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.

is knowing really half the battle?

we've been told a couple of times by doctors that caleb is "his own syndrome."

the caleb syndrome.

are those supposed to be words of comfort?

i don't expect the experts to have all the answers & to work miracles. however, it's difficult when we have an underweight, constantly screaming, constantly seizure-ing baby with no answers as to how to help him.

but we've learned to accept that this just may be the way it is with him. and when things improve, we are eternally grateful.

so far, the caleb syndrome consists of:

2-vessel umbilical cord
4 1/2 lbs birth weight
seizures starting at 10 days
an extra rib
a sacral dimple
a whole in his heart (which later corrected itself)
an underdeveloped digestive system
an ectopic kidney--means his kidney is out of place
cysts of water that line a section of his spine
two vertebrae at the base of his neck that are fused together
a weak immune system causing him to catch everything that comes his way (& usually it's twice as bad as the person who had it before him)
slow to develop physically (didn't walk until he was 2 yrs, & that was with physical therapy & braces)

so what does all of this add up to be?

the caleb syndrome.

which is a way to say, "we have no idea what's going on with him & we can't do anything to help him that won't cause him more trouble."

so here is my question:

is it better to know all of these things, or not to know?

i have always felt that knowledge is power. i have researched all of his problems, memorized all of his diagnoses and carried around this huge file of all of his tests & their outcomes so that i feel knowledgeable. empowered.

a while ago my friend rachel c. wrote the question "is ignorance really bliss?" and i have thought hard about this for several days. is knowing really half the battle? or does it just make it all so much more complicated because now you have something holding you accountable? and having the what-if's weighing you down?

with the new enlightening of caleb's current problems...the cysts enlarging, the vertebrae being fused...we were told that as of right now, those issues are not causing enough problems to need to do anything about them.

except that...

if we see any "new" changes, then we need to rush him to the closest neurosurgeon.

what changes are we looking for?

headaches
bladder control problems
poor posture
a decrease in leg flexibility
stiffness in his neck

we were told he can't play contact sports. what about his tumbling class? we ask. well it should be fine but just make sure he doesn't fall on his head because the fused vertebrae could cause major complications.

so when he's potty-training, what if he starts having accidents? well, just watch closely that his accidents aren't becoming more frequent. how frequent is more frequent?

the list went on, because we wanted to do our research, to be knowledgeable.

but i realized i wasn't asking the right question. which is:

how do we not become overly paranoid, overly protective parents and let this kid just live a normal life??

i feel that we have walked on eggshells since the day this little fellow blessed our family. specialists say "don't let anyone hold him, don't pass him around" "don't let little kids get close to him" "protect him" "don't let him cry it out" and "don't push him too hard." it is a lot to worry about on top of being new parents. but we listen, we trust, we put boundaries on everything.

and feel that we are inhibiting him from loving life. and instead we are turning him into a very careful, cautious child. and we as parents are turning into stressed out basketcases.

then we get to the point where we feel we're going crazy, so we just pray and try to stay close to god so that we can just do what is best for us all. but i can't help it that a part of me wishes i was living in ignorance. would i be a more relaxed, fun mom if i didn't know about all of these little quirks he is dealing with?

could he be...with all of these things...just fine?

but what happens if i say that to myself and just let go of it all and then something happens because i wanted him to be a "normal" kid...and he really isn't?

it's enough to make an overanalyzer like myself go just about mad.

which should be another part of the caleb syndrome. "this syndrome will eventually drive your mother insane."

so we will continue on with life as normal. going day to day, praying hard and acting in faith. and that's really the best we can do, right?

how big is too big?? how small is too small??

(caleb at primary children's hospital for 3 days of testing & seizure-watching...notice the cute little shirt? we kept it as a souvenir.)

okay i think shellee & i were online at the same time b/c her comment just popped up in my inbox. and so i will answer the question...it's actually something that's been nagging at me for a couple of weeks now.

really the reason ben was concerned about me not "getting bigger" for those who don't know, is because with caleb i had a 2-vessel umbilical cord. which apparently happens in like 2% of all single births & like 7% with twins. so i was a pretty normal size until i was about 6-7 mos along and then my growing slowed--almost stopped. for some reason i had gone to two doctors who did the full measurement work-up at around 5 mos. who did not find it. i naively thought i was just lucky...and going to be small. (seriously, where was my brain?? i'm under 5' tall! you have nowhere to go but OUT when you are this height.)

(me 3 wks. before i had caleb)

it was only until caleb popped out at 4 1/2 lbs. being full-term & they actually saw the cord that it was confirmed. it is not genetic, i was told it's just a "freak thing" that happens. but the chances of having a stillborn baby go up to about 85%, so we were that much more grateful that caleb was tiny, but alive.

once the 2-vessel is supposed to be discovered (about 5 mos.), you have to go in for weekly check-ups to weigh the baby & they are usually taken via c-section the moment you are considered full-term (36-37 wks.) because the risk of the baby losing nutrients & starving in your uterus is so high. i did not do any of this because we did not know.

many 2-vessel babies have SEVERE problems when they come out. physical deformities, mental retardation, etc. caleb was not "normal" nor was he "easy" but his problems were miniscule compared to what they could have been. poor digestive system, seizures, inability to gain weight (did not get his mother's metabolism) and slow physical progression were basically what we dealt with. not to mention the CONSTANT crying for several months. he seemed to always be in pain.

(caleb's 1st out of 3 EEG tests)

we spent our first 18 mos. with him in & out of hospitals, working with several specialists, and a lot of physical therapy. but the older he has gotten, the better his health. plus we prayed every night in gratitude to our heavenly father that as far as neurologically, he was doing fantastic.

(ben helping caleb in his old-man walker)

sooooooo....back to the point. i popped out pretty early with this pregnancy, which made me think i was a little farther along than i really was. at my 1st (and only, so far) dr's visit, i asked the midwife what the chances of this being another high-risk pregnancy. she said one in a million. i saw the baby, saw him punch & kick the little ultrasound thing when she pushed down on him (good for him, she was pushing down HARD), and my fears settled down.

but since that time, i don't feel i'm getting much bigger. i had noticed, and ben noticed. i'm only a little over 4 mos. along and am hoping i'm just paranoid, but the next dr. visit should give us a better idea & hopefully all is well.

now i just need to silence the little nagging voice in the back of my head that something is wrong. positive thoughts, right?? right!