Talker

Ari has moved up to a new augmentative communication devise.  Even little girl’s box of words is growing up (*sigh*).  This new talker, called the Vantage Lite 2, provides Ari with many more words and opportunities for growth with her devise.  She really likes this talker, and although she still enjoys playing around on it to explore what new things it will say for her, she has already begun to make strides in her communication with the talker without my verbal prompting.  For instance, a couple days ago, I was trying to coerce Ari to eat her cereal in a hurry before it was time for her to leave for school.  She kept shaking her head ‘no’ and laughing at me.  I persisted anyway, because girlie hadn’t eaten much of anything.  Just then she looked directly at me and said “Want all done” with her talker and looked right back at me and smiled.  I was so happy to hear her asserting herself with her voice that she got her way and that was the end of the cereal ordeal.  Win-win.

So, right now, she can more or less say what we want her to say when we suggest it (meaning that she can find the correct icons on the talker), but we are working slowly but surely towards the point when Ari will say what she wants to say without any external prompts.  I’m so proud of my little girlie! 

And for those who are wondering, Ari has regained most of her strength back and her post-seizure developmental status, as of today, very much resembles her pre-seizure developmental status.  While we are aware of the potential for things to not progress as quickly as they might’ve sans seizure, right now we are grateful for the miracle of a successful return to baseline.

Too Close for Comfort & Counting Blessings

In this family, we count our blessings.  And we know better than most that blessings come in all different forms.

Blessing #1:  Bunk beds and hard-working men.

We had long ago decided that the girls would share a room in order to accommodate the newest member of our family.  So Saturday, it was out with the old bed in Ari’s room and in with the new bunk bed, which just happened to be in one thousand pieces.  Jake made up his mind to set it up with the help of his brother, Ryan, who was visiting.  Being that there wasn’t any (assembled) bed to sleep on in Ari’s room, my little girl had to sleep beside Gabriel in his bed.

Blessing #2:  My son (and his complaining).

Gabe doesn’t love bunking with Ari.  Aside from when we’re on vacation or visiting grandparents, he never has to.  Saturday night was the exception.  About an hour and a half after being tucked in, Gabe made his way downstairs to complain about his sister.  Initially, I was not thrilled to see him.  This quickly changed.  Gabe explained that Ari would not stop “tapping” him, even after trying to get her to calm down.  I flew up the stairs to see what I dreaded seeing the whole way up.  Ari was having a seizure, and judging by her blue coloring, mouth full of saliva bubbles, and her wild movement pattern, she had been for a while.

Blessing #3:  A house full of visitors and staying up late.

This time, Ari’s seizure did not slow after I gave her the Klonopin.  It didn’t slow after two or three Klonipin.  In fact, not much happened even after she’d been given a Diazepam (Valium).  If anything, things appeared to be getting much worse.  Remember the empowered feeling we had after stopping her last seizure on Memorial Day with just two Klonopin?  The feeling we had now was exactly the opposite of that.  Of course, we dialed 911 somewhere in there, but they were taking forever.  With Ryan and Chantelle by our side, though, we didn’t feel quite so alone.  The support was so strong that I could actually feel it embracing me.  Just even knowing that they were witnessing what we went through was a relief, and it comforted me to know that Jake and I weren’t the only people seeing this horror and feeling scared.  Gabe watched too.  But the other six children in the house slept soundly through the whole ordeal.

Blessing #4:  Family (this one is obvious).

When the EMTs finally arrived (10 plus minutes after the call), she was seizing less.  The gave her oxygen (which instantly changed her coloring back to pink), started an IV, gave her Versed, and took her by fire truck (not ambulance, which was strange) to Gilbert Mercy Hospital.  Jake rode along with her while his brother, Ryan, followed behind them.  I couldn’t leave Liam, so I stayed, but asked my sister, Marci, to meet them there.  It was 11:30 pm.  Ryan supported Jake the way only a brother can.   Marci (with all of her medical knowledge) sprinted over to be there for my Ari and stayed up all night and the next day with her when I couldn’t leave my house.  We talked via iChat on her phone so I could see Ari as things were changing.  Chantelle stayed up until far into the AM with me to offer me comfort even when she knew she’d be up to feed her two month old baby throughout the night.  My mom came to help with the kids the next day, and my mother-in-law drove down from four hours away to stay with us for three days while we regrouped and nursed Ari back to health.

After a few hours at Gilbert Mercy, Ariana was ambulanced across town to Phoenix Children’s Hospital, where she stayed in the ICU for the next two days.

While in the hospital, Ariana was diagnosed with strep throat, walking pneumonia, and a urinary tract infection.  We had signs, but they were only recognizable in hindsight.  The signals that we might have caught sooner were: irritability on Saturday, four potty accidents on Friday, moaning on the potty, a low grade fever on Saturday, and touching her neck and saying “Ma” (but she touches her neck for many reasons – i.e. sickness, thirst, lodged peanut butter sandwich, other kids say they’re sick). 

Blessing #5:  Kisses and smiles.

I stayed with Ari all of Sunday.  I planned on staying the night, but Liam was not allowed to be there past visiting hours, so Jake came and switched off with me at her bedtime.  Ari barely peeked her eyes open until Sunday afternoon.  Even then, it was evident that she was not going to be back to her normal self for a while (if ever).  We were told that we could not expect to see what effect the seizure would have on her for a few more days or possibly even weeks.  Marci and I asked her for kisses and tried desperately to make her smile, but got nothing until late Sunday.  Try as she might to make a kiss, the pucker was just too much to ask for at that time.  Sunday night we pulled out the big guns and did a dance routine for her to the Lion King soundtrack with amended lyrics and a real Simba (Liam) along with all other kinds of shenanigans, and we got the most beautiful sleepy smiles (pictured below).  The kisses came back on Monday, and they were the sweetest ever.

Blessing #6:  Dear friends, dearest friends, and little friends.

We experienced an outpouring of support from friends during this time.  We have never felt so loved and supported.  Friends and neighbors repeatedly reached out to us to help us in every way.  Their calls and written messages made me feel like I truly had arms around my shoulders.  The oldest and truest friends were there for us, but new friends reached out too, including people I’ve only spoken to maybe once or twice in the parking lot at school.  Ari’s buddy’s mom dropped off dinner, and every single one of Ari’s classmates each made a hand-drawn get-well card for Ariana.  They were beautifully illustrated with colorful crayon drawings of themselves pushing Ari in her wheelchair or handing Ari a bouquet of flowers.  They were covered in hearts and rainbows and had every variety of well wishes a kindergartener could think of written in them.  Their statements of “I love you Ari”, “Get well Ari”, “I miss you” brought smiles to her face and tears to my eyes.

As of now, Ari seems healthy.  She has finished all of her antibiotics, and seems to be back to her happy self.  Today was her first day back to school.  She is, however, very weak still.  Her strength has diminished temporarily (we hope).  Her knees still buckle when she stands with support and she has difficulty even sitting independently on the floor.  Your prayers are still appreciated as always, but especially as she continues to recover from this major ordeal.  Prolonged seizure with oxygen deprivation is never a good thing, but we are still holding out hope that the effects won’t be noticeable.  As for prevention, we still have a audio video monitor in Ariana’s room, and I have it turned up all the way at night.  Bella is now sleeping on the top bunk of that bunk bed.  If Ari has a fever, she will get Valium prophylactically in addition to her regular Keppra and Tylenol (for fever) while the sickness runs its course in order to minimize the chance of a seizure.  We boosted the Keppra dosage to 6 mL instead of 5.5 mL 2x/day.  We are planning on looking into our options for a seizure dog.

I can’t even begin to tell you how grateful for the way in which this happened (if it needs happen at all).  The thought more than crossed my mind during her seizure that I may never see my Ari like she was before again.  The thought that this might happen again, coupled with the fact that her seizures have already occurred three times during the night in her short five and a half years, paired with the knowledge that we are defying all odds with our luck/blessings (call it what you will) is unnerving at best and downright crippling at worst.  They say that God will only give you as much as you can handle.  Well, for the record (I’ve said this before, but I’ll say it again), I can not and will not handle losing my Ari (or any of my children).  So, if you’re reading this God, I’m just saying… DON’T test me.

Liam at 5 Months

My littlest treasure just turned five months old. 

He is sitting pretty well in his Bumbo chair, enjoying a whole new perspective on the world from this right-side-up vantage point.  He still loves to be in his bouncy chair.  That thing is low riding with Liam weighing in at 18 lbs. 3 oz., but Liam has learned how to bounce himself sky high on it by rhythmically kicking his legs, and he can’t get enough of it.  We definitely got our $30 worth out of the monkey bouncer.

Liam discovered his feet this month.  He enjoys his toes almost as much as I do.

Liam is ticklish on his neck and on his chest (a.k.a. his baby boobies). He has such a cute laugh. It’s not a conventionally pretty-sounding laugh, like Ari’s is for instance, but I think every snort and honk and cackle is what makes it all the more charming in its own way.

His brother and sisters all still adore him.  Ari even lets him slap her and pull her hair.  She thinks its hilarious.  Gabe can’t get enough of his cheeks.

Liam has begun babbling this month.  He talks to us in all different intonations and his favorite thing to say is “Mama” (swoon!).  He also says “baba”. 

Baby boy had his first taste of food this month, and seems to like it, but it may take some practice before it stops getting pushed right back out again.

Liam started rolling over from tummy to back a few days ago too.  Technically, he was a few days past five months when he first did this, but I think it’s worthy of a mention.

I wish he didn’t turn me into such a braggy mama, but, man, is he cute or what???

Super Halloween

My four kids had a super time being super heroes this Halloween.  Now let me first say that I’d love to be that mom/blogger that goes all out for every holiday and for Halloween picks one awesome theme that her whole family can stick to and hand sew/put together their costumes for a totally unique and downright impressive costume lineup… but I’m just not that chick.  And to be totally honest, Halloween is not my favorite holiday.  Thanksgiving and birthdays are totally my thing, but Halloween… um, let’s just say that it was a major accomplishment to get some minimal decorations up this year.  I did pull out the glue gun and the spray paint too, but only because I just can’t resist seeing my kids smile with glee. 

That said, all of my kids did decide to go with a super hero costume.  Nothing extravagant, but they were none the wiser.  In fact, they were over the moon with their getups.  Can you tell?

Gabe was the Green Lantern.  He informs me that this is his favorite super hero.  He’s never seen the movie or read the comic books for that matter, but he’s been into it ever since Daddy revealed that this was his childhood favorite. 

Catwoman Ari.  She liked to growl and pretend to paw at me.  She thought she looked bomb.  I wholeheartedly agree.

Captain America Girl.  Chica was most excited about getting to wear red lipstick. 

And, last but not least, baby Batman.  Awww.

We attended our street’s annual block party the Saturday before Halloween.  It is so much fun every year. 

The night of Halloween, we honored tradition and went trick-or-treating with the besties, Lana & Kiera.  Crazy how this year they just run ahead of us and know exactly what to do.  No hand holding or coaching required.  Even Ari was little miss independent and held her pail out expectantly in front of her every time a neighbor came to the door. 

And props to our neighborhood for being so cool when it comes to Halloween (and most other things too, as far as neighborhoods go).  Nearly every house has dressed its courtyard up as a haunted house.  Kids and teens in costume parade everywhere… the streets are bustling until 9 pm.  The trees have finally grown up and make everything look eerie and awesome.  And it seems that everyone has an unspoken pact to only pass out the good candy.  My little supers had a ball.

Now, if only I can make their candy last the month (shhhh… don’t tell, but it’s hidden in our bottom oven).