Special needs | Lessons from my daughter

I love food!

“We” love food!

When I left home at 17, my step father was worried I would starve.

I could use the microwave and the toaster. 🙂

I studied hotel management and had cooking courses. I learned how to cook and appreciate food.

I have 1 rule, try it once.

When I met Jonathan in 1996, he was a chef!

Yeah me!!!

He hasn’t been a chef in many years and only shows off his mad cooking skills when we have company.

😦 I miss his cooking but let’s be honest! I have some skills too.

When Emily was little, she couldnt drink, didn’t know how to swallow and not one doctor believed she would ever learn to eat solid food.

We made all her purées except for meat. Store bought puréed meat was gross but once mixed in our veggies, you couldn’t tell it was there.

I (we) tasted everything we gave Emily.

Everything was puréed but delicious!

We gave her flavors and textures. We had bite size pieces of food on the table for her to play with and hopefully try to eat.

We never forced her to eat anything.

But really slowly, she started to grab pieces of food and tasted it.

She chocked on everything. Milk, water, juice, purées, non-purées, everything.

Everything!

She got to the point when she could make herself regurgitate on demand if she was chocking.

We never lost hope that one day she would eat.

We won! She eats! She will try anything and has a really short list of things she won’t eat.

Once a week, I will do my best to tell you about our food. Our vegetable basket we get from a local farm, what we ate, what Emily tried, what she liked and so on.

On boring weeks, I will go back to old pictures and tell you what Emily has tried over the years.

Last week, I wasn’t feeling well. When I am not well, I make Frittata with whatever I can find in our fridge.

This always makes me feel better and Emily loved the added avocado.

Monday was cold and wet. We got a lot of rain so I made the 10-spice vegetable soup with cashew cream from the “Oh she glows” cookbook. I had to switch some ingredients based on what I had available but it is still delicious.

Emily doesn’t care for chickpeas but my soup received an “amazing” qualification. Emily ate all the chickpeas.

Monday night, I also made a watermelon, feta cheese and peppermint salad.

Emily had plain watermelon. Fresh herbs are sometimes too much for her and feta is not something she likes.

Tonight, we picked-up our first vegetable basket for the season. I am so excited, I love fresh produce but can’t stand our over-crowded Saturday market. So, this weekly surprise basket is awesome.

The strawberries are so good.

Last but not least, tonight, I made a Dorito Taco Bake!

I saw the recipe on Facebook and decided to give it a try.

I again, made some changes. Mostly, I added vegetables in the cooked meat (onions, celeri and mushrooms), fresh avocado on top and I put way more cheese than the recipe called for!

Emily loved it.

And now, she wants me to teach her how to make this!

Did I tell you she finished Grade 10 Culinary Tech with a 90 mark!?!?

Today we chat with Brooke!

Hello Brooke, can you tell me about your family?

We are a family of 5, my husband Shane, Kali, Kera and Kasi! Kali and Kera are 6 year old twins, Kasi is 1 1/2 years old! We live in Avis, PA! I’m a stay at home mom!

Can you tell me about your daughters who have cri du chat syndrome?

Kali and Kera both have cri du chat syndrome! We found out Kera has 5p- when she was 7 months old and we found out Kali had 5p- when she was 10 months old! Kera is our adventurous one, she crawls, walks with a walker and recently started walking with one hand held! She is nonverbal and not potty trained yet! Kali is more content being left alone playing with toys that play music and light up! She doesn’t crawl or walk! She had corrective surgery on her foot in Feb 2015 and we are using an up and go to try and get her walking! Kali doesn’t do anything on anyone’s terms but her own, some days we can get her to walk in the up and go like she’s been doing it for years and some days she acts like she has no clue what she is supposed to do in it!

Tell me about doctor appointments, therapies and/or school?

Our doctors appointments for the most part have dwindled off! Kera still sees her neurodevelopment doctor every 6 months because she is on risperidone, Kali sees him every 2 years! They both see there PCP every 6 months still! Every other doctor, orthopedics and cleft clinic(Kera), we see once a year! Their ENT dismissed us now that Kera doesn’t have ear infections anymore and Kali got her tonsils and adenoids out! We drive 2 hours for orthopedics and cleft clinic, 1 hour for our neurodevelopment doctor, I did research and found the best doctors closest to us for the girls! They get PT, OT and Speech in school and then I take them to outpatient PT and OT once a week and I take them to Penn State University once a week for speech also! They absolutely LOVE school, they love being in their mainstream classrooms with all of their friends and they love being in their multidisabilities classroom too because they get to be on the floor and do what they want for a little bit!

Cab you tell me a success story?

We FINALLY got Kera to walk with one hand held, after years of trying! We are getting Kali there, like I mentioned above, she is our stubborn one and only does stuff on her terms and nobody else’s!

Is there anything else you want the world to know?

Our kids understand more than people think they do! Just because they are nonverbal doesn’t mean they don’t know what you are saying to them! If we are talking to them and tell them something funny they will laugh before we do!

Kali
Kera