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.

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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.

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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

Friday, August 22, 2014

Everyday Miracles

Yet another…

How this little boy gets such a kick out of life’s simple things… like watching the washing machine do its thing.  He asks “see? see?”.

Reuniting with old friends for brunch.

Getting together with new friends for lunch. 

Watching my biggest man and my littlest man really start to bond.  Sometimes it’s over something as simple as a lesson in barbecue.

Remembering how it all began.  Our second date nearly 13 years ago.

Bringing us to where we are now.  My birthday present from Jake was a date to our see our new favorite band (The Head and The Heart) play live.

They were amazing.  They make me want to swim in the stars.

My helplessly adorable piggy tailed princess.

A rain storm that followed irrigation makes for a beautiful wet mess in the yard.  The kids were all over it.

A couple of falls later (some accidental, others not so much), and everyone’s soaked to the bone and looking pretty refreshed.

Playing in a wet wonderland with my baby.

This hot guy is my husband.  Is it any wonder that I decided I wanted to marry him within minutes of seeing him for the first time?

Spending a gorgeous afternoon with our dear friends in their beautiful country backyard.

Bella loving a chicken.

The friggin supermoon behind the clouds.  It slays me!

Shampoo everywhere thanks to the cutest little monsters I’ve ever seen.

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Tuesday, August 19, 2014

Everyday Miracles

I have so much to be thankful for.  Someone I admire said that our Instagram collection is like a cellar that we keep stockpiled full of beautiful moments and memories, that we can take heart from when life isn’t so glorious.  I have to admit that while life is certainly not without its “off” moments (I had a “off” two hours after school today), things are pretty sweet right now, and I have to stock up my cellar while I can.  And with that, here are some of our everyday miracles.

The most amazing trip to Disneyland that we have ever had.  And that’s saying a lot.

A day out in the middle of a gorgeous lake with just my husband and our good friends, Sheena and Scott.  I went tubing with Jake, and I screamed the entire time.  I wasn’t scared, but I was so full of adrenaline that I needed a release.  A release that came in the form of blowing out Jake’s eardrums.

Sweet Tooth Fairy for dessert on my birthday.  One of my best friends of 11 years, Amber, just happens to own this enchanted establishment, and she gave us every sweet that we so much as glanced at.  Sweet Tooth Fairy takes the cake for best cupcake in Phoenix. 

Speaking of fairies, Bella got her first visit from the tooth fairy.  While admiring the hole in her mouth in front of the mirror, she said "This looks so cool. I look like a second grader. Now, I think I need glasses. That would look cute with this."  Worth noting that she said to me earlier that same day, Bella: “Mom, can you take off your glasses?… You know why?”  Me: “Why?”  Bella: “Because you look like Fancy Nancy’s mom”. 

Impromptu trip to Sedona, because we decided we needed this view at lunch.

Our family.  Gorgeous weather.  New Mexican green chile pork stew and a Cuban sandwich that was to die for.

This view out the rolled down car window.

The way the sun looked glistening through the trees and reflecting off Oak Creek. 

That day Liam learned how to sate his own bubble craving, and I found him in the garage doing this.

My family birthday celebration with my sisters and their boyfriends.  They ordered me beautiful charcuterie and bruschetta take-out from Postinos, and we spent quality time late into the night.  Quality time is my favorite.

I feel like this picture of Bella is a metaphor for how she approaches life… with awe and innocence and confidence and skillfulness.

Bella made a new friend at her Special Blessings summer party.  Like Bella, her friend has no need for two hands either.

My view from my bathtub at night.  There will always be a moon picture.

Liam is now a ham. He likes to pretend that he is on a commercial for cereal and applesauce and pretty much anything I ask him to advertise.  He takes a bite and smiles and holds his spoon up on cue. 

The kids built this “fort” without my help.  Without even wanting my help.  New frontiers.

And just when I thought it couldn’t get any better, I walked in to see Gabe reading to his sisters in the fort.  PicMonkey Collage8-18-14

Sunday, August 17, 2014

Our Beloved Babysitters

There are a few things in this world that I can credit with helping me to maintain my sanity.  One of them is staying up late… till 1 or 2 am every night, so I can have the space and time to think, research, edit photos, read blogs, and online shop till my heart’s content.  Another of these things is caffeine at 3 pm.  I never drink caffeine in the mornings, because then what do you do when you’re hitting the floor at 4 pm… drink more?  Not me; I have it down to a science.  A third thing is being able to rely on at least two people, outside of Jake and myself, to be able to care for my children in every way and even run my household for a few hours in my absence.  And being able to count on at least one of them at a time to say “yes” to this task when I need it most.

These two beautiful people are our babysitters, Brittany and Brooke.

We have known Brittany since before little Liam was born.  We saw her most days of the week at first, but when she got a job as a first-grade teacher, she still came back to us every day during Ari’s Conductive Education program each summer for the past two years.  Ari’s Conductive Ed program does Ari more benefit than probably any other single therapy.  The progress that she makes in those four weeks is unbelievable.  And while it kills me to leave my other three kids every single day for four weeks of their summer, I couldn’t feel better about who they’re with.  I know that, not only are they being cared for and nurtured, but that they are learning and having all kinds of fun and new experiences.  And when I got home every day, they were always excited to tell me about what awesome activities they got to do with Brittany.

Brooke worked with us after school for much of last year, and even after she had to stop working with us regularly for college, she still babysat for us on date nights.  Date nights are our salvation.  Like everything else we do, we try to make our date nights as memorable as possible, if we can help it.  No chain restaurants.  Jake and I try to make those valuable hours count, and while we’re living it up and remembering what we find so enchanting about each other, I know that my kids are in great hands with Brooke at home.  And finally, I am able to truly relax.

For the first time ever, this summer, I felt comfortable and secure enough to leave our kids overnight… in a different state… for three days.  This made history.  Gabe and Ari are 7, and we have yet to do this until this summer.  What coaxed me to embrace the freedom?  These girls.  They were willing to both stay so Jake and I could finally leave without a worry.

These kids are so lucky to have these amazing young women in their lives who love them like family and feel so invested in them.  We love them like our family, and for me, that’s saying a lot.

The following photos were mostly taken by Brittany, and all the others were taken by Brooke from this summer.                                                                       IMG_6034 IMG_6023 IMG_6035 IMG_6309IMG_6300 IMG_6313unnamed (2) IMG_6979 unnamed (3) IMG_6984IMG_6225 IMG_6223 IMG_6226 IMG_6224IMG_6306 IMG_6027 IMG_6024 IMG_6026IMG_6332 IMG_6593  IMG_6312 IMG_6319 IMG_6330 IMG_6320unnamed (6) unnamed (7)IMG_6322 IMG_6398 IMG_6426 IMG_6392IMG_6431 IMG_6434IMG_6420 IMG_6424 IMG_6422 IMG_6495IMG_6478 IMG_6484 IMG_6482 IMG_6485IMG_6488 IMG_6491 IMG_6490 IMG_6493IMG_6499 IMG_6500 IMG_6574 IMG_6591IMG_6507 IMG_6781 IMG_6785 IMG_6836IMG_6837 IMG_6889IMG_6888 IMG_6872 IMG_6859 IMG_6873IMG_6875 IMG_6876 IMG_6877 IMG_6878IMG_6847 IMG_6846IMG_6882 IMG_6883 IMG_6899 unnamed (1)IMG_6906 IMG_6907