It is finally happening...

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!!!

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

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

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?

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

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!!!!

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!!!