brace yourself

this couldn't come soon enough. especially after ryan's tripping incident.

today we went and picked up his brace for his foot. and call me old fashioned, but for some reason i always thought it would look something like this:

image from yourprops.com

but apparently times have changed since 1950. although my desire to yell run forrest, run! hasn't.

ahem.

about a month ago ryan got fitted for a brace. it was quite an interesting process: first the lady put a double sock and a yellow train track on his foot and leg, then they wrapped some kind of tape around his leg that would harden. after it set for a couple minutes, she used her train scissors, and cut along the train track. then she cut one of the socks off and removed the mold of his foot!


pretty darn cool if you ask me. then we got to pick out what color we'd like and what ribbon we wanted. of course we had to choose the sport one!


so today we went to try it on and try it out! ryan did great with it on. it didn't even seem to bother him. it's designed to keep his leg straight and centered, and keep his toes up. and it's already working—he played around with a ball and was running and didn't even trip once!! the therapist was impressed!

so today he'll wear it for 2 hours. tomorrow, 3 hours, and the following day, 4 hours. if he doesn't have problems (redness around the foot that doesn't go away after 30 minutes) then he'll wear it as much as possible every day. he'll be able wear it around the house with socks and outside with shoes.


the shoe that the brace goes in needs to be a size bigger, so my plans were to go shoe shopping with him today. but coincidentally, i happened to buy two pairs of the same shoes in different sizes over a year ago. and they worked perfectly! thankyouJesus i just saved $35-$40!

wrong foot, ryry!

ryan will continue to have physical therapy on his leg and foot through the end of this year, and then we'll take a break for about 4-6 months and see how he's doing. but we've already seen improvements and now the brace will help even more!

so brace yourself, world. pretty soon this little man will be unstoppable and untripable!!

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

i did NOT get ryan's EEG and MRI results on friday. and although i wanted to write an update that night, i was NOT incredibly confused by the diagnosis. so i have NOT been googling like mad this weekend. and after i read the first sentence of an article and was NOT totally perplexed by the terminology, i did NOT spend over 2 hours just reading about the brain and trying to understand basic stuff you'd probably learn in school.

i am NOT incredibly glad that i video recorded the appointment so that i could relisten to it at home. i did NOT just randomly hold the camera, so when i got home and watched it i did NOT enjoy watching the kids play during the appointment (and ryan sticking his tongue out at dr. h)!


i am NOT going to call the neurologist with some more questions today and hopefully get her email address in case i have more questions! then sometime i will NOT get an update for y'all!

* * * * *

in the process of making a cup of chai one early morning, i did NOT turn on the back burner for the tea kettle, all the while making sure the dirty plate (from the night before. not pictured.) on the front burner was far enough away. and then i did NOT smell something burning. maybe the dirty napkin fell off the plate onto the burner? and then i heard popping. as i went to see what was happening, i did NOT notice that i had in fact turned on the front burner, thus causing the food particles on said plate to burn. i did NOT grab the plate off of the burner, totally forgetting that it would be burning hot and almost drop it, and quickly set it on the cutting board that was on the other burner. it did NOT melt a ring on my cutting board.

for a cup of chai, it was totally NOT worth it!

* * * * *

we did NOT crack open the bags of 1-year-old halloween candy to see if they still tasted good. they were NOT still delicious. i did NOT double check their goodness. and we did NOT pass them out (along with our new candy) to the 100+ trick-or-treaters that came by. i do NOT think we should go buy some more clearance candy this week to save for next year...

ahem.

* * * * *

this morning i did NOT realize that i still have a love for sesame street. i did NOT pause my computer work to watch bert and ernie's great adventures...

* * * * *

as i'm sitting here on my laptop, ryan did NOT just bring me the broom and the stick vacuum. i am NOT gonna take a hint, get off the computer, and clean the house. well, maybe i'll clean after i go shopping...

happy monday everyone!!

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!

thankful thursday

if you read yesterday's post, i think today's thankful thursday should be rather obvious!

today i am extremely thankful for all of you, my dear friends and family, who lifted up ryan, ben, and myself in prayer yesterday. what an amazing experience it was to feel those prayers and see them answered!! i can't say thank you enough!

* * *

ben and i were able to take a little bit of video yesterday while ryan was getting the electrodes attached to his scalp. many of you have seen them on facebook, but i thought i'd post them here too, so that you could see a little bit of the process. and yes, that's max screaming. now see why i'm so thankful for your prayers?!





* * *

what are you thankful for today?!

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!

——————————

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!

——————————

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!

the results are in

and this year's best female video goes to...

ok. just kidding.

i heard from ryan's neurologist yesterday evening and she gave me the results from his MRI. we got a good report—better than what was originally suspected!

ryan did not have a stroke at birth, nor does he have a cyst on his brain. however the MRI did show an abnormality on one side of his brain. dr. h said that he has a developmental abnormality in which one side of his brain didn't develop all the way and is therefore behind. now i'm not sure if this is referring to his brain development when he was inside the womb or after he was born. if his brain didn't fully develop inside the womb i guess it kind of explains the "something" on his CT scan at birth.

this is something that may or may not be genetic. [insert erin is abnormal jokes here.] we could possibly get a blood test done on him and see a geneticist, but the only reason it would be recommended that we find out is the fact that our future kids may or may not have a similar problem. which would mean that if i got pregnant the doctors would probably want to do tests to see if there was anything wrong with my baby and to give me "options." sorry, but if we have more children, i'm not going to deny my child a chance at life because he or she may have a developmental abnormality!!!!

ok. thanks for letting me rant there!

back to ry: dr. h also told me that he's at a higher risk for seizures and if we notice any symptoms like staring or twitching that he'll need to be seen again and have an EEG. again, some unknowns—i don't know if he's at a higher risk because of his brain abnormality or because he's already had a febrile seizure.

there are some questions we don't and probably won't have the answers to—dr. h isn't sure how this will affect him in life. she doesn't know if the one side of his brain will always be developmentally behind or if, with therapy, he will be able to develop that side of his brain more and catch up.

with all that said typed, our plan of action is to get ryan into therapy to develop his motor skills on the right side of his body. he'll have physical and occupational therapy starting a week from thursday. from what we can tell right now, ryan's delays seem to be mainly with his motor skills. intellectually he's very smart. he talks up a two-year-old storm, loves to sing, knows his abc's, and can count to 10.

other than therapy, there is nothing else that needs to be done with him right now. if we so choose, we can have a follow up appointment with dr. h to go over the results and see the mri. but as for right now i don't think that will be necessary.

thank you all so much for your prayers! all your sweet and caring comments were greatly appreciated! now go celebrate the good results with some ice cream!

not me! monday

this week...

i did NOT almost put my foot in my mouth at ryan's mri appointment when i almost told one of the doctors that nurses are better than doctors!!

and speaking of his mri, i did NOT forget all about it this weekend and totally forget to call today to find out the results until ben phoned me to see if i heard anything! i am now NOT waiting patiently for dr. h to call me with the results.

we did NOT have a bug scare this weekend and have NOT taken precautionary measures and treated our cars and our house for, ahem, fleas... (that our car picked up somewhere else). my washing machine has NOT been running non-stop and my carpets have NOT ever been vacuumed this many times in one weekend!

because of the flea scare, we did NOT decide to royally clean out ben's work car. we did NOT fill over six garbage bags of trash and ben did NOT find something that he got from a job over a year ago!!

yesterday we were minus samantha, so we decided to try out a new to us hole-in-the-wall mexican restaurant. i did NOT have fajitas for the first time ever. (go ahead and judge, people.) they were NOT incredibly YUMM-Y! (why hasn't anyone ever told me how good they are?!) and we did NOT have the cutest little waiter. he did NOT remind me of a latino elmer fudd!

i cleaned out my pantry today (yea me!) and did NOT find a few items that were over 3 years expired. and i also did NOT find a sinful amount of cereal. and jello. any guesses as to how many boxes?!

you can find more not me! fun at mckmama's blog. happy monday!

happy happy

this is the face...


...of a boy—a happy boy...


...a happy boy who had a 6 hour nap!

———————————————————————

things went exceptionally well yesterday for ryan's MRI. he was only the slightest bit crabby due to no breakfast and no lunch. we got to the hospital at 12:30, got signed in and registered, and then ryan went to get his IV put in his hand for his sedation.

that went great too, considering we had to wait 40 minutes after he got the IV in for him to be put under. he wasn't very fond of the big "owie" in his hand, so he kept kissing it to try and make it better!

ryan finally went back for his MRI, which lasted about 50 minutes, and was just waking up when i got to his sedation recovery room afterwards. in the 5 minutes that he was awake, he made sure the nurse took his owie off of his hand, whined about the blood pressure cuff on his leg, refused anything to drink, and then zonked out in my arms.

when we got home i cuddled with my sleepy baby for a few minutes, then I put him in his crib where he was beyond conked out until I decided to wake him up at 7:30pm. as i was forwarned, he was quite tipsy from his sedation hangover when I got him up. he stumbled around the living room like a newborn foal trying to stand and even after a couple hours he still didn’t have his sea legs back. but that stand in the way of his appetite—he ate a good dinner and was ready for bed!

all in all it was a successful day. thank you all for your prayers—i will definitely post when i hear the results next week!

———————————————————————

what's that? you want to see some more happy happy pictures? why certainly...!

wordless wednesday and more

wordless wednesday (scroll down for the more!):



the more:

and now for the news on ryan. if you remember, a little over a week ago i blogged that we had a neurology appointment for ryan. the reason for this was that he is and has always been extremely left-sided. not only does he possess strength in his left side, but he lacks strength in the right side of his body. we always thought this was an outcome of swaddling him for 8 months (the neurologist assured me that it wasn't from swaddling) and that he would eventually gain gross and fine motor skills on the right side of his body.

remember when he started walking? did you watch the videos? he would drag his right leg when he started walking, and when he'd clap, he'd bring his left hand to his right hand instead of clapping with his right hand. he's always been physically delayed as far as sitting up, crawling, and of course walking. and since he's turned two and still can not pick up any given object with his right hand, we thought it was time to make sure everything was a-okay with him.

oh, and when he was born he was in the NICU for a week with breathing and apnea problems. he had a CT scan and the neonatologist told me that there was "something" on one side of his brain (yeah, i can't remember exactly what he said. i was a sleep deprived, hormonally whacked out mama.) but that it was probably nothing and he didn't think there was anything to be worried about. minor detail, right?!

we met with a neurologist, dr. h, about two weeks ago (sorry i didn't blog about this sooner. it's been a little crazy!). after assessing ryan and asking us gobs of questions, she came to the assumption that ryan may have had a stroke right before, during, or right after birth. hmmm... makes a little sense. there is also a possibility that he could have a cyst on his brain. and the only way to confirm that is with an MRI.

the good news is that dr. h doesn't seem too concerned about this since it hasn't progressively gotten worse—ryan's walking has improved tremendously and he can now pick up certain things with his right hand, although awkwardly. and if the results of the MRI conclude that he indeed had a stroke at birth, 98% of infants go unaffected later in life

tomorrow afternoon ryan will be having the MRI. since he'll have to be still for about 45 minutes, he will be sedated for it. so he cannot eat solid foods past 6:30am and cannot have liquids after 10:30am. please pray that tomorrow isn't too crazy for him. the boy loves his food!! and no breakfast and no lunch should make for a fun day

we won't get results for a few days, but i will try to update via twitter tomorrow.

and since it's late and i'm tired and my creative juices are not flowing and i don't really know how to wrap this post up, how about another gander at my little ry! and yes, that is a princess pull-up!

scpm

hopefully i'll be back to some normal blogging soon. but for now, here's a quick run down of the week:

monday: tacos. last time i blogged.

tuesday: busy. sad.

wednesday: bad day. couldn't even blog it was so bad. samantha's first night of awana.

thursday: almost as bad as wednesday.

friday: ryan's neurology appointment. will blog about that later. coupon party. will also blog about that later!

saturday: shopping. with coupons. cookie dough twisted frosty at wendy's. yum!

if you'd like to participate in saturday cell phone mosaic, go visit ace's blog!

carpe diem...

...seizure the day.

apparently that's how ryan interpreted it. because today he decided to scare the living daylights out of us and have a seizure.

he had a slight fever this afternoon, probably due to cutting new teeth. so i put him down for his nap and when he got up later he was still pretty warm. after we read a few books i had to take a potty break so i sat him in a chair and let him watch tv. when i came back in the living room he had his head way back and was staring up at the ceiling so i said "whatcha doin' ryan?" when he didn't move his head to look at me i said again, "ryan... ryan... RYAN!!" it was then that i noticed his whole upper body spasming and convulsing. i picked him up, made sure he wasn't choking on his teddy grahams, and yelled at samantha to get daddy.

samantha lost it. she started bawling.

i freaked out. told ben "something's wrong with him!!! we need to go to the hospital!!!"

ben stayed calm. bless his heart he stayed calm! he took ryan and laid him on the floor and told me to call 911.

"911--all circuits are busy. DO NOT HANG UP THE PHONE. stay on the phone. all circuits are busy. DO NOT HANG UP THE PHONE." seriously?!

ryan's eyes were open, but he wouldn't look at us or respond to anything we did. so then ben said we needed to go to the hospital... but i couldn't hang up the phone! just then the operator came on and transferred me to someone who asked me what was all happening. he sent the paramedics and they arrived in a timely manner. lights and sirens and everything. it was almost a little embarrassing!

by the time they got here ryan had stopped seizing. only he was really dazed and almost in a trance. they checked him (and his awesome hair) out and i told them all of the symptoms and they agreed that he had a febrile seizure, or fever seizure. these are common in children--1 in 25 children has had one. way to be in the 4% ryan! they offered to take him to the hospital if we wanted, but didn't seem like it was too urgent. after discussing our options with them, we decided to stay home and watch ryan closely for the rest of the night. they said it takes about 30 minutes after a person has a seizure to get back to normal because of brain overload. they waited until ryan was a little more like himself, then they left us with some nicely written instructions.

and ryan recouped with sissy (who was now watching him VERY closely for us!) while ben and i breathed!

he was back to his normal 97.7 degree self tonight. we went outside and he had fun swinging and playing with the ball. and he also figured out how to get away with only have cheetos and yogurt and NOT his jelly sandwich for dinner--have a seizure and make mommy feel sorry for you!

hey, what can i say? it's also a good excuse for mommy to have some chocolate and ice cream!

the eyes have it

today samantha had her yearly eye exam. which, when i say yearly, i mean third. she was born with minute cataracts in both eyes (which the opthemologist couldn't see until i showed him), so we had them checked out when she was a couple months old. he said they would most likely never affect her vision, but to have her checked every year. we didn't go back until last year when she was 4 and a half!

at our last visit to the pediatrician they said she was a little farsighted, so today we had that checked out along with her cataracts.

her appointement went well, except for the part where she had to have her eyes dilated. she didn't like the eye drops very well, which you can see from the picture! but she read all the letters great and her vision is just fine! her cataracts have not changed at all and will probably never be a problem for her. and her farsightedness is normal for a child her age. YEA!

samantha had to wear these lovely glasses for a 3-d test so i couldn't resist this great photo opportunity and a totally blog-worthy picture. especially after i took the picture and samantha said, "mom, please don't put that on your blog!"

sorry sweetie, i had to! :-)

thankful thursday

on monday i took ryan to children's mercy to get his hips x-rayed, as requested by his doctor on our last visit. because he's not walking yet, she wanted to make sure he doesn't have hip dysplasia, which is a deformation or misalignment of the hip joint.

thankfully i was able to walk into the clinic and get it done without having an appointment. unfortunately, i went right during his nap time. so needless to say he wasn't very happy with me or the technician who was getting him all lined up correctly on the table. after about 3 minutes the x-rays were done, then it was down the hall to get his blood drawn to check his lead levels. i figured we might as well kill two birds with one stone* if he wasn't gonna be happy anyway!

he disliked the phlebotomist even more than the radiologist. (and yes, i knew what a phlebotomist was and didn't have to look it up!) i had to bear hug ryan so he wouldn't squirm when she was drawing his blood, and boy was he strong! it didn't take too long, but by the time she got done ryan had been crying so hard that he was having little crying spasms. you know the kind - when you've been crying so long and so hard that you can't stop? and then when you've almost stopped crying it all starts up again?! so the lady reached out in the hall, grabbed something and shoved it into my hand and said "here, he can take this home."

i waited until i got to the car to check out what this something was. it was scary and cute all at the same time, and i definitely knew it was blog-worthy! i can just picture a little old lady making this or some school kids sewing these in home-ec for the sick little kids that practically live at children's mercy hospital.

anyway, today i am thankful for the call i got today about ryan's x-rays - his hips are normal - yea! i'm thankful that he won't have to have any therapy, and i'm thankful that our trips to children's mercy usually aren't bad enough to receive an amish smurf-like gingerbread boy-looking doll!

what are you thankful for today?!


*no birds were harmed in the making of this post. :-)

tuesday tip

your mom may have told you, your doctor most likely told you, and now i'm gonna tell you my tuesday tip:

don't use a q-tip to clean out your ears.

or your daughter's ears.

i had done this since samantha was little. after her bath i'd gently twist the q-tip in her ear to get out the "sunshine" in her ears, or earwax. :-) well last year when i took her to the doctor for her 4 year well check they said she had a big buildup of earwax and instructed me not to use a q-tip because that compacts the earwax in your ear.

so i haven't. but in one year no earwax came out.

until a couple weeks ago. one day before the kids' appointments, the light hit samantha's ear just right and i could see something in it. so i got the flashlight and started looking in her ear. it looked like her whole ear was plugged with earwax. so i got a toothpic (probably not a good idea) and tweezers (again, i should have probably left this to the experts) and tried to start moving it around. i got a few pieces out, then ben insisted that i just let the doctor look at it in the morning.

when the nurse looked at it the next day she said they'd have to flush her ears out. then dr. o, you know, the doctor who isn't our doctor that i liked better, dug around in her ear with what looked like some kind of crochet hook and pulled out a big piece. he was even a little grossed out.

dr. b decided not to flush it out, but to just have me put mineral oil drops in it every night to soften it up. hey... did you know that the ear naturally pushes out the ear wax that it doesn't need? all those little hairs move it along the ear canal to the outer ear.

anyway, i put drops in her ears every day in addition to toothpicking her ear! (man, i wish i could've seen how idiotic i looked. ben has this flashlight thingy that fits over your head with elastic. it's like a miner's light. so i'd wear the hands-free light to see into her ear while prodding around with the toothpic.) then finally one day i was able to stick the tweezers in her ear and grasp a gigantic chunk of sunshine. and then an even bigger piece after that!!! fast forward about three days and i was able to do that to the other ear. gross and facinating all at the same time!

so because three of you wanted to see the picture, and because no one objected, here it is.

CAUTION!!

close the window

if you get

grossed out

easily!

see the lighter half of the huge chunk? i got three of those out of each ear before the huge chunk came out. and the dark part? it totally plugged up her entire ear canal. in both ears.

legal disclaimer: consult your physician before starting any exercise program sticking toothpicks and tweezers in anyone's ear. (unless, of course, you have a steady hand and a still child!)

thankful thursday updated

i forgot to say that ryan has to get a hip x-ray. since he's still not walking dr. b wants to make sure that he doesn't have developmental dysplasia of the hip. and also, on top of her cataracts, samantha is developing far sightedness so hopefully she doesn't have to get glasses!

thankful thursday

today i am thankful for God-things, or God-incidences, or whatever you may call them. basically, i'm thankful for that feeling you get after experiencing something like that. you just kind of sit back in awe and say, "thank you God! i totally didn't expect that, but how cool that You did that just for me!"

i had a God-incident today. but first, the story behind the story... (*spoiler allert: stop reading if you don't like poop stories!*)

one year ago, january 2008, ryan somehow developed a bad case of constipation. he was 6 months old and out of the blue this happened. i hadn't started him on any solid foods yet, but he was a bottle baby and the formula sure didn't help with this. so the first time he went to his doctor, dr. b (who i really like, by the way), she told me to start giving him pear juice and that should help.

well it didn't help and three months later i went back and told her he was still having problems. she didn't want to give him any medications if it weren't necessary, which i was grateful for. so i still tried to tweak his diet to help his bowel movements. this still didn't help so we went to the doctor three months later. "well hopefully since he's starting to crawl around and move a little bit more that will help his bowels get going," she said. again, no help.

the last two times i've taken him to the doctor i've gotten really frustrated with her. she keeps saying that she wants to change it with his diet and keeps asking "have you tried giving him any pear juice?"

YESSS! you told me to do that 9 months ago and it STILL ISN'T HELPING!!!!!!!!

actually, the last time i took him in i got really mad. i asked her if i could switch him to 2% milk to see if that would help with his constipation. and her reply was, "no, he really needs the fat from the whole milk until he's two. why? does he have little bouts of constipation every now and then?"

AAAAAAHHHHHHHHHHHH!!!!!!!!!!! don't you people write this stuff down in their charts?!?! and YES I'VE GIVEN HIM PEAR JUICE!!!!

yes, she really did ask if i had tried giving him juice. come on lady, this is the 4th time i've talked to you about it. write it down. i'm not a first time mom, i know this isn't normal.

so now on to the God-incident story...

both of the kids had their well checkups today. and i had already decided that if ryan didn't get any help or if anything didn't change today that i was going to find another doctor. i had already called a pediatric GI (from children's mercy hospital) to make sure they take our insurance and to see if i need a referral. and i had my mind made up that our pediatrician was going to have to earn her right to remain our doctor. bottom line, give me some answers, and get ryan some help, or we're outta here!!

after the nurse checked the kids' weight and height and asked all her questions that needed to be asked, a 30-something year old doctor, dr. o, came in the room and told me that he was a doctor from CHILDREN'S MERCY HOSPITAL and that every couple months they go to different offices to see how things are going, etc. so he checked out both the kids (and i have to add that he was waaaaayyyyyy more thorough) and asked if there were any other problems or concerns. so i told him that ryan's had chronic constipation and that i wanted to get a referral for a GI and that he's had it for a year and that i've tried to fix it with his diet and that hasn't helped. so then he actually asked me what his diet was like (dr. b never asked that) and then he asked me what his bowel movements were like (dr. b never asked that either. she'd only ask if i'd given him pear juice! lol). and to tell you all the truth, he screams bloody murder almost every time he poops. his poop is hard like dried clay, it's usually the size of a silver dollar, and it usually has blood in it. he can't even poop on his own. we always have to take his diaper off so that there's a place for his poop to go. after all, it can't smash into his diaper... and we always have to hold his legs to help him push. this is definitely not normal.

so dr. o asked me if i had tried miralax and he told me that the GIs at children's mercy would start him out on miralax to clean him out and that i should try that first and save a trip! so later when dr. b came in she examined the kids also and might i add that both doctors were floored by how smart samantha was. and how stinkin' cute she was. she was actually answering all the questions that they asked me about her. "nope, no fever or colds or anything this week!" she said. =)

but anyway, when dr. b was done checking out ryan dr. o said that i also had a concern about constipation. and dr. b looked from ryan to samantha and asked, "for which one?" lol. i don't expect her to remember everything, but seriously. look in the chart once in a while! that is, if you wrote it in the chart! so i told her again that the diet hasn't helped and she also recommended miralax since he's a little bit older now. she explained to me what to do and i asked her what we'd do if for some reason this doesn't help after a couple weeks and she told me to call her right away and we'd pursue it more. well THANK YOU for finally doing something about this!

so the kids had a good checkup (and dr. b avoided the wrath of erin!). samantha weighs 35 lbs and is 42 inches tall. she's finally moved out of the 10th percentile for her height and weight!! and ryan weighs 25 lbs (50th percentile), but i'm not sure how long he is. he's grown though... he moved from the 75th to the 90th percentile for his height!

as we were walking out of the building i couldn't get over how awesome it was that God had put dr. o there today. and that he was from children's mercy and he knew what the GI there would do. ryan actually had an appointment last wednesday, january 28th, but at the last minute i changed it to today so that i could bring samantha at the same time.

no coincidences here! ...thank you God!

what are you thankful for today?