ryan 101

get comfortable and grab a drink—this may take a while! and pay attention because there's a test at the end.

just kidding! maybe...


last friday (oct 30th) i met with dr. h, ryan's neurologist, to go over the results of his MRI and EEG that he's had in the last 2 months. i was SO incredibly glad i recorded the appointment, because with big long medical words and an iranian accent (yes, i decided she is from iran, not india), i wouldn't have remembered one single thing!

i spent the weekend googling. and diagnosing. and writing down questions for dr. h. and after talking with her on the phone yesterday, i finally have some information about ryan.


here's what she said at our appointment:

from the MRI, both sides of ryan's brain are abnormal in different ways. the right side of the brain is abnormally larger than the left side. this is a rare condition called hemimegalencephly which can result in intrackable frequent seizures and also mental retardation.

ryan also has abnormalities on the left side of his brian. he has clefts, or slits in his cerebral cortex (the outermost layer of the cerebrum. you know, the ripply, wormy looking part of the brain.) due to migration defects or abnormal migration.

are you totally confused? yeah, so was i! as a brain develops inside a mother's womb, neurons in the ventricals of the brain migrate to the surface to form the different layers of the brain. and when problems occur with these migrating neurons, you end up with migration defects. (click on the link for some nice light reading. hehe!)

as for his EEG, the results showed slowing on both sides of his brain (meaning the rhythm of the brain waves is slower than would be expected). it also showed sharp waves (which indicate that partial seizures might come from that area) coming from both sides of the brian, but more from the left than the right.

now with ryan, dr. h is quite perplexed. with hemimegalencephaly (the abnormal enlargement on the right side of ryan's brain) it is common that there are abnormalities on the other side of the brain (which in ryan's case, there are) but usually the main symptoms come from the bigger side of the brain (the side with hemimegalencephly).

the confusing part is that ryan's main symptoms (weakness and delays in the right side of his body) are coming from the other side of the brain (the left side with migration defects). dr. h said this is unusual and was puzzling for her because after looking it up in medical literature, she couldn't find a similar report. she said she didn't really know how to explain that.

for what ryan's MRI showed, he is doing exceptionally well as compared to other kids with the same MRI results. he is not having frequent seizures (so far) and his delays are mainly physical (gross motor and fine motor skills) and not mental. as far as a prognosis goes, dr. h said we'll just have to go by what he shows us. most kids with the same diagnosis are not doing well.


soooooooo now that i've told you about the appointment, here's the update since talking with her on the phone yesterday! (hey, i warned you this would take a while!)

first of all, ryan had a seizure on thursday night (yeah, i forgot to give him his meds). it was different than his other seizures have been, but it started with his right hand shaking. this is good to know because it means that the seizure started on the left side of the brain (the side with migration defects).

secondly, in my googling and diagnosing, i came to the conclusion that ryan has schizencephaly on the left side of his brain (the side with migration defects), which is a rare developmental disorder characterized by abnormal slits, or clefts, in the cerebral hemispheres.

Symptoms can vary widely depending on the extent and the size of the cleft. Patients may show developmental delays that can range from mild to severe.... Paralysis of the limbs may be present... Abnormal muscle tone, including decreased tone (hypotonia) and increased tone (spasticity), can be seen. Some patients may have only seizures. Seizures usually present before three years of age.

thank you, answers.com!

when i talked to dr. h, she told me that the left side of his brain is causing more trouble right now. so he may not have hemimegalencephaly (abnormal enlargement) on the right side of his brain. the radiologist diagnosed it as that, and that's what it looks like, but it just doesn't make sense, medically. the neurologist and radiologists have a conference each month so she's going to discuss all of this with them to try and figure out if indeed he has hemimegalencephaly.

she also said that it looks like he has schizencephaly on the left side of his brain. ah hah, i was right! there just may be hope for me becoming a neurologist yet! she also said it could be polymicrogyria, but i won't bore you with the facts of that.

our game plan right now is to see an opthamologist (hemimegalencephly can have some findings in the eyes. this could help diagnose which type of hemimegalencephaly he has). he will also see a rehab doctor (because of his right-sided delays) and a speech therapist (just for an evaluation). we will continue doing therapy once a week (i'll update you on that later!) and continue on the anti-epileptic drugs. and if all goes well we won't have to see dr. h for another six months!

bottom line, God made no mistakes when he formed ryan's little large brain. ryan has a few slight problems, but we are blessed that his health is SO well!


and now for your test: if you made it to the end of this post, A+!

not me! monday

last monday i did NOT spend the whole day cleaning for family that was going to come for a visit, only to take a break to go to the grocery store. i did NOT end up coming home with 23 bags of groceries!! and in the 3.5 days that my family visited, we only ate here twice. uh huh... i do NOT have a lot of food in my house!

this past week i did NOT have a blast with my parents and my three nieces (9, 7, & 4 years old) who came for a visit. we had only a couple mishaps while they were here... it was very warm the second night they were here, so i did NOT decide to prop the front door open to cool off the house. we got the girls to bed, dealt with some homesickness, and then got the girls settled in bed again. we were sitting around chatting when i did NOT hear screaming from their room. i bolted upstairs and as i was running down the hall a black cat did NOT come running out of their room and out the front door!!! nope, a stray cat did NOT come in our open front door, go up to the kid's room, and scare the panties off 3 almost asleep overly tired little girls. needless to say, the door stayed closed from then on...

while my family was here ryan slept in our room with us. so he would NOT wake up when ben got up for work. since then his sleep habits have been way off. instead of getting up at 9-9:30, this morning he did NOT wake up before 8am. i am NOT dreading the time change this saturday and having him wake up before 7AM!!! (here is your friendly reminder... daylight savings time ends on sunday, november 1st. don't forget to set your clocks back one our this coming saturday night!)

i have NOT forgotten to give ryan his medicine about 4 nights this week. ugh. i will NOT have to start writing notes as a reminder. and speaking of ry, his neurologist did NOT fail to call me this past week, or the week before with the results from his EEG. and because i don't enjoy calling them and leaving a message for them to call me back, i did NOT decide that i'm just going to wait until his appointment this week to find out the results. besides, dr. h has an accent and i'm NOT afraid that i won't understand her over the phone! so for those of you who have been waiting for results, i will NOT get them at his neuro appointment on friday!

on saturday night we (yes. the whole family. ben included.) did NOT go to joann fabrics to get a couple things. (we were NOT there until closing time!) after we finally left the store, walked to our car, and unloaded our purchases i did NOT decide that i would give the cart a shove toward the store and let it roll there so i didn't have to push it back. well maybe it was the slight breeze, or maybe it was the downward slope of the parking lot, but the cart started going straight towards the store and then did NOT veer way to the left (right in the picture) and was headed right for one of the 5 cars in the parking lot. ben did NOT see what was happening and did NOT sprint over to the cart just to grab it right before it plowed into the side of the lady's car. the lady that was NOT just walking out of the store... i was NOT laughing my head off at what happened, and i'm sure the people that were sitting in their idling car did NOT get a good laugh either! and no, i did NOT draw a picture again just to better explain it...!

happy monday y'all. go visit mckmama for some more not me! monday fun!

not me! monday

happy not me! monday. not only can we admit our imperfections without guilt, but this month there's also a chance to WIN! check out mckmama's blog to play along or for some hillarious reading material!

this week...

i did NOT take ryan to scary target the night before his EEG. i did NOT buy him $50 worth of toys to play with. and i certainly did NOT make him leave them in the boxes so that we can take them back...!

i did NOT clean the majority of my house on thursday (and it looked great!!), just to have my husband bring stuff home from the auction on friday. there is NOT a little path through my living room again.

in an effort to get out the door to make to church in time, i did NOT totally dump half of my mug of chai on my pop tart. and because breakfast is the most important meal of the day, i did NOT still eat it. and although i would never recommend a soggy pop tart, i am NOT trying to figure out how to make chai flavored pop tarts. because YUMM!!!

today i did NOT check the mail about four times and was NOT surprised to find nothing. on my fifth attempt to check the mail i did NOT remember that it is a holiday today. my retired mailman father is NOT laughing as he is reading this!!

i did NOT almost forget to call about ryan's EEG results today. the nurse told me that dr. h wasn't in today, so if she didn't call me this afternoon that she'd call me next week. hmmm.. (i wonder if she thinks it's friday?!) so our results are NOT that we have to wait for the results! i'll let you know when and what i find out!

ryan did NOT accidentally hit the enter button and post this before i was done. i am NOT scrambling to fix it before any of you see it!

happy columbus day monday!

priceless.

elmo live: $60



fur real duck: $13



bubbles: $2

many prayers on ryan's behalf to stay awake and happy this morning: priceless.

and i really do mean priceless. because after only 4 hours of sleep NO toddler should be this happy!

ok, so the elmo live was on clearance for $30 and it is going back...! i thought i'd prepare for what would seem like a long night and morning with ryan and buy him some returnable new toys to play with. but in all reality, i don't really think i needed them. after a few tired tears this morning (from ryan, not me!) we managed to breeze through the morning with some cartoons, toys, a bath, and breakfast.

then we were out the door on our way to the children's hospital. ryan stayed awake the whole way there (at the exact time a few of you were praying. coincidence?? idon'tthinkso.nope!!) and was pretty much rearing to go.

when we got there we chatted with a mom who's little boy (let's call him max), a little younger than ryan, was also going to have an EEG. she had an awful time keeping him up until midnight and waking him up at 4. it sounded like they had a total opposite morning than what we had.

ryan got called back very quickly for his EEG at the same time max did. amy, the technician, asked a few questions about ryan and then we got started. first she had to take a lot of measurements of his head and then she marked on his head with a red marker where each electrode would be placed. after that she had to clean each spot with a toothpaste-type gel.

then it was time to attach each electrode. amy placed one on his scalp, put a piece of gauze over it, then brushed some smelly let's-get-high glue on the gauze. then she used very cold air to quickly dry the glue. the whole time we could hear max in the next room crying and crying. so i was relieved that ryan was exceptionally good during this process. he was busy playing with daddy's phone, and every now and then he'd say "owie." and after each electrode got attached he'd say "thank you!"

after amy got all 28 electrodes attached, she wrapped gauze around ryan's head and then it was time for him to fall asleep. i sat by his bed, prayed that he would quickly fall asleep, and watched his brain waves on the computer. he fell asleep very easily. again, three people (that i know of) were specifically praying at that moment!! awesome!

he slept for about 15 minutes and then amy woke him up. she put a strobe light about 12 inches above his head and did about 8 different tests with it. ryan loved it. i could tell he's had his picture taken plenty of times because he kept saying "cheeeeeessseeee!!!!!!" and each time she'd turn it off he'd say "all gone?! more??" after a couple more breathing tests it was time to take off the electrodes. amy used something that smelled like nail polish remover so we had to cover his eyes with a towel. this was actually the hardest part for ryan. he did NOT want to play peek-a-boo!

she combed some of the glue out of his hair (he has quite a bit of glue left in his hair and he'll be flaky for a few days. but it's all good—ryan loves taking baths) and then took him to get a treat. he got goldfish, elmo stickers, and a bugs bunny blanket! all in all it was a fantastic morning. on our car ride home i was thinking about poor max. we heard him cry so much before and after his EEG. which made me realize how much prayer can make a difference and made me appreciate all your prayers so much more. because without them i'm sure it would've been possible to have a bad experience like max did. so thank you!

we have to wait three business days to get the results. ryan didn't have any seizures that i know of during the procedure. although there were some very funky looking brain waves at one point while he was sleeping that she kept looking back over. but i obviously don't know how to translate anything that i saw on the computer, so i'm gonna leave the worrying up to God and just pray for answers!


thanks again for all the prayers—i'll hopefully post about the results early next week!

T minus 4

it's T minus about 4 hours here.

in a few short minutes, ryan will finally get to go to bed, and i'll be right behind him! he has his EEG in the morning, and for this test he needs to be sleep deprived. so we have to keep him up until midnight tonight (which has so far been a breeze!), and then at 4am we have to wake him up and keep him awake until his appointment at 7:30am tomorrow morning.

if you're still awake and are so inclined, or if you're awake at 4am (why on earth would anyone in their right mind get up that early though?!), please say a little prayer for us that we'll have a good early morning with ryan and that we'll be able to keep him awake! i have some tricks up my sleeve to hopefully help in this endeavor (including a $60 elmo toy that was bought tonight with all intentions of returning it after we play with it tomorrow morning!!) so hopefully all will go well!

thanks a million!

all righty

it has been a do nothing, medicine taking, soup eating, nose-blowing, nap taking, vitamin C chewing, sick week for us. ryan and samantha both had the coughs and sniffles on monday, samantha had a high fever for three days, ben and i have been trying to fight it off, and now we (ben, sam, and i) all have bad head colds. ryan has been fine since monday—i've been praying the crud away from him—and samantha was pretty much back to her normal self today. hopefully this will be the extent of our sickness this winter....

oh, who am i kidding?! now starts the continuous need for puffs plus lotion tissues!

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last thursday ryan had his first therapy session to help improve his motor skills on the right side of his body. he's doing both physical and occupational therapy. the general difference between the two is that occupational therapy(ot) works with the body from the waist up, while physical therapy(pt) works with the body from the waist down.

our first appointment was more of an assessment for ryan. i talked with both therapists about ryan's weaknesses in his right side and they played a few 'games' to see what they had to work with. they said he has a lot of potential, so hopefully our weekly therapy visits will pay off!

yesterday ryan had his second appointment. amy, who will be working with ryan's arm and hand, said that he has good movement in his hand and she was encouraged that he could actually open it. amy taped ryan's good hand so that he would be forced to use "righty." and she sent two rolls of tape home with us so that we can do therapy at home with him as well.

andrea, the physical therapist, told me that ryan has good range of motion in his right leg and foot. but he needs to build strength and muscle. and to help with that, next week we'll look into getting a brace for his right leg/foot or, as ryan also calls it, "righty."

we're all righty around here now. show me righty, get it with righty, use righty, and so on. it definitely would've been easier if we would've started this a long time ago. but thankfully we're finally on the right track!

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in other news, ryan's EEG got way bumped up from november 18th to october 7th—this coming wednesday. he needs to be sleep deprived for this test, so the night before—tuesday night—we have to keep him up until midnight. then we (me AND ben) have to wake him up at 4am and keep him awake until his appointment at 7:30am. he'll have about 22 electrodes glued to his scalp (no, they don't have to shave his head) and then he'll have to fall asleep for 10-15 minutes, then they'll wake him up and do some tests to try to figure out what has triggered his seizures. this will take about 2 hours, and then we'll come home and SLEEP!

i've had trouble with how i should pray about this. i don't know if i should pray that ryan will have a seizure while he has the test, or if i should pray for normal EEG results, or what. so i'm just praying for answers. i know y'all will be praying for answers along side me, and i will definitely remind you to pray, but please also pray that we'll all stay awake on wednesday morning and that ryan won't be too crabby!

ok, i'll be honest here. please pray that i won't be too crabby either!!

scary target

remember how ryan doesn't like going to target? and that he cries and cries when we go by the scaries, or in other words, halloween stuff? well that little bugger is so smart that he figured out a way to avoid it—have a seizure.

last night after i dropped samantha and her friend off at church for awana, i decided to head over to target to grab a couple non-essential items. ryan and i got as far as the greeting cards. i was looking through the cards for a couple minutes and finally successfully picked one out.

*side note: i should SO make greeting cards. i'm sure i could come up with some better stuff than what was there. and even if i couldn't come up with anything, did you know that there was a blank cheap looking card there for over $3?! ridiculous...

anyway, i picked out the card, turned around to put it in the cart and ryan was seizing. his back was arched, his head was tilted way back with his eyes rolled back, and his arms were twitching. i grabbed my phone to check the time, tried to snap him out of it, then decided to jet outta there.
there was some humor to this, too, because i had to decide if i'd push him out in the cart or just grab him and run. i didn't want to carry my suitcase of a purse, and i had a mcdonalds bag in the cart too. so i ditched the card that i was intending to purchase and headed for the doors. but when i got to the door i realized that the envelope was still in there. i was looking around trying to figure out what to do with it and where to put it, and i finally just put it in another cart that was by the door. looking back i should've just shoplifted the envelope and then bought the card today.

anyway, i pushed him in the cart out to the car, called ben (who, thank God, reminded me that children's mercy urgent care was about 5 blocks away), and drove over there all the while watching ryan in the rear view mirror to make sure he was doing all right and to see if he was still seizing. by the time i got there, his seizure had stopped (it lasted about 2.5 minutes) and he had thrown up on himself. i ran into the clinic and they brought him back to a room right away because, as i later found out, the nurse said he was a little blue when i brought him in.


i laid him on the bed and as they took all his vitals (his temp was 99.5—they said this was not a febrile seizure like we suspected his first one to be.) he started responding to me a little bit. i was telling the nurse who was triaging him about his history and his recent MRI, and then i stopped mid-sentence. ryan started shaking, like he was shivering all over, and he wouldn't respond to me or make eye contact anymore. they called the doctor in. that seizure lasted a minute. he came back fairly quick after that seizure and from then on he was fine the rest of the night.


the doctor that was there called the neurologist that was on call that night. he prescribed keppra, and antiepileptic drug, for ryan to start on (if a person has 2 non-febrile seizures, they're pretty much considered epileptic). we also got a drug called diastat to carry with us, which will stop longer seizures FAST if needed.


we were discharged about an hour and a half after we had gotten there and man was ryan happy to go home! after i put him to bed i was all out of sorts. i was confused at what i should do with his meds, overwhelmed by all the "stuff" i needed to educate myself on, overloaded with questions in my head, tired, and totally chocolate deficient. thankfully i was able to go to bed with my mind at ease a little bit. i feel so incredibly blessed by my two friends (who have epileptic children of their own) who were able to encourage me and answer some of my questions. thank you nicole and cheryl!

this morning i took ryan to his first therapy session, which went great! i am going to save that for another post though. you're welcome. and then we went back to the scene of the crime so i could get that card that i picked out at target last night. and as nerve-wracking as that was, you have to get right back on the horse after you fall off, right?! thankfully, ryan didn't have any seizures, and he didn't even cry when we walked by the scaries!

this afternoon i was busy on the phone talking with dr. h, ryan's neurologist at children's mercy hospital here in kansas city and lynn, dr. h's nurse. i got a LOT of information and some questions answered. dr. h told me that she wasn't surprised to hear that ryan had more seizures. she said that with the findings on his MRI, you would expect seizures and she was actually surprised that he had only had one before. we will start ryan on his medication to hopefully prevent him from having any more seizures right now, and we have an EEG tentatively scheduled for late november, although lynn said that it will most likely be bumped up to october or early november.

after all my phone calls today my mouth hurt from talking (not the first time that has happened! haha!) and my head hurt from listening. i had an i-need-to-cry headache. i took a spoon and ate a couple bites right out of the chocolate french silk ice cream carton. i gave samantha a crash course in what to do in case of a seizure. and i cried. samantha asked me what was wrong and i told her i was sad about ryan. and the wise 6-year-old that she is answered me with "mom, he'll be fine. he was fine the first time he had a seizure. and besides, we'll all be healed someday. from Jesus." ohhh, what a blessing she is!

thank you all for your prayers and concerns and encouragement that you offered last night—it means so much to all of us! and also, if you made it to the end of this post, congratulations! i will try not to be as talkative (or would that be typative?) next time!