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.

#7

I have a lot of catching up to do when it comes to posting on my blog and when it comes to just about everything else in my life right now, to be honest.  But for this post, I’m going to jump ahead, because some posts go straight to the top of the heap. 

Ari had her seventh post NICU seizure today.  She had it at about 4 pm at the end of a late nap.  Bella found her upon awakening (they share a room).  I think we caught it right as it started, because it was relatively mild compared to the ones of longer durations.  Her coloring was almost normal (slight blue cast), she wasn’t sweating, and she seemed to be breathing more or less normally.  I pretty much knew as soon as I saw her that we would be able to stop it with her Klonopin and Dyastat.  We only needed 2 Klonopin, before she began slowing down.  Then she was weak and nauseous for a while and had to vomit everything that she ate that day.  After about two hours, she seemed like she was slowly coming out of the woods.  Our favorite neighbor, Glenda, rushed over to help me with the other three so I could focus on caring for Ari.  Liam gets fiercely jealous if I hold anyone else in view of him.

We still have no idea what caused the seizure.  To our knowledge, she isn’t sick.  She didn’t have a fever at any point today, including right after the seizure, which is highly unusual.  We aren’t feeling very encouraged by the timing of this seizure, because it’s only 3 1/2 days away from her scheduled surgery.  This just seems like one of those times where, try as you might to be optimistic and/or resourceful, you simply have to choose from some very undesirable options.  The surgery isn’t going to be a walk in the park, even if things were to go perfectly, but any little variant could really skew the outcome. 

We are praying for her.  I hope we can count on you to do the same… and if you don’t pray, then please send us your positive thoughts, energy, vibes, whathaveyou.  We’ll take it all.

(these photos were not taken today).

Post-Seizure Changes, Surgery & What Special Means

This post is more or less a combination of some tangentially related subjects, all smooshed together into one. 

Starting with topic 1:  We are so fortunate that Ari’s last seizure in November didn’t take her life.  With its horrible timing (at night) and duration (an hour and a half?), it is so obvious to me that we witnessed a miracle in her recovery yet again.  I know that sounds so horrific, but I don’t like to soft pedal around what is really a very serious and terrifying reality, because it does no one any good to ignore the struggle and the threat and the burden that it is on me and our family.  I also have the opportunity to feel such a deep gratitude on such a daily basis, which is a blessing in and of itself.  A gratitude for her life and her continued presence in our world… something that too many moms may too often take for granted.  I dare not take this for granted, lest I receive a bitch slap in the face reminder of the fragility of what is most important in my life.  And while a miracle did occur, Ari’s most recent seizure has not left her unscathed.  Ari seems to have not endured any regressions in cognition, but her gross motor skills have suffered setbacks.  Ari’s muscles are much tighter, especially in her right arm and her legs.  Her legs are frequently scissoring (crossing) to a much greater degree than they have in the past (see photo below).  Without active correction, her legs literally reach over one another, whereas before they merely rubbed each other’s insoles or stepped on each other’s toes.  If walking was ever an option, this has definitely caused her chances to dwindle.  Ari also has much more significant problems bending her knees.  This affects her not only when she is trying to take a step, but also in normal daily activities such as dressing and using the restroom.  She used to be able to dismount off of the couch or her bed fairly well by going backwards, feet first and bending her knees until she was in a sitting position on the floor.  Now, when she attempts the same feat, she can achieve everything up until the point where she is required to bend at the knees and since she can’t, she just falls off to one side.  This has led to her hitting her head on the coffee table more than a couple times and also enduring other awkward bumps and bruises since she tenses up her muscles while falling.  This is very frustrating for her, and it is very hard for me to watch as her mom.

We are considering what is called a Dorsal Selective Rhizotomy for her.  This is a very invasive and major surgery, which will cut nerve root ends in her spinal cord.  I am oversimplifying here, but to sum it up, the aim of the surgery is to reduce the spasticity in her lower extremities.  The surgery is very risky, and it will require an extended recovery period as well as at least one year of daily (read daily) physical therapy, the majority of which will take place at CRS in downtown Phoenix.  We are told that we can expect to basically put life as we know it on hold for the whole year.  The toll of not getting the surgery would also be major.  She would need a great deal of orthopedic surgeries and have a great many health problems down the road.  Her ambulation potential would be null, our ability to be able to care for her as she is older would be lessened, and a great many other downfalls.  In addition to everything else we have going on, I am told that we need to seriously consider getting the surgery before Ari turns eight years old, as the benefit is much decreased after this point.  If you know of anyone who received this surgery, please give input.  I am very torn.

This brings me to my next topic, which probably should have been a post all on its own.  What does the word “special” mean to you?  Because to me, it means “important in its own way, exceptional, extraordinary, individual, significant, unique, specific, and different”.  To me, it refers to my child, Ariana, in each and every one of the aforementioned ways but also as in the phrase “has special needs”.  Lately, I’ve been hearing the word “special” used in entirely different, inappropriate, incorrect, and frankly, despicable contexts.  I’ve been hearing, and I’m sure that you’ve been hearing, people use “special” in place of another word that I abhor, “retarded”.  All of a sudden, people have taken this wonderful word (“special”) that I use to describe my own child, and have polluted it and degraded it to the level of an insult for someone behaving foolishly, out of control, embarrassingly, or worse.  If you hear someone misusing this word, please speak up.  This word, when abused, is like the R-word, in that it derogates and promotes the exclusion of people with disabilities everywhere.  It hurts people like Ari and those who love her.

When I look at Ari, I see the true meaning of special.  I hope you will too.

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.

Seizure #4

Ari’s fourth seizure post-NICU came on September 2 at 5 AM.  I can sum up the event with two words: horrible, wonderful.  The horrible part seems obvious, because Ari’s seizures are nothing but horrible.  Terrifying, ominous, difficult to stop, and even more difficult to predict.  This one was particularly horrible, because it came at night.  Only one other of her four seizures has ever happened at night.  It was the first one, and it was the one that nearly took her life, and I believe, did the greatest damage (again, post-NICU).  When a seizure happens at night, Ari is oxygen deprived for the duration of the seizure… in other words, until we realize she is seizing and sedate her enough to stop it.  Assuming we never come to this realization, well, you do the math. 

Which brings me to the wonderful part. 

Ari went to sleep with her sister that night, because we were all spending the night at my parents’ house, since it was Labor Day weekend.  In the middle of the night, Ari and Bella were still playing (which was to be expected), so we separated them into two different bedrooms.  Since Ari was upset over losing her sleepover companion, Jake decided that he would lie down with Ari until she fell back to sleep.  He had every intention of leaving her bedroom once she feel asleep, but miracles do sometimes occur and he fell asleep beside her, leaving her at his side.

He stayed asleep until he was awakened by the faint nearly inaudible sounds of Ari having a seizure.  Basically the sound of jagged breathing and blinking is what awakened this man who can sleep through the sound of a wailing baby in a fully lit bedroom night after night.  Ari had barely begun seizing too, which was evident by her still-pink face (she turns blue rather quickly once she starts).  I happened to have Ari’s medication on me, which I have to admit isn’t always the case.  Ari’s medication happened to work, which has never happened before (maybe because I was always too cautious about the dosing).  Ari stopped seizing within five minutes of taking 2 mg Klonopin.  This time, I wasn’t at all stingy with the dosing.  After the episode, she let out a very sleepy, very high smile and went to sleep until morning. 

We didn’t even have to call 911, let alone have her admitted to the ICU for an arduous, and frankly tortuous 3-day stay.  I felt empowered, I felt relieved in a very amazed kind of way, and I felt grateful.  Grateful to God, truthfully.  I have never felt more like Ari was being watched out for than I did right then.  I fell asleep saying my thank you prayers.  Over and over.  Belief in miracles renewed.

Number Four

Excuse the absence of posts please.  Rest assured, there is much good stuff that’s gone on and that I will not forget to talk about in a whole lot of detail very soon, but all that’s been put on brief hold.  Priority shift, if I may.

Ari had her fourth (post-NICU) seizure on Sunday.  She woke up crabby and feeling mildly feverish, so I gave her some children’s Ibuprofen and we set out to run some errands as a family.  Thankfully, Ari doesn’t get sick a lot.  Like my other children, she catches what’s going around and we push on through, encouraging liquids and more rest, but generally not putting life on hold.  Every once in a while, life puts us on hold.

We had a late lunch at Paradise Bakery, and Ari ate like she hadn’t tasted anything that delicious in her life.  Ari sometimes eats well, but more often has to be bribed with singing and silly games and fruit to eat her sandwiches.  This time, she pounded those ripped pieces of sandwich into her mouth before she even had time to swallow the previous one.  I was so excited to see her with such an appetite that I didn’t remember until later that she had a comfort-eating binge just before her last seizure in June 2010.  And then, just like the last time, Ari threw up just as she began seizing.  In case of seizure, Ari is prescribed Klonopin wafers and a Valium suppository by her neurologist, and I am authorized to administer them in lieu of calling the ambulance as a first resort.  I had the meds at home.  Live and learn, right?  So we knew we were in for it, and I called 911 from the restaurant.  The EMTs gave her Versed IM, and we thought that the seizure had stopped, but by the time the ambulance arrived at Phoenix Children’s Hospital, she was (still?) seizing.  They gave her Ativan and Versed again in the ED, and she finally rested after about a 30-45 minute seizure. 

You’d think that I would be used to the drill by now. In a way, it’s true that I am. Certain things fly on autopilot. But, I’ll tell you, there are some things that I’m sure I’ll never get used to. For one thing, the blue. There is something in a mother’s composition that instinctively panics when they see their baby looking blue. If I had to choose, I’d take the terrifying repeated movements of a seizure any day over a blue face. For another thing, the reminder of the fragility of our mortal lives is something that is always there… it’s an awareness that I’d shun if I could, but I just can’t.

Because of the length of Ari’s seizure, she was admitted to the ICU.  She slept the rest of the day on Sunday and awoke for just a couple hours before going back to sleep again for the night.  She was very weak and exhausted and still post ictal, but she enjoyed the company of her visitors and the few sips of water that she was allowed to drink during her short time awake.  Her cultures all looked fine, as did the rest of her blood work, other than a slightly elevated white blood cell count (likely due to the stress of the seizure).  We assumed that we’d be out by the next day, which was silly of us, because we’ve never had a one night stay in the hospital that I can remember.  In the hospital, there’s always something.

On Monday, the something was that Ari had elevated creatinine levels in her morning blood work (normal for her size is about .75, her baseline coming in to the ED was .81, which rose to 1.05 in the morning).  This made sense to me, seeing as this is a common result of dehydration and illness.  She had both, as she was still running a low grade fever and she had been NPO (nothing by mouth) except for a few sips just before bed.  But on the grounds that elevated creatinine also could be an indication of kidney failure, she needed to stay one more night so she could prove that she was able to eat and drink enough to cause it to drop in a 24 hour period.  Prove herself she did, three big meals and nearly a half gallon of liquids later.  She brought her levels down to .50 and kicked her fever in the process!

Gabe and Bella were so worried about Ari, protective of her things (her crayons, stickers, bed), and genuinely missing her during her entire absence.  I thought they would be crying for their mama, but instead they were begging for Ari’s return, which truthfully was so much more rewarding than if they had missed me terribly (even though I was missing them like crazy).

Ari was discharged on Tuesday at 3 pm, which was not a moment too soon for any of us.  I might have lost my marbles if it weren’t for all the support we had too from Nana, Auntie (Nurse) Marci, Auntie Leah, my friends (thank you Erin!), our nanny Rachel, and my amazing husband, Jake.  I often hear myself talking about how life passes you by too quickly.  Two days can fly by in the blink of an eye.  But then we have a couple days like these, it makes you stop and think about how two days can have such an impact too.  For better or for worse.  These two days were hard, but it made me stop my fast-paced life and devote energy to what matters.  It allowed me to stop and care for my child, not just take care of my child, if that makes any sense.  It also made me so grateful for  having my whole family together, when I got to be reminded of the horrible feeling of a fragmented life with pieces of my heart separated by necessity.  I felt blessed to be their mom, not like I normally do, but really honestly grateful and happy.  And for a silver lining, that ain’t too bad.

  

MRI Results

Quick update on Ari's MRI follow-up. About that clot in her brain... yeah, you know, the one that they weren't sure was a clot and I was highly dubious about. Uh huh, well, word on the street is that whatever it was, it isn't there anymore. And what that means is probably that it was a clot. And we dodged a bullet. So this is me thanking my lucky stars (it's all relative folks) that we had that seizure so we could catch that abnormality on the MRI and that we had some crazy brave docs who went out on a dangerous limb to treat a clot they weren't sure existed, and maybe saved Ari some serious damage. Yes, this is me saying a big "Thank you".

Ari is off the Coumadin now, as planned. We hopefully won't have a reason to put her back on it either. On an unrelated med note, we are also off the Phenobarb. I don't think I'm going to miss it, but it was a big part of our lives for a great many years. And no, she's not going totally naked. She's got Keppra instead, which should help her to learn better, because it won't fog her up like the Phenobarb used to.

Onwards and upwards!

Not the Kind of Post I Wanted to Write

I was truly looking forward to doing a really good update, because I've been so behind on everything not school related. Unfortunately, I'm forced to punch out this lame excuse for a post (that I will need to finish later, because I should be studying for my Ethics final exam, which is tomorrow).

Ari had a seizure on Tuesday afternoon. Long story short(ened), Ari was up all night on Monday crying hysterically for seemingly no reason. We thought she was nauseous, because she did end up throwing up once when I tried to give her some children's Ibuprofin. Jake and I kept worrying that she was going to have a seizure (don't ask me why... instinct perhaps?), so we let her sleep in bed with us for the first time in her life. I took her to the doctor on Tuesday for her coincidentally already scheduled and long overdue well-check appointment. She was running a slight fever of about 101.5 (that's low grade for Ari), and Dr. Sudha diagnosed her with a double ear infection and gave us an Rx for some oral antibiotics. Anyway, I gave her a sucker and then she went quiet. Too quiet. She had been crying all day, so I attributed it to her utter fatigue. I gave her her first dose of ammoxicillin and plopped her on the couch to watch her movie. Then, I stepped into the office to print off my recipe for dinner, and while in there, heard an all-too-familiar sound of staggered breathing. I screamed for Jake to call 911, and then ran into the family room, hoping desperately not to see what I knew I would: Ari seizing madly and having thrown up all over herself.

The paramedics got there as I was packing Ari's hospital bag, and Jake was there with them. They gave Ari Valium instead of Versed, which never works for Ari. They had no way of knowing that, but it still messed us up in the long run. In the ambulance, they finally got the Versed into her, and she stopped seizing. Her seizure lasted about 12 minutes. This is long. They made us go to Gilbert Mercy Hospital, because she was not stable when we left our house and they wanted to get her somewhere quickly to stop the seizure. Gilbert was, all in all, not a horrible experience, but we requested a transfer as soon as Ari was stabilized, which took a while to do. After we arrived, she started seizing again. This time, it was very slight and was only detectable by a slight twitching of the eyes. Thank goodness Marci was there to notice it. So, they naturally had no choice but to give Ari more sedation. This time, it was Atavan. Sound like too many drugs for such a little girl? That's because it was. Ari needed to be intubated and put on a ventilator to breathe for her, because her respiration would be so severely depressed from the sedatives. This was horrible, albiet necessary. She got a CT scan of her head, because we were concerned that her head bonk on Saturday night could be to blame for her seizure. Thank goodness, the CT didn't show anything new or acute, and we were absolved of that load of lifetime guilt. She got a chest XRay, and as it turns out, a double ear infection and seizure wasn't the half of it. The poor girl also had pneumonia. After that, Ari was flown via helicopter to Banner Desert PICU.

It was about 10 pm when she was registered in the PICU. Still on a vent and a drip to keep her sedated. I forgot the names of the drugs from here on out. Can you believe it? Evidence that I'm really losing my mind! My aim: get Ari off the vent, extubated, drinking, eating, sleeping, antibiotics to get her healthy again, and to GET OUT. The doctors' aim: make one baby step decision in that direction every 12 hour shift. Basically, no more than one move could be made per round, and they were literally absent between rounds unless I stalked them down. So, a mommy's gottado what a mommy's gottado. I was pretty pushy, but a (relatively) healthy Ari was discharged on Wednesday night at 8 PM. She probably would've been in there until Friday if I had allowed us to creep along at the snail's pace the doctors preferred. In any case, she's home now, sleeping soundly in her bed. Under the watchful ear/eye of two baby monitors.

I am an exhausted, anxious, bitter, fearful, angry, helpless mess. I am shaking my fist in the air as I type this. I held it together pretty well the entire time we were in the hospital... I mean, considering I had to witness my baby as she went from a violently convulsing puppet to a limp, unconscious body on life support; to a tortured, gagging, coughing, vomiting little girl waking up from unconsciousness at 2 AM to find a tube in her throat, two IV's in her arms, wires all over her body, and restraints tying her arms and legs to the bed. Considering all that, I guess you could say I stayed pretty level-headed. But, don't let that fool you. Because now, I'm definitely not that. And I don't want to pretend to be anymore either. I am PISSED OFF. Don't worry, I'm not pissed at you or the doctors or nurses or anyone in particular. Although I'd love to be. It would be so much easier and less confictive if I could blame someone other than GOD for what's happening to Ari. I find no solice in the message that this is happening for a reason or anything attempting to be reassuring right now. And I apologize if this is a disappointment or if I'm warranting the status of a fallen hero or something. But I really don't want to be an inspiration right now. This isn't that blog. Not today. Nope. I'm the girl that's issuing a warning: God, if you take Ari from me or if you hurt her much more than this, I will not survive it nor will I want to. No, in fact, if you take her from me, we're not going to be friends anymore. So don't do it!

Post-Seizure Update

The panel of radiologists have returned with a diagnosis, and it isn't great. Ariana does have a new clot in her brain. There has not been a stroke, but a stroke still could be imminent should the clot continue to grow. The head radiologist (Dr. Kuasha [sp?] ) called to me today, along with the Patient Care Liaison for Radiology (Beth Walker), director of Radiology (Al Wildman), and our intensivist during our stay (Dr. Haddad); informing me of the news. They've been working very hard to "resolve this issue", and they've had every radiologist worth their salt at Banner Desert review Ari's current and previous (01/09) MRVs. It's no longer a hung jury on what's going on with Ari. On Ariana's current MRV, there is a missing vein. On the previous MRV, ss stated by Dr. Kuasha, that same vein "looked normal". Now, we are just waiting on Ariana's hematologist, Dr. Shah, to decide whether or not to prescribe anti-coagulation therapy (Heparin most likely). The anti-coagulation therapy is not expected to break up the clot, but should prevent the clot from growing any larger. However, there are many serious dangers to anticoagulants, which may in fact outweigh the risk of leaving the clot alone. For instance, any minor injury/bump/fall could cause Ariana to hemorrhage, which equals automatic stroke or even death (if it's in the brain). The clot, on the other hand, might continue to exist without fully impeding the blood flow (causing a stroke). It's Russian roulette either way. This time, the doctors are going to have to make the call on their own.

Changes Since Seizure

I just want to make a note of any changes we've seen since Ari's seizure. On the bright side, *knock wood* Ari's eating has improved. I don't know how long this will last, but it's been about two days so far, and she's acting like she kinda loves food... even dinner. Great side effect of short-term starvation (NPO).

On the flip side, Ari seems much weaker. Just in the muscles. Her sitting is poorer (she's toppling; used to be a thing of the past), and her standing is basically nonexistent. Her legs buckle as soon as they have any weight on them at all. Usually, with a stroke, the muscles get hypertonic (tight), not hypotonic (loose). She is definitely hypotonic right now (which I much prefer to see). I don't really know what's causing her hypotonia. Some possibilities include the increase of phenobarb dose, the after-effects of the seizure, and the fact that I've been stretching and massaging her like crazy since the seizure to prevent hypertonia (about 5-30 minutes at every diaper change). I'm hoping that it's the stretching/massaging that's making her limber and floppy, but the only way to find out for sure is to stop stretching her and I'm not about to do that.

Ari's Emergency

As I am writing this, we are nearing what I hope is the end of a very long and stressful period. Right now, I am sitting with Ari in her PICU (Pediatric Intensive Care Unit) crib as I retell her story.

Yesterday morning started out as a day like any other. For a brief moment, none of my children appeared to be ill, they were all in more-or-less happy moods, enjoying their breakfast at the table. Ari is a fruit-lover, so it struck me as odd when she didn't gobble down her apple slices. Instead, she just dazed off expressionless as the apple slices sat on her plate. I thought, 'she must be very tired', but she had gone to bed on time the night before, and I couldn't think of any reason for her to be so out of it. I felt her forehead; no fever. So I watched her. About a minute later, Ari began to subtly move her lips as if she was whispering something. Had it been my first time seeing this, it would have confused me or maybe even amused me, because it was something so subtle and odd. And Ari does little odd behaviors all the time to entertain herself and draw our attention, such as tongue clicking, fake coughing, and the like. So, like I said, if this had been my first time seeing this, I would've been perplexed, but probably not alarmed. But his was not my first time seeing this. And I was alarmed. I knew what this was, and this time, was bound and determined to let nothing go wrong.

The instant I saw Ari start to twitch her lip, I called 911. Then I slipped an emergency Klonopin (Clonazepam) wafer inside her lip, took her from her chair at the table, and swaddled her in a blanket on the couch. I called Jake, and (thanks to how he works one minute away from the house), he was home within seconds. I told Gabe that the firemen were coming to visit us and help Ari feel better, to which he responded with excitement and anticipation of their arrival. When the emergency crew got to our house, Ari had been seizing for nearly ten minutes. At this point, her seizing was not subtle but very disturbing as the entire right side of her face (eye, tongue, mouth, cheek, forehead) spasmed violently and the right side of her body became hypertonic. Ari's seizures always manifest this way, displaying what is called a Focal Seizure. The only difference was that this time, she didn't make any sounds, which I find even more frightening, because this means that should she have a seizure at night, I wouldn't even be able to hear her over the baby monitor like I did last time.

The paramedics and firefighters tried unsuccessfully to start an IV in Ari's arm to start her on a sedative and stop the seizure. By this time, she had been seizing for about ten minutes (obviously, the Klonopin wafer had no effect). People notoriously have difficulty finding Ari's veins. Time was passing, so they cut their losses and gave her a shot of Versed (Midazolam) IM in her leg. By the time her seizure finally stopped, she had been at it for close to twenty minutes. Meanwhile, the firefighters were trying to convince me to let them take her to Gilbert Mercy Hospital. I was going to dodge this bullet. They kept saying how it was closer, they would be able to settle her down sooner, etc. I knew that if she went to Gilbert, she'd be there several hours, mostly spent just waiting for them to order an ambulance to come and take her to St. Joseph's Hospital, because the care at Gilbert is *ahem* not suitable for Ariana's condition, and St. Joe's is where her doctors are. So I argued to go to Banner Desert (of the good hospitals, the closest one to us). Reluctantly, they agreed as they witnessed Ari's seizure coming to a stop. While this was going on, Gabe and Bella were being very patient and observant. They watched on, unafraid but curiously, as Ari's face was covered with an oxygen mask and a crowd of uniformed men went to work on "fixing" Ari. I rode with Ariana in the ambulance, and Jake stayed home with Gabriel and Isabella until Devyn got to the house to take over.

We were seen at Cardon Children's Medical Center Emergency Department. By this time, Ari was coherent but weak. Ari also had a right side facial droop. This was the first time we'd ever seen Ari exhibit a facial droop, and it was so discouraging. The right side of her face was nearly motionless. When she smiled, it looked like she was just trying to bear her teeth. It didn't look like a happy face, and it certainly didn't look a thing like my Ari! I asked the attending physician about the facial droop, concerned about the possibility of Ari having had another stroke, considering her blood clotting disorders, and he immediately attributed it to Todd's Paralysis. They said it should dissipate within two hours, and mostly, it did. By the time my sister, Marci, got to the hospital, it had gotten much better already. And when Jake got there, we all thought it was more-or-less gone. The doctor ordered some blood work (Phenobarb level, etc.), and had an IV placed (maintenance fluids, because Ari was NPO - a.k.a. "nothing by mouth"). It took the nurse three tries before she managed to get the blood and place an IV. Ari, of course, was in a lot of pain and aggravation as a result, on top of her nausea and vomiting from her seizure. The doctor also ordered a CT scan for Ari, saying that they'd be able to see any areas of new bleeding or new damage to the brain, all without having to sedate her (as with an MRI). I don't know why this always sounds like a great idea at first, and turns out to be a ridiculous waste of time. You'd think I'd have learned my lesson by now. Ari has never had a CT scan that wasn't followed by an MRI. But there we went again. And the CT scan (which is a five minute thing) showed no new damage or blood. Good news. So, the ER doc told us that we were free to leave, we needed to increase her Phenobarb dose to 7 ml twice a day from 6 ml twice a day. She walked out of the room to go make up the discharge papers, when we heard her paged over the loudspeaker. The on-call neurologist at St. Joe's was on the phone and needed to speak with her. Five minutes later, the doctor reappears with an air of conviction, stating that the neurologist said that given Ari's history with stroke and her blood clotting disorders, if she had any remaining neurological deficit at this time (i.e. facial droop) that she would need to be admitted to the ICU. Ari was crying for some reason, and the doctor got all flustered, insisting that Ari still had a facial droop (8 hours or so post-ictal). Even though I could no longer see it and this news was very disappointing, her panic scared me, and we had her admitted.
The new ICU at Banner Desert Cardon's Medical is a beautiful place with great facilities. We also have a great Aflac ICU insurance policy that is going to take good care of us. That said, you have just heard everything positive that will come from this entire experience.

While we know from experience that being a patient in the ICU is never a walk in the park, I guess I repressed the memory of how awful it can really be. Ari was hospitalized in the ICU, because she was on "seizure watch" and because she would get an MRI faster than someone not in the ICU, but she wasn't sick. By the time her one day in ICU was over, I couldn't honestly say the same. Ari was scheduled for her MRI at 2:30... AM. I figured that since it was already after 10 PM by the time she was admitted and worked up, that she could at least have four hours of sleep that night. After all, she had been through a lot that day, had missed her nap altogether, and was exhausted and starving. Without giving you the play-by-play, this didn't happen. Between all the monitors, IV alarms sounding, rubber-gloved nurses coming in and out to repeatedly take her temperature (rectally), flush her IV, untape and retape the IV; put antibiotics and phenobarb in the IV; Ari may have slipped into sleep somewhere around 1 AM. At 1:30 AM, we were awakened by our nurse to find out that they would take her in MRI as soon as she was sedated and had a second IV placed. "Why do we need a second one?" I wanted to know. After all, between the EMTs and the ED nurses, they'd destroyed about five veins trying to get this one. I was told that the MRI needed one IV to put in a contrast solution, and the other was for her continuous drip of sedative since the doctor wanted minimal sedative (no general anesthesia) for the MRI. I said, "Can't we just give her a bolus of sedative and then have them follow it with the contrast solution in the one IV?" Of course the answer was no. So, from 1:30 AM to oh, 3 AM, a team of four nurses (plus Marci) huddled around the crib, on which I was cradling/pinning Ari down, while they shoved needles in her every which way to Sunday. I kid you not, they must have tried six different spots, at each spot spending about ten minutes while they fished and dug around for those elusive veins. Ari, having been just woken up in this way, was literally writhing in my arms, hoarse from screaming at the top of her lungs, and drenched in sweat. Keep in mind, she was hungry and thirsty (NPO for the MRI), sleep-deprived, and in extreme pain. I remember thinking, 'this would never be allowed at Guantanamo Bay'. Also, they were all crazy addicted to this thing called the J-tip needle-free lidocaine injection, which is supposed to numb the area. I'm sorry to knock medical research, especially when it's an attempt at reducing children's' pain, but this is not a pain-free injection, and it does not work immediately, and in some kids (Ari), it just makes things worse. The air-pressure injected Lidocaine did hurt Ari, and was often followed instantly by the IV needle (without time for the numbing effects to set in). The fact that the Lidocaine is pressure injected and very cold caused Ari's already skittish veins to constrict and run away. By the time I realized this, we had already run out of our Lidocaine allowance, and we were going au natural pain-wise. Finally, the last vein (no J-tip) worked, and the second IV was in and ready. Problem was, despite finally heeding my requests to increase Ari's sedative dosage, Ari was still no where close to sedated. As I warned she would be, she was even more agitated and upset than before (common effect of torture, wouldn't you think?).

But it was time to go. So there were were in MRI at 3:30 AM, with the technician telling me that even a slight chewing motion would ruin the pictures, producing motion artifacts, and Ari was wide awake. Knowing that Ari startles at the sound of a barking dog (and when I say "startles", I mean cries hysterically; and when I say "dog", I mean even our dog), and from what I've heard about MRI's being loud, I knew that "a slight chewing motion" would be the least of our problems... so I went in the MRI tunnel with her. I lay in the narrow opening between Ari's legs in the MRI tunnel to reassure her for two hours-- an uncomfortable but necessary decision. From the first bang, Ari was in hysterics. And just when she'd begin to acclimate to that one kind of bang, they'd pause and then start a different series of bangs (different pitch, speed, & pattern), causing her to start screaming all over again. All during this time, Ari is hooked up to her sedative drip through her IV, which isn't doing a dang thing. So I asked the nurse to ask the doctor to raise the dose or else everything that we were going through would be for nothing, as the MRI images would be rendered useless. She did, the doctor did, and when the nurse was about to up the dose, she decided to check the IV first (even though it was the new one; nurses have a compulsion for "checking" IVs). As she was doing this, she untaped it to look at it, and the IV slipped out. That's right, all those hours of torture amounted to nothing! Not only did the IV slip out, but she lost it before the contrast was added for the MRI (the reason it was there in the first place). So, as Ari is screaming and her blood is getting all over her and her blanket, the nurse gives me this look like she is going to have to redo it. Before she can even open her mouth, I tell her that she just needs to give Ari a bolus of sedative and chase it with the contrast dye in the one remaining IV, and that will be that. She called the doctor, and the doctor gave her the okay. While I probably should've been feeling relief right then that someone finally heeded my advice and Ari was going to get a break as a result, I was feeling like I wanted to strangle someone for putting Ariana through all that unnecessary pain and anguish. Oh, and it worked like a charm (my advice that is; not the strangling). The bolus of Versed (which they followed with the contrast dye) put Ari straight to sleep for the rest of the MRI, yielding the only salvageable images from the entire procedure.

At 5:45 AM, we were settling back into our room. Ari, Marci, and I finally had the chance to get some rest. That is, until 6:30 AM, when the intensivist Dr. Yun (sp?), walked in. The way I remember it, I was so out of it that she was talking to me quite a bit before I realized that I was not still dreaming, and it was even longer before I realized that she was a doctor. So, already, I think we're off to a poor start. That added to the fact that I'm a little pissed at how she ran the $*&! show the night before with all of her amazing direction about the sedation and the MRI. Then the first thing that I remember hearing out of her mouth that morning was "The MRI shows that there is a stroke. We need to do a repeat MRI; this time an MRV so we can see how big the clot is. The images from the MRI were not good because of all the movement. And we'll be putting her under general anesthesia this time, so she's still to be NPO. I don't expect that she'll be discharged any time really soon, because she will need to be put on anticoagulation." Another stroke??? I had a million questions, but I only got to ask a few, like "How do you know that this thrombosis (clot) and stroke (resulting brain damage) are acute and recent and aren't preexisting? How does that manifest on the MRI images? Are you sure???". I didn't get very far in my questions before realizing that Dr. Yun was growing very defensive, like I was an incompliant patient that had no right to be challenging her, and I must have been doing so only in my haste to get home and get things back to normal. This, of course, made me upset, and quite frankly, at this point, I didn't believe that Ari had a stroke. Here Ari sat, seemingly back to her normal self, post-stroke? It didn't make sense, especially given the obvious and life-altering damage that came as a result of her prior stroke as a two week old preemie in the NICU. I asked her if the anticoagulation (i.e. Heparin therapy) would reverse the effects of the stroke or break up the existing clot, to which she said "no". I said that I've heard of people catching strokes early enough to reverse them completely, and she said "we don't make a practice of doing that with peds (kids)". Then I said, "So you're saying that she's definitely had a stroke, and there's definitely no treatment that you offer for it?". Affirmative. "And we should plan on staying here because?" I wanted to know. She snipped, "so we can prevent the clot from getting bigger." I was still kind of dazed from exhaustion, but I remember her hurrying out of the room and feeling like we didn't really understand each other.

Ari was awoken then (after no more than 45 minutes of sleep) for her morning work-up and IV meds and fluids. The alarms were sounding off for every little thing (usual hospital stuff): this med is almost gone, the med is gone, switch out the fluids, the IV is obstructed & needs to be flushed or retaped, her heart monitor lead came off & stuck on a blanket, she kicked off her pulse-ox, etc. Ari was so hungry, thirsty, and agitated that there would be no sleep for her until 10 AM when her loading dose of phenobarb (4 x's her usual dose!) knocked her right out. The nurse came to prep Ari for her MRV at 10:30 AM. My heart sunk, because (like always) Ari had just fallen asleep, but I knew that the sooner she got the MRV over with, the sooner she'd be able to eat and drink, so I jumped at the opportunity. The MRV was being ordered without contrast dye, so there was no need to place a second IV, but we did still need the first. The IV monitor had been repeatedly sounding because of an 'obstruction patient side', so the nurse tried to flush it. It wasn't flushing, and Ari was screaming. Now, the nurse decided that it was the tape that was causing the obstruction, and that if she could untape and then retape it, it would flush. Now, that tape was on there pretty good, and the peeling away of layers upon layers of tacaderm tape on swollen skin over an IV site was not the kind of thing that makes for a good morning. As she was calling for another "set of hands" (nurse) to hold Ari down while she peeled the tape away, I insisted that I do it myself. I got a damp washcloth and slowly undid the tape, while Ari watched quietly. I was starting to get sick of the "I told you so" moments. When the tape was undone, the nurse (named Loralai, who was with us all the night before and up until right before the MRV that morning) forced the flush as Ari was screaming bloody murder. She decided she was proud of herself for getting the IV to flush, even though Ari wailed every time she pushed in the stopper, and considered it "reinforced". I scoffed and told her that IV was going to infiltrate any second. We were getting pretty sick of each other, and we were definitely due for shift change.

Shift change came, and on comes Deserae (our favorite nurse). As we were wheeling Ari down to get her MRV, I asked her if we could place another IV in Ari when she was under anesthesia for the MRV, just in case this one failed on us, so we wouldn't have to poke her again when she woke up. She agreed, and the anethesiologist (who was awesome, btw) got a vein on the first try after Ari was asleep. Right after they did this, the first IV failed, and they had the second one all set to switch right over. The actual MRV procedure went really well, but the results were a whole 'nother story. This is where it gets really confusing, even for me, and I was right there.
The results took several hours longer than expected to come in, which makes sense when you hear that there were four radiologists, one intensivist (Dr. Haddad), one hematologist (Dr. Shah), one peds neurologist (Dr. Haynes), and one otolaryngologist (ENT) (Dr. Mancuso) reading the images and making their judgements. To make a long story a little less long, let me just say that each and every one of these physicians (except the ENT who had his mind made up for his part & the four radiologists who were represented by just the Director of Radiology, Al Wildman) came in at least once to say that the MRV showed that Ari does have a clot...and they also came in at least once each to say that the results show that Ari does not have a clot. There was a lot of back-and-forth, a lot of apologizing on their part ("I drove all the way back to the hospital from my house just to tell you that I'm sorry, because I feet like I mis-led you"), a lot of empathizing ("If I were you, I'd be feeling so frustrated right now"), and a lot of offering to do me favors ("Let me get those images for you right now...I'll pick it up from St. Joe's if I have to"), but no decisive conclusions. No answers. Basically, it was a lot of "experts" telling me in their fancy jargon that they know a lot of stuff, so it lends them credibility when they use their fancy jargon to tell me that they don't know... that nobody knows if Ari has a thrombosis (clot) or not. That all of the tests they ran just put us right back where we were before we ran a single one. The issue: there is a missing vein in Ari's brain. There are a couple reasons this could be. Congenitally, she may be missing that vein (like Isabella is missing a hand), the imaging could have been spliced so that the vein didn't show up, or there could be a thrombosis in the vein (which was not seen) that is blocking the vein. They do agree, however, that so far, there has not been a stroke (brain damage/lack of oxygen resulting from the possible clot). However, if there is a clot, and it grows without treatment (anticoagulation therapy), there could be a stroke later on. That goes to say that if there is a clot, anticoagulants are necessary. But our hematologist, along with all the other doctors except the radiologists, seem to think that since there is no proof positive that there is a clot (they'd be using negative induction to arrive at the conclusion that there is one), it would be too dangerous to put Ari on 6 months of anticoagulation. It is very risky anyway, but if there is a clot it would at least be a necessary evil. So, let me just go on record to say, that I suggested they get her previous MRV scan (done in early 2009) from St. Joe's to use as a baseline to compare the two. If there was no vein in the first, then whatever caused it's absence is certainly not an acute problem. If there was, then it's a different story. They agreed to do this. The old MRV was ordered and should be in and read by Tuesday. I spoke again with the Director of Radiology today on the phone and told him that Tuesday is his deadline to get a final verdict on the MRV. Right now, the recent MRV report reads that there is a thrombosis. But we are treating her in line with the belief that there is no thrombosis. I'm not okay with that. It sounds to me like someone is trying to cover their #$$. I told Al WIldman (Director of Radiology at Banner) that if Dr. Shah (hematologist) decides not to treat, I want the MRV report to reflect that and be amended to say that there is no thrombosis. If they don't amend it and they maintain that there is a clot, I want to treatment to be consistent with that as well.

The last thing we found out is that there is something going on behind Ari's left ear. They waffled on this one as well. They told us it was a mastoid and a really serious inner ear infection, which could be responsible for throwing the clot. The ENT (really good ENT too, btw) said that she did not have an ear infection and said that it was only a pocket of fluid, which is common in children, and could potentially get infected. He said it was not a serious problem and definitely not responsible for a clot (or her nausea or her facial droop, as suggested by previous doctors).

That's all for now. I'll update when we find out more. Right now, what Jake and I keep hearing ourselves say is what a blessing it turned out to be that we didn't go get Stem Cell Therapy last weekend or the weekend before, because in our naivity, we would've most certainly blamed Ari's seizure and this (maybe) clot on the therapy. What an unnecessary regret that would've been. Right now, we're still planning on going for Stem Cell Therapy on February 15, although anything could happen. If this series of events tells us anything, it's that we are only passengers on this journey

The Scariest Halloween Ever

On the eve of Halloween (Thursday night), Jake and I put the twins down to bed around 8 PM, and everything was pretty much going as usual. Ariana felt a bit warm before I put her down, so I gave her some baby Tylenol; but that's pretty normal for Ariana, because it takes so much more energy for her to do regular things than it does for a typical child.

I went upstairs to my bedroom to nurse Isabella around 9 PM and I thought that I kept hearing Ariana "talking" on her monitor. It was ever so faint, and the noise wasn't causing the monitor light to flash, so I chalked it up to her having some extra energy and not having quite fallen asleep yet. A few minutes passed and Jake came upstairs. I asked for him to turn up Ariana's monitor, so I could hear her more clearly. When he did, I could still hardly hear her, but what I could hear was the same soft grunting sound that she sometimes makes -- but over and over again. Because I was still nursing Isabella, I asked Jake to go check on Ari (to this day, I still don't know what made me ask Jake to do this or why he consented -- we never check on Ari unless she is screaming, because if we do, she'll refuse to go back to sleep).

Over the monitor, I heard Jake open Ariana's door and immediately shout at me "Elisa, come here RIGHT NOW!" I came running, but he kept shouting "Right now!" When I peered over Ari's crib (not knowing what to expect: poop? vomit? spider?), I saw a far more terrifying sight. My baby girl was seizing violently tucked under her covers. Although this image I never want to see again, it is also something that I never want to forget -- and I never will; it is burned into my mind. I grabbed Ariana and brought her into the light, massaging her limbs and face, and crying her name. She would not stop. Ariana's face was as pale as a sheet, her lips were completely blue, her eyes bloodshot. She was covered in beads of sweat, but she was feverish. Ari's heart was racing and her breathing ragged. Her right eye was twitching violently, her right cheek spasming, the right side of her mouth smacking, and she was spitting. All the while, she made that little sound -- like the beginnings of a soft cry for help -- over and over again.

I knew from Ariana's previous seizures as a neonate (which only happened a handful of times in the NICU & never since she's been home) and from talking to other parents of children with seizures, that every minute seizing is a minute of oxygen deprivation from that part of her brain. Every second of seizure is a second her brain is dying, not growing as a young child's brain should. Jake and I felt like panicing, but knew that there wasn't time. We woke up Gabriel and loaded all three children in the car and rushed off to Gilbert Mercy Hospital. There wasn't time to drive all the way to the "good hospital" (Banner Mesa) or even to wait for 911 to bring the ambulance -- so we took her ourselves. I called her pediatrician on my way so we would not have a wait in the ER and they would make a bed ready for her arrival.

I cannot tell you how terrifying it was to look back at my baby in her carseat as she was being jerked around that way. I felt scared and desperate, but also angry. I begged God at the top of my lungs to please help my baby. I felt so alone -- I can't imagine how she must have felt. I wanted to scream, " You broke her! You broke my baby!" because she looked like an electic toy with a short in it from having been slammed on the ground by a mean child. She was like a lifeless object that was being cruelly puppeteered. I felt like I was watching my helpless angel be bullied, but by who or what? I didn't know.

When we arrived at the hospital, they sedated her with an anti-seizure medication called Adavan, and she was still. They ran a multitude of tests, poking her dozens of times, giving her a cathedar, a CAT scan, X-rays, and a spinal tap. She felt everything, but was unable to react (although she screamed and spasmed with the spinal tap despite the sedative). All the tests were negative, but she still had a 101.6* fever. The doctor was young, green, and cocky. He told me that I shouldn't worry until he tells me to worry. He told me this was probably just a regular febrile seizure that many children experience. He told me that she would be completely unaffected. . . He was wrong on all accounts.

Ariana was transferred to St. Joseph's Hospital just a few hours later, when they at Gilbert Mercy realized that they did not have all the answers or the Pediatric ICU and Neurologic care that she required. Ariana's first few hours in the PICU at St. Joes (a great hospital by all accounts) were nothing short of a house of horrors with a torture chamber for her. She woke up surrounded by strangers and without a single familiar face (the ambulance beat me to the hospital, and the parking situation was 1/8 mile walk from the hospital entrance), and was immediately barraged by more needles, monitor leads, bright lights, loud beeps, and wet washcloths. It was 2:30 AM on Halloween. She vomited from what was probably a combination of the after-effects of the seizure, the drugs, fatigue, and fear. The thought of what she has been through still haunts me. I arrived at 3 AM. When the doctors and nurses finally left her alone, Ari fell asleep in my arms. It was 4 AM. I put Ari in her crib (which looked more like a cage than a crib), nursed Isabella, and went to sleep. The nurses woke us up at 6 AM to start the whole process again. More labs, meds, and an EEG were ordered, before Ari was moved from the PICU to the Pediatric wing. After being moved, Ari's stay was milder, but not pain-free. Daddy gave her a bath, and Ari enjoyed visits from Aunt Marci, Grandma, and Grandpa Starr (Grammy & Grandpa Taylor were at our house watching Gabe). She got to play with toys, eat fun food, watch her favorite movies, and dress up in her Halloween costume (a lamb), but she was still miserable.
While in the hospital, we had a few conversations with the Pediatric Neurologists about our daughter. They told us that her seizure was extremely long in duration (it lasted at least one hour and possibly two, when anything over 30 seconds is considered long), and that it definitely will have caused some brain damage. He said that while it isn't likely for her to digress unless these seizures recur (apparently because children have "reserves"), it will likely affect her future potential. Meaning, what she probably would have achieved, now she may not. But how will we ever know what she would've achieved without the seizure? We just have to push her towards her fullest potential now.

Ariana was scheduled an MRI, which was later cancelled because it kept getting pushed back (St. Joe's is a trauma center, so her case was less emergent). Because we elected to do her MRI outpatient and her cultures came back negative, Ari was cleared to go home on Saturday afternoon. We were overjoyed to have her home -- I felt as giddy as I did when she was realeased from the NICU as a one month old. But we were also just as scared. Jake and I keep torturing ourselves with thoughts of "what if we hadn't checked on her and she seized all night?" It terrifies us to leave her alone now. We keep her monitor volume on high at night and are moving a video monitor into her room. It will take us all some time to fully recover from this incident.

Although, to the untrained eye, Ariana seems relatively unchanged from her seizure so far, I can tell that she is drowsier and more lethargic (she is back on her Phenobarbitol and at an elevated dose - 5 mL 2x per day, 20 mg/mL), she has increased tone in her legs and hips (tightness), and she has resumed her extension pattern (back arching, which she had previously outgrown). Her tongue is also slightly more protruded. These small changes can seem devastating to a mom who invests every ounce of emotion in Ari's slightest improvements. All I can do now is pray for the best, and work with Ari like crazy.

On a happy note, our little Gabe got to go trick-or-treating and to our neighborhood block party with his friend, Lana. Jake and I both got to be there for him while my family stayed with Ari in the hospital for a few hours. Gabe dressed up as a lion -- and what an adorable one he was too! He had his "rooaar" down pat and everything. The only thing he was missing was his little lamb counterpart (Ari). Gabe had so much fun running up and down people's front lawns with the other little kids, pigging out on pizza, and collecting candy (which he was happy to share). He went from door to door in a red radioflyer wagon, and stayed out a half hour passed his bedtime. I'm so happy that he didn't miss out on this experience despite the unfortunate turn of events for Ariana.
It was a really eventful weekend, and we couln't have managed with all the support of our friends and family members who were there for us. Thank you so much to all those who were a part of our weekend. Please continue to pray for Ariana, her health, and her continued development.