Sadie will be three months old this week! How time flies. She is a very happy baby with a very feisty personality. I call her my little drama queen. She does not like to be woken up (well...do any of us, really?) She is quite dramatic about it and has a 5 minute ritual of stretching upon waking up. She also smiles quite a bit, she loves to be talked to, and will try to join in the conversation.
Sadie started her initial seizure medication, Topomax, on the day of her diagnosis. We've recently added a new seizure med, Vigabatrin. Sadie is still having 10-15 clusters of seizures a day. The vigabatrin doesn't seem to be helping. We are planning to put her on the ketogenic diet in late August (the first date the hospital has open). The ketogenic diet is a specific diet regimen designed to reduce the occurence of seizures. http://www.childrensmemorial.org/depts/neurocenter/epilepsy/ketogenic.aspx
Sadie will see an ocularist this week to discuss options for her right eye, which is smaller than the left (micropthalmia). We have heard that many children with micropthalmia are fitted for conformers which will allow her eye sockets to grow at the same rate . We're still not sure if she will have vision in this eye and have begun patching the "good" eye for 30-60 minutes a day to stimulate any vision that she may have in the "bad" eye.
Sadie will also be in the hospital this week for an overnight EEG. The EEG will give us more information about her brain activity in relation to her seizures.
Thinking about you guys and following along in the journey! I am trying to persuade the ND alumni club of charlotte to let us use the Aicardi Foundation as our charity this year and try to raise some money for the little one. I will keep you posted. Hope the EEG goes well this week and continues to provide helpful information. Love always - Carolyn
ReplyDeleteThanks for the update and good luck with the EEG. Know that you guys are all in our thoughts and prayers. Please keep us updated.
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