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!
Wednesday, October 22, 2008
Wednesday, September 24, 2008
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.
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.
Monday, September 22, 2008
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!
Here are some pics -
During the EEG
After the ordeal
She is such a good sport!
Thursday, September 11, 2008
Off Iron
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.
Thursday, September 4, 2008
72 days on Topamax
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.
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.
Tuesday, August 26, 2008
Just One Month To Go
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.
Monday, August 18, 2008
Growing and Growing
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.
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.
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