Sunday, August 24, 2014


     Sometimes Owen's Autism takes a back seat in our family's lives, and sometimes that's a good thing. Nate and I often joke how grateful we are we don't have more time or energy on our hands, otherwise we'd spend a lot of time worrying about things we shouldn't be. However, this summer as Owen grew another couple inches and turned into a full-fledged boy - and also became obsessed with all things soccer and geography from the World Cup - it became apparent that his "unique quirks" would start to manifest themselves to those around him.
     When Owen was first diagnosed on the spectrum, around age 2, one of the first questions I asked our pediatrician was at what age would kids likely start to notice differences in him?  She told me that around 2nd grade is the time when most kids start to become socially aware of differences in others.          
     We have been holding our breath with Owen this summer, because we knew this would likely be the year that his friends would begin to wonder why he does some things the way he does.
     We've done everything in our power to protect him from what can be a cruel world - from therapies, to a religious private school with small class sizes - but we knew that eventually, this day would come.  No parent, ever wants to have their child teased, or considered different from their peer group, especially for something that can't be controlled.
     Enter Owen's 1st grade teacher.  I found out over the summer that a family that moved into our neighborhood had a woman that recently got hired at the kids' school and that she would be teaching first grade.  Since there are only 2 first grade teachers at our school, the odds were likely Owen would have her.
     Since she's of the same faith, I quickly hunted her down at church to learn all about Owen's potential teacher.  She has children my age, but age aside, from the moment we met, it was apparent to both of us that we were kindred spirits.
     She radiates warmth, kindness, and has about the sweetest disposition you'll ever see.  She also had experience at her previous private school working with a few high-functioning autistic kiddos.  I knew she'd be the perfect fit for Owen and his transitional year and when we found out Owen was placed in her class, we all exhaled a sigh of relief.  
    From the first day of school she has texted me and we've chatted late nights about all things life and ways she can help Owen socially this year.  She told me that Owen's class is quite mature this year and that within the first week the students are already noticing Owen's differences and some are getting quite frustrated with him.  And wouldn't you know - this angel of a teacher has found opportunities to talk to Owen's classmates about what it means to be a child of God and that they should love everyone in the class, even if they do things differently.  She has dropped off Owen's folder on her way home from school, when he forgets it and gets a lot of anxiety about it, and she gives just about the best hugs anyone could ask for. 
     What could have been a potentially devastating school year for both Owen and his parents, has already turned into one of the most blessed years we've had.  I continue to be amazed at how much our Heavenly Father loves each of our children, and that his plan is so perfect for them.  His teacher, who has become an amazing friend of mine, was an answer to our prayers.  I'm so grateful she loves our little Owen and sees in him the potential and the genius that is sometimes masked by social oddities.  Owen's journey in life will be so unique - just like he is, with highs and lows - but we know of a surety that he is a beloved son of our Heavenly Father, and that with some help from mortal angels along the way, his path will be sure, blessed, and perfect for him.  

Tuesday, August 12, 2014

Rods and Tubes

    I really need to get better at keeping up with this, at the very least for posterity's sake.  Next week, Evey and I will be left alone for the first time in our entire lives - the older 3 will all be attending our beloved American Heritage School together - what a bittersweet day.  So, there will be much more time to blog, work with Nate, and hopefully clean.  Maybe in that order, maybe not.
     On a short note, Evey had yet another spinal expansion surgery.  She handled it like a champ; we still don't take that for granted.   She came out 2 inches taller, a little mad at me, but mostly hungry.  Which brings me to what I've been wanting to write about for a while.  Evey's tube feeding weaning success story.

    Outside of the medical world, the tube feeding phenomenon is a little hard to understand.  There are several different reasons why a child has to be tube-fed; Evey's was apparent from her first few weeks of life.  From the very beginning, Evey didn't have the proper throat function or construction to swallow food.  Most of what she drank from her bottle ended up right in her lungs, which ended up turning into pneumonia, which ended up with her going straight to the PICU at Primary Children's Hospital, which is where she lived for what seemed like the whole first year of her life.
    By year two, she had received over a dozen surgeries, she was getting stronger, and was able to take bites of food.  However, most doctors, nutritionists, and dieticians usually don't have a clear-cut 'weaning off the tube plan' because every child is different, and quite frankly nobody wants to get sued by telling a parent with a medically fragile child to wean their kid off their main food source ... trust me, I get that.  So we were doing bites here and there, while supplementing with formula through her tube.  In return, Evey's GI tract got really angry at her.  She started vomiting more and we got so frustrated we just wanted to return to the formula altogether.
    As a last ditch effort, I decided to stop in at a different dieticians office at the hospital while we were there for a surgery, and this awesome, bold dietician told me to just go try and feed Evey by mouth all during the day and make up for what she wasn't eating through formula at night.  We tried that for a week and it went pretty well, but she still wasn't getting enough calories during the day.  She would barely drink anything throughout the day because the formula she was getting at night kept her full and not thirsty, and she still had vomiting issues.  So one Sunday night after much frustration and prayers over the issue, I looked at Nate and told him, I'm just going to cold turkey her for 3 days.  I'll count her calories, keep a close eye on her, and if she loses weight and gets dehydrated I'll put her right back on the tube feeds.  My mothering instinct was telling me to go for it.  (Disclaimer: all of this which is not medically advised - I am by no means a doctor, nurse, or medical professional - even though I pretend to be a lot of the time) but hey a mother's gotta do what a mother's gotta do.
   So after 3 long, incredibly stressful days of counting calories and layering whole milk with heavy whipping cream, our girl did it!  She conquered the tube beast, and decided that food is for her and she wanted to be a part of the gluttonous party.  We are officially 5 weeks tube-free and one surgery out and she has gained a pound!  She has not gained this much weight this quickly in a long time.  Needless to say, we are so happy.  We are still working hard staying on top of her calories, but we are officially out of the woods.  She now has an incredible appetite and is a legitly a Johnson and gets full on hangry. (hungy/angry)
    All of the stars had to align for a successful wean and by no means is it this easy and advisable for everyone (more disclaimers), but we are so grateful and so happy to have some typical toddler stuff going on with our 2 year old lady who is anything but typical.  We love you Evey, especially your older sister Zoey, who now follows you around trying to feed you everything because she's so happy that you can eat with her.  And as usual, Nate and I cannot take credit for Evey's huge accomplishments.  Her spirit is strong and we continue to have amazing support and love both on this side of Earth and from her peeps on the other side.  We are blessed.