When your blog crashes thanks to a single post

Sometimes, you can brainstorm and plan all you want with writing and blogging, but you can never tell how a post or article will be received.

And then there are those times when you just write what has built up in you from experiences and feelings, and it resonates so deeply with people in ways that you never expected.

I hadn’t given any previous thought about writing this blog post called Parents: What I Wish You Would Do. It stemmed from several awkward encounters the week before with other kids, and I sat down on a Monday morning, typed it all up, published it, and then left for Ohio on Tuesday morning.

While on my trip, I began getting all kinds of comments and emails from people who read it, and from other sites who wanted to republish it.

And of course, not everyone agreed with my words, but as far as I can tell, most people have been very respectful in voicing other points and opinions, which is appreciated.

Last week, a site called FaithIt asked about republishing it, and a couple of days ago – after reviewing the site – I said yes. I admittedly had no idea what a large audience FaithIt has, and on Monday night, my blog crashed because of the high volume of traffic. I spent several hours on Monday night and Tuesday morning trying to get it back up! I’m still reeling, weeks later, from the impact of that post. But I think my favorite effect has been other parents writing to tell me that they are feeling more empowered to talk to their own children about differences, and they are feeling more equipped with what actions to take and words to say if a situation arises when their child asks a question about someone else’s differences. Several parents have even told me that they’ve been so embarrassed when that happened with their child that they didn’t even consider the hurt that their actions might have caused the other family when they pulled their kid away.

Now I believe many families are looking at differences in a whole new way and are hopefully being more proactive in simply talking to their children about differences. And these are conversations that need to happen in our society, in our schools but especially in our homes.

I’m still learning so much as I walk through life raising one child with typical skin and one child with a skin disorder about how to advocate, how to react, when and what to share, how to be involved and when to step back. And I will continue learning for many, many years with each new situation and encounter. So I guess I hope others can learn with me along the way – can learn from me and can teach me as well – so that we can all help each other be more accepting, respectful, kind, inclusive, and to just simply enjoy and celebrate this life.018

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One for you, one for me: feeding strategies 

There’s no doubt that Brenna’s tube wean has been a huge success, and that eating has become a bit of her love language. I think half of our conversations revolve around what she’s going to eat that day, and she’ll wake up asking what’s for dinner that night.

However, we hit age three, and picky came into play.

I could name at least a dozen different types of foods off the top of my head this very second that she loves and eats with no hesitation. But when it came to dinner time, the battle field would open up.

When we sat down to the table together as a family each night, we were faced with either this:
“If I drink long enough, maybe he’ll go away.”

Or this:“I can’t believe they’re trying to make me eat GRILLED CHEESE.”

Dinner time usually ended much too quickly because of fighting and frustration – and we would be left with trying to figure out if we should stand our ground (after all, we need to develop positive eating habits, treat our kids both the same, and let Brenna know that she doesn’t get special eating treatment) or if we should give (after all, she needs to eat, much more so than the average child).

So we called in our feeding therapist that graduated us 6 months ago for back-up.

And she helped us develop a dinner time strategy using “reward food.” One bite of dinner means Brenna gets one bite of her preferred food.

So now, we typically have a small bowl of summer sausage joining us at the dinner table. Brenna gets to choose her bite of dinner – usually one of three different options – and once she’s eaten that bite, she can have one bite of summer sausage. Once she decides she’s done with dinner, the “reward food” goes away too.

(Then at the very end, she can also choose to drink a high-calorie drink like Boost or Pediasure – which she will usually drink about half. It makes us feel better because it’s not her preferred choice, but she likes it and it adds a lot more calories on.)

This new strategy has turned our dinner time around. I won’t say that Brenna is gobbling up everything I place in front of her, but she’s eating SO much more than she ever has at dinner. The other night she polished off her applesauce and had some bites of chicken pot pie – which never would have happened prior to using “reward food.”

Our feeding therapist also suggested that for new foods, a quarter-sized serving size is appropriate for Brenna’s age – so I also now feel like her plate is less full and it looks less intimidating. Another good strategy.

She may not be as happy as when she gets chicken nuggets, but there is much more peace at the dinner table, not to mention better eating habits being developed!

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Traveling with Special Needs, on the road

We are so lucky to have one of the best dermatologists we could imagine, and he has always encouraged us to do anything we “normally” would as a family, even if we have to plan extra or get creative.

One of those things is traveling.

Even though traveling can be challenging figuring out the logistics for Brenna’s skin care and working around the various weather conditions (we couldn’t believe how much the dry state of Colorado affected Brenna’s skin – we had to apply nearly twice the usual amount of Aquaphor!),  we are grateful for the chance to show our kids some other parts of the country and give them new experiences. Since Brenna’s first vacation two years ago, she’s now been to 11 states! We haven’t flown yet, but that’s coming next year.cIMG_3995

Here’s what I’ve learned about taking on the open road with two small kids and caring for a medical condition along the way…

1. Always know where the closest children’s hospital is. A physician we saw in Chicago made this comment to us after Brenna’s g-tube was place, and it was one of those obvious statements we had never considered before. We researched surrounding hospitals on Brenna’s first trip, and we actually had to stay overnight in a children’s hospital with Connor on last year’s vacation.

2. Alert your physicians/specialists and work out plan for contacting them after hours if necessary. We’ve called our pediatrician’s cell phone from the road, and we’ve text photos of Brenna’s skin to our dermatologist from the road – and coordinated a prescription to be picked up at a pharmacy at our next stop. Things always seem to pop up on vacation, but when you’re dealing with a serious medical condition, it’s really important to be able to contact your doctors.

3. Bring way more than you think you’ll need. If you have the luxury of traveling by road instead of plane, you can pack the trunk full of anything you think you might need. Of course, you can always purchase many things while on vacation, but if there are special products, prescription meds you use only occasionally, or specifically favorite foods, bring it all. That also goes for any extras, like a back-up g-tube or any other medical items.

4. If there are special accommodations that need to be made at a hotel, restaurant, theme park, etc., call ahead. Keep a clear record of the agreement of those accommodations and have a plan in place to carry them out if necessary. We haven’t had to do this yet, but I’m already anticipating some contact with the airline before our trip next year to the FIRST family conference in California.

5. Let it go. Care might not be the best that it is at home, and that’s OK. I think that “good enough” is much easier for traveling. We always look forward to a great bath after a trip, but Brenna’s skin has been fine when we let her enjoy vacation, even if it’s not at its absolute best.

6. Realize that it may be tiring, but very worth it. And I think traveling with small kids/special needs gets easier the more you do it. I thought our first vacation would be miserable, but the kids rode more than 5 hours without stopping and very little fussing, and the whole week was much less stressful than I had imagined. Practice with smaller, more frequent trips. I’m glad we had some 3-6 hours trips under our belt before we drove across the country last year.

cIMG_4057Do you love to travel with your family, even with the extra challenges of special health needs? What would you add to my list to make travel easier?

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