Botox Injections for Ari

Ariana is one of the most determined little girls you will ever meet.  She works so hard to make her body do what it was meant to do each and every minute of her waking life.  She spends gets two hours each per week (home & school) of physical therapy, occupational therapy, and speech therapy.  We stretch out her little ankles, right arm, hand, and thighs every night until she wails for us to stop.  We put her in the stander, work her on the floor, position and reposition her, and still she smiles away.  She, understandably, gets frustrated with us at times and puts out her hand in the ‘stop’ sign or makes a razzing noise with her mouth when she’s had enough, or when she’s really had it, she’ll yell at us and try to pinch us with her left hand (stay out of the way of that one). 

Despite all the work that goes into helping Ari’s muscles to function properly, her legs still scissor when she stands up, preventing her from being able to take steps; her hips are being pulled out of the sockets just slightly, putting her at an increased likelihood of needing corrective hip surgery when she’s a little older; and she has tightness and muscle spasms.  Try as she might (and she does), Ari has one hell of a time holding onto objects with her right hand or lifting that arm up past elbow height.  I resisted it for a while, because I’m from a mindset that less is more when it comes to optional medical interventions for this little girl… but the time came when Ari needed a little more than what she or we could do for her spasticity.  So, we did what most parents of children with Cerebral Palsy do when tightness and muscle spasms are getting in the way of comfort, motion, and are threatening to cause other health problems (hip dislocation, growth deformities, scoliosis to name a few), we called on the assistance of a very reputable neurosurgeon and got Botox injections in a few specific locations in Ari’s muscles.  For Ari, these places targeted her right thumb, right bicep, inner thighs, and calves (controlling her Achilles tendons).

In Ari’s case, Botox has nothing to do with vanity or reducing signs of aging.  Rather, the Botox causes muscle relaxation, reduced spasticity, increased range of motion, and hopefully a reduced scissoring of the legs.  It does this by blocking the transmission of nerve impulses to the muscle.  In turn, the muscles relax.  Ari was under light anesthesia for this procedure, so she didn’t feel the pokes and didn’t get scared.  It went very smoothly and was covered in full by her CRS insurance.  We were told that we should start seeing the effects in a week.  It has been four days since the procedure, and we can already notice considerable relaxation.  And when I say “we”, I mean… even Ari.  Ari now raises her right arm up and tells me in her way (with her look, and her eyes, her smile, and her timed vocalizations), ‘look at my arm mom, I can move it!’.  I can’t wait to see what other comfort and chance for improvement this brings to her in the weeks and months to come.  We have a 4-6 month window (it wears off in that amount of time and is needed again) for Ari to move and explore, using her body that she has never had before.  Ready… go!

Ari loved pressing the light globe spinny thing and making it go all by herself and watching Micky Mouse Clubhouse while we waited for her turn to get called in.

  

Disney On Ice – Princess Classics

I asked my professor if I could get out of Seminar early so I could take my kids to go see Disney On Ice, and whad’ya know, she said “yes”!  So we hightailed it for the show on opening night, and we were joined by the Edwards family (who, after four years of family outings and celebrations together, you should’ve guessed would be joining us ;) ).    I had to make it special for the girls, so I dressed them in their doppelganger’s signature outfits and made a night of it.  Gabe had no interest in changing out of his “shark shirt”, so we left it at that.

All the kids were entranced by the Times Square sized screen on the wall, so no one would pose for our photos.

  

In the beginning, everyone was in a total daze at what was going on.  Blank expressions all around and Bella covering her ears to mute the volume a little.  It wasn’t until a few songs in when everyone started to loosen up. 

 

Ariana enjoyed the show the most by far!  She was dancing and waving and clapping almost the entire time.  Gabe sat next to his girlfriend, and recited the songs whenever he recognized them; taking himself very seriously the whole time.  Isabella didn’t unplug her ears for a while, but when she did, she was dancing and swaying in the isles; reciting the lines from the movies.  Nights like this are what I LIVE for! 

 

Tree Climber

Ari climbed her first tree!  Well, you know… she asked if she could climb it when she saw Gabe and Bella doing it, and I said ‘of course’!  It wasn’t easy getting her in it, and it didn’t look like it was probably all that comfortable, but I think that just made it all the more worth it in her eyes!  Because, as you can see, she loved sitting in our front yard tree.  I expect it won’t be her last time.  Hopefully, the tree grows as least as fast as she does to accommodate her!

 

Little Miss Sunshine

  

My baby has been replaced with a little girl… a tutu-wearing, boot-loving, independent, messy-haired, free spirited, hippy child who loves pink, eating, and pretending to be a princess and who, since the event of these pictures, refuses to drink from a sippy cup. 

Power Cart Demo

Ari has completed her training with her power wheelchair therapist, Gail, from Southwest Human Development.  While Ari still isn’t quite to the point of being ready to pass the evaluation for her own power chair (she must *safely* operate the chair at all times in order to pass), she has made extraordinary progress.  I could’ve only hoped that she would get this far in a year, and I’m so proud of all that she’s accomplished in this time.  But even though our power chair trainer has to leave us, she has not left us empty handed.  Gail let us try out a power cart; which when Ari rides it, she is eye-level to the other kids when they are on their trikes and scooters.  It still uses the same button drive system that her chair did, so it’s great practice for the real thing and she is so motivated to move in it!  Ari is about 75% to mastery in her directionality and safety stopping, so it won’t be long before I make an evaluation announcement.  Now, the only question is whether we should buy her one of these in the meantime (about $2,000 investment), as this one we will need to return before the week’s end.

Jake gets Ari moving by offering her a chance to play music on his phone.  She gets to press the ‘Play’ button and make me dance like a wild woman.  A triple threat in her mind: technology, music, and sillyness.

   

Spring Break & Zoo

We stayed in town for Spring Break this year, electing instead for a longer warmer retreat in August… thinking of something like a lake house in Missouri with lots of extended relatives thrown in our mix.  So, for this short week, we stayed home and recuperated from everything that normal life throws at us.  And because this is the most amazing time of year as far as the weather goes, we spent a lot of time outside, just appreciating the fact that there is probably no place in the Continental US that feels/smells/is more beautiful than it does here right now.  We just felt grateful for the citrus and lilac blossoms, the chirping birds, the warm breezy afternoons that are warm enough for shorts but cool enough that you don’t long for shade, and for open windows bringing it all inside.

I loved staying home with my little ones.  It was such a wonderful break from running around all the time and always feeling like I’m missing out when I’m in grad school.  And I can’t even pretend to tell myself that I haven’t been missing out, because they showed me every minute that I spent with them just how much they’ve grown and changed.  Gabe has begun reading, and he loves to stop me when I read him stories and ask to sound out words he doesn’t recognize.  He is turning into the most helpful boy lately.  He always wants to help with the laundry, whether carrying baskets or putting clothes in the washer.  He loves to take his plate and placemat to the sink, buckle his own carseat, hold open doors, and get dressed all by himself every day.  He has a great imagination and always seems to always be actively engaged in the adventures of his own little world.  He’s falling into a bit of a tattletale stage – Jake calls him the “hall monitor”.  It isn’t his best side, but I like to think that it’s his way of demonstrating accountability.  I think this rigidity is something he’ll grow out of, but it’s kind of funny while it lasts.  Jake was motoring through the house on the plasma scooter one night while giving the kids rides.  It was Ari’s turn and Gabe and Bella were providing their propelling force (pushing them).  As Jake was yelling “Yahoo!”, Gabe pipes up, “Daddy!  Don’t make those cowboy noises!”  Jake: “Why, Gabe?”  Gabe: “Because you need to listen to your conscience.”  Jake: “And what is my conscience saying?”  Gabe: “Your conscience is telling you not to make cowboy sounds”  Jake: “Are you my conscience?”  Gabe: “Yes.”  I get a kick out of how he has a really developed sense of humor.  He can always keep up with our jokes, plus he keeps us laughing all day with his own comedic act. 

Ari communicates very proficiently on her talker.  She is finding unique ways of using the vocabulary on her augmentative communication device to express herself.  Whenever it’s absent, she gets frustrated and reaches to her left, while giving us a most expectant look, like “How do you expect me to communicate?”  We are very proud of her, and I think that she will grow tons more with it in the next year and a half that she has before entering Kindergarten.  Ari is getting very mobile, and her belly crawling is faster all the time.  She has begun to pull her knees up under her and go to four-point (hands and knees) more frequently than before, and we always get really excited when she does this.  She, of course, then starts cracking up at our sillyness and falls back over to tease us and get our reaction again.  Ari is probably the biggest tease of my three – she loves to get us going and then bust out in hysterics at our reactions.  One of her favorite things to do is to get us to sing her a song and then tell us to “Stop!” on her device.  She loves seeing my feigned insulted expression when she tells me she doesn’t care for my singing.  Of course, she is no different from any of my kids in the sense that she’ll do anything for a laugh.  One day, Ari crawled into the laundry room to pick up one of Gabe’s sneakers and then crawled with it into the bathroom only to drop it into the (empty) training potty.  She then crawled out to signal to me, with a wide mischievous grin and raised eyebrow, that there was something she wanted me to see in the potty.  When I said half-laughing “Ari, no!  Potties are not for shoes,” she burst out laughing.  Then, she proceeded to repeat this behavior another five or six times until I moved Gabe’s sneakers.

Bella is a whole different animal these days.  She was the most mellow baby ever, that I kind of thought she was going to be my vanilla kid.  I couldn’t have been more wrong.  This girl is as unpredictable as they come, and she keeps me endlessly entertained.  In fact, the only things that are predictable about her are that she will eat her food and she will not keep her clothes on for more than an hour at a time.  You can set your watch to that second part.  While Bella has had a whole host of nicknames in her time (Bellarina, Isabelly, Cinderbella, Tinkerbella to name just a few), her latest and most fitting little name right now is a moniker given by her Grammy, Jezibella.  This nickname stemmed from Bella wanting to be called, “Jessie” from ‘Toy Story’, but has much more to do with her inability to stay clothed or refrain from wearing mommy’s tank tops and nighties as dresses and 4 inch stiletto shoes, her refusal to wear her hair in anything other than her signature bedhead look, and her unintentionally seductive gazes/sly smiles.  She is too much!  And while she has an attitude to match, answering our requests and directives with a self-assured, “No fanks (thanks)!” multiple times a day, she can also be the most empathetic and considerate little thing when she wants to be.  While Gabe looks out for Ari’s needs when they are playing (“Mom, Ari can’t reach the toy on the self!”), Bella translates her feelings (“Are you okay, Ari?  I’m sorry you’re feeling sad.  Do you have an owie?  Do you want me to kiss it?”).  I love that she is learning caring and concern for others at such an early age.  Empathy is an essential trait in my book, and my heart beams when I see my children loving and taking care of each other.

This was our latest zoo trip this past weekend.  Some highlights were seeing the tigers move around (a first for them), learning that some monkeys have red bottoms, playing by the splash pad, and a little lesson about money (even zoo members can spend like crazy for the family when stingray petting, giraffe feeding, camel rides, face painting, train, carousel, and even use of the binoculars are extra!).