teething biscuits, thin-crust pizza, etc. It's nice to see her so interested in table food and giving her small portions of these helps her work on her oral motor skills so that she will be able to move to more table food in the future.

As for supplements, we are currently giving the following:

• Super Nu-Thera with P-5-P liquid vitamin formulated specifically for brain development. I mix this into her drink in the morning.
• Vitamin C (250 mg) powder is mixed in her drink with the vitamin.
• Vitamin E capsule - I puncture the capsule and add the liquid to food or a drink and then I swallow the capsule shell to prevent waste.
• Omega-3 Fish Oil for brain development and overall health. The old brand we were using had a really strong fish smell that was hard to get out of Emma's bibs and clothes so we switched to the Barlean's Lemon Swirl and it's delicious and has no smell! Everyone in our house takes this after dinner to help keep us all healthy.
• PhosphaLine was just added to the mix this week. This is specifically to help increase Emma's speech and language development. This is not so tasty and I blend it in with applesauce so Emma doesn't mind the taste. I'm keeping tabs on how well this works as Emma's nutritionist said that we'll know if it's helping or not by the time the bottle is consumed to decide if this is something we want to keep in the mix.

Nutrition

I think back to when Julia was little and how effortless she made it seem to progress through the typical baby stages - cooing, holding head up, laughing, sitting, eating, crawling backwards, cruising, crawling forwards, walking, eating table foods, drinking from a cup. I now know how complicated each of these actions are and think babies are brilliant since they usually acquire these skills in the span of a year or 18 months.

Children with delayed motor skills go through the learning process much slower and often with a team of people directing, prodding and moving their bodies for them all in the effort to train the brain so they can eventually move on their own. For us this means an endless group of people coming in and out of our house, a daily schedule that is set around therapy schedules, and endless worry about each milestone not achieved. It can get very tiring, but it also makes the celebration of each milestone achieved that much sweeter. It makes you want to dance around the room laughing and twirling the girls. It makes you want to bake a cake and........hmm, thinking of cake brings me back to the original topic of this entry - feeding!

The motherly instinct to feed your children is so basic and strong that it is pretty much universal. And when you have a child with motor delays feeding is often a daunting challenge. We are lucky that Emma does not have many challenges with sucking - she was able to nurse fine and transitioned to a bottle seamlessly. The fact that Emma loves to take a bottle has been a HUGE advantage in keeping her nourished. When Emma is in the never-ending teething process, unable to, or just plain doesn't want to eat it's nice to know that she will always suck down 6-8 ounces of fluid. It nice to know, but in my heart what I really want to do is feed my child. I want to not have to worry about weight checks and I want to eliminate the words "failure to thrive" from my child's medical files.

And so the focus of some of the therapy and specialist appointments took shifted to teaching Emma to eat. At this point I had already had enough people telling me what to do and how often to do it and I wasn't looking forward to the input on the feeding. But, I sucked it up hoping that Emma would benefit from the expert advice and that meal time would result in less frustration and fewer tears shed by me or Emma or both of us.

We added oral exercises with chewy toys to our daily list of activities with Emma. She still has oral aversion some days but other days she lets them in her mouth so that is progress. I shifted my focus from eating table foods to making meals that make appetizing purees. And, for good measure, I replaced many of our standard foods with organic foods. Emma now has days when it's a pleasure to feed her (i.e., opens her mouth for the food and finishes a meal in a 30 min. block of time) and days where she has her mouth clamped closed like a pit bull. It seems to me that just when I'm about to give up on Emma eating she comes through with a couple of good eating day. It's almost as if that she likes to take me to the brink of breaking only to pull me back to sanity with a smile, laugh and a ravenous appetite.

I would say that we are now in a feeding routine that works for us. I've accepted that Emma will willingly eat food about 3-4 days/ week and the other days I will have to hide it in her bottle. I've also accepted that she will be eating pureed and mashed foods for a while before she moves to more solid foods. She is adept at drinking out of a training cup and is even getting close to holding it herself. This would be a HUGE achievement in my book since it would give Emma a lot more control and provide us with a bit more time not spent on direct feeding (currently it takes about 3 hours/day). We'll find out in October if Emma is on the height/weight curve they want, but to my eyes and arms Emma definitely feels like she is growing at a healthy rate.

Another change we made recently is changing Emma's nutritionist to Kelly Dorfman mainly for her experience in using diet to address dyspraxia and language delays in children. Since Emma's oral motor skills are delayed and she has some traits that are similar to dyspraxia we felt Kelly was a good fit for Emma's team. Our initial consultation focus was around changing Emma's diet to address her acid reflux and constipation. We also talked about supplements available to promote brain development and better motor skill control for Emma. The outcome of our consultation is a change in Emma's liquid intake from a mostly milk/formula/Pediasure base to a mixture of almond or soy milk, unsweetened coconut milk and a special formula powder. We also are introducing DHA and a liquid vitamin specifically developed for brain injured children to help Emma achieve our goal of less reflux and constipation coupled with good brain development. We are phasing the changes into her diet and have a follow-up appointment with Kelly at the end of September to review Emma's progress.

Well, there you have it. We're doing a lot to make sure that Emma has the best foundation possible - therapeutically and nutritionally - to help her heal and we're learning a lot along the way. As always we are happy to make course corrections as necessary, but for now I think we are on the right path.

Lazy Weekend

We took a break from our general activities last weekend.  It wasn't a planned "down" weekend, but we mostly wound up staying around the house since Julia was sick.  It was really nice not to have to go anywhere or do anything.  The girls slept really well, which let me catch up on some much needed sleep.  Chris and I even slept past 9am on Sunday, drank coffee on the deck and read part of the Sunday paper before the girls woke up - it felt like we were newlyweds again!

Julia did manage to spend a bit of time playing in the splash table we bought this weekend, but outside of that she mostly watched videos and cuddled in my lap.  Emma loved the splash table, too, and even went after the toys in the water quite aggressively.  This weekend need to figure out a set-up that will allow her to play at the table without me holding her up.  We even got a reprieve from the constant worry of getting Emma to eat since she ate at all her meals and even munched on some cheese puffs for a snack on Saturday!  This was such an event that I took a short video of her eating puffs and posted it below.  Did this have something to do with Emma's great therapeutic riding session on Friday?  I'm not sure, but I hope the eating and sleeping continues.  

While we didn't plan the lazy weekend, it sure felt good!