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Thursday, July 24, 2014

My bags are packed, I'm ready to go: leaving for She Speaks 2014

Today, I am boarding a plane and the only expectations I am holding on to are those of a fantastic and inspiring weekend.

I am attending the She Speaks Conference this weekend, a conference dedicated to Christian writers and speakers who have a message or story to share with the world. I've spent hours upon hours working on my book proposal and writing and contemplating my story, and I feel so grateful to have this opportunity to explore my writing in an environment filled with author, bloggers, publishers and agents.

But most of all, I am looking forward to meeting in person some incredible women that I follow and admire online. Women like Courtney, and Ruth, and Michele, and Lysa.

I will be traveling by myself on a plan for the first time in my life, and I am nervous but looking forward to having some alone time to think, read and just be. I am leaving my babies for the longest time in their lives, but I am not worried at all because Evan is such a great dad and seamlessly picks up the child care in my absence. (But I will sure miss them all!)

This week hasn't left a spare minute on my schedule with preparing for the conference and continuing to move and renovate our new home and select things like a bathroom fan for Brenna's new bathroom. But today, I am feeling peaceful and ready for this huge experience.

Like Courtney keeps telling me: "God's got this."

As I think about joining hundreds of others who also have wonderful messages to share, my confidence wavers at times, and self-doubt has crept in. But at this point, I know I am here to learn, and my heart is open to everything that may come my way. I feel as prepared as can be, and frankly, I am so excited.

No matter the outcome, even with zero interest from anyone in my story, I am ready to absorb everything from this conference and apply it my life and my career...

Wednesday, July 23, 2014

High-Calorie Food Ideas (for kids who need to gain weight)

We're only a few months into this oral feeding stuff, so I'm no expert…but then again, I've learned a lot over the last two years with weekly feeding therapy and daily hurdles and successes (well, and not to mention almost 5 years of "typical" eating with another certain child.)

Feeding issues is a topic I get asked about very often, after writing about positive eating tactics we've used during Brenna's tube wean, I wanted to share some of our experiences with oral eating and high-calorie foods…


"Healthy" eating can be a challenge with Brenna. When it's vital that your kid consumes an enormous amount of calories just to live, you become less concerned with healthy eating and more concerned with just eating.

As we've been on this tube-weaning journey, I've been asked a lot about Brenna's favorite foods and how we ensure that she is getting enough calories. With Brenna's condition, her body uses so many calories to make extra skin that she needs a huge amount of calories just to not lose weight. Thankfully, she truly loves to eat and particularly loves high-protein foods, so that has given us a leg up on ditching her g-tube in the future.

As for what Brenna eats, and foods that are higher calorie, here are some ideas:

-Meats: Brenna loves summer sausage, roll sausage, rope sausage, bacon, sausage links, hot dogs, bratwursts, burgers, ham, chicken (especially chicken nuggets), salami, bologna and pepperoni.

She also will do well with meatloaf, chicken dressing casserole and some other meat dishes. Dishes like that also lend themselves to being able to add in additional calories by adding oils, butter or heavy cream. She loves ketchup, so she usually wants to dip in ketchup and often, I'll add oil to her ketchup.

-Pizza! Brenna absolutely loves pizza, and between the crust, cheese, sauce and meats, she's getting several food groups. Sometimes we are able to sneak some tiny pieces of veggies on her pizza too.

-Eggs: Brenna prefers scrambled, which we cook in oil and add a little cheese too. She's not a huge fan of cheese, but for a child who is, you could load it up with cheese for added flavor, calories and protein. With eggs, you could also add a lot of butter for calories and flavor.

-Soups: Brenna especially loves chicken tortilla soup, which has beans and corn in it, among other ingredients. Add in some sour cream, and we've got some good food groups with lots of calories! She's also a fan of broccoli cheddar soup, and one of the things I'm looking forward to this fall is trying some new soup recipes.

-Smoothies! Smoothies are a great way to get in nutrition and calories. Brenna is off and on with smoothies,  but I'll take what I can get. I start with whole milk as the base and add yogurt, fruits and veggies. Then I add a smidge of oil to hers. I'm experimenting with different flavors and ingredients to see what she might like best. There are so many things you could throw in a smoothie, it's a fantastic snack!

Brenna also likes Danimals smoothies, which I add a touch of heavy cream to, in order to add calories.

- Grilled sandwiches: Brenna's favorite is grilled ham and cheese, which means we're getting a lot of calories by slapping butter on the bread, in addition to the ham and cheese.

-Avocados: Brenna loves guacamole! We load up the guacamole on tortilla chips and she practically slurps it off :) Avocados are oozing with healthy fat.

-Breaded fish: Brenna eats fish OK, but I am going to keep trying! She loves breading on anything, which also made it higher calories, so I'm pushing the fish sticks :)

-Peanuts and peanut butter: She will snack on peanuts sometimes, and occasionally eat a PBJ or peanut butter on crackers. She also will try hummus on crackers sometimes.

-Chips. Not the most healthy thing ever, but the girl takes after her mother in the salt-loving department. She loves regular potato chips, sour cream and onion chips, and Doritos.

-Cottage cheese, pudding and yogurt: It took a little while for her to warm up to these foods, but now she really likes them, and they all have good protein and calories.

-Cereal bars. This is usually what she wants for breakfast, so we try to select bars that have more calories and protein.

-And of course, the occasional treat: Brenna is starting to love chocolate candy, cookies, brownies, etc. Bring on the calories!

-Other ideas: cream cheese on bagels, muffins, waffles with lots of butter and syrup, pancakes (ditto to the butter and syrup), ice cream, mayonnaise, potatoes with lots of butter, sour cream, etc., cheese, whole milk, dressings, drink supplements like Boost or Pediasure (Brenna doesn't like much besides water and the occasional smoothie, so we haven't given those a try yet, but it's on my to-do list).

I try to add oil into whatever I can. I try to put dips on chips instead of plain chips. I put sour cream in soups or on potatoes, Mexican dishes, etc.

It took me a while to get used to a high-calorie mindset, but I've started to adapt. Sometimes, it's a little tricky trying to get more calories into her foods and not ours, especially when she wants to eat what we and her brother are eating, but fortunately Connor is a decent eater and often will eat many of the foods that I want Brenna to eat…thus encouraging her to eat them too :)

Also, I am thankful everyday that Brenna has seemingly outgrown her milk and soy intolerance. Dairy products have been so helpful in adding in calories to her diet!

If you have any other food suggestions or recipes to share that pack a high-calorie punch, I'd love to hear them!

Monday, July 21, 2014

Eating tactics that have worked for us

How did we get Brenna to eat?

It's a question that pops up over and over again to us.

And sometimes it blows me away to think about how this kid was completely, 100% tube-dependent just 5 months ago, and today, she hasn't used her tube in 2.5 weeks, with the exception of some medicine.

And clearly, it was not really us…it was mostly her. And I give her so much credit, because she has always seemed to have a desire to eat, which is a huge part of the battle. Not only that, but we had a wonderful feeding therapist that we've been working with for the last year... she and I have worked so well together and agreed on just about everything during this process.

Between what we learned from experience and what our feeding therapist taught us, here are some of the ways that we encouraged oral eating as we have weaned Brenna from her g-tube. These tactics worked really well for us, so I hope this may give you a new idea or two if you are considering tube weaning, in the process of it, or even just dealing with a kid who isn't keen on eating...

1. EXPOSURE! As with all kids (and adults too!), sometimes it just takes a lot of exposure before they'll try a food, or decide they like it. It took at least 2 months before Brenna would try yogurt, and another few times before she would eat more than a bite. We put any and all foods on her plate, even when we know she won't try them, in hopes that eventually she will. Sometimes all it takes is leaving a bite on her spoon, and then she'll pick it up and feed it to herself.

Usually on her plate, I will put a food that she loves/prefers, one that she likes and will eat, and one new food or non-preferred food.

Loves the chicken, likes the cottage cheese…cantaloupe? nah. but we're trying!

We also ask her to give "kisses" to foods that she won't try (per her therapist's suggestion!), and she almost always will do this. Letting a food near her mouth is a big step, and there have been several foods that she'll get a little taste of on her lip and want more.

2. Discourage grazing. Our feeding therapist told us this from the very beginning. When kids graze all day, they actually eat less than if they have hours in between meal times, and I have found that when Brenna does munch all day instead of eating at consistent times, she loses weight.
(Of course, at the start of a tube wean, this was a little different, as we just wanted her to eat anything at any time. But after a few days into the tube weaning process, we tried to let her get hungrier so she'd eat more at a time.)
We try to stick with a schedule that looks something like this:
Breakfast around 8:00/8:30 a.m.
Snack around 9:30/10:00
Lunch at 11:30
Snack around 3:00
Dinner around 6:00
Not surprisingly, she consumes the most food at 3:00 snack time after she wakes up hungry from her nap.

3. Use peer pressure. Peers and siblings can be great motivators. If Brenna is hesitant about trying a food, she can usually be persuaded if she sees Connor eating it. And she eats like crazy at social events, where she sees all of the kids and adults around her eating too. Many therapists have told me that kids who are tube-fed often begin to start orally eating when they go to school because they see their peers eating and want to participate too.

Her friend Maggie feeding her :)

4. Give choices. Brenna loves to make choices, and I have found that when I ask her opinion - she's a highly opinionated person if you haven't noticed - she's more likely to be excited about what foods are in front of her. I'll usually give her a choice of two things, like ham or sausage, or strawberry or blueberry yogurt.

5. Don't give too many choices. Without contradicting myself, we also strive to curb behavioral eating problems, especially during family dinners when we all sit down together. We usually have a main dish and a couple of simple sides, and there are no other choices given. In the beginning of Brenna's tube wean, when we were so concerned about her eating and weight gain, we let her eat whatever she wanted. Now both kids eat what is for dinner. I try to make sure there is at least one thing that both of them likes, so I'm not preparing whole meals that they turn their noses up at.

6. Pretend to eat. We love to play kitchen, and this reinforces positive eating and drinking habits. We pretend to prepare the food, put it on our plates and then we all eat it, pretending to take bites and pretending to drink out of cups. I really think this helped Brenna continue to learn about eating, which was a foreign concept to her.

7. And finally, make it fun. There is no playing with food at the dinner table, but we also feel that mealtimes should be enjoyable and not a miserable experience.

Here is how we try to make eating more fun for her (and Connor!)...

-Involve "friends." Brenna loves to feed her stuffed animals. She'll pretend to give Elmo a bite, and then take the bite herself, like "one for you, one for me!"
Feeding her dog

-Use packaging to your advantage. I'm convinced that we got Brenna to start drinking Danimals smoothies because she loves the monkey on the bottle!

-One word: picnics! We love picnics, either outside or on our living room floor.

-Use character utensils. Brenna gets so excited by her Elmo spoon and fork, and she's tried several new kinds of food just because Elmo was serving them up.

Eating issues can be so frustrating…but I want to point out that there is a huge difference between a picky eater and a non-eater. When we began our tube wean, people would comment "oh, I know how you feel, my daughter won't eat oranges or apples." I know for parents whose children are tube-fed, it is can be hard to hear other parents talk about picky eaters…they are completely different.

Brenna truly had to learn how to eat. She had to learn what it felt like to be hungry and to learn that eating would stop that hunger feeling. She went from gagging if something touched the outside of her lips, to now using a fork to feed herself chicken nuggets, first dipping them into the ketchup herself. It really is amazing to see her progress in the last 5 months.

And that's also not to say that our challenges are over. Every day, using these tactics is constant in order to continue to reinforce positive eating habits, and I think it will be that way for a long time, especially due to Brenna's huge need for calories. Eating thousands of calories will be her norm every day.

And on that note, the question that we always receive hand-in-hand with how we got Brenna to eat is: what does Brenna eat? So next up is a post all about Brenna's favorite foods and other high-calorie meal or snack ideas… and I'd love to hear your ideas, too!

Friday, July 18, 2014

Zippy's Club: A children's book giveaway!

A zebra with no stripes?

I love this new take on visual difference!

Zippy the Zebra, who has no stripes, is the main star of a series of books involving Zippy's Club…in which Zippy's mission is to spread kindness and end bullying.

The author of Zippy's Club, Candida Sullivan, was born with Amniotic Band Syndrome, which occurs while in the womb. The bands are sticky and affect whatever part of the body they touch, either from scarring or amputation. Candida's hands, arm, and foot are affected, and due to her differences, she has to modify everything she does.

As Candida was growing up, all she wanted was for her scars to be gone. But today, she sees how God has given her a unique and beautiful purpose, and she created Zippy to show the world what it is like to be difference and to encourage everyone to celebrate differences - their own and other people's.

"Everyone can relate to Zippy in one way or another. We’ve all felt different at times, left out, been bullied, experienced fear, heartache, etc. Zippy gives us hope," she said. "We can’t totally stop bullying, but we can teach children how to overcome it."

Candida sent our family a copy of Zippy's Club to read, and my kids have fallen in love with Zippy and have subsequently named any zebra they see "Zippy." :) 

What really struck me is that even without his stripes, they knew immediately that Zippy was a zebra and saw him only as such... just as a person with visual differences or disabilities is not defined by what they are lacking, cannot do, or what they don't look like - they are first and foremost a person.

Candida has offered to give away a copy of Zippy's Club to one of our wonderful Blessed by Brenna readers - just leave a comment below!!
Don't forget to leave your email so that I can contact you if you are the winner. (Comments will be published after approval, so you may not see it right away, but it will be there!) 

Hope you all enjoy Zippy and his friends, and the wonderful message in all of his books!

Thursday, July 17, 2014

The Big Tube Wean: Month 5

Big News.

BIG BIG NEWS.

Brenna hasn't used her tube AT ALL - except for medicine - in 12 WHOLE DAYS!

Today marks exactly 5 months since we began this tube-weaning process, and it's been a little stressful and challenging, a lot exciting, and overall wildly successful.

Our biggest challenges now are some princess-like behavior that includes Brenna not wanting to get her hands messy during meal time, so she insists that we dip her food and feed her if it involves something like ketchup or ranch dressing.

We are countering this behavior by pushing utensils like forks, which she is taking to quite well, but she has a lot of trouble getting the food to stick on the fork, so she'll say "help! help!" the whole way through. This is age-appropriate, so we'll keep working on this skill so she can hopefully learn for herself soon.

The most exciting aspect of this has been seeing Brenna find new food that she loves and figuring out new combos  - such as the scrambled eggs and ketchup that Hunter turned her on to at the FIRST Conference!
(And by the way, Hunter appeared on the Katie Couric Show this week to talk about living with Harlequin Ichthyosis!! What an incredible advocate she is.)

I am constantly amazed at Brenna's appetite. It is not uncommon for her to finish a typical dinner…and then 45 minutes later, she'll be asking for more of something and she'll put away 4 chicken nuggets or 2 hot dogs as "dessert." We finally decided to stock up on some of her favorites in bulk this week… she'll go through a standard bag of pepperoni in 5 days - it can be hard to keep up with!

We currently have a minimum amount of water we need to try to get her to drink - 30 ounces - and for the past 2 weeks, she has been hitting that amount every day. The Munchkin sippy cups with handles have become her favorite, and she'll down the contents of a cup in 30 seconds when she's thirsty.

Her most recent weigh-in was a whopping 19.1 pounds, almost making me tear up.

We started this tube weaning journey at 19.4 pounds, and 5 months later, cutting out all of her tube feeds completely, she is almost back to to her highest weight ever in her life.

Remember how I had a very simple dream of my children eating breakfast together?

Yeah, it's happening. And it's all of the simplicity and normalcy I had imagined...

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Monday, July 14, 2014

Leaks in the System

My friend Mary Evelyn of What Do You Do, Dear? wrote a wonderful and insightful post about a couple of recent reactions to her son Simeon's wheelchair and disability on Friday...
"She was maybe six-years-old, smiling and ladylike in a gauzy white dress. The kind of dress that makes me want a daughter. The kind of smile that's heavy on sugar and light on spice. She walked up to my son, as he wheeled in circles outside the sanctuary after church, and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello. 
And then, without taking her eyes from his face, she said  "I feel sorry for him."  
I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs. 
… I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system. 
A system that tells her my son's wheelchair is 'very sad.' 
A system that tells her he is a 'poor thing.' "
Read the rest of the post here.

I cried as I read and related. Because I hear it, too.

"Aww, poor thing."

I never know quite what to say, so I usually respond, "no, she's doing well." Whatever that means.

And I admit that this public reaction has bothered me much less than it probably should, simply because I'm relieved that it's not an alternate reaction of disgust, dismay or judgement that I let my child get fried in the sun.

But pity is not what we want, either.

Brenna, like Simeon, is so much more than her condition. She's just a child. She loves Cookie Monster and Elmo, she adores her older brother, she clamors to be read to, and she giggles when we dance and tickle.

And that is not something to be pitied.

Sure, it makes me sad some of the things she has to endure - a long scrubbing daily bath, uncomfortably dry skin, and some of the things that go along with that which make her health and development a little more challenging.

But Brenna's life? Overall it is happy, joyful, full of purpose. Her life is not sad or pitiful.

As I told Mary Evelyn, it's a really tough road, especially with children. How do we teach empathy, understanding and acceptance, but without the pity? It seems children, and many adults too, try to understand something different than themselves and end up feeling sorry for that person or that situation, simply because it is different than what they know.

Just as we need to celebrate our differences, we also need to realize how very similar we are too. When we learn to see the person instead of the difference or disability, it becomes easier to understand without feeling sorry.

Friday, July 11, 2014

Wild Wild West: Last Leg of the Trip

Our tour of Yellowstone National Park ended with us in Driggs, Idaho.

And it was there that we noticed that Brenna's skin didn't look like its typical self.

Her skin had developed some red spots on her belly and back that looked almost like a rash. We touched base with her dermatologist and we all speculated what it might be… heat rash from the car seat? an infection? irritation from the hotel towels or something else she had come in contact with?

But by morning, it looked worse and was spreading to her arms and legs, so after a series of calls and some coordination, we picked up a prescription in Colorado as we headed to our next destination. And then when Brenna started running a fever that night of 102.4, we were so grateful to be able to start her on medicine.

Fevers apparently were a common theme on this year's family vacation.

Thankfully, we were at a beautiful condo in Colorado (thanks to some very generous and thoughtful blog readers!) for two days, and we used that time to rest and recuperate. Brenna responded to the medicine right away and after just a couple of  doses, her fever was gone and her skin was almost back to normal.

This was the gorgeous view from our deck in Grand Lake, Colorado… it was a nice way to wake up!

We had a lazy morning, and Brenna slept all morning, so when she woke up, she was ready to party. We drove to a ski resort in Winter Park to have lunch and ride the ski lift up the mountain. The kids were thrilled by the whole experience.

Evan and Connor on the lift


And that evening, we had company for dinner! A wonderful family who we met at the FIRST conference a couple of weeks before drove from their home in Denver to have dinner with us. Our kids are almost the exact same ages, and their second son Ethan has lamellar ichthyosis. The kids all became fast friends, and we were so glad to get to visit with them and get to know them better!




Brenna says "no thank you" to posing with the boys :)

As we then said goodbye to Colorado, we realized we were all getting a little tired of traveling at this point. Between both kids being sick, and therefore both parents getting very little sleep, and traveling in a van most days, we began dreaming of our own beds. But we still had 4 days to go, according to our itinerary.

So we looked at the map, rearranged some hotels and scheduled ourselves to arrive back home on Friday evening instead of Saturday afternoon. Instead of hitting Wichita, Kansas, we stuck to the upper portion of the state…which worked out well because we got to go to the Salina, Kansas zoo...
AND another family we met at the FIRST conference lives in Kansas, so we were able to meet up with Cora, who has a beautiful 11-year-old daughter with ichthyosis, for lunch as we went through! I told Evan after the conference that it feels like now we have friends all over the country… and that was proven true as we got together with 2 different families on our trip :)

Our last day took us to Missouri, to visit our friends on July 4th. The kids had slept well the night before, and we were all in good moods to celebrate the holiday and then arrive home that evening.

As we had planned our long journey west, we had laughed about how we were crazy to be going on this trip following another trip to Indianapolis and right in the middle of moving, and we had laughed about how we weren't going to get any sleep…and we were right.

But I'm so glad we did it.

Driving 50 hours in a van with two little ones over 9 days doesn't sound like much fun, but it was fine. They got used to the driving quickly. We stopped along interstates to go potty, and we unloaded some luggage in the trunk at rest stops and gas stations so we could lay Brenna out to apply her Aquaphor …but again, it was fine.

As I spoke with our dermatologist the morning Brenna got sick, he told me he was so glad we were traveling, and that even though we were encountering some health issues and some stress, that we were learning how to travel with a rare skin disease. And we'll be much better prepared for future trips and Brenna will be more prepared to travel on her own as she becomes an adult.

So while it was stressful, tiring, and even frightening at times, it was also exciting, adventurous and just plain fun.

There will definitely be a next time!