Stories from My Life

Super Peanut Butter Applesauce

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!

image

RECIPE

  • 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.

NUTRITION BREAKDOWN

Calories 505

Protein 10 grams

Carbs 78 grams

Fat 19 grams

Sodium 103 mg

image

Categories: Recipes, Special Needs Parenting, Stories from My Life | Leave a comment

Tea time!

image

image

image

image

image

image

image

image

image

image

image

image

Categories: Childcare, Stories from My Life | Leave a comment

Children’s Book Review – Shark vs. Train

image

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

Categories: Book Reviews, Childcare, Stories from My Life | Tags: , , , , , , | Leave a comment

Pills Pills Pills

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!)

Categories: Childcare, Health, Stories from My Life | Tags: , , , , , | Leave a comment

HAPPY BIRTHDAY MOM!!!

image

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.
image

Categories: Stories from My Life | Leave a comment

Camel.

My sincerest apologies for not having a picture. And because I don’t, I know that no one will believe me. But on our way home from Marion, on Sugar Hill Road between Old Fort and Marion, we saw a camel grazing in a field.

Seriously, just a camel eating grass like it was perfectly at home in Western North Carolina.

Sometimes life is just so fun 🙂

Categories: Stories from My Life, Stress Relief | Tags: , , , | Leave a comment

A little Monday fun with The Miserables

Our family are HUGE Les Miserables fans. Seriously, we took our boys to see the movie in the theatre in December. Yes, that’s right, a four year old and a six year old for three hours in a movie theatre watching a musical based on a Victor Hugo novel. They were perfectly well behaved and wonderful, completely engrossed in the film. Jude only had to be taken to the bathroom twice and didn’t have an accident!

My husband and I are so enthralled with this musical, it never occurred to us that it might not be just a super happy experience to share with them. Of course we both forgot until we got into the movie that the show is called “the Miserables.” The boys seemed rather shell shocked coming out of the theatre. I mean (SPOILER ALERT), everyone dies.

However we are rather insistent parents, so we bought the soundtrack and insisted that we listen to it on loop for a six hour car trip shortly thereafter. Yeats is now obsessed with the music! He does yell at us if we start to sing “Master of the House,” as it’s about bad people. But the rest of our mad singing of these show tunes he rather seems to enjoy. He often asks to listen to it! Ah, another Victor Hugo fan in the family.

Once upon a time about a decade ago, I never missed the Oscars. Now I can’t remember the last time I watched. BUT I had heard that Les Mis was up for a bunch. So tonight I took a few minutes out of working on some schoolwork (Virgil decided to have a screaming contest with himself and utterly broke my focus) so I took a few minutes to see how the movie fared.

To my surprise they did a full cast performance during the Oscars! Of my husband’s favorite song no less. (My favorite song from the show is “I Dreamed a Dream,” his is “One Day More.”) So here’s the video of last nights performance. LOVE IT!! Yay!!

Les Miserables Oscars 2013 Performance by HughJackMania

Now back to my schoolwork. This assignment is due by midnight.

Categories: Stories from My Life, Stress Relief | Tags: , , , , , | Leave a comment

Friendship and the Special Needs Child

I’ve heard a lot of special needs parents talk about how their friendships are not able to survive the changes in their lives that come with having a special needs child. Friends who were once very close can’t cope with the stressors and don’t understand what life is like once you enter this dizzying world of doctors and hospitals, specialists and future which could include things that you as a parent are suddenly too terrified and dismayed at to even face in the daylight.  A lot of parents that I know in the special needs community say that its because they talk about their children too much, that friendships become strained because their lives are a series of difficult times that their friends are not able to support. It’s because of the burden that their friends aren’t willing or able to stick around.

It’s important that parents have those friendships. Studies show that a wide group of friends increases health and happiness. People who have a rich life of friendship live longer and are happier. Even for parents who’s children don’t have challenges, it can be difficult to maintain friendships as life gets more hectic.

I have come to a revelation about the issue as there has been some strife in my longtime friendships recently.

I am different now than when Hermione was just a twinkle. I am stronger. I am more convicted about my beliefs. I am more willing to voice them. I am a fighter, with a will of steel. I am able to make sacrifices and decisions that I would never have thought possible. I am also more patient and understanding. Rather than feeling a lack of control in my life, I see how much control we do have to shape our world. I don’t bemoan my life but I also don’t apologize for who I am. I have newfound confidence in myself.

These are all things that were inside of  me well before the surgeries and the ambulance rides, the long nights of worry and the demons that come to chase away my sleep too often.

I do think that sometimes my friends don’t understand the depth of these changes in my life. Maybe I don’t talk about them enough. I’m not generally one to complain about the way things are, or at least I don’t think I am. Life is a gift and I’m thankful for it.

Since Hermione came to revolutionize my life, I only find that I have room for people who treat me with kindness, openness and respect. My life is rich and full, and plenty of drama comes from reality. I expect friends to talk to me about what their issues are openly and with trust as that is how I approach the people in my life. I fight enough with things, and I will not fight with my friends.

So when special needs parents say that they have lost friendships over their child, I can see that it may be the case for me as well. However for me it’s not because of the burden that she is but because of the tremendous gifts that she has given to me. I am more than what I was before she came.

For there is a friend for his own occasion, and he will not abide in the day of thy trouble. And there is a friend that turneth to enmity; and there is a friend that will disclose hatred and strife and reproaches. And there is a friend a companion at the table, and he will not abide in the day of distress.

Ecclesiasticus 6:8-10

Categories: Special Needs Parenting, Stories from My Life | Leave a comment

Turning off the TV.

This year we as a family decided to turn the TV off for Lent – forty days without the tube. With the new baby, the holidays, and all of the other stressors we’ve had, there had been lots of Netflix and video gaming in the Robinson household. So this was going to be hard, but doing it as a family is the key.

For Christians, Lent is a time of reflection on the sacrifices of Christ. It’s the forty days before Easter, starting with Ash Wednesday. We try in small ways to make some sacrifices ourselves in an effort to bring ourselves closer to God. It’s a wonderful time of growth and expansion, probably because it is a challenge. The idea is to give up things that are not necessarily harmful to us but rather luxuries that we would otherwise feel entitled to. So you wouldn’t necessarily use this time to give up smoking, but of course there’s never a bad time to give that up.

I thought I’d share our saga here with you, and let you know how we’ve spent the time. I guess one good thing is that it’s afforded me the time to take up blogging again 🙂

Day 1 – Ash Wednesday. Church! Dinner at the table with everyone. The house felt so quiet. Shockingly quiet. It’s amazing how without that background noise (which is of course what TV tends to be) there is just this emptiness. A bit of a jolt to adjust to.

Day 2 – Thursday. This day was a bit more challenging. The boys however discovered a love of bath time. They took four baths between the two of them – two together and one each alone. We were admittedly shocked at this development.

Day 3 – I was home from my internship. We read lots of books today and the boys spent a ton of time outside. Also got their room a bit clean! Went to see hubby’s grandfather and spent a great portion of the afternoon there.

Day 4 – Saturday. The hubby was gone with his dad all morning, so the boys and I enjoyed a super quiet day.  We listened to a lot of NPR. The boys played with their Skylanders – these little statue toy things that go with the Wii. The boys played out their game WITHOUT their game. It was super fun to see. They played out this elaborate story with their figures. For a while Virgil was even the bad guy. Day 5 – Sunday. Church again in the morning. I am so proud of my boys, who are hanging with it so well. We’ve talked a lot about God and sacrifice, how it can make you a better person. However, Yeats says that next year he’s giving up homeschool for Lent.

Day 6 – Monday. Took Hermione to PT and her first speech. Hubby did karate with the boys. An easy day!
image

Day 7 – Tuesday. LeapPad has taken over our house! Mom got the boys the old kind of LeapPad, the kind with actual books that you touch with a pen, and they had not really taken much notice of it for months. She hooked them up with like twenty books. Now it’s all they want to do. LeapPad started at 4:30am. Hermione went to doc for what turned out to be infected ear pits (see previous post)

Day 8 – Wednesday. We decided to have a picnic on the deck. In the cold. With blankets.

image

Day 9 – Thursday. Karate with the family. This is perhaps my favorite picture ever!

image

Day 10 – Friday. The boys rediscovered their Cars racetrack. An afternoon of racing ensues.

More to come as the days roll on toward Easter!

Categories: Motivation, Spirituality, Stories from My Life | Leave a comment

Sick night

Hermione has infected ear pits 😦 They’re these little dimples right at the tops of her ears which are actually more than just tiny spots but rather cavernous sinuses. We always knew infection was possible and so we caught it super early as we watch such bizarre things closely.

Thought I’d share our nighttime comfy tray!

image

Happy midnight everyone!

Creamed corn (currently our favorite food), fruit medley, ibuprofen for the fever, antibiotics for infection and clonazepam to chase away seizures.

Categories: Childcare, Stories from My Life | Leave a comment

Create a free website or blog at WordPress.com.