Conductive Ed Fundraiser

For the past two summers, we have enrolled Ari in a program called Conductive Education.  You can read all about it here, but suffice it to say that it is Ari’s most beneficial therapy.  It is so intensive, yet so motivating for her that she makes up for a whole year of physical regression in just four weeks of summer program! 

We attended a casino night fundraiser at Boondocks in Scottsdale with the aim of raising enough money to allow Gaitway to open a year round Conductive Ed program here in Phoenix, like they have in Tucson.  A permanent facility locally would be life-changing for Ari and so many other kids in the valley with motor challenges.  We humbly ask that you please consider donating $400 (per married couple) or $200 (per individual) in tax credit before January 1, 2015 to Gaitway (Individual Achievements Association) for this program.  Your donation will be fully refunded to you, dollar for dollar, when you claim it on your 2014 taxes. 

Tax credit was new to me this year, so I’ll explain it in layman’s for those who aren’t familiar.   When you donate before the end of this year, you will receive a receipt from Gaitway, allowing you to claim this on your 2014 taxes.  It is called a tax credit to a charitable organization.  Every Arizona taxpayer, regardless of income, or whether you are paying taxes or getting a refund only, is allowed a tax credit of up to $400 per married couple or $200 per single individual for this category.  If you owe AZ state taxes, the money you donated will be deducted from the amount that you owe in state taxes.  In other words, the state of AZ gives you the option to put your tax dollars towards Ari instead of Jan Brewer.  If you are eligible for a refund (lucky you!), the amount that you donated will simply be tacked on to your refund and sent back to you.  Dollar for dollar!  Not a percentage.  Every single dollar.  If you want to run this by your accountant, please call him or her today.  Gaitway is on the AZ approved charitable organizations list as Individual Achievements Association.  If you are familiar with tax credit already, please don’t hesitate.  Your donation will be helping Ari and many other kids like her so much.

Making a donation couldn’t be easier.  You can go to their website and click on “Contribute Today” or go directly to their Paypal donation page.  We appreciate you taking the time to learn about tax credit and how your tax dollars can help who YOU want them to help!  You are amazing, and thank you so much for reading!!!

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!

   

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.

As Long As It’s Healthy - by Kate Leong

What I’m about to share is a topic that I have wanted to blog about and talk about since my twins were born.  I have hesitated, because I am not inherently a graceful speaker or writer (truly, if you know me, you know that I am a blunt person), and I feel strongly that this topic deserves to be conveyed with grace.

I got my wish when one of my favorite strangers, Kate Leong, whom I’ve quoted in the past, reposted an earlier post that said it as beautifully as could be.  Yes, she wrote my heart out yet again.  Rather than basically rewrite what she has already written so perfectly, I figured I would share the entire post, because everyone needs to read this.

As Long As It’s Healthy – by Kate Leong

We've all heard the phrase...and maybe some of you have even uttered it...

"As long as it's healthy!"

Usually this comes up when a woman is pregnant. "Do you know what you're having? A boy or a girl?" and the Mother will reply, "I don't. And I don't care - as long as it's healthy!"

For some reason, this phrase has always tugged at my heart...even LONG before I had children of my own.

Everyone wishes for a healthy baby. Of course they do. The phrase, in itself, is not a rude thing to say. It's become a universal catch phrase - and the intentions behind it are more ill-thought than ill-intentioned. We all wish for ourselves...and each other...and for the unborn baby...health.

But what if we don't get what we wish for? What then...

Today is the first ever "World Cerebral Palsy Day". It's a day that focuses on people with CP from all over the world. It's not just a day to bring awareness and education...but it's also a way for people with CP to let the world know how they want their lives to change. Today I will be sharing private home movies that I've never shared with anyone. (And I humbly ask for your sensitivity...)

I have been Gavin's "spokesmom" since the day he was born. I look forward to the day that he can tell me to stop talking for him - that I'm getting it all wrong. But until then, I will continue to do my part to speak up for him, speak out about him...and change people's perceptions and attitudes. One person at a time. Gavin has a diagnosis of Cerebral Palsy, but that is truly a small part of his life story thus far. If you are a regular reader of this journal of mine, you've already watched him accomplish far more than what we were told to expect.

I never cared for the expression "As long as it's healthy" before Gavin. But since Gavin's birth, the words have taken on a whole new meaning. I think, for the most part, the expression is used as a way to stay hopeful during a pregnancy. Everyone wishes the best for their children and their families. And we were no different.

This is me...standing in Gavin's nursery...right before we left for the hospital. Ed thought I was crazy, but I wanted to take a minute to videotape ourselves for the last time as a family of two (and one adorable dog). We had no way of knowing that I wouldn't be back in that room with my baby for a month...

The universal phrase... "As long as it's healthy"... well, one could argue that didn't happen for us. The silence and rushing around in the delivery room was a pretty good indication that all was not well.

I signed up to be a Mom. Just as I wouldn't say, "As long as it's smart." or "As long as it's good looking." or "As long as it's straight."...I didn't say "As long as it's healthy." To be honest, now that I know so much about genetics and chromosomes and all the thousands of things that could go wrong - I think it's a miracle that any child is born "perfect" or "healthy."

Once Gavin was born, I went right into Mom mode. I didn't feel disappointed or 'jipped'... I felt protective and concerned. And love. Although to this day I am haunted by this particular moment caught on film. I told Ed all through the pregnancy that I wanted a photo of Gavin in the delivery room. He took his job seriously and asked the nurse before Gavin was whisked to me and then to the NICU. I should have told him to forget it. I should have said to the nurses that I could meet Gavin later. Keep the oxygen on him, I should have said. I wonder if, in my selfishness for a hello and a picture, I deprived Gavin from time without the oxygen. I have been reassured a million times, but it's one of my biggest regrets.

As Ed and I spent time in the NICU that would become our home, we were overjoyed getting to know our son. Ed had never held a baby that small - or changed a diaper, ever. He jumped right in and did it all. He even gave Gavin my colostrum as soon as it came in. We called it "Liquid Gold."

I spent a lot of time doing Kangaroo Care and pumping breast milk so he would grow and get stronger and get closer and closer to going home.

For all intents and purposes, Gavin was many people's worst fear. Can you imagine? People who would say, "As long as it's healthy" didn't mean this.

So to all of you who are pregnant I say - don't be afraid to be me. And to all of you who are sitting in the NICU next to an isolette - praying that they will tell you that your baby is fine - healthy - not 'imperfect'... don't be afraid to have a Gavin. And to those of you who just got the diagnosis - Cerebral Palsy. Do not despair! Gavin, as many of you know, is the joy of our lives...and many others. He is in many ways just like other kids his age! He has favorite foods and favorite movies and favorite books and songs. He loves crazy amusement rides and the ocean. He adores his Daddy and his little brother. He is now making friends and riding a bus to school.

When we sign up to have children, we aren't guaranteed anything. They could be born with a disability or develop one years later. They could be born with a defect or develop defects of character as adults. They could be born in perfect health, or have a serious illness. The important thing is - they are ours.

We left Gavin's nursery filled with hope on September 28th, 2007. We welcomed him into the world with hope on September 29th. We brought him home for the first time on October 28th, 2007 and the three of us (and one adorable dog) learned together how to navigate our new world. And then six days before Gavin's first birthday, we were told he had Cerebral Palsy. But what did that mean, exactly? Nothing much, really. It sure didn't change the way we were caring for him up to that moment.

When I stop to think about that silly phrase, "As long as it's healthy," it kinda makes me sad. Because if I had wished for that...and my wish had been granted...none of us would have the honor of knowing Gavin.

That - and not a diagnosis - would be the biggest tragedy of all.

Wouldn't you agree?

Our Ari.  Healthy?  Debatable.  Perfect?  Indisputable.

Annual Raising Special Kids Party

When I think about what a perfect world would look like to me, the picture that comes to mind might be different than yours or that of most people, even.

In my perfect world, my child(ren) would have the same basic abilities as every other child.  They would be able to excel at everything they tried to accomplish, provided they put determination, hard work, and all their effort into their pursuit.  In the future, they could rely on themselves alone to meet their basic needs.  In a perfect world, all of my children could button their own jeans, run and climb and dance, speak and sing and write.  In a perfect world, my children would only be gazed upon by loving, appreciative eyes, and their inner and/or outer beauty would be the first things that people noticed about them.

Now, I don’t need a single human to remind me of what blessings I do have.  My children, all four of them, are downright amazing little souls.  No one knows this truth as much and as well as I do, and yet, people sometimes feel the need to go overboard on reiterating this.  I know, it’s hard to know the right thing to say.  I get that.  I am a just mother who loves her children.  I love them for who they are in this moment, wholly and completely.  I feel gratitude for them so frequently that it’s often distracting.  With this love, I want what every mom wants for her child:  only the best.  I want them to have every opportunity, every worthy experience, every valuable interaction, every chance to be, love, be loved, do, create, learn, and live.  My hopes and dreams for each of my children have not been hampered my their physical differences or ability levels.  So, I guess all this is to say that my mama heart will keep on yearning for my perfect world.

With that said, my second perfect world is a world in which many other children are just like mine.  Wonderful, yes.  Blessings, yes.  Differently abled, yes to that too.  In some cases, missing limbs or without words or wheeling around in chairs instead of skipping on their beautiful feet.  An almost perfect world, to me, is one in which my children can easily assimilate and even thrive… and not just on their level, but on every level, because this world would be brimming with accommodations and helping souls and other moms who “get it”.  This is not meant to be a cruel wish toward other little ones.  It’s a wish for a more understanding and enlightened place, and a more level playing field (and sidewalk while we’re at it) for my children.  (This relates especially to Ari, since Bella seems to take everyone by surprise at how she mightily overcomes every odd set in her path.)

Why am I divulging my secret, inner-mama wishes?  Well, once in a while, I get to visit what would be my second perfect world.  The almost perfect world.  The next best world.  The annual Raising Special Kids Party is one such place.  Here, everyone gets it.  We may not carry around the same labels and diagnoses, but we are all the same.  The caregivers and the parents and the volunteers and the siblings and grandparents and the kids… the very special (not just special needs), but very special kids.  We all can appreciate one another for who we are, with little to no concern for what our bodies can do. 

On this very special day for some very special kids, we played.  And we did a great job at it too.

All of my kids love Gatorade.  It’s the treat of the drink world.

 

Gabe and Bella competed in the games (like everything else).  Notice how she holds the bottle while spraying with her other hand.

  

I can’t blame this girl for wanting to smooch that face. 

Jake broke out his dance moves for our new friends at our lunch table. 

     

We were so happy to have Grammy and Papa there with us this year.  It was so special to have them join us in our world.

            

Just like the year before, we left the party feeling a childlike inner peace and lightheartedness that can be so elusive in the day-to-day.  It was so freeing to be there.  I can’t wait to go back.