Slip 'n Slide

I don't have any memories of riding a slip 'n slide when I was a child, but something about it just screams "summer joy!", doesn't it? I highly recommend. When we first brought it out on Saturday, it was pretty chilly out (yes, you read that right, it was in the 70's!), so the kids were not feeling so daring and then the were hesitant to get wet at all. But, come Tuesday, I thought I'd give it another shot for Gabe's playdate with Landon and Presley, and it was definitely a hit with the big kids (Ari was in preschool, and Bella was content to wander about getting dirty). None of them actually slid on their tummies, but they did all kids of hops and slides on their bottoms and knees. Gabe has been asking if he can ride the slip 'n slide every day since! Who wants to come over next?

Cousins Visit

We had a surprise visit from cousins Vance & Madison, Aunt Ali (Jake's sister) and Uncle Darren. It was so unexpected, which made it even more fun! We went swimming and had dinner at our house. The kids loved having their cousins over. Gabe was nuts about Vance, and Ari couldn't keep fawning over baby Madison the whole evening.

{Bella got tossed around like a chubby doll by her Daddy}{The cold water didn't stop this kid. Vance plunged in and didn't look back -- blue lips and all. Look how he swims around like a fish in those floaties. It would be nice if Gabe would learn a thing or two from him!} {Pretty ladies: Ali & Madison}{Ari loves to splash around, but the water was a little too cold for her to go for it} {Gabe just chillin' on the step, terrified of deep water}

What a Little Lipstick Can Do

MRI Time

Ari went for her MRI/MRV on Friday. This MRI (the fifth in her lifetime so far) was supposed to determine whether or not her blood thinner treatment round had made any difference on the (possible) existence of a blood clot in her brain that they detected back in January 2010. Her appointment was scheduled late in the day, and then it was pushed back even further, so she had to go about 13 hours without eating (7 without drinking), and that was no fun. She was a way better sport about it than I was though. I truly think that a mother is torn at her core when her children can't/won't/don't/aren't allowed to eat. Aunt Marci was with us, as usual, so that made the time go by much faster and definitely lightened the load. Ari was sedated with anesthesia for the duration of the MRI, and was put to sleep with gas first, so there was no trauma to be had there, thank goodness (unless we're counting when I had to untape the IV from her inner elbow). Our nurse, doctor, and anesthesiologist were awesome -- especially our anesthesiologist, who I can't say enough about. We haven't heard results back yet, so I'll post those later when they come in.

{We hung out in the waiting room for about two hours before they called us in to her room. She was so patient and sweet the whole time.}

{Ari passes the time playing on her (I mean, Aunt Marci's) phone while we wait for the anesthesiologist to come in. Her shirt had a zipper, which is metal, so it isn't allowed in the MRI.}

Learning Her Power

About a month or two ago (I can't even keep track of time!), Ariana had her first power wheelchair evaluation. We had all of our ducks in a row -- therapist letters, doctor prescription, IEP from school. Everything was ready to go, and I was anxious but hopeful that Ariana would surprise everyone and drive that power wheelchair like she was born doing it. Of course, that wasn't what happened. Ari got into the demo powerchair (which was way to big for her), and she drove it like someone would drive anything, never having had instruction or time to practice, who happens to be three years old, and has never actually had any experience in life moving through space independently. So, this looked something like Ari driving around, pressing the buttons to increase her speed, bumping into things (which she would try to move out of her way with her hand, rather than avoiding them), and forgetting to stop & turn at appropriate times. All of this, to me, seemed totally natural. However, in order for Ari to pass her evaluation, Ari needed to drive the powerchair safely, meaning not pose a risk to herself or to others around her. We arrive at the "catch 22" when Ari needs the powerchair in order to practice, but can't get a powerchair until she's a proficient driver.

Okay, fast foward to chapter two. I was referred to a Physical Therapist, named Gail, who specializes in powerchair training in children. Although she's quite experienced in this, she is new to Arizona, and Arizona has yet to have any programs like this for children available. Hence, she's what you'd call a pioneer in this area in AZ. As our luck would have it, she had an opening to train Ariana in what is basically a pilot group of toddlers, provided that Ari's state insurance would approve some hours of powerchair training. I had my doubts that we would get approved for a variety of reasons that I don't even need to get into now, because guess what? She was approved for twelve hours of training!

Which brings me to chapter three of our story. Gail and our great wheelchair rep, Josh, had their first day with Ari on Monday. After spending quite a bit of time setting up the chair to get it as close a fit to Ari as possible, Ari got to drive. And she loved that chair! She made progress, albeit small, even in her first hour in the chair. She can operate the joystick and make it go! I am so excited for her! She feels like such a diva in her new set of wheels! She has already been practicing with Daddy in the evenings when he gets home from work. And after noticing that even after all the jimmy rigging that Josh did to the powerchair, and it was still a little large, Josh came back the next day to exchange that big chair for one that is a perfect fit! It was the one we wanted all along, called the Koala by Permobil, which has come highly recommended by a very trusted source. What's even better is that Ari will get to keep this demo at our house until she's done with her training and, hopefully, is approved for her very own. I am so happy that Ari is well on her way to independence in mobility! This will open up so many doors for her. We couldn't have done it without our wonderful trainer, Gail, or our rep, Josh. We've only just met them, and they've already gone above and beyond for Ari.

{Josh setting up chair number 1}

{Ari waits patiently to try out her wheels}

{sidewalk chalk for the kiddies to pass the time}

{And she's off!}

{She's signing "potty" to tell me it's time to head back}

{Hurrying home to make it to the potty in time (which she did, btw)}

{chair number 2: Permobil Koala powerchair}

All Gabe

Sometimes, I look at this kid, and think to myself, "Where did he come from?". I do this with all of my children from time to time. Most frequently, it's been Gabe though. Now, don't think I forgot how Gabe actually originated; abstractly (from Heaven) or literally (ahem... from his parents). It's just that, now and again, I think to myself that he really has a side of himself that is all his own. A part that I had nothing to do with. The "nature" in nature vs. nurture, if you will.

This evening, when I was making dinner, he begged me to watch the "Pirates movie". He was referring to 'Pirates of the Caribbean'. He has seen the DVD case in our collection, and he's been intrigued with it. Normally, I would make him settle for 'Peter Pan' or 'Mulan', all of which have some nice sword fighting scenes. But this time, I decided to indulge him. From the minute the first fight scene began, Gabe launched into a tornado of sword fighting moves, spinning around and wielding his sword in all directions. He had this furrowed brow, pursed lip look on his face as though he was truly there. I had to make him stand still just so I could snap a few unblurry snapshots (and even those didn't capture it).

Later, when we made him turn off his movie for dinner, he layed on the drama and made this pout face that was just priceless. I much prefer it to whining. He's one of a kind.

Anat Baniel Method Therapy: Round II

About this time last year, we took Ariana for a few "lessons" of Anat Baniel Method therapy. This is an alternative method of therapy whose main premise is to help Ari learn new ways of movement and rewire the brain to cement these new experiences and create new neural pathways. Many children have shown significant improvements, and this method of therapy is largely popular in communities of parents of brain injured children. It is very interesting, and last year, Ari experienced some improvements in her gross motor abilities as a result of the lessons. From what I recall, her "stepping" when upright was much improved. Since Ari has been growing taller, her joints and muscles are being pulled even taughter and her tone has increased. I would love to see her show more flexibility and range of motion in her body, especially her lower extremities. We took Ari for three sessions of ABM therapy with her practitioner, Geewon, this weekend. We plan to continue getting more sessions at least on an every-other-month basis for now.

The Special Mother

Here is something that I found in the blogger world (thanks to Mackenzie's mommy) that touched me deeply. I amended it ever so slightly to reflect my personal beliefs, but I found it beautiful and profound and validating, so I thought I'd share it.

The Special Mother

by Erma Bombeck (amended by me)

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son."

"Forrest, Marjorie; daughter."

"Rutledge, Carrie; twins."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".