Wednesday, October 1, 2014

A Saturday

Some Saturdays are all-around amazing.  Some Saturdays are less than good.  But most Saturdays are somewhere in between with a mix of good and bad, special and simple.  Those are the ones that don’t get highlighted very often.  This was one of those Saturdays.

Ari began a new year with Inferno, her special needs cheer team at Arizona Heat.  She was so excited to get to be in the middle of the action again.  Many a Wednesday afternoon had passed where she sat behind the spectator window, watching her sister’s lessons with Tommy.  And although she has the lowest physical ability level of all the girls on the team this year, she will no doubt make up for that in her energy and radiance at the competitions just like she did last year.


Bella trained with her amazing coach, Tommy, while Ari was with her team’s practice.  This one works hard, but she loves to be silly too.

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She is like, so strong.

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Liam and Ari, who are normally rivals, called a ceasefire and played nicely together for a little while.  Ari and Liam - who is still very difficult to understand when he speaks – babbled away together incoherently and seemed to understand each other perfectly well.

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Jake reattached Ari’s and now Bella’s shirt strap with needle and thread.  I am hopeless when it comes to sewing, and prefer to use liquid stitch, safety pins, staples, or a mix of all of the above.  I was impressed by his skill and touched at the sweet gesture. 

Honeycrisp apple season has begun.  These apples are the best and rival Bella’s face in their size. 

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We put the kids down for a nap so they could rest up for some birthday parties that afternoon.  Bella had one for one of her besties, Claire, and the family had one for my nephew, Vance.  Later on, we would all plan to celebrate Jake’s brother, Ryan’s as well.

But Ari had a seizure.  It was her second in the month of September, and maybe her sixth or seventh since January.  Bella found her and alerted us again.  Bella says that Ari always lets out a cry just before her seizure.  Hopefully, she continues to do that.  We stopped the seizure with her rescue Klonopin.  Ari slept and slept after that.  We thought that would be the end of her day.


We sent Bella to her friend’s party, and I let Jake take Gabe and Liam to Vance’s party.  I stayed home with Ari.  When she awoke, she was irritable and upset to be left behind.   When I asked her if she wanted to go see everyone at Vance’s party, she told me she did, so I packed up my emotional, drowsy girl and headed that way.  She was so happy to see everyone, but she was especially enchanted with her Uncle Ryan.  She has post-seizure eyes here, but she can’t help smiling at her silly uncle.

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Someone was happy to see me too.

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Vance’s birthday party was at Flow Rider, which is this amazing surfing / boogey boarding simulator.  It is pretty intense, making it really fun for kids and parents too.  The boys had a blast, riding it over and over.


Liam even got on with his board tethered to the lifeguard.


Of course, Ari couldn’t let her brothers have all the fun.  She demanded a turn on it.  I tried to resist because of her seizure but a few hours earlier, but she was insistent.  So she borrowed her younger cousin’s bathing suit, and we plopped her on.  It worked out okay.  Alright it was awesome.  It was truly amazing.


She had the best time, and even broke the rules by letting go of the board to splash herself in the face.


I think everyone would like to go back there.

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Even me.


That night, we celebrated Uncle Ryan’s birthday with dessert at our house.  Ice cream of course.  I don’t know of anyone that loves ice cream as much as the Taylors and the Shobes.  Ari took a bath and seemed more or less back to herself.  I picked up Bella from her friend’s house.  She had had an amazing time at Claire’s tea party/Build-a-Bear party.  The kids ran around on a sugar high and the parents chatted from reclined positions, trying to fight off the fatigue of a full day.  It was a good fatigue.  We were happy to be together and reunited for a even a short while and to have our house full of family again.


Saturday, September 27, 2014

Everyday Miracles

So I know that I’ve been posting way more Instagram pics than real content lately, but I just don’t want to forget the little things.  If I could only rely on my real camera to capture the everyday miracles, I would be up a stream.  Lucky for me, my phone camera can capture the confetti that would otherwise slip through the cracks.

Sharing one of my favorite childhood memories – a creek walk – with my kids on the day it poured. 

Coming home with pockets full of loot – mostly quartz from the wash.

A front yard that looks like the bayou // we played in it.

Receiving a pretty peach pie from your neighbor.

Liam began his first swimming lesson // the only tears came when it was time to go home.

Baby shark is getting stronger in the water.

Jake hung my beautiful chandelier // the way the light dances around the room has me swooning.  Land of Nod chandelier.

Liam can elevate even the simple act of eating a peach and saying “peach” to a whole new level of adorableness. 

Ari is taking steps in her walker // she is motivated by promises of Disney music videos on the phone.

I know one day I’ll miss this beautiful mess and even the nightly clean-up ritual that accompanies it.

My drive home on our country road.

Mommy-daughter Botox date… I didn't get any.  Hers required anesthesia and didn't touch her flawless face // it did help relax her right arm and hand though.

Playdate at the mall // sometimes you just have to give in.

First manicure in two years // it’s the little things.

When it’s Friday.

My pocket-sized entertainment accompanies me wherever I go.

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Sunday, September 21, 2014

Ari In A Nutshell

It appears that it has been a very long time since I gave a real update on Ari.  I can tell, because whenever I have posted a photo or a video featuring her, friends and followers seem to be surprised at her progress.  There is so much to say, so it’s hard to know where to start.

I’ll start with the photos.  I took these pictures about a week ago when Ari and I went to Cardon’s Children’s Medical Center for an elective Botox procedure on her right arm and hand.  Her right arm has always been really tight and weak, but it has gotten worse over time, so I decided to give her a poor arm a short break (3-5 months) from the constant tightness and cramping by getting Botox injections in her right bicep, forearm, and thumb.  It is also our chance to stretch her without causing her pain and build strength in her arm before the tightness regains control.  It worked, and while she needs to work a lot harder to use her right hand as a helper, such as with holding on to grab bars in the restroom, it is much looser and more comfortable for her.  She did not have any complications in the hospital, and she actually really enjoyed her short three hour visit.  She became a fast favorite of her nurses and doctors.  She listened to Frozen songs on their paging devices and both fell asleep and awoke from anesthesia with a smile.


Ari has not had any other hospitalizations, and we are very thankful for that.  That isn’t to say that she has not had seizures though.  No, it isn’t saying that at all.  Ari’s seizures have noticeably increased in frequency.  At one point, Ari was only having one seizure per year, but so far, this year she has already had six or seven.  The past two seizures have both been within nineteen days of each other.  The most recent one was this afternoon.  While we still don’t know for sure any triggers, the seizures have gotten more predictable.  Lately, they seem to occur when she is asleep.  They used to happen at any random hour of the day, but recently that hasn’t been the case.  This isn’t good.  She usually lets out some small cry for help right before she starts seizing.  This has alerted me in another room once, and every other time, it has awoken Bella.  This is good.  Sometimes, Jake and I think that she has seizures more often when she’s hot.  They have historically come on more during the summer months or when she has a fever.  Her room here, despite the giant fan overhead and the $705 electric bill this month, is still warm.  I had our A/C guy look at the ducting, and he says that the route to that room is pretty hopeless, so I’m having him reroute that piece.  But honestly, we’re still just shooting in the dark. 

Ari’s gross motor progress hasn’t been great, despite her motivation to take more steps in her gait trainer and her Upsee.  Her legs are much weaker than prior to her surgery in 2013, and even with all her efforts and many hours in physical therapy, we have not been able to get back what strength she had before.  She always is her strongest during and right after her summer Conductive Ed program with Gaitway.  I don’t know where she would be without her summer Conductive Ed.  But the fact of the matter is, she is much heavier now than she was even a few years ago and as much as I find her 52 lbs. difficult to carry around, she is having to deal with that much more than I.  Weaker legs + a heavier body don’t make for a great combo… especially when you’re seven years old and only want to play.  I mean, she will work for Frozen.  Thank goodness for Frozen.

Her left hip is bad now too.  I swear it’s because of the Rhizotomy, and I can’t be told otherwise.  Her hip had very nominal dysplasia in 2013, but in 2014, she has 50% dysplasia on the left.  We have a hip surgery in her future, and it’s only a matter of time, but I’m trying to postpone it until she’s more or less done growing.  This will reduce the chances of her having to repeat it due to changes from growth.  No one wants hip surgery.  Let alone twice.  There will be weeping and gnashing of teeth on the day that we are told that she needs it right away.

That basically covers her physical health.  Now, academically and cognitively – that is where we’re making the big gains.  I don’t even know where to start on this topic.  Ari is reading long lists of sight words.  On a list of 40 sight words, she can pick the word I say from a field of 6 with about 90% accuracy.  I had to buy more storage on my iPhone to accommodate all the videos (proof) I have of her doing this.  She can count to ten and count items.  She is learning to verbally say so many more words.  She is motivated to speak so much more every year that she is in school (fully mainstreamed) than she ever was at home.  She knows all of her letters, upper and lower case and the sounds they make.  She sounds out words verbally when she is reading a word she doesn’t have memorized.  She got an 80% on her last AR reading comprehension test (modified to 2 response multiple choice).  She can handwrite her first and last name all by herself (with light support on her wrist to keep it on the table).  With the same minimal support, she has hand copied a complete sentence on her own without anyone assisting her or telling her what to write.  She has recently begun to take off with using her new iPad Touch Chat augmentative communication device to speak.  She actually initiates conversations on it and replies to questions using it without needing to be prompted.  She is beginning to type words and sentences on her iPad keyboard.  As you might guess, I am thrilled with her progress!  I feel like I am getting to know her a little more all the time as her thoughts are coming out through her newfound language.  Who knew she loved dried cranberries so much?  She is tickled that she can express that want to me and for it to be reciprocated with her favorite snack!

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With all of Ari’s new gains and continued struggles and years passed, a mother’s heart will still never lose the hope that she will one day see a miracle.  And while everyday miracles are beautiful and celebrated in our world, I’m talking a true blow-your-mind miracle.  The kind that makes headlines and restores people’s faith in God.  And I know that’s not really the right thing to say.  The right thing to say is that I wouldn’t change a thing about Ari even if I could.  But authenticity really pulls rank in my book, and I hardly ever say the right thing anyway.  I say the honest thing.  But I’m just like every other loving parent that ever lived.  I don’t ask for any more or any less.  I want my child to have every opportunity, every good experience, every joyful or meaningful moment that the human existence can offer.  And if not all that, then I at least want her to have a fair shot at it.  She wants that too.  Trust me, yes she does.  But either way, we will be happy.  As long as she is here with us and she still smiles her gorgeous smile at me every day and tells me “I luv-a Mom”, my heart will be full and filled with gratitude at the miracle that she already is.


Friday, September 12, 2014

Everyday Miracles

When your friends surprise you with your favorite cheesecake at 10:30 PM. 

Getting a homemade Utah Peach Pie brought over by your favorite next door neighbor.

All this glamour in such small bodies. 

Being groomed and styled by my biggest little fan.

The cooler temperatures are finally bringing my roses back to life.

Bella’s first floral arrangement.

Date night in. S'mores, game night, and some seriously good company.

This dude was heavily rewarded for laying on the charm at the doctor’s office.

We scoped out our local farmers market one Saturday morning, and my kids got lots of free food.

Cracking open a jar of Taylor Farms apple butter to ring in fall.

Celebrating my dear friend, Sheena's, bridal shower at The Henry.

Enjoying a girls only brunch.

Bouncing baby boy on the trampoline.

Our shady spot… looking up from laying down on the trampoline.

Pho with Jake on a rainy day.

When the baby hides to delay his bedtime.

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Monday, September 8, 2014

Everyday Miracles

Living close enough to our cousins that we can run over to collaborate on everything from errands to baking muffins.

The apple cinnamon muffins that used up the last of the apples off our tree from this season.

This girl taught herself how to hula hoop with such grace and beauty.  But there again, she does that with everything.

Beginning the preparations for yet another of my children’s birthday parties.

Working hand in hand with Jake to clean Ari’s wheelchair.  Truly one of the most rewarding small projects we’ve done in a while.

Watching Bella have so much fun on with aunt in the pool.

How my little man wants to spend our quality time together.  We are teaching each other how to play chess.

Eating watermelon on Watermelon Street (this isn’t the name of our street, but I wish it was).  It tastes better if you’re not fully dressed.

Liam at Gymboree with his girl, Ava.

Taking full advantage of abundant cuddles with my bambino while the older kids are at school.

Watching these two dance partners tear it up on the kitchen floor.  The music almost never ceases in our house (except for nap time).

Waking up late on a Saturday morning to the sounds of my children playing on their new trampoline.

Doing whatever I have to do to get this boy to grin at me.  It is so worth the effort.

Weekend garage projects as a family.

The result of one such garage project was this PVC pipe bike rack.

Living imperfectly with this credo.  Accepting and embracing our/my imperfections as a part of what gives us wisdom, authenticity, and genuineness.

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Tuesday, September 2, 2014

Special Blessings Summer Party

We went to the annual Special Blessings summer party for Bella’s limb differences group.  We call it her “arm group”.  Every time we do something with this group or with any of Ari’s groups, we get to be both givers and recipients of information and insight.  We are as learners and teachers.  We both provide and receive support in a way that we didn’t know we were even lacking.

We talked with other parents about starting school and new beginnings and how to coach our kids on how to respond to the excessive attention they get because of their arms.  We talked about where to buy one handed ponytail holders.  We watched videos of doggie amputees.  We heard many an inspiring story about people who learned to change diapers and raise families without any hands or arms at all.  And the kids made some new friends.

Oh, and there was pizza and ice cream and a giant blow up slip n slide.  All in all, it made for a pretty rad afternoon.

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Gabe’s swimsuit: Gap (sold out).  See similar: here and here   |   Bella’s swimsuit:  Gap   |   Liam’s swimsuit: Target (sold out). See similar: here and here   |   Liam’s rash guard:  Target