~two year anniversary~

we are approaching the two year anniversary of jameson's weaning from seizure medication. he's been OFF meds for TWO years! he's been completely seizure free for FOUR years. those words are so, so wonderful to type.

i remember very clearly the first few times i saw him seize. i thought they were shudders. i thought he was "cold" or had the heebie jeebies. but then, the more i watched them occur, i knew they weren't right. i knew something was up. we took jameson to his pediatrician. he didn't have an "episode" while we were in her office that time. so, she didn't see one. she thought it was just "something kids do". "kids this age explore what their bodies do...he's doing it intentionally." that made sense...but my instincts said differently. i tried to ignore them. {note to other parents - never do that...never ignore your instincts.}

CLICK HERE

this video is a bit out of order for this post...it was taken on 9-22-2006. toward the end, you can see what his seizures looked like. this is the only one we ever caught on video. (watch closely when jim says, "tell me where mommy is again") oh, and i had totally forgotten how cute he was when he tried to say "truck" and made that noise instead.

we went up north that year (2006) for the 4th of july week/weekend. he was 15 months old. i was 6 months pregnant with natalia. (yes, i know...you're all doing the math. save yourself ... they're 18 months apart.) :) my mom was with us and had the opportunity to consistently observe him for a few days. she recommended we take him in - she thought they were petit mal seizures. (she was close.)

this was taken while "up north" - 2006

a few days after we arrived home, we went BACK to his ped. this time he had one episode ... she barely caught it. and, i can't blame her. these "episodes" were VERY quick. jameson never had any reaction to them...no tears, no stopping, no sounds. just a quick (less than a couple seconds) shudder and flutter of his eyes. if you weren't looking him in the face, they were VERY easy to miss. but, he was having loads of them every day. again, his ped thought they were nothing. "i'll refer you to children's for an EEG just to ease your minds." this was the end of july.

we went to children's hospital in milwaukee on august 28th, 2006 for his first EEG. anyone who has had to put their toddler through one of those knows that they are not. fun. there are definitely worse tests (as we'd soon find out). in order to effectively test for seizure activity, the test needs to be conducted first while the child is awake, then while they're falling asleep, then asleep, then while they're waking. they require that you "sleep deprive" them before bringing them in. joy. have you ever purposely withheld sleep from a 17 month old? erg.

he really did wonderfully for the test. he's pretty patient while they stick a gazillion electrodes (soon to be known as "buttons") to his head. he falls asleep. we watched the monitor with the technician. we watched as the line jumps all over the place. it looked like a 6 on the richter scale. of course, we had zero idea how to read these things. the technician left the room and returned to tell us there were "irregularities" occuring and that we'd need to come back in a couple days to speak to the neurologist. "sorry, that's all i can tell you."

we made an appointment to return 2 days later. we meet dr. sunila o'connor - pediatric neurologist on august 30th, 2006.

(in amongst this, i was dead-sick. i'd caught a run of the mill cold on august 3rd...yes, i remember the date. 4 weeks later, i'm still sick - sicker. i had a horrible cough. my sinuses were SO plugged that i lost hearing in one ear. i hadn't been able to hear anything from my right side in 3 weeks. so, to give you a picture of my mental state on this day: i am 8 months pregnant, i have been sick for 3 weeks, i can't hear, AND my 17 month old baby boy suddenly "has a neurologist". needless to say, i'm a basket case.)

she checked him over, covered the results of his EEG and told us "he's having myoclonic seizures". the rest of our conversation with her is a blur. but, she's very kind and we come out of our discussion with her feeling as good as we can about the situation. after that, we were instructed to get a urine sample from him (again, erg!) and were sent to the lab for blood draws. i distinctly remember the very first time he was poked for blood. he didn't whimper. he didn't flinch. he just looked at me with those eyes. i died a little that day. it took another week to finally get a good urine sample. we needed to do all of this to rule out metabolic causes of the seizures as well as to get the current levels of his liver. the medication he was about to start is very hard on the liver...especially in patients younger than 2.

on september 3rd, 2006, jameson started taking depakote. we weaned him on ... increasing dosage each day. by the first week in november, we noticed the seizures had stopped. finally. it took almost two months. (natalia was born october 10th.)

there were many blood draws, a few more EEGs, an MRI and an evaluation for speech therapy during the next two years. during these years, he took his "sprinkles" - the capsules opened to be sprinkled on food. dr. o'connor became known as "dr. sprinkles". protocol said that he stay on medication for 2 years (as long as he was seizure free for all of those two years) and then be weaned to see if he'd "outgrown" the seizures.


...to be continued...

halloween camping

again this year, we camped at one of our favorite campgrounds ( the KOA in eden, wi ) for their halloween weekend. it was a bitter cold weekend in wisconsin ... which one has to expect for october. it's a bit like a box of chocolates. ;)

grandma helped carve a pumpkin! super fun:


natalia was all decked out as princess barbie! she loved it! take note of the boots in lieu of fancy heeled princess shoes!

jameson missed the trick-or-treat festivities at the campground because....well...he needed this instead. you'll notice, though, he does have ON his policeman costume.:

natalia had fun. she's such a princess, no? ladylike, right? :/

even though the weather could have been better, we had lots of fun. campfires, wagon rides (even haunted ones!), family (jim's brother and family & my mom/step-dad), candy, and love.

til next year...the camper is tucked away in the barn. :)

next post...natalia turns 4! (what?! sha. i know! 10-10-10 is the big day!)

oh! readers (yeah, all 3 of you! ;)...) please post your opinions... flu shots for the kids or no? why or why not? thanks!

Natalia 1st day

natalia's first day of school was a breeze. she's been so very excited to go that she hardly had time to tell us goodbye! :)

"mommy, i'm going to stand like this for the picture."

her first day was wednesday, september 8th. everyone got up pretty early. i'd arranged to go into work late so that i could be there to drop her off. we got to school at 8:30am. her class doesn't start until 8:47 (or some odd time like that) - the same time as jameson. so, we walk to her "locker" area, put her backpack in, hang up her coat, etc. her teacher is near the door of her room and asks if we can come back in 15 minutes because we're "kind of early". :/

ok... so we go and sit on the little bench they have in the hallway and wait. jameson decides he needs to show natalia the lay of the school and escorts her by the hand to show her the little girl's bathroom :).

lots of other kids start to filter in and we decide we've waited long enough. we walk back to her room and go in. she's first there...says "hi" to mrs. kasten and sits down to start playing with playdoh (better there than home!). hardly time for farewells, she kisses us and says "bye".

well now. that sure was easy. in all comparisons, it was the opposite end of the spectrum from her brother's routine. but, more on that another time...this is natalia's post. ;)

preschool - day one

natalia was a champ today for school! i'll post a worthwhile update on that later, but wanted those of you following along to know that she did a great job! :)

Natalia - preschool

Natalia starts preschool tomorrow. There's a major, major difference between this milestone and last week's. Natalia has been ready to go to school since her eval late last Winter. Maybe even since she was born.

She's stoked. Ready. Excited!

Picking out her clothes for tomorrow was a VERY. FUN. process.

"No that's not quite right."

"No, Mommy, that's not pink."

"Yes, I'd like to wear a dress."

You get the idea.

Despite the comment above, she's not wearing a dress. Instead, a pink shirt with gauchos, pink socks, and pink shoes. To go nicely with her pink Dora backpack. Are you sensing a theme here? As girly as she is NOT, pink is this girl's FAVORITE color. Fav. or. ite.

Tomorrow, we drop off our little girl at Mrs. Kasten's class. She's stoked.

I hope that drop off is cool and calm because I'm not sure I can handle a repeat of last Wednesday. I'll be armed with camera and smiles. Wish me luck!

kindergarten

Just yesterday, there was a baby boy here somewhere. Today, he went to kindergarten.

Last night, I worked really hard to get him ready for this morning. He drew a truck (what else?!) picture for his new teacher, Mrs. Richter. We printed a picture of his kitty, Specks (or aka Speckles) so that he could keep it in his schoolbag to look at when he needed. I told him about how I would draw a heart on his wrist so that my love would be with him all the day long. He helped me pick out his clothes and load his schoolbag.

This morning, he slept in...of course. Those blessed mornings when we ALL could sleep in, he's up at 6:30am. :P Jim and I both went up to wake him between 7:40 and 7:50. He finally got out of bed at close to 8am. That meant a quick dress, granola bar for breakfast, and fast toothbrushing. Took some photos with Daddy and Natalia...and, off we went.

We're supposed to arrive between 8:20am and 8:37am. We arrived AT 8:37am. It was raining, so the school didn't do their normal line-up-in-the-playground routine. Jameson and I went in to his classroom...he's happy, following the blue line to his room, thinking all is cool! We go to the room, take out his box of Kleenex that we'd forgotten for open house and put that where it belongs. We talk to the Mrs. Richter for a bit and I tell her about the letter and picture in the backpack - this is important later. There are a few kids already playing on the rug with various blocks, so I lead him over there to get ready for leaving. He's already asked about a bazillion times if I'm going to stay with him. :( I've repeatedly told him "no, honey, I'm going to drop you off and then go to work."

This looks like fun, no? Not so much, according to Jameson.

He sits next to a group playing with some blocks, fiddles with a few of them...bored. I'm squatted next to him, but I can only stay that way for so long. (Getting old, anyone?) So, I stand.

"Mommy, don't leave!!!"

"I'm not leaving, just standing up. But, I am going to be leaving to go to work in just a minute."

He stands. I try to get him involved in a different group of kids/blocks. Just then, the principal comes and tries to "help". She meant well, I know. But, she did NOT help. Up until this time, he wasn't crying. He was getting ready to be busy with block building - 5 more minutes and it would have gone much more smoothly. Instead, the principal says, "Ok, say goodbye to Mommy." Jameson clings - death grip around my neck. And, starts to cry. And, beg. "Mommy, please don't go, please take me with you. I don't want to stay. Please don't go."

And, I start to cry. Jameson has his head buried in my neck, so he doesn't see this-thankfully. I try to remind him of the heart drawn on his hand. I hug him. I kiss his head. He cries. The teacher comes over and tries to help, but it's too late. This goes on for about a minute - but it felt like a.really.long.time. Finally, his teacher takes him from me and I say, "Goodbye, I love you, I'll be back soon." I wave and walk out of the room. I am sobbing. I can hear him saying "please" over and over. :(

In the hall, I cry. I wait and listen for him to stop crying. I know he will. I do. But, that doesn't make it any less heartwrenching in that moment. Other teachers and moms walk by and offer their words of wisdom and empathies. Thank goodness no one made me feel like a total dummy. I inch back to the door so that I can try to hear him. Just then his teacher starts to come out of the room...with him holding her hand! EEK! He can't see me or it'll all start over again. She stops quick and points for me to go across the hall to the empty art room. They're going to hang his kitty picture in his locker. She's a smart teacher, that one...good distraction tactic. In the art room, I'm around the corner to make sure he can't see me. This also means I can't see him, but I can hear a little bit of their conversation and can tell he's not crying anymore. He and Mrs. Richter go back into the classroom, so I sneak back to just outside the door to try to listen some more. The principal comes back and looks in for me. She says, "He's doing just fine. Not crying anymore, but still holding the teacher's hand." I, of course, AM still crying. She gives me a hug and I leave. Quickly. On my way out to my car, another mother is walking in. I presume she's meeting her kid who rode the bus in. She sees me crying and says, "I'm doing all I can to NOT be doing that when I leave!"

I cry all the way to work. I resist the urge to go back and get him, take him home, and just let him play with his trucks for the rest of his life. I cry on my way into work. I cry when I get to my desk. A wonderful friend and co-worker has left me a card because she knows it'll be a hard day for me. I can't open it right away...that'll surely bring harder tears. So, I try to distract myself with work stuff. I think I stop crying around noon. My eyes are puffy and red...I look like a dope.

I go back to pick him up after school. I see him before he sees me. He scans the crowd of parents for me...anxious. When he finally sees me, I get a BIG hug! I thought for sure the tears would start again, but they didn't...thankfully. I ask how his day was. "Good!" I ask if he had fun? "Yes!" Phew. On the walk back to the car, he recounts some additional details with enthusiasm. On the bright side, the class took a trip to the school library today. Jameson thinks that is extra cool because he got to pick out a book about firetrucks and firefighters...and the fire dog named Dot. Yay! On the drive home, we talk more about the day. I start to try to prep him for doing this again tomorrow. I tell him that if he's good, we'll stop after school to pick up the Lego Construction set that he's been begging for. (Yes, I resort to bribery. Sue me.)

He says, "But Mommy, tomorrow won't be such a long day, right?!"

"Oh Baby...."

kindergarten?!

jameson starts kindergarten tomorrow. i think i may die. how have mothers before me ever gotten through this day?

should i make it through, i'll post some pictures and an update tomorrow night. wish me luck!