the seizure.

i have written before about caleb's first 2 years of life. he experienced seizures starting at 10 days old, along with other physical delays that caused him to need to wear orthopedic braces, use a walker, work with physical therapists and didn't take his first unassisted steps until the day after he turned 2.

but there was one day that was more difficult for me than the entire two years combined. i've had a couple of friends ask me about what happened when caleb had a 35 minute seizure at 18 months old and for some reason i've never really wanted to write about it. mostly because when i write, i re-live the experience.

but i've been thinking about it lately and feel like i'm ready. and i think it's important not only for me, but for caleb to read about one day.

so, here it is.

caleb, 18 mos

january 6, 2007

caleb had been getting over a cold for the past couple of days, and was seeming to feel better. he'd had a low-grade fever, but no longer needed tylenol. after dinner, i had gone to exercise at the gym, while ben played with caleb and got him ready for bed .

when i got home, i walked through the door and things were quiet. i remember what i was wearing, a pink hoodie, a white tank top underneath, black yoga pants.

the front room was messy, and there were DVD's all over the floor. at 18 months old, one of caleb's favorite things to do was open up the cupboard on our entertainment center and pull all of the DVD's out. i used to have to clean them up 4 or 5 times a day.

i figured ben was giving caleb his bath, so i walked down the hallway to the bathroom, but they weren't in there. the light in our bedroom was on.

as i walked in the bedroom, it took a minute to realize what was happening. ben was on his cell phone, and caleb was laying on our bed, on his side. i remember what he was wearing. a navy blue & white striped pajama shirt from old navy, and navy blue sweat pants.

i stared at him. looked at ben. and still couldn't understand.

caleb's eyes were half-open, and moving back and forth from side to side, but not focusing on anything. his knees were pulled up almost to his chest, his feet were together side by side, and his legs were moving up and down in a repetitive motion. his arms were bent, his little hands clenched in fists. his arms also moved in a repetitive motion.

out of his mouth came the strangest sound. it was like a grunt, and then a gasp for breath. over and over and over again.

"he's having a seizure," ben said. "and he's not coming out of it. i have 911 on the phone and they're sending an ambulance right now."

i completely lost my mind. i knelt down on the bed and started crying and pleading with caleb.

"caleb, it's mama. please look at me. caleb, please. please."

his eyes would not focus on mine, but just remained rotating from side to side.

i became hysterical and started pacing. sobbing as i went up and down the hallway. i would stop in the family room, drop to my knees and start to pray to God. then in mid-prayer, i would get up and go back to the bedroom and drop to my knees to beg caleb again. when he wouldn't respond i would get up and walk down the hallway to pray.

ben stayed on the phone with 911, explaining what caleb was doing now, that he hadn't changed.

i was able to ask ben what happened, how this started.

{he explained that he and caleb had been playing in the family room, and caleb was pulling the DVD's out of the cupboard when he closed the door, and pinched his own finger.

ben had been sitting just a foot or so away from him, and when caleb pinched his finger, he let out a howl. ben looked over and reached out to comfort him. but as caleb yelled out, he didn't take a breath. his eyes rolled up in his head, and as his body collapsed, ben caught him. ben tried to breathe into caleb's mouth to get him to take a breath, but he still didn't. instead, the seizure began.}

i called carrie & troy, our family who lived just minutes from us.

troy picked up the phone.

i tried to tell him through my sobs what was happening. he couldn't understand me until i was finally able to choke out in one breath, "CALEB IS HAVING A SEIZURE AND WE CAN'T GET HIM TO STOP. PLEASE COME OVER NOW."

"i'll be right there," was his reply.

at this point, i didn't know that carrie wasn't home. i didn't know that troy's two kids were in the middle of taking a bath, that troy had to call his next door neighbor to ask for help so that he could help us. i am so thankful for his quick reaction, and for the help of his neighbor amanda.

all i knew was that before the ambulance could even arrive, troy came to the front door. i was a complete mess and unable to pull together a coherent sentence, so i just pointed to the back bedroom where ben was still with caleb. troy ran.

they administered a priesthood blessing, and then troy came back out to the front room with me to wait for the ambulance. he was crying, and gave me a hug to tell me it was going to be okay.

by now caleb had been seizing for about 15 minutes.

an average seizure lasts anywhere from 3-7 minutes. any longer and there is an enormous increase in the risk of brain damage and possibly death. (i didn't know this information at the time that this was happening, and i'm grateful i didn't.)

the ambulance came, sirens blaring and lights flashing. the paramedics lifted caleb and took him to the back of the truck. ben sat in the back with caleb, i was in the front. (this was a good decision based on the state i was in. ben was able to remain calm even though he was extremely worried.) troy followed behind the ambulance in his car.

once caleb was in the ambulance, the paramedics gave him some medicine that stopped his seizure. ben told me he had stopped, and i began to calm down. however, as his arm was pricked to start an IV, his body started back up, and the seizure continued.

the ride to the hospital was horrible. it was extremely icy that night and we had to drive slowly. i sobbed my eyes out and prayed to God the entire time to heal his little body and help him to come out of this and still be my caleb.

by the time we made it to the ER, and he was rushed in, the seizure was going on 31 minutes. there was now a breathing tube in his mouth, IV in his arm and he was hooked up to several machines. there was a team of nurses and doctors surrounding him. they administered more medicine to him.

ben and i stood to the side, with our arms around each other.

about 5 minutes later, the seizure finally stopped. caleb's body lay still.

at this point several family members had been contacted and were on their way down. troy was there, and carrie was on her way.

we were told by the doctor that we wouldn't know how he would be affected until he woke up and the medicine had worn off. we were also told that he would be exhausted and would probably sleep for a while.

we waited.

family came in and we hugged and cried and they waited with us. more time passed, and finally caleb woke up. he was completely irrational and was thrashing around, and crying. he tried to pull out his IV, so the nurse wrapped it up with medical tape.

he was moved to his own room, and only 2 adults were allowed in at a time. we appreciated all of the support of our family, but also knew that there wasn't much they could do at this point. so eventually they left, except my mom. i was extremely grateful she had stayed, and for all of the help she provided.

caleb drank a little and we tried to get him to eat some crackers, but he wouldn't. he finally went back to sleep. ben and i tried to share the small hospital bed and slept in the room together. the night was long and hard, with him waking up frequently upset and unable to be comforted.

we spent the next day in the hospital, while tests were run and we looked for improvement from caleb. he started to become more like himself, saying words and asking for us to hold him. but he wasn't completely back to normal. he was aggressive and still irrational. he did a lot of thrashing around and seemed like he was constantly dizzy.

we were told that this could also be a side-effect from the anti-seizure medicine he had been given, but that the doctors felt it was best for him to stay on the medicine until he was able to have an EEG test done in a week.

the following morning, on a monday, he was released from the hospital and we were told to watch him carefully. ben had to go to work and i was grateful that my dad was able to be there to take caleb home with me, because i was completely freaked out to bring him home by myself. i couldn't believe that this had come from a pinched finger and was paranoid that if he hurt himself or became too upset, this would happen again. i remember wondering how to be a mother to him, when i knew i couldn't protect him from everything.

it was a hard week.

i was a bundle of nerves and anxiety, not to mention traumatized. i couldn't sleep and was scared to leave him alone, even just in a room by himself. every time i relaxed i would close my eyes and would picture his little body curled up with his arms and legs doing those strange jerking movements.

the medication and its side-effects still affected caleb a lot. he was not the same little guy who was easy and fun to be around. he slept about 18 hours out of the day, but not all at the same time. he would be awake for about 45 minutes, then get really aggressive and irrational and need to take a nap for about an hour. we did this all day long and it was pretty exhausting. he was constantly dizzy, throwing his head back and falling over easily.

at the end of the week we were sent to primary children's hospital for the 3rd EEG of caleb's life. the first two happened when he was under 6 months old and it was difficult then, but this was by far the hardest one.

the technician had to stick electrodes all over caleb's head, and then wrap it tightly with gauze in order to keep the electrodes secure. for the first two EEG's, we were supposed to keep him awake and upset (because that was when he would have seizures, when he was awake as opposed to asleep.) this time we were asked to bring him sleep-deprived and do our best to get him to go to sleep while his head was covered in wires.



not an easy task.

but eventually he fell asleep, and the testing began. when it was over, the neurologist met with us to explain that there was no seizure activity going on in his brain. we were grateful, but worried.

i've written before about feeling frustrated when there is not a clear diagnosis. it's like you exhale a very relieved breath of fresh air that it is not something serious, but then up come the questions. will this happen again? what are the chances? what do we do if it happens again? should we keep him on this medicine?

and what can be so frustrating about no diagnosis is that the decision is usually left up to you. or at least this is what we experienced for the majority of caleb's life. we were told that because they didn't know the source of the seizure, yes it could happen again. they had no idea what the likelihood of that would be. the medicine would protect it from happening again, but there were definite long-term effects from it that were quite severe.

we were also told that we were very lucky that it looked as though no brain damage had been done.

so the decision of what to do was left in our hands.

the fear of caleb having another seizure was definitely there... but the fear of having this terror of an 18 month old continue, as well as the long-term damage that could be done, was greater.

after talking about it, we decided not to fill the prescription and say a lot of prayers that it wouldn't happen again.

as soon as the medicine left his system, caleb returned. he could speak normally, stay awake, and came back to being our calm and easy-going little guy.

our prayers were answered, and he has not had a seizure since that day.

it has taken a looooooong time for me to work through this experience though. i've realized that i am someone who stuffs fears inside and tries really hard to cope with the day-to-day things without ever really dealing with the trauma. but it has leaked out in my parenting. i have had a hard time letting others baby-sit caleb, i over-stress and over-worry. and when it came to parenting him, i constantly felt on edge. up until about a year ago.

it was then that i was able to see reality for what it is now:

caleb is a healthy, happy and smart boy.




i can no longer keep him in the protective bubble that kept him alive for 2 years, and by trying to do it i am holding him back.

i'm grateful for the lesson i have learned as a mother and the blessing i have had to watch the strength and resilience of a boy who has overcome so much.

watch out bottom teeth!

you've got some neighbors moving in upstairs!

california day #7, also known as a dedicatory post to the ultrasound tech who earned himself a cold fold-out chair for his eternity in the fiery place

i realize that i'm pretty much all over the place with my postings, but what can i say? i'm a random gal.

i wrote earlier about one story about our trip in december to california, and i figured i'd share another, mainly because i can now find the humor in it.

but at the time it happened? not so much.

it was the day before we were leaving, and what should have been my 3rd day in disneyland. we had also made a little baby-sitting swaparoo deal with carrie & troy:

(a visual for your pleasure. they are even less normal than they look in this picture.)

where one couple would put all of the kids to bed while the other couple was able to go back to the park and actually ride some adult rides. (not that the 20 times on the "bug's life" slower-than-molasses toddler train isn't a blast.)

on the first night, we had watched carrie & troy's kiddos & the 3rd night they were planning on taking care of our hooligans.

but unfortunately, i woke up on disney-day#3 with some pain in my stomach. i got up and got ready anyway, and ate a little breakfast.

big mistake.

as soon as i put something in my stomach it was rejected and i ran for the bathroom. the sharp, upper abdomen pains didn't go away after the food found its way back out of my esophagus. in fact they increased.

i came out of the bathroom, told ben that i wasn't feeling well and he should take the kids without me, and hopefully i would be able to meet up with them later. i was bummed, and hoped it would pass.

but 7 hours later, i was still in a crazy amount of pain and running to the bathroom about every 20-40 minutes. there was nothing i could do once the stabbing pain would start and i had experienced this same illness right before thanksgiving. same pains, in the same place. and they were only getting worse.

so when ben called in the afternoon, i asked him to call our insurance to see if we had out of state coverage. i didn't go to the dr. the first time i had gotten sick in november, but was starting to wonder if these were gallstones or something.

unfortunately the only thing our insurance covered was an out of state ER visit. well i felt that was a bit dramatic, so i decided to just wait it out.

ben and the kids came home that evening, the kids ate dinner and went to bed. i was still sick. and by this point, add a bit teary to the story because it had taken MONTHS to save up for this dang trip and i had missed out on an entire day of fun, not to mention what should have been a date night with ben.

at about 8:30, i couldn't stand it any longer. it wasn't just the pain and the barfing, but also the knowledge that we were leaving first thing in the morning for a 6 hour ride home. so if there was something that i could do to feel better before hopping in that car, i wanted to do it. and take 10 of them.

finally at 9pm, i had had enough. the kids were asleep, we left the adjoining door of our hotel room open for carrie & troy and left for the ER.

i have been a part of many an ER visit and i know that the term "emergency" is used loosely around there.

about 2 hours later, i was finally seen by a doctor who said that i needed to get an ultrasound done to see if there were any gallstones or kidney stones.

and this is where our story begins. (all of that rambling was just backstory info. bet you're wishing i had told you that sooner, huh?)

the ultrasound tech came sauntering up with a wheelchair, looking a lot like this guy:



mustache included.

i got in the wheelchair and we took off! meaning he went fast. a little too fast, because one of the wheels caught mid-spin and the wheelchair lurched forward, almost dumping me out of it.

ultrasound tech dropped the F-bomb and slowed down. at this point i realized that i had more to fear then the stomach pains i had been enduring.

i lay down on the bed, and since i was merely clothed in a hospital gown & my birthday suit, ultrasound tech put a blanket over my legs so i could expose my stomach without exposing the rest of my goods.

as he went to squirt the freezing cold ultrasound jelly on my stomach he looked down and said, and i quote:

"woah! just had a baby, huh?"

ummmm.

huh?

it took me a minute to figure out what he was implying.


i looked around like this:




and then like this:




and when i realized that he was referring to my stretch marks, looked like this:



and this:




{ now here's the deal on stretch marks. i think they are totally lame. not in the fact that when we as women get pregnant, get them, but more in the fact that it seems like there is such a stigma attached to them.

the women who get them (myself included) seem to just want to DIE the minute they see one forming. not all women, i'm generalizing here. we pull out our cocoa butter and oils and lather ourselves up in hopes of stopping the metaphorical tear in our nylons.

and the women who don't get them seem wear it like a badge of honor that their skin is still unscathed and they are just born blessed, lucky and chosen. (again, generalization.)

and some women? they. just. don't. care. and these my friends, are the women to be jealous of.

here is how i feel about stretch marks in general, and mine in particular.

when i was pregnant with caleb, i didn't get one stretch mark until the day he was born. then i think because he hadn't dropped at all and my body just went from:

hey! i'm carrying 17 extra pounds around! no big deal!

to:

holy mother of pearl! there is something inside of me and moving very quickly in the southern direction and i have no control over this! let's stretch out to make room for the party going on!

i remember the utter and sheer disappointment i felt when i came home from the hospital with four small stretch marks on my lower abdomen.

when i was pregnant with leah, i vowed to not have the same thing happen. but right around 8 1/2 mos along, my body disagreed. i ended up with about 6 more stretch marks, all again on my lower abdomen. none of them even reaching my belly button. i realized i was still disappointed about getting them, and decided to change my frame of mind.

so. now how do i feel about them?

well in my quest to figure out why we as women judge each other so harshly, and hold each other up to an insanely high standard...

i own my stretch marks.

i'd like to say i love them, but i haven't quite gotten there yet.

however, i love my children, and they are the cause of the map on my skin and if i had to trade the smoothness of yore for the silvery lines of today i wouldn't.

they signify the journey. so i own them. and quite frankly, if you have them, i think you should too! }

back to the story. there was a purpose for telling you that.

so when ultrasound tech said,

"woah! just had a baby, huh?"

all of that "i own my stretch marks" stuff flew out the window. i became completely and utterly self-conscious.

"well, uh, yeah, uh, a while ago, uh," i stammered.

AND THEN HE SAYS,

"jeez. must have been some baby." emphasis on the some.




HUH?

excuse me?


he did NOT just say that to me!


so i had gone to flustered and self-conscious to ticked off and indignant.


"what is that supposed to mean?" i asked him. with a tone.

even though he was an idiot, he realized his mistake.

"oh, um. nothing. so what's going on with you? why are we doing an ultrasound?" he changed the subject.

"well i've been having some really severe sharp stomach pains and the doctor just wanted to check and make sure i didn't have gallstones or something," i answered, just trying to make it through the rest of the ultrasound without taking the jelly out of his lame hands and squirting it into his eyeballs.

he started laughing.

"what's so funny?" i asked.

"gall stones? doubtful. you're caucasian. my guess is that you ate some spicy mexican food last night and can't handle it." and kept laughing.

that was IT.



"you know, it's really going to SUCK to be YOU if these stomach pains turn out to be pancreatic cancer or something and you just sat here laughing at me in pain," i retorted.

he stopped laughing. cleared his throat. ahem. ahem. aheeeem.

"well, no gall stones," he said quietly.

"fabulous."

my tone was icy.

he wheeled me back at a normal pace in silence.



now i ask you.

what kind of an ultrasound tech asks these sort of questions and makes these sort of comments?

that's right. the kind that earns themselves a cold fold-out chair for their eternity in the fiery place.



mmm-hmm.


{ p.s. no, i did not have pancreatic cancer. the doctor had said that when i got back home i needed to be checked for an ulcer or hernia. no i haven't gotten checked for those. because i chalked the experience up to food poisoning (which my bro-in-law also came down with the next day). caused by what? spicy chinese food. take that ultrasound tech! }

what is it with my kids and birthday cake??

caleb, 2006

leah, 2010

even after giving them a taste (against their will) neither of them "got into it."

he ended up in tears...

she ended up sharing.

with the next kid i'm thinking we might just give them a cucumber and let them go to town,

since that's what both caleb and leah wanted anyway.

it's times like these that i have to remind myself that they are in fact my children, when evidence like cake-eating points to the contrary.

luckily they both provided me with lots of leftover goodness.

and that's really what it's mostly about anyway, isn't it?

:)

five hundred, twenty-five thousand, six hundred minutes.

how do you measure the year of a life?

measure in love.

happy birthday baby girl.

the babelet conundrum, continued...

another alternative to the babelet.

this may not solve the party in the back problem, but it helps create a diversion by providing some excitement in the front.


caleb is not a fan, to say the least.

as soon as she walked up to him, he yelled out,

"YIKES! WHAT IS THAT??"

and vowed not to look at her until it was taken out.

side air bags.

who knew knees could have 'em?

there are times when...

after my kids are in bed, i am often caught reading posts like these, and crying.

it is hard to read of others' suffering, especially when it comes to beautiful babies like layla, being stricken with something that is beyond anyone's control.

i pray for this little baby girl who has been so strong and fought such a good fight, and who is quite possibly losing this battle. i pray for her parents, and her sisters and others who surround her who try to make sense of an enormously un-sensible situation.

and i pray for myself. to have no regrets with my children. to enjoy each moment, instead of counting the minutes until nap time, quiet time, bedtime. to enjoy their soft, slobbery kisses a little more. to play with them and spend time with them all day long and remember that they are a direct gift from God who has given me the blessing of being their mother.

off to spend time with them:

a late valentine's night out

it started with these...




(which hasn't happened since...ummmm, 2006)


and ended here...




we had such a good time talking, laughing, and dipping dipping dipping.




it was our 3rd date in 2 years and what we have lacked in quantity, we made up for with quality.
(not that i recommend this pattern for other couples. it's good to have frequent one-on-one time and it's something that we are recommitting to make a priority.)


while we were getting ready to go, caleb was asking us what "dates" were and when he would be able to go on them. we talked about him being 16 and then eventually marrying someone who he dated a lot.

as we walked out the door, caleb yelled to me,

"have fun with your husband, mom!"


and i did.

a purposeful babelet?

well this is like the 20th posting i've done of leah. and i have other things to write about, but today was like "rite of passage day" in every little girl's life. bare with me.

okay, so.

after months of waiting...and calling her

Q-ball,

baldy mcbalderson,

mr. clean,

(in earlier, more hair-free days...5 months old)

leah finally has some hair.

(which by the way ben takes complete credit for. granted, he is the one who started brushing her bald noggin nightly after her bath, and he feels this is what stimulated the hair follicles. or something like that...ask him about it. i'm sure he'll tell you.)

however,

it's taking longer for the top to catch up to the back. most of the time she kind of resembles mr. stutz, my 7th grade science teacher, who had a combover that was out of this world.

exhibit A:


notice the side swipe? mr. stutz should have patented that little move. he could be a billionaire by now.


and here is the closest thing i have to the back of her hair, even though it's more of a side shot.

exhibit B:




i have to be honest here, and hope i don't offend the masses.


but i am NOT a fan of the baby mullet. i will call it the "babelet." and i haven't been a fan for years. it doesn't seem to matter how darling the face can be in front of the party in the back, i just can't get on board with it.

so my idea was to give her a little hair cut in the back, just enough so that it wouldn't hang over the back of her collars and stuff. giving the top a fighting chance in the race to the finish.

however, ben was completely against the idea.

like whoo doggy! AGAINST.

he was so dramatic about it that he could have physically thrown himself over her head of hair, yelled out "take me instead!" and i wouldn't have been surprised.

cutting this little girl's hair??? after it's taken so long to grow??? i should be ashamed!!

so i backed down. gritted my teeth, tried to calm down her flying hair when it drove me nuts and i saw visions of this little family swimming in my head:




but then today? i may have seen a little bit of the "mullet light."

because after about twenty minutes of trying to figure out what in the world i was even doing, i came up with a semi-finished product of how to work around the "babelet."

and here's the debut:








yes, they look more like upside down pigtails. and yes the back looks horrendous. but like i said, it took me 20 minutes and a whole lot of distracting her to stop pulling it out or arching her back while simultaneously yelling at me.

and it worked...for a few minutes. but at least i saw a hope of what could be.

i'm not sure yet that i'm entirely convinced. the pigtails are cute, but i also like the idea of a cute little round pixie-head until there's enough hair to go around.

any thoughts on the babelet??