Thursday, May 30, 2013

Track Tuesdays

The big girls had the opportunity to participate in a local running event for kids.  They were able to go to a local track once a week, where they got a few tips and then ran a mile.  On the last day, there was a "mini marathon", where they ran 2.62 miles through the neighborhood. 

Sedona absolutely LOVED the 100m of every lap when she ran past the stands.  The parents cheered for all the kids, and she absolutely soaked. it. up.
"Me?  Are you cheering for me?"
"That's right, I AM awesome!"
"Running rocks!"
"Keep cheering, I can take it"
 
"Let me hear my fans!" 

Sierra took it a little more serious.  True to her personality, she's focused on getting better and faster, which she accomplished.  Her miles got faster, her mini-marathon was a faster pace than our 5K a couple weeks ago, and she learned to pace herself better.  



At the end, they got t-shirts, water bottles, and finisher ribbons.  They loved it and will probably start running with Josh and I more often. 


Wednesday, May 29, 2013

Hello Tooth Fairy

Sierra lost her first tooth the day after her 6th birthday (that's over two and a half years ago, if you're keeping count).  Ever since then, Sedona has been trying to get her teeth to wiggle.  She was convinced for quite a while that if she pulled her baby teeth out, grown up teeth would come in right away.

A while back, she noticed she had her first wiggly tooth and she was SOOO excited that it was finally her turn to start losing teeth.  She wiggled and wiggled, and had us wiggle, and then yesterday she asked me to pull it.  This is quite different from her sister, who puts up a fuss about me pulling a tooth even if it's barely hanging on and spinning in circles.  I checked the tooth and it wasn't quite ready to pull.  She got serious about wiggling and came back to me a couple of hours later, "can you pull it out NOW?"

She had gotten the front completely free, so I agreed to pull it. 
She was just a little bit excited.  Then Sedona, being Sedona, told us she wants the tooth fairy to leave all of her teeth so she can make a tooth necklace to wear.  I'm not so sure about that.  She did get the same "first tooth privileges" of her sister: keep the tooth, plus $5. 

Today she's asking when the next tooth will fall out and how long she has to wait before she gets big teeth.

Wednesday, May 22, 2013

LOTS of Glow Sticks

Sierra and I did a nighttime trail run 5K together last Saturday.  The idea was to actually train for it and have a lot of one-on-one time taking some evening jogs together.  Then she got sick for a long time, Secora went into the hospital, and Sierra and I both got sick right when she got out.  So not much training was done.  We went and had a fun night together anyway though!

The race was held in a pecan orchard starting at 9pm.  There were so many glow sticks.  According to the organizers, they used over 1,000 glow sticks.  There was one tied to every tree on both sides of the course all the way through.  And everyone got glow necklaces in their packets, which most people wore in some form or fashion.  We weren't the fastest out there, but we sure had fun.  Sierra even ended up getting 5th place for under 19 women!  I think she also learned an important lesson on pacing.  She was very mad at me for holding her back and making her take walking breaks during the first mile.  By the time the second mile was over, she was running out of steam and said she was going to do what I said for the rest of the run.  She finished strong, sprinting across the finish line with a big smile on her face and asking to do more races!

Pictures are all with my waterproof digital camera (no flash) or phone camera, so the quality's not great, but the memories are!

Before we left the house.  She's holding her breath because she had hiccups.  She never had any signs of a migraine starting (her response to excitement/anxiety lately), but kept getting the hiccups over and over all evening instead!  She said that was way better than a tummy ache!
Arrived at the pecan orchard, one last picture before heading over to the start line.
Closer to the start, we ran into a friend who took a picture of us together
A brief look of what it's like to run through the dark with a lot of glow necklaces and headlamps around
video
At the end, the runners got pancakes. I saved mine because I wasn't so sure it would stay down if I ate it right away, but Sierra scarfed hers down
Back at the car, we blinded ourselves with the flash on my camera phone
I loved the nighttime race aspect.  I am not a morning person and that doesn't change just because it's race day.  I loved starting so late in the day.  Some friends said they didn't like double guessing their food choices all day long, but I had a bacon burger with onion rings for lunch and pulled pork for dinner and felt way more fueled than I do in the morning.  I never handle large amounts of food well early in the day, so I usually end up under-eating.  I'd definitely like to try a nighttime half or full marathon sometime. 

Sierra is more of a morning person and while she liked the 5K itself, she wants to give morning running a try.  She definitely had a hard time with recovery the next day just because she went to bed so late and thinks 7:30 is sleeping in. 

We had a great time, I'm looking forward to running more races organized by this group of people!


Wednesday, May 15, 2013

Flying Kites

What is it about kids and kite flying?  Few things seem as exciting as a kite to my kids.  So they got mini kites for Easter and had a blast with them.   I won't lie, I bought the mini kites because they were cheap and inevitably, kites get torn up.  It worked out well though, these little kites were perfect.  All three of the girls, even Secora, could get them in the air on their own. 









Tuesday, May 14, 2013

Food Aversions, Part 2


In part 1, I tried to explain the difference between food aversions and plain ol' picky eating.  Now to explain why this already sensitive topic suddenly ruffles my feathers so much more.  It's time for part 2, in which I describe the reality that kids will actually starve themselves. 

Last Sunday afternoon, Secora started complaining about her throat hurting.  Normally, this would not be a huge issue.  A 2 year old with a sore throat is frustrating to deal with, but nothing major.  However, we've been here before and we know that when our 2 year old develops a sore throat, she will typically stop swallowing. 

Everything.

It goes something like this: the first few hours, maybe even the entire first day, she complains about it, saying "throat hurt".  We give her advil, it keeps her relatively happy.  Then, as it gets worse, she starts holding her spit in her mouth.  She won't swallow it because the pain is too much sensory input for a child who already has problems processing oral sensation.  She also won't spit it out because not wanting to be dirty is part of her sensory problems.  She holds it longer and longer and longer until her mouth is completely full and it all comes out at once.  At which point, she cries a lot over being messy, maybe takes a drink of water, and starts the process all over again.  It's very difficult to get pain medicine in her at this point, food is nearly impossible, and fluids are iffy.

So, we did what we could through Sunday and made sure we had lots of washcloths and towels around to clean up the spit.  But early Monday morning, the virus she had caused croup to develop.  Now we had a persistent, barking cough that was aggravating the sore throat and making breathing difficult.  Now she's scared.  She's also suddenly increased her energy needs because she is working much harder than she should to breathe.  By the time the doctor's office opened Monday morning, she was retracting, even at "rest".  Her first diaper change on Monday revealed very concentrated urine because she had already slacked off on her drinking.

Monday morning, the doctor gave her a shot of dexamethasone (this is a particularly nasty tasting drug that my older child was able to take orally when she needed it, but no way that would happen here).  I asked about the concentrated urine and even brought the diaper with me to show.  It was orange.  I was told concentrated urine is okay as long as she does continue to pee.  My instincts said this was wrong, but I (wrongly) began to doubt myself.

Monday afternoon, getting sips of fluid into her was a battle.  She went 7.5 hours without a wet diaper.  I've always told other parents if their child doesn't pee at least once every 8 hours, they need to be seen by a doctor immediately.  So we called our doctor's office.  A nurse told us if she was drooling, she was not dehydrated. 

Now, this is right up there with, "oh, she's just a picky eater".  This advice may be fine for a typical kid who is dehydrated from vomiting.  They will naturally swallow what little spit is in their mouth and the inside of their mouth will appear dry.  However, a child who is swallowing nothing at all will appear to have a wet mouth until they are very severely dehydrated.   We were being treated like we were over reacting and that made me doubt myself even more. 

Monday evening and overnight, she had a little bit more very concentrated urine.  She had a wet diaper around 7:30am on Tuesday.  3:30pm (the 8 hour mark) came and went with no wets.  Again, the nurse at the doctor's office acted as though this was fine as long as she drooled.  All Monday and Tuesday, she did not get up.  She didn't play, she didn't walk around.  She laid on top of me.  By 5:30 I was done doubting my instincts.  Having been severely dehydrated myself, I knew two main things: getting an IV put in sucks worse the more dehydrated you are, and being rehydrated makes you feel a lot better.  We decided maybe the nurse was right and she wasn't that bad off, but it'd be easier to get the IV now anyway.

Our neighbors very graciously took the big girls for the evening and Josh and I headed to the ER with Secora.  The doctor made not one mention of "she won't starve herself" or "just go home and make her eat".  Instead, he told us he'd look for medical reasons she was refusing to swallow and if he didn't find anything obvious (like strep throat), he was going to admit her.  He understood that we couldn't just make her drink anything.  I had mentioned the possibility of being admitted to Josh, but it still took us by surprise that it came up so soon.  I tend to be what some people call a pessimist (I prefer the term realist), so I think we both thought I was just throwing out a worst case scenario.  Well that, and we'd had a "oh, that's cute, you have a picky eater" nurse telling us for 2 days that she was fine.  An exam and a few tests later, she had no fever, no ear infection, no strep, no pneumonia, her croup was very nearly cleared (breathing easy at rest). 

The doctor explained (very correctly) that he could give her fluids and hope it perked her up, but she probably still wasn't going to drink, so as soon as she got home, she'd start dehydrating again.

We placed an IV and tried anyway.

It didn't work.

So after her pedi sized bag of saline, she was wheeled up to pediatrics, where a dextrose drip was set up and we settled in for the night.  She still refused to drink, and she still hadn't had wet diapers.  In the middle of the night, she was given another bolus of saline, which finally got a wet diaper, 24 hours after her previous one.  In the morning, the nurse came in with a pad of paper and said, "okay, I know she's an OT kid.  What does she eat at home?"  I'm used to hospitals being a bit bureaucratic and wasn't quite sure what to make of this.  I was having a hard time thinking of anything that comes out of a hospital cafeteria that she would eat. The nurse reassured me, "no, everything.  Tell me everything she eats.  We'll find as much of it as we can."

A lovely woman from food services came in with this:

That's not even all the food.  Then she stayed and talked to me about what she should bring for lunch.  She was very kind and said it was okay that Secora wanted grapes, but only purple grapes, not green grapes (which are softer).  I knew we were gonna be in good hands.  These people understood.  The doctor (actually MY regular doctor, not her's) sent in a speech therapist because they handle a lot of eating problems.  We got her drinking some again.

After trying what felt like every food available in the morning, her lunch tray was a little more focused:

Over a liter of IV fluids (most with dextrose) and about 16oz of apple juice later, I had my buddy back.  She was swallowing her spit and talking and starting to play again.

She still wasn't drinking or eating enough, so the flow on her IV was cut in half and we stayed a second night.  The next morning, her IV was disconnected completely to give her a trial run of being on her own.  She was finally drinking enough to maintain hydration and the deal was that if she ate lunch, she could go home in the evening.  She didn't eat. 

It was decided to discharge her anyway in the hopes that she would do better at home, where everything is familiar.  She still didn't eat. 

And now we've been home for 4 full days and she still isn't really eating.  Before this happened, she took in at least 1,000 calories a day in solid foods.  Now, she's anywhere from 300-500 calories of solid foods.  That doesn't come easily either, it takes offering a lot of different foods and constantly telling her "take a bite" to get that in her.  She is back on pediasure to make up the difference.

To get back to where she was, she needs to be working with an occupational therapist (who handles the sensory aspect) and a speech therapist (who handles motor problems that hinder swallowing and any behavioral component) again.  Our insurance considers these therapists specialists, so we pay $45 per visit and it's quite likely she will be going two or three times a week for a while.  The amount of pediasure she's taking right now costs about $75/month.   All together, we're expecting at least an extra $500/month in medical bills for her for the foreseeable future (not counting the hospital bill that we haven't gotten yet). Obviously, we will re-work our budget and get her the help she needs.  But I'm definitely not thinking to myself, "yay, we have a picky eater and get to pay for therapy!" 

She spent three days in the hospital, she lost about a year of progress, she's getting half her calories from pediasure (and still running short) and she needs therapy precisely because she is NOT a "picky eater". 

So next time you're at a restaurant and see parents you think are being too permissive, consider that maybe there is more to the story you don't know.  Just because the kid is allowed to eat nothing but french fries out in public doesn't mean they aren't working their behind off at home.  Maybe the family is just wanting to grab a quick meal in peace.  Maybe they're even purposely being considerate by trying to avoid a meltdown.  Maybe the child is primarily on a liquid diet and they're thrilled s/he is eating anything at all.  You don't know.  So don't assume.

3 years ago, I didn't get it either.  We knew a girl who wore clothes 2 sizes too small and only ate cheetos (in public, anyway).  I ignorantly assumed that a child who could handle cheetos could handle anything.  I didn't know.  I didn't understand that sensory-seeking kids may need tight clothes to help them stay regulated, and can prefer hard, crunchy foods with strong flavors.  That's the catch-22 of this situation.  You work so hard to make progress and then you hit that no man's land where the kids are acting just "normal" enough that people start thinking you're a horrible parent who's just too lazy to make them eat something different, or buy clothes that fit, or let them get dirty.  No matter how thick your skin gets, that hurts.  It hurts to spend so much time and effort helping your child and then be presumed lazy.  It hurts to think of how the child might be treated as they get older by unsympathetic adults or mean kids.  A little understanding...even just enough to stay quiet and not comment at all...goes a long way.


Sunday, May 12, 2013

After Eight Cake

Last week, Josh and I celebrated our 10th anniversary.  We were able to go out without the kids for 7 whole hours, which is a rarity that only happens once very few years.  Then the next day, Secora got sick and that ended up with her in the hospital, so I'm just now getting around to posting about this delicious cake I made.

I found this recipe in Feb/March edition of Cook's Country (a great recipe magazine worth subscribing to, and no one paid me to say that), and slightly modified it to accommodate what I had on hand

After Eight Cake

Ingredients:
10oz semi-sweet chocolate chips
1c plus 2tbsp heavy cream
1/4c corn syrup
16tbsp butter, softened
1 1/4 tsp mint extract
1 1/2c powdered sugar
2 recipes basic brownies, uncut

Directions:
1. Bake brownies and set aside to cool
2. Place chocolate chips in a bowl
3. Bring 1c cream and corn syrup to a simmer over medium heat and pour over chocolate chips.  Whisk until smooth.
4. Add 4tbsp butter and 1/2 tsp mint extract to mixture and whisk until glossy.  Refrigerate about 1.5 hours until spreadable.
5. While waiting, use mixer to mix 12tbsp butter, 2tbsp cream, and 3/4tsp mint extract until smooth. Slowly mix in powdered sugar until smooth, then whip until fluffy.
6. Assemble cake by placing one recipe of brownies on a wire rack, spreading entire mixture of buttercream on top, then topping with other brownie recipe.  Frost cake thinly with chocolate glaze.
7. Microwave remaining glaze about 1 minute, until pourable.  Place wire rack and cake on a cookie sheet.  Pour glaze over cake, reserving a few tablespoons for decoration.  Remaining glaze can be piped on using a zip top bag.
8. Refrigerate cake until glaze is firm, then transfer to serving platter. 

A few words of warning: This is VERY rich, you only need very small pieces.  About 2"x2" squares are a good serving size.  Also, after the initial refrigeration, I left it on the counter, which worked fine except for the early morning sun melted the glaze off one side of the cake.  So if you're going to leave it out, be sure it's not in direct sunlight.  I thought the texture was better when it was room temperature, so I wouldn't want to leave it refrigerated all the time.



Friday, May 10, 2013

Food Aversions, Part 1


After I wrote this post, I recognized that this topic still causes some really big feelings for me.  A lot of anger.  This anger is borne of the fear that my child will never eat normally; that this daily struggle she and I (in particular, because I'm the one who spends the entire day with her) deal with has no end in sight.  So rather than publish, I saved it.  I thought it was prudent to sit on it a while longer and be sure I still wanted to say what I said in the way I said it.  However, we spent this week caring for a child who had to be hospitalized for several days because she would not eat or drink anything at all.  I want people to know a little more about what this actually is.  I hope someone looking for information about food aversions in kids will find something other than "oh, it's picky eating" and maybe have a little more compassion for a child in their life who deals with these issues.  So rather than sit on the post, I'm not only publishing it, but making it a two part "series".  First, my original post about our history with food aversions.  Soon, I will be posting part two, explaining how we landed in the hospital and what the future holds. 
 
I happened across a thread on a local forum recently about food aversions in kids.  I don't normally read the forum and have never posted on it, but I occasionally end up there when I'm searching for info about a local news story.  The title about food aversions caught my eye, so I opened up the thread.  A parent was asking for ideas about what to do next for their children who had been through OT and still suffered from aversions.  Allow me to paraphrase some of the enlightened responses: 

Putting a knot on their head works.

When I was a kid, you ate or starved.  "Root hog, or die".  Now every kid has a label and goes to therapy, I wish parents still controlled their kids.

Make food available, the kid isn't going to starve.

I was completely taken aback by the callousness and ignorance.  Some one suggested these people google food aversions, but that didn't seem to be changing anyone's perspective.  So I googled food aversions.  I came up with all sorts of stuff about picky eaters and did not easily find anything at all describing true food aversion. 

So, having sat with this for several days and still being pretty ticked off about it (and yes, defensive), I decided maybe it would be useful to someone at some point to read more about what a food aversion really is. 

To begin with, my oldest child was an extremely picky eater.  And it was just that, picky eating.  She ate fine as a baby and the ewwwww phase didn't start until she was about 2.5 or 3.  I had no problem telling her she could choose to eat her dinner or go to bed without.  We often had a "just try it" rule, knowing it may take many tries before a child willingly eats a food.  There was never any doubt that she would eat if she was hungry enough and was receiving adequate nutrients.  She now eats a variety of foods, including plenty of vegetables, happily.  I recognize picky eating and have a track record of handling it appropriately.

My youngest child is NOT a picky eater.  She certainly would not benefit from a knot on the head, and she WILL starve herself.  My youngest has food aversions.  Officially, they're related to oral defensiveness, unofficially I explain it to people as "sensory issues".  There is speculation an OCD or similar diagnosis may be in her future.  She would only nurse and refused to eat at all until she was nearly a year old.  Even then, it took some time in occupational therapy to get her to eat any significant amount of solid food.  She went to OT because she was not gaining weight.  There was a plethora of food available to her, even "treats" like ice cream, but she would not eat.  The OT explained to me that to her brain, anything in her mouth was a threat, that her gag reflex basically covered her entire mouth.  The solution to this problem had nothing to do with forcing her to eat.  It involved exercises to desensitize her, things like rubbing her cheeks with a washcloth; performing brushing exercises on her arms, legs and back; holding an electric toothbrush on her cheek, and eventually her lips and tongue.  Only then could we start to work with food.  When she allowed one or two things, we could use those as rewards.  A system of "work first": touch this new food, then you can have the one you want.  Touch this new food to your lips, then you can have the one you want.  Put this food in your mouth and spit it out, then you can have the one you want.  With time, she was able to have a desensitizing drink before meals (a mix of sprite, orange sherbert and lemon juice) that helped her try more things.  Around this time, she would beg for food and scream she was hungry, but be unable to bring herself to eat most of what I offered her.  She would try, she wanted to eat it, and then she would shudder and gag when it touch her hand or her lips.  Often, she would try more than once, sometimes overcoming her initial aversion and sometimes not. 

After a year and a half of hard work, she looks like a picky eater to someone who doesn't know us.  The people who wrote those comments, who live in this town, would see us in a restaurant and think we are terrible, permissive parents.  There are twenty-five foods she will eat.  That's if I'm listing things like graham crackers and animal crackers or waffles and pancakes as separate foods.  Six of those are different kinds of fruit.  None of the others could be considered healthy.  Most of those foods must be prepared a certain way (i.e. instant oatmeal for breakfast...heated up, then put in the freezer until it's cold).  And what if we just don't?  What if we just don't give her the foods she wants?  Sometimes she just won't eat.  If she's really hungry, she has a meltdown.  Not a 2-year-old fit.  This is my third child and I work with babies and toddlers, don't insult my intelligence and my experience by saying I can't recognize a fit.  A meltdown.  If you've had a panic attack, you might have some insight into what she seems to be feeling.  These can be immediately short circuited by either holding her in a certain way and rocking, or allowing her to shut herself in the dark pantry alone.  Or, you can deny her those coping mechanisms and it will escalate.  She certainly won't be eating.  She's not choosing not to, she can't.  I know she will refuse to eat because I have been there, when I was pregnant with her.  I likened my food aversions during hyperemesis to someone setting a plate of dog poop in front of you and telling you to eat it.  That is how disgusting and revolting it is.  And I was starving.  I was in the hospital because I could not drink water without gagging and heaving.  I couldn't force myself past the physical revulsion.  You know the food challenges on the old show Fear Factor?  What if you were starving and the things on those challenges were all you were ever allowed?  Would the knowledge that you had to force that down stress you out?  Would you eat three squares a day?  Would your feelings be valid, or would you deserve to be hit if you chose not to eat?

So no, my toddler with food aversions is not simply a picky eater.  She does not need to be physically punished or served only foods she can't even bring herself to touch.  She's worked damned hard to get to where she is and she needs parents that understand that and help her make more progress.

Part 2 is now up, explaining what it looks like when a child does refuse to eat or drink anything. 

Thursday, May 9, 2013

An Unfortunate First

We made in through eight and a half years of parenting without any hospital admissions for the kids (plenty of ER visits, but that's different). Unfortunately, Secora was admitted Tuesday for refusing to eat/drink during and after a bout with croup. She is feeling much better and will probably come home today. Ironically, I already have a post sitting in my draft folder all about my frustration with people claiming food aversions/sensory problems related to food don't exist and that no child will starve themselves and they just need tough love.  I have lots more to say about that. 

In the meantime, here's a happy baby hanging out for a trial run without her IV hooked up to be sure she's ready to go home!


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