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!!!

The Weaning Begins

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

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

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!