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

C'est La Vie

As you know, last Tuesday we made a decision to postpone Ari's Stem Cell Therapy (supposed to be this past Monday), because she and Gabe were sick with high fevers and a nasty cough. On last Thursday, we felt assured that we had made the right decision, because Gabe was still burning up, and Ari's cough was still going strong. By Friday, the kids had healed up completely. By this time, I had already cancelled and rescheduled our appointment, cancelled our hotel reservations, rescheduled Ari's weekly therapy appointments, and told all our friends, family, and those praying for us that we weren't going. But, we were seriously wishing that we had gone, because, hello, the kids ended up being well all weekend long. So, we figure, 'let's just go this coming weekend while the kids are healthy.' We book it, so very proud of ourselves for our spontaneity. After all, the logic in this was how are we ever going to know the week before if our kids (Ari specifically) will be sick or well by Monday of the following week? They could be well and the get sick, sick and stay sick, sick and get well, you know...

Come Monday night, Ariana wakes up screaming and vomitting. I second guess our decision, but stick it out anyway. Tuesday, she seems back to her happy self (*relief*), but Isabella starts getting diarrhea (no!). Wednesday evening, Ari vomits again, but only once after dinner, and sleeps through the night just fine. Bella still has diarrhea. Thursday (today), Ari seems fine again. No vomitting, although she started acting nauseaus at dinner again (this she demonstrates by arching her back and screaming for no reason). But Gabe tells us he has a "tummy ache" and a "fever in his tummy" all day. After his nap, he pukes up his entire lunch all over his crib. Bella wakes up from her nap covered in diarrhea. So, I give in and cancel the trip for tomorrow. Even if I wanted to go, even if the kids would be well by Monday, it would be a miserable car ride and four days leading up to Ari's treatment. And I had no time to pack, because I was busy tending to my needy litter of sick babes. I know it's viral, because Ari and Gabe just finished a round of antibiotics, so there's nothing we can do at this point to kick this out of their systems any faster.

Right now, we're just saying that we're playing this by ear. I wish I could give a definite date to people, especially those who wish to pray for Ariana on the day of her procedure, but since everything is dependent on our health, this is impossible. I can't handle the uncertainty. I have to make literally fifteen phone calls every time we cancel or reschedule, to work in doctor's appointments, therapy visits, pre-school tryouts (don't ask), carpet cleaners, dog sitters, Jake's work schedule, Devyn's work schedule, and everything in between. I think this is giving me a major anxiety disorder. I'm kidding, but it is really stressing me out. My kids have not been well (all three at once) for more than three consecutive days since Christmas! If we don't all get well soon, I'm going to commit myself. Jake says, "C'est la vie. Le tragédie," and somehow this actually does make me feel more normal.

Heaven's Very Special Child

A meeting was held quite far from Earth
It's time again for another birth
Said the angels to the Lord above
This Special Child will need much love.

Her progress may be very slow,
accomplishments she may not show,
and she'll require extra care
from the folks she meets down there.

She may not run or talk or play
Her thoughts may seem quite far away
In many ways, she won't adapt
And she'll be known as 'handicapped'.

So let's be careful where she's sent
We want her life to be content
Please Lord, find the parents who
will do a special job for you.

They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is Heaven's very Special Child.

-By Edna Masionilla
adapted by Elisa Taylor

Disney On Ice

Last Friday morning, we had the amazing opportunity to go see "Disney On Ice" (thanks to Chrissy -- you ROCK!). It was all very spontaneous (which you know makes things that much more exciting of course), but none of us knew we were getting to go until Friday morning, and then I didn't check my voicemail from Chrissy until way after she called... so needless to say, we were late. 30 minutes late. And we felt horrible when we found out that Chrissy and her whole group had waited for us to get there before they went in and sat down (truly a good friend).

We arrived right at the end of 'The Little Mermaid'. I was a little bummed that we missed that, because of course it would've been beautiful. Next on was the 'The Lion King', followed by appearances from Micky, Minnie, and the gang, then an Intermission. Even though my kids have never seen 'The Lion King', they were just enchanted by it. They all danced to the songs with huge open-mounthed grins on their faces, and pointed out the animals as they stampeded past. This 'Disney On Ice' was supposed to feature four main acts: the ones I mentioned above, 'Tinkerbell' and 'Cars'. Naturally, I assumed that since we saw two acts in the first half, that there would be two acts in the second half as well (good spacing right?). My concern was, of course, that we missed what would've been the highlight of my son's childhood -- 'Cars'. No one we were with knew if it was in the first half of the show, because they were waiting on our slow you-know-whats. After Intermission, came 'Tickerbell', which my kids recognized because they have the movie, and Ari was especially in awe with all the girly gorgeousness of the fairies in Pixie Hollow. Mickey, Minnie, Donald, and Goofy came out one last time, and that was the end of the show. We missed 'Cars'. All the kids had an awesome time, and they were none the wiser that 'Cars' had been there... but I was, and I couldn't shake my guilt over this for the last few days.
I don't know why it affected me this much. I have been trying to rationalize it and then just get over it, but I really couldn't shake it. I felt like crying every time I thought of Gabe having the opportunity to watch his heroes race around on the ice just feet in front of him... and then me blowing it by not having my phone right by me to answer it as soon as we got the call. That thought and how I forgot to charge my camera battery, so I have no pictures of my kids' happiness. I thought about taking him back to see Lightning McQueen all weekend long, just the two of us, so I could see his little face light up in astonishment. But the weekend got away from us, and the tour has moved on. Yesterday, I realized that I really needed to do something so I could stop letting this make me feel like a failure as a mom. And that's when I found it. Thank you YOUTUBE!

I plunked little Gabriel on my lap, and we watched this (series of 3 youtube segments) three times. Gabe's eyes lit up when he first saw Mater, and when Lightning McQueen came out, he started softly cheering and clapping. I could feel my mom-guilt dissolving, as he beamed at the computer screen. We showed Ari and Bella the videos too, but they didn't have quite the same reaction.

Yesterday, at breakfast he said, "Mommy, I wanna go see Disney on ice skates."

I replied, "What was your favorite part of the show?"

To which his response was, "Um, Lighting McQueen... and Mater... and Ramone... and Sally... and".

Redeption at last :).

Bake Sale Fundraiser

As many already know, the Scottsdale Chef Bake Sale Fundraiser that was put on by my mom and her closest friends (thank you so much Cheryl, Helen, Coralia, Paula, Bonnie, and anyone that I may be forgetting!) was a success. For eight hours, people trickled in, coming and going. Some people bought beautiful pies and cakes to give as gifts, others a few delicious cookies or a quiche to eat right there, several left with a beautiful piece of jewelry, and still others just came to drop off a donation. It was a really nice day, and thanks to everyone involved, they managed to raise for us $4,500. What a wonderful outcome to have met our goal of $17,000 for Ari's first Stem Cell Therapy procedure! We feel so blessed to have so many people who care about us and especially Ari!

Stem Cell Therapy Postponed

After much consideration, Jacob & I have decided to postpone Ariana's Stem Cell Therapy, due to illness. Ariana came down with a strong head a chest cold and pink eye over the last few weeks, and they have yet to blow over (except the pink eye). On top of that, Ari came down with high fever and chills on Friday night, and she has not been well ever since. This is her first day without a temperature, but she still is very congested and seems to be very weak. To boot, Gabe has just gotten sick and our nanny Devyn seems to be catching it as well.

Stem cells, in theory, always home to the sight of most recent injury (or low oxygen levels). If Ariana's body is working on fighting off illness, the stem cells (for lack of a better term) might be very confused, and get misdirected from our primary goal, which is of course her brain. That would be a very expensive and taxing treatment for a flu virus.

Needless to say, we are going to wait until Ari is well to go seek treatment. Our new tentative date is February 15, which is also over a three-day weekend. So please remember to pray on that date. If, for whatever reason, Ari should recuperate fully earlier than that, we may (doctor's schedules permitting) grab the opportunity and go sooner. We'll keep you posted.

December Milestones

This month, Gabe and Ari both turned 34 months, and Isabella turned 15 months.

Ariana has not been doing too much new this month. She is still commando crawling to get to where she wants to go. Her only words are "hi" and (sometimes) "mama" and "bye". When we ask her to say a word, her response is pretty much always "aba." If we really encourage her, she might say "ababa" or "abaaaaa", but no new sounds or consonants have come up. If we're feeling really optimistic, we might just convince ourselves that she's saying "book" or "ball" or any other real word that sounds like "aba", but truth be told, this isn't the case. That is simply the only consonant that she can reliably make.

Ari has been working with her talker, but things are kind of going in a different direction for her. While my initial concern with the talker was that Ari would not understand how to navigate from page to page to get to the words she wanted to say, this isn't so. She is learning how to navigate really well actually. The problem at present is that Ari chooses to navigate away from the pages that would help her communicate her wants and opts to navigate straight towards the "fun" pages that play her music and let her look at pictures. Whenever I try to bring her screen back to the "core" or homepage, she'll navigate right out of it again to her favorites. I've thought about "hiding" those buttons to restrict her usage to just communication, and I just might end up doing that, but she just enjoys playing with that so much that I don't really want to take away her favorite toy. The music is her favorite part, and it is just so reinforcing for her that it might be her sole motivation (and least the main motivation) for her to even play with the talker in the first place. It's a stumbling block for us. Communication device turns into a toy... a great toy, but defeating the point of communication nonetheless.

We have been working on a systematic desensitization for Ari's phobia of gloves, mittens, hand puppets, or any type of hand covering. This fear arose as a result of repeated traumatic episodes involving nurses and doctors wearing rubber gloves. If my memory serves me, she has never been the same about this since her hospitalization in 2008 from her seizure. So, seeing as though it's winter and she has decided to loathe/fear anyone covering their hands, I realized that something needed to be done (albeit gradually). Most recently, Ari started crying hysterically when she met a friend of mine who had pulled her sleeves over her hands, and she began to tremble and cry when she saw me remove a hot pan from the oven with oven mitts. After our first session, Ari was able to wear the oven mitts herself (happily). After her Nana worked with her again, she was able to wear her own real mittens and she loved them. Baby steps...

We made some new friends this month who are really great people. But more importantly, Ari made a new friend. Their daughter is Ari's age and also has Cerebral Palsy. She is affected in very similar ways to Ari. Like Ari, she is not independently mobile, she does not have a large expressive vocabulary, and she is more limited on one side of her body than another. Also like Ari, her receptive language (her understanding and cognition) are relatively great, and her stellar personality outshines any physical restrictions she has. I am so excited to have finally found a little friend for Ari.This is our last month before Stem Cell Therapy. I am really excited, nervous, hopeful, and feeling a good deal of the entire scope of human emotion over her upcoming procedure. Ari has hit somewhat of a plateau in achieving her major milestones as you can see from my last several milestones updates. Her mobility hasn't significantly improved since learning to belly crawl. She is able to say as many or fewer words as she was once able to (a common feature of brain injury is a "coming and going" of expressive vocabulary). She is still very restricted is her use of the right side of her body, especially her right arm and hand. She is able to weight bear minimally on this hand and lift it slowly upon our request, but it isn't functional enough to be considered a "helper hand". Ari is still drooling, and only controls it when we verbally call her attention to it by asking her to "swallow". Her appetite is still poor most of the time, due to the fact that she refuses most meats (meatballs, chicken nuggets, steak, chicken breast, etc.), because they are the hardest foods for her to chew and she doesn't enjoy the flavor. Ari's receptive language is improving consistently, as she is increasingly able to understand more and more of what we say to her. Ari is almost three years old now. One of my un-based but motherly worries is that Ari will quit trying to communicate verbally because of such a long history of repeated failures. I'm afraid that if she doesn't start talking soon (even if just a few words), that she'll start to believe that her brain/mouth is incapable of making words, and she'll give up. That Ari will start talking is one of my primary hopes for stem cell therapy. If anything comes from it at all, it is my greatest desire that she will start to say words. Although it almost hurts me to put that in writing out of my own personal fear that I will be disappointed... or rather, devastated, if it doesn't come to pass. Ari is almost three years old now. She loves people, especially other children and babies, music, toys, and playing interactive games. She is our angel, and she has not ceased to draw the admiration of whomever she comes into contact with for her happy spirit, her flirty smiles and glances, her girly personality, and her determination. Please keep her in your prayers on Monday, January 18, 2010.

Isabella, on the other hand, is growing up so fast. She is completely weaned from breastfeeding (except when she's sick). Synonymous with this, she has decided she is no longer a "mama's girl", which breaks my heart to bits. She refuses to give me kisses, and she clamours and cheers for her Daddy. I always have to steal my kisses from her, to which her reply is a defiant "NO no no no no!". She has developed quite an independent personality, and unlike her brother and sister, she doesn't like to be doted on. She wants to do her own thing for the most part, and only get help or affection when she asks for it. She has begun to want to do all kinds of things on her own, that I'm not sure I'm in favor of. For example, she has started boycotting eating breakfast because I have always spoon fed her cereal. She wants to do the spoon feeding of the cereal and the yogurt, which I have allowed, only out of necessity to get her to eat. Once my best eater, she has started getting pickier, which I guess is normal for her age *groan*. Frequently, she'll put food in her mouth, pull it back out and hold it up to examine it (seriously Isabella style right here), put it back in her mouth, and pull it out again only to throw it on the floor for Chewy. She loves feeding Chewy. Me? Not so much.

Isabella has been saying quite a few words, and contrary to my promise to keep a better record of the words she says, I'm afraid I've dropped the ball on that one again. It's the third child syndrome -- with Gabe, I had every word written on a sheet of paper until, like, 50 words. All of Isabella's little achievements get noticed late (if at all), or get noticed then forgotten. It's so sad. At least I finished her baby book :). Well, altogether, if I had to guess, I think Isabella has said about 30-40 words. She doesn't use them consistently, and sometimes she refuses to use her words as a kind of rebellion. Some words I've heard her say recently are: cheese, orgsh (orange), nana (Nana & banana), hold you, ouch (which she says whenever anyone gets too close to her uninvited -- including when I give her kisses), bed, bear, ada (all done). She jabbers and sings to herself all the time, and she loves to walk around talking about (repeatedly saying the names) of her two favorite people: "Dada" and "Nomo" (Nemo).

Bella is still just as active and agile as ever. She gets around so fast speed walking everywhere she goes and climbing whatever she can find. She likes to stand up on high (benches, bar stools, countertop) or unsteady (rocking board that the PT brings over) surfaces. She is still fantastic at making messes (way better than I'd like to admit), and she her independent streak carries into her physically active endeavors. The other day (this is January but still), she walked down the stairs with her hand held by Devyn.

Lastly, Isabella has taken an interest in blocks and puzzles. For the longest time, I thought that Isabella would simply not have the patience for these (relatively boring) tasks, due to her adventuresome personality. She has surprised me this month, when I've caught her on several occasions sitting quietly in the playroom alone, stacking blocks 4-5 high into a tower. She has started carrying blocks around with her so she can stack them up wherever she lands. She has also started putting shapes into a shape sorter and attempting shape puzzles. She is really getting the hang of the shape sorter (her favorite piece being the circle, but still!). She'll do this for up to 15 minutes! I'm so impressed with her focus -- I guess I underestimated her.

Gabe has also been growing up so fast. He is really getting the hang of holding conversations, and I'm often impressed listening to him. He has gotten more independent lately in a number of different activities. When he decides to do something on his own, he announces "That's my job!", and should we intervene, we do so at our own peril. So many things are his "job" now that they're hard to keep straight: climbing in and our of carseats, opening and closing doors, flushing toilets, pulling up or down pants, whatever. On the flip side, sometimes he'll demand my help when he's feeling lax by saying "No, you do it Mommy!". Then, if I oblige him, he might change his mind midway through or immediately after and want to redo what I already did for him. Needless to say, getting much done in my house can be an arduous process.

Along the lines of developing independence, Gabe has started branching out socially even more than before. I really feel like I've seen him mature a great deal in this regard. He has started having a preference towards certain friends over others. He tends to gravitate towards boys mostly, but still gets along well with his female friends. His interests right now are very "boy". They include such things as rough-and-tumble play, 'fighting' with swords and guns, scary things like skeletons and sharks, cars and trucks, construction vehicles, and espeically sports (football and baseball being his favorites). The other day he told me "boys play sports Mommy". I don't know how he came up with that, but I think he's developing a healthy gender identity. His best friends are definitely his male cousins, about whom he talks incessantly. Over Christmas, he got to play with three of his cousins for five days in a row, and it was little boy heaven for him. They rode trikes (Gabe is still not pedaling), played cars and guns, chased each other around, watched Diego and Peter Pan, and played games with one another. I had greatly underestimated Gabe's ability to play cooperatively with his peers, because I predominantly witness him being bossy and unwilling to share with his sisters. I was pleasantly surprised that he took turns, shared toys, held conversations, followed adult instruction, didn't require adult supervision, and cooperated during games, all the while laughing and having fun! I especially couldn't believe how he was able to grasp the concept of games (like board games!), such as Candyland, Lets Go Fishin, and others. I hadn't even thought about introducing board games yet (more than likely because Ari might have difficulty understanding it & Isabella would try to run off with the pieces), but it was really enlightening for me to see what Gabe was capable of.

Also new for Gabe is the world of pretend play. Gabe's imagination has really started taking off, and it's so fun to see. While he has long pretended to cook or talk on the phone, he is recently taken it to a fantastical realm. He loves pretending that he's his favorite characters. Lately, Peter Pan is the guy to be. He jumps off the bed, flapping his wings, singing the "You can fly" song or takes an empty paper towel roll and holds it up to his eye exclaiming "Look out Peter Pan!...Mommy, it's my telescope!" or comes over and whacks me with it saying "I'm gonna fight the injuns" (lyric from a Peter Pan song). Ari laughs at him, thinking this is just the silliest behavior she's ever seen. It's times like these (and so many others) that my heart breaks for her -- not being able to run around, singing, and playing with him. They are twins; they are supposed to have each other to play with. But I digress...

Anyway, Gabe, although bossy and whiny a lot of the time, can also be a great, empathetic, and encouraging big brother to his sisters, and a real charmer to others as well. Often, when he sees Bella attempting a challenging feat (like fitting shapes into the shape sorter), Gabe will be right there next to her, cheering her on saying, "Good job, Bella! Wow, you're smart!". These are the moments that, like any mom, my heart beams with pride :). Gabe also has been heard saying cute phrases such as "Goodness!" and "Oh dear!", which I think are so endearng (and it's nice to hear this echoed back at me, reminding me of why I try to watch my language around him).

Gabe got a 3-disc DVD series called "Meet the Sightwords" for Christmas from his Grammy, and it has been awesome! Gabe has memorized nearly every one of those 45 sight words and can recognize them in any context (i.e. of, look, he, she, word, up...). I point those words out on the back of cereal boxes or in books and he gets them without hesitation. Not only does this impress me, but it impresses him, and he feels like he is really reading. Knowing the sight words in combination with his phonics, I think, has really helped him make the connection as to what reading is. He loves it. Also for Christmas, Gabe got a computer game and console (hooks up to the TV) from Nana, and a Leapfrog Text n Learn (kind of like a pretend Blackberry) from us. Between these two, Gabe is getting really familiar with the QWERTY keyboard and where the letters & numbers are located. He is also learning mouse skills and how to use arrow and select buttons to navigate. I love it!

FOX 10 News Coverage

The bake sale was a huge success today! Thank you so much to my mom for putting it all together and making it happen, to all of her wonderful friends to volunteered their time and resources, and of course to everyone who showed up or donated to show their support. We raised $4,000!!!

Here is the latest video clip that aired on FOX 10 news tonight along with the article:

Imagination Ave.

Like a town... shrunken down. We loved every minute of that manic one hour of playtime. Thanks Erin, Ella & Cameron for inviting us us :). reporting for dutyhere to serve and protect at the playgroundtrying on some clothes in the boutiqueIsabella horsing around on the playgroundhad to go to jail... we've been bad.running errands at the grocery store school timetrip to Home Depotdoctor's visitstrolling around townhaving lunch at homelounging on the back patio