Cora Elizabeth

whoops 2 months later!!

2010-11-09T14:54:00.000-08:00

Here are some lovely images from Cora's birthday and Halloween!

Preschool!!

2010-09-09T11:01:00.000-07:00

Cora had her first few days of preschool this week!!

It didn't go great. She is having a hard time adjusting (me too!) but she looked adorable!!!!

My favorite!!

oooh maybe this is my favorite.

...or maybe this one.

Dress Up

2010-08-16T19:25:00.000-07:00

Cora loves to play "dress up". She can't go anywhere without her at least two accessories - normally a purse and lip gloss!!

And here is one that I just love! I was talking on the phone with my mom when I looked out in the back yard and saw this -

They have so much fun together!

I know these posts are few and far between but watch for September because big things will be happening for Cora!

Happy Independence Day

2010-07-04T09:30:00.000-07:00

Today we celebrate the second year of Cora being seizure free!!

Hug your family. Eat some Apple Pie. Enjoy the 4th of July!

June

2010-06-23T18:04:00.000-07:00

The rain didn't seem to let up at all until last night. This was our sweet reward for it.

Rainy Days

2010-05-23T09:56:00.000-07:00

Having a 2.5 year old inside all day is a pretty interesting task. So today Kris and I decided to take a little lesson from Nick Jr.'s "Ni Hao, Kai Lan". We put our rain gear on and took a little walk.

Here our some pictures of our short adventure! It was dry and consisted almost entirely of sniffing flowers.

Baby days are leaving.

2010-04-21T10:11:00.000-07:00

I took this picture of Cora recently. When I saw it, it almost made me gasp. She looks so grown up.

The only saving grace is that she is not wearing a shirt. The fact that she refuses to wear clothes most of the time proves she is still a baby - right? right?!?

A little "Me" post!

2010-04-12T13:11:00.000-07:00

I ran my first 1/2 Marathon yesterday!! I am still completely wiped out but am very happy I did it.

My little trophy at the end really made it all worth it.

That and when were standing in line to get my "Finisher Photo" taken she said - "Mommy, I so proud of you!" and gave me a big hug. Everyone around us went "awwwww". It was a little bit of a tearjerker!

Oh the drama.

2010-03-05T07:49:00.000-08:00

Nooo my/I want/ I don't want ________ followed by throwing herself on the floor.

This is a frequent scene in our house. She is mostly just this hilarious little sweet thing and then all of the sudden drama drama drama out of no where.

It cracks me up...when it isn't making me want to run away from home.

New skills -
~Knows her alphabet (can point to and name all letters)
~Can count to 13
~Finally figured out the difference between "my" and "I"

Favorite books -
~Don't Let the Pigeon Drive the Bus
~Fancy Nancy
~Leonardo the Terrible Monster

Favorite Songs -
~What's This - Nightmare Before Christmas Soundtrack
~Let's Get Together - The Parent Trap Soundtrack (or as she calls it the "alligator song"
~Manah Manah - (The Cake version)

And in the shocking category she HATES cereal. Who on earth hates cereal? I would only eat cereal if there were no rules.

Piano Prodigy

2010-02-05T14:21:00.000-08:00

Cora loves to play all sorts of instruments - the harmonica, the guitar and bass, the drums and, of course, the piano.

(I promise Ellen, we will have her painting and sewing too!)

And one for fun!

Winter time fun!

2009-12-30T10:04:00.000-08:00

Here are a few recent pics of the winter time here at our house.

Cora watching the snow fall.

Getting ready to walk to Papa and Wawa's

Decked out in snow gear.

In her Christmas dress.

Her very first bike. Can you tell she is excited?

Doing the only cool thing there is at Jantzen Beach.

As Peaseblossom at Mikenzie's Graduation Party.

Talking....and talking.

2009-12-11T08:10:00.000-08:00

Cora has obviously been talking for a while now, so the fact that she is talking isn't that impressive. But what she has been saying is so.much.fun.

Example A:
(holding hand out flat)
Cora : Riiiilleeeey eat the apple.
Me: Are you feeding Riley (Mom and Rick's horse)?
Cora: Mmm hmm Riley eats hay and apples.
Me: You are genius!

Example B:
Me (and Mom, she can't pretend like she wasn't part of this): Cora, I don't want you to ever say this again but can you show Ninny how you say Douche bag?
Cora: Doooose bad.
Ninny (my mom): Can you say putz?
Cora: Putz!
Me: Okay last one, can you say wiener.
Cora: wiiieeennnnerr!!.....pause.....DADDY'S WIENER!!!

Good thing we were at a stop light. We would have run off the road laughing.

Halloween at the Hoyts

2009-11-03T09:07:00.001-08:00

So I decided to torture myself and make Cora an Alice costume. Luckily it went really smoothly and she kept it on the whole time!

We also had a great time at the pumpkin patch.

In other Cora news she has had what can only be called a language explosion. She even says sentences! Her current favorites are "Airplane in the clouds" and "Goodnight Moon". She is also into labeling everything - Daddy's pillow, Mommy's shirt, Coco's chair etc. We love it! It is so much fun to hear her chatter on about what ever she sees. It isn't even annoying yet!!

Bye Bye Poops.

2009-10-02T08:23:00.000-07:00

Totally immature! Cora is going to hate us! Enjoy!!!!

Bad Bad Blogger

2009-08-31T16:43:00.000-07:00

This summer has been insane. We have already been to 3 weddings and have one more left. Cora seems to be loving all the action around the house since she is talking and dancing like there is no tomorrow. All of this activity though has slowed potty training a little. We are still working on it and we now have a chart system but it her success really depends on our ability to stay on top of it. Sadly, that isn't always easy.

Her new favorite words are colors. Especially pink and yellow - or kink and wellwoah. She loves coloring and playing pretend.

Here is Cora chatting in the tub. Her voice is kinda scratchy because she has a cold but it was just too cute. Ignore the weird face that this is paused on. I promise she is much cuter than that ;)

Cora in Love

2009-07-29T07:32:00.000-07:00

Cora has met Henry before but he seemed different this summer...more grown up, handsome, just one kiss...hee hee.

Potty training?

2009-07-22T07:30:00.000-07:00

I think we have officially started active potty training. I decided to show her the potty a while ago. I bribed her to sit on it with cookies and had the potty chair in the living room. She has gone on it a few times after sitting there for several minutes. Until yesterday.

Yesterday she went into the bathroom, pointed at the potty chair, squatted and said "cookie". I though she wants a cookie and thinks she needs to sit there to get one but, alright. So I pulled the potty out super quick sat her on it and she went almost immediately!! She asked for it a couple more times during the day and always went when asked if she needed to.

I am so impressed. I love what a big girl she is becoming.

One Year

2009-07-04T14:00:00.000-07:00

I find it fitting that my mom and I would see Rent so close to Cora's One Year Seizure Free Anniversary.

This year has taught us patience, appreciation, true love, and the importance of friends and family. We have also learned how much we can survive.

Cora surprises us everyday and while I am sure the complete astonishment at where she is versus where we thought she (and we) would be at this point in her life will slowly fade, and her daily routine and accomplishments, will simply become just those things and not miraculous feats of odds defiance, we have not yet had a single small step not warm our heart.

Happy Independence Day indeed.

For those of you who haven't seen Rent check out the song Seasons of Love.

The run!

2009-06-23T15:13:00.000-07:00

Well I made it through the NW Epilepsy Foundation 5k. Only I don't think it was a 5k it was more like 4. I can't wait to do it next year. It was a really awesome community of people and it made me feel really lucky that we had such a happy ending to our story.

Like dorks we forgot our camera, but Kris took a picture of me at home.

Thanks for all of your support!!

Now on to Cora. She is singing!! She mostly sings "Don't bite your friends" only it goes like this -- Don't Don't Don't bibpodbow blah. Thank you Yo Gabba Gabba. Her Mimi (my mom) taught her "Old MacDonald" which goes -- EOOIEEAIOO. And she points to various parts of her body during "Head, Shoulders, Knees and Toes". Her new favorite thing to do is "Tickle Tickle" anyone. She will drop what she is doing if you ask her to "tickle tickle __insert name here___". She thinks it is hilarious.

She is also now in her big girl room. Time is flying by.

Far too long

2009-06-01T22:05:00.000-07:00

We have finally recovered from what can only be called the Mammoth Flu. Everyone was puking and sneezing and all other sorts of unpleasantness. Mother's Day was spent in Urgent Care (for me) and Same Day Services (for Cora). So.glad.it's.over.

I registered for the Epilepsy Foundation NW Run/Walk. If you are interested in joining me or are feeling donationy go here - Gretchen's Trying To Run A 5k Page. There are links to registering on the left. I thought about starting a team but, neh, maybe next year.

Cora is a talking fool. Her new favorites are: bubble, cracker, cookie, cock-a-doodle-do, ahh-ahh (monkey sound), and she says Teddy (Uncle Ted) really well. She loves to do the sign for bird. She does it all the time. She love all animals and is finally enjoying the zoo. She points at everything (not just the other kids) and says wow.

The weather has been great to us. Cora could play outside all day and I am happy to let her. Let's just hope this good weather lasts!

edited to change the link so it goes to the right page - duh!

Flu Flu go away

2009-04-28T10:52:00.000-07:00

We are all super sick over here. Poor Cora had a fever all day yesterday. We are all on the mend today but I am telling you, nothing is worse than a sick baby. It just breaks my heart.

On a lighter note Cora finally said Mom. Not mama or mommy, just mom. And really it was more like this "Maaaahhhm MahhhHHMMMM!" I wasn't paying attention apparently. I am guessing I will be hearing that a lot. I know I should be mostly annoyed but I love it. I love hearing her talk, everyone says I will get sick of it but that isn't even close to happening.

Politeness

2009-04-20T08:07:00.000-07:00

Cora has magically learned some manners. Her new favorite thing is saying "Thank you". She likes passing anything (i.e. a toy, food, clothes) back and forth, each person taking turns saying "Thank you". She also uses the signs "please" and "more". Both Kris and I think we have heard her say them but it isn't consistent. We are happy that if she is going to be such a little miss bossy britches she is at least using nice words.

Yesterday she went to her first softball game. I was little nervous since cheering sometimes startles her and makes her cry but at the game she was clapping and saying "Yeah" when everyone else was. It was really fun and pretty cute.

Cora's New Hat

2009-04-13T13:14:00.001-07:00

Too cute!

18 Months!!

2009-03-27T14:59:00.000-07:00

Cora will be 18 months old tomorrow! I can't believe it. She had her 18 month Well Child Check with Dr Mason yesterday. I love it when we get to see him. He is just fantastic. She is still pretty skinny, she only weighs 21 lbs. And is average on height 31.25 inches. They handed us a sheet of what 18-24 month olds "should" be doing. And she does everything except say 20-50 words. (She only says around 10) And although it is just a guide that made us feel really happy.

What's more she didn't even flinch when she got her DTaP booster. Yesterday and today she has been a little cranky but we have been so lucky when it comes to immunization reactions and now she is done until she is 5 unless we go to Mexico (then she needs a Hep A).

I asked Kris to come to this appt because he hasn't really had the chance to see what a normal happy appt is like. The rest of the day he kept saying how good it was, plus I secretly think he likes seeing Dr Mason.

1st Haircut!!

2009-03-16T15:40:00.000-07:00

Goodbye Mullet!!! These are the best pics I could get so far. Now she just has a mini-mullet. Auntie Donna came over to do the special event. I am almost sad to see it go except people kept asking if I had given her a haircut already! They thought I cut her hair into a mullet!!! Fine in 1990 not 2009. Although I think they are coming back.

Before

After

During

Yes that is a chocolate milk bottle and yes it is glued to her mouth.

She is getting so big!

2009-03-12T10:09:00.000-07:00

She is just really becoming a little girl. You can see it a lot in this video of her spinning. Kris spun her around and she liked it so much she started doing it herself.

It is hard to believe she will be 18 months old in just a few short weeks!!

It is finally happening...

2009-02-18T11:30:00.001-08:00

I was told that it (parenting) would get easier as they gain independence, so far I have thought that was a bunch of hooey but I am starting to see it. Cora spends most of her awake time in a really good mood; talking gibberish to her toys and bringing me little bits of things that should be vacuumed up. She is a wild child for sure and HATES being forced to do anything like holding still for diaper changes or getting her nails clipped or having to give us the remote control. Spirited, that's what we are calling her. Spirited and sweet.

She also turned out to be a snuggler which was unexpected but very welcome. She loves to cuddle. Now we just need to work on the whole independent sleeping thing without doing "Cry-it-out" (I am way too much of a weenie for that business). Hopefully the transition to her Big Girl Bed will help. Who knows? Right now co-sleeping isn't really that much of an issue because a) I like to cuddle her and b) we are getting more sleep this way (all of us). Slow and steady right?

We have words!!!

2009-01-31T15:33:00.000-08:00

Cora has started speaking a little English. She now says "Hi", "Doggy", "Woof Woof", and "All Done". She also points to her belly, to Mommy's nose, and to her BFF Baron. We are so proud of her!!

Completely Perfectly Normal

2009-01-16T15:38:00.000-08:00

Those were the nurses exact words when she called from Dr Metrick's office. I managed to stutter out "So...we're done?" "You're done!" I asked her so what do we say when a medical sheet asks if she has epilepsy. She said to make a note about the IS and that the medicine took care of it and all EEGs are clean. She then told me to have a great weekend.

You could have knocked me over with a feather when I hung up the phone. And then I started bawling. To go from having a child that may never walk or talk to "completely perfectly normal" in 6 months is a lot to take in. I have never felt more grateful in my life, this is on par with the day she was born.

We have received an unimaginable amount of support and prayers and love from family, friends and complete strangers. We cannot possibly tell you how much everyone's kindness has not only made us feel happy and loved but kept us from sliding into complete despair. We can never repay everyone however we promise, as a family, to pay it forward every opportunity we get.

Note:This will not be the end of this blog but the focus will change and be more on Cora's continuing development. She amazes us everyday. Plus I will occasionally post different information and events focused on Epilepsy as many people who read this site are from the Infantile Spasms community. I already plan on doing the Northwest Run/Walk for Epilepsy 2009.

Quick Check-Up

2008-12-27T17:29:00.000-08:00

Cora saw Dr Mason last week for a quick check up. He seems to think that she is perfectly on track even though she isn't saying any words yet. That was refreshing. He also said that her eardrums look great and that a lot of babies her age are as skinny as she is, which really isn't that surprising if they all run around as much as she does.

We are really looking forward to Hawaii but were nervous about the red-eye on the way home. Luckily, Dr Mason told us we could give her a little Benadryl to help her sleep.

We are anxiously awaiting her first real word. Maybe Hawaii will bring out the best in her!

Last Office Visit?

2008-11-24T08:26:00.001-08:00

We had her follow up on Friday at the pediatric neurologist's office. She was so happy with her progress (walking and babbling) and said not to worry about her not saying any words yet since she is obviously talking in her own way. At first she didn't want to do a follow-up EEG at all but then decided we probably should just to make everyone feel better but she needs to be off meds for a month. I told her we would get one when we come back from Hawaii in Jan so just in case we do get bad news, we don't spoil the vacation. She said "That is such a healthy way of thinking and so smart, I am impressed" I was sort of surprised I said it too.

We have been so caught up in how fragile Cora is for so long that we have forgotten how to be normal. We are finally finding ourselves saying things like "she is being a pain" or "what a dork" without (huge) pangs of guilt for making fun of/being frustrated with/or mad at a sick baby.

So we can't write the whole ordeal off yet since she still has an EEG in Jan but Dr Metrick said that all the patients with IS that she has had, that have gotten healthy, have remained healthy. So that is really reassuring and we feel confident that her EEG in Jan will be normal and that we won't have to go back to see Dr Metrick.

Neato

2008-11-15T15:21:00.000-08:00

I saw this on a good friend's (Aly) blog and I decided to make one. I think it is a really neat way to look at our little experience. The larger words were used more often.

If you want to make one go here - Wordle

We're Done!!!!

2008-11-11T18:17:00.000-08:00

We just gave Cora her last pill! 140 days on Topamax. We don't know if our journey is over or not but it was thrilling to end the meds. She is eating so much better and in general is happier. She is also a lot sweatier. We knew that the drugs could cause her ability to sweat to decrease but we had seen her sweat so we didn't worry about it. Wow she is a sweaty little piglet and we are loving every minute of it.

She is also walking a lot now. She still thinks crawling is easier but is choosing walking more and more. Now we hope that with an increased appetite she can fill up during the day and maybe (oh please oh please) sleep through the night.

She has a follow-up with Dr Metrick on the 24th to discuss what our plans for the future are and I will update then.

YAY!!!

The Weaning Begins

2008-10-22T07:55:00.000-07:00

Sorry it has been so long since we updated. There really has not been much going on since her last appointment. She is still seizure free, which thrills us everyday and is constantly on the move. She has taken a few quasi-steps, so we expect her to start running circles around us at any moment.

Her birthday was a huge success. She is so lucky to have so many people that love her.

We officially started weaning her today. Instead of having 2 pills this morning she only had one. The schedule looks like this-

Week 1 - 1 pill am & 2 pills pm
Week 2 - 1 pill am & 1 pill pm
Week 3 - 1 pill pm
Week 4 - DONE!!!

We are so excited and a little nervous. We just really feel that her appetite will return and she will start sleeping better when she is weaned of the Topamax. After this is all over we will have a follow-up with Dr Metrick and then a month later we will have one with Dr Mason.

Wish us luck!

The Follow-Up

2008-09-24T13:06:00.000-07:00

Her EEG was "completely normal".

Dr Metrick was grinning from ear to ear and just kept saying that she was thrilled and excited. I thought I was going to cry. She said that the Topamax may be making the hypsarrythmia go away but the other patient who Topamax worked for didn't get a clean EEG the second time so she is confident that the Infantile Spasms has resolved. To be on the safe side we are going to keep Cora on it for another month to allow her to slowly grow out of the medication (sort of a passive weaning) and after the 4 weeks is up we will actively wean her. So now we are just hoping that it has truly resolved and that the spasms won't reoccur with weaning. We just can't believe that in 2 months we will know if this is all over for us.

Kris pointed out that we have really only received good news since we received the bad news. He is right and we feel so lucky and so proud of Cora for being such an amazing fighter...and so cute.

2nd EEG

2008-09-22T09:58:00.000-07:00

Cora had her second EEG today. Again it wasn't a very fun process but the tech this time was way faster and Cora went right to sleep after everything was put in place. We won't know the results until Wednesday at her appt but we will make sure to update as soon as we can.

Here are some pics -
During the EEG

After the ordeal

She is such a good sport!

Off Iron

2008-09-11T13:17:00.000-07:00

Cora is finally off her iron supplement. I am so glad that is over. Even though she was really good about taking it, I know it was yucky and I am glad to have it removed from our morning routine. I am going to keep feeding her iron fortified cereal and should probably up her veggie intake (mine too for that matter). This is prefect timing because we were almost out of drops and I don't really want to shell out the cash for some more.

72 days on Topamax

2008-09-04T19:59:00.000-07:00

I was staring at my organizer today in awe of the number I saw - 72. 72 days on Topamax. I don't know why this number seems so huge when 71 didn't or 30 or 55. It just hit me that it has been a long road and we still don't know where the end is.

Dr Metrick's office was kind enough to give us some more free samples. They are a very kind bunch of people. It's amazing how expensive everything is right now and they seemed to understand that every little bit helps.

We had a great time in Goldendale last weekend and next weekend we get to take part in a Natural Parenting festival called Greensprouts. We are very excited to be part of the baby-wearing fashion show. We will post pictures of our time on the runway.

Just One Month To Go

2008-08-26T08:00:00.000-07:00

We just need Cora to stay seizure free for one more month. If she stays seizure free we can get her an EEG and see what her brain is up to. We know that is isn't a guarantee that we can start weaning her off of her meds but we are still looking forward to it. Wish us luck.

Growing and Growing

2008-08-18T11:59:00.000-07:00

Cora is standing on her own really well now. And that tooth finally made its way through today. She is a babbling fool and we can now tell when she sees Cowbell or Baron so her language skills are definitely developing.

Her iron levels are now normal and we are anxiously awaiting the okay to take her off the iron supplement.

Here are some recent pics -

To see new pics of Cora go here
http://www.flickr.com/photos/the_hoyts/
You need to have friend or family status in order to see pics, if you need help with that just email me and I will help you out. You need to sign up for a flickr membership, it is free and easy.

An artcle in Parenting Magazine

2008-08-06T07:37:00.000-07:00

I came across this on another mother's page. Her son Charlie was diagnosed with IS in a very similar way to Cora. He is doing really really well.
http://www.parenting.com/article/-/Health/Love-and-Instinct
It is spookily similar to Cora's story and it brought me a lot of comfort.

One month seizure free

2008-08-05T08:00:00.000-07:00

Cora has been seizure free for over 30 days. It has been so great having our little girl back to herself. She is getting into everything and trying to stand on her own. She is also getting her fourth tooth. So she has the two middle ones on the bottom and two fangs. It is hilarious.

We also found out that she is anemic. So we have been giving her iron everyday. She hates it! And I don't blame her. I tasted just a tiny bit and it tasted like I had carried gross dirty change in my mouth all day. This is totally unrelated to the IS, just one of those baby things. So we will go at the end of next week to get her tested again and hopefully we can stop giving her iron.

We are just looking forward to the end of September. If she is seizure free then she gets her EEG and her follow up appt. She also has her 12 month Well Child Check. That means vaccines but we like going and seeing Dr Mason. And of course her 1st birthday. I can't believe she is already 10 months old.

Neuro Appointment

2008-07-25T16:13:00.000-07:00

Cora had her follow-up neurology appointment today. It went really well. Dr Metrick was thrilled that she has been seizure free for this long (21 days) and is impressed with her continued developmental progress. The plan is to keep her on the Topamax, increasing it to therapeutic doses according to weight and just keep her seizure free. If she remains seizure free for two more months we will do another EEG. If the EEG shows no hypsarrhythmia then our understanding is we will begin to wean her off of the Topamax; if it does we will continue treating in the same manner.

Dr Metrick is also pleased that no tubers were found in her eye exam. She said that the fact that there is no diagnosis is actually a good thing, it gives her better odds for coming out of this unscathed. Not that there really is such a thing as odds with Infantile Spasms. There are so few cases and they vary so dramatically that it is almost impossible to connect the dots or come up with figures. That doesn't sit well with Kris' analytical mind and my control freak tendencies but we feel that if they see some sort of connection to undiagnosable cases (idiopathic) and positive results, that is enough of a statistic for us.

We still live with the fact that we may be raising a developmentally delayed child and that it could develop into other kinds of Epilepsy (one in particular that is just as damaging as IS), but that has moved to the background quite a bit since Cora continues to amaze us with what she learns everyday. And of course how absolutely adorable she is always helps :)

Woo Hoo!

2008-07-11T13:01:00.000-07:00

Cora had her eye exam today and they didn't see any tubers. This is hugely relieving! That, I believe, is all the testing we are doing for Tuberous Sclerosis. We know we can't be 100% sure she doesn't have it, but it really looks that way.

Also Cora has been seizure free for a week. She has learned to crawl, pull herself up on the furniture and loves to clap. It has been a really great week for us. We still need to up her Topamax to the therapeutic level for her weight (which is still a very low level) for a couple of weeks. If she is still seizure free we will get another EEG to see what her brainwaves are up to.

It's been a good week.

Cautious Optimism

2008-07-01T10:41:00.000-07:00

It appears the minuscule dose of Topamax we are giving Cora is making a difference. She only had one episode of 8 spasms yesterday. We know that some drugs only work for a short period and then for whatever reason stop but this really encourages us that a low dose of Topamax is going to be enough.

As far as side effects go, we haven't really noticed any. She might be a little sleepier, a little fussier, and possibly it is harder to get smiles from her. However she did cut her first tooth this week and it is very likely that what we have seen (or imagined) is related to that. After all we know when one tooth comes in another follows shortly, so she is probably in a good deal of discomfort due to that. And honestly, if this is our child in the pain of teething, then we are really lucky because she is taking it on really well.

We will up the dosage on Thursday and will continue to do so for 3-4 weeks. If at that point her seizures are gone then we will get another EEG. If they aren't then we will consider another drug.

It's a small victory but we will take whatever we can get!

Our Journey Begins

2008-06-23T10:19:00.000-07:00

On June 10th I noticed Cora nodding her head in a weird way. She did it about 6 times. Kris and I chalked it up to her being the sweet little weirdo she is and left it at that. However I saw them again two days later. I filmed them and called the doctor and they told me to monitor it and bring it up at her Well Child Check (WCC) appt the next week. They increased, and I called back. She had 4 episodes of any where between 2 and 30 "nods". They got us an appt with the doctor on call. I showed her the video; she told us not to worry but that she would refer us to a Pediatric Neurologist. By the time Monday rolled around I was a wreck. I called her primary care physician crying, saying that Thursday (her original WCC time) was too far away. They got me in that day. Dr Mason reviewed the tape and said not to worry, Cora was developing just fine. She has reached all of her milestones and is a very happy baby. He did however get us an appt at the Pediatric Neurologist for an EEG on Monday the 23rd. Although he tried to reassure us, Kris and I left feeling full of dread. That feeling only worsened as the day went on and by the next morning we were both a complete mess. I called the EEG dept and begged for a sooner appt. They got us in that day.

I know I sound like the worst sort of patient (or mother of a patient) constantly calling and making them see her sooner, but it was the only thing I felt I could influence. I couldn't change the outcome but I could try to control how quickly it was addressed. Not knowing what was going on was almost the worst part. The EEG was less than fun. No one should have to see their baby with wires bandaged to her head. However it is a painless procedure and she fell asleep as soon as everything was in place. We got the call the next day. I feel so bad for doctors when they have to share bad news. Cora had been diagnosed with Infantile Spasms, a rare and serious form of epilepsy. Although we were expecting it, it felt like I got hit by a truck. Poor Dr Mason had to try to tell me what to do next through my sobs. I don't remember anything he said besides we needed to start a drug called ACTH. I immediately called Kris and he came home from work. I called my aunt DeAnne and my mom. My mom caught the next flight of the island.

What happened afterwards was a blur of calls from insurance companies, looking things up on the internet, learning about drug treatment and of course crying. The next day we received a call from the company that was ordering the ACTH for us. They informed us that the cost of the drug with our insurance was going to be 29,000$, yes that is 3 zeros. Any composure I had left was gone. We were talking about filing bankruptcy or selling our house. It had been 9 days since I saw that first head nod and now our lives were unrecognizable. Well jumped on the phones. I called Tom (Kris' and my previous boss) to see if I could get back on the insurance that he has at his company in hopes that their Rx plan was better. We called everyone, Dr Mason, the neurologist (Dr Metrick), and the company that was robbing us blind. When we got no answer from anyone, we showed up at Dr Metrick's office. There was no time to sit around and wait for them to call us, we needed action NOW! There are other drug options out there, one in particular we were interested in and we wanted to know our options. Dr Metrick was not in but her nurse was. She wrote down all of our concerns and called us that evening saying that Dr Metrick wanted to meet with us the following morning.

Friday morning we arrived at Dr Metrick's office. She is a very sweet lady with a very hard job. She looked Cora over and asked if she had any birthmarks. I pointed out her white one. Apparently this, coupled with the IS is a symptom of Tuberous Sclerosis Complex (TSC). She asked if either of us had them and I told her I did although it had blended in now which means it is possible that I am a carrier for the mutated gene. Many people live with TSC and never know they have it. Especially if they, like Cora, have no developmental delays. If she didn't have spasms we would have no idea. We set up and MRI for Monday to confirm. The good news in all of this is the drug we were interested in, Vigabatrin, is the first choice for IS caused by TSC. It isn't approved in the US because it can cause some field vision loss but every other country always uses it first. It isn't a steroid so it is safer and we can easily get it from Canada. Oh and it is like 1.50$ a pill. Much better.

Her MRI went great. She only needed a little gas. They had to stick our pudgy girl a few times to get a good vein for the contrast portion of the MRI but all in all she came out sleepy and unfazed. We got a call from Dr Metrick's nurse, Jennifer, first thing Tuesday morning. She told us that her MRI came back perfectly normal. I was in shock. I had totally wrapped my head around the TSC diagnosis as devastating as it was. She told me Dr Metrick would call later to discuss meds. When she did call she seemed as shocked as I was. She said this was very good news and although we can't rule out TSC 100% the MRI was very encouraging. Most babies that are having seizures caused by TSC already have lesions in their brains. We do still need to get her eyes checked since lesions can show up there and it is an easy benign test to do.

We have decided to start her on Topamax, an anti-seizure medication. There really isn't a "good choice" when it comes to medication - they all have risks and side effects that are undesirable but this is a place for us to start.

We are confident that Cora is going to do marvelously. She has a huge support system and parents that are willing to do anything for her. She is such a sweet girl and we are so happy that she is seemingly unfazed by this all.