Today was a busy day. It started off with doctor appointments for my boys, Neurology for Luke and Opthamology for Jake. Jake's appointment actually went well (a rare occurrence) and Luke's was filled with new information. Everyday is filled with so many ups and downs, especially when it comes to my boys. Luke has around 20 seizures a day and takes 6 different medications for petite mal, complex partial and drop seizures. The drop seizures are the toughest. His body becomes limp, like he is paralyzed, and drops straight to the ground. This is the reason my boy has a chipped front tooth and permanent scars on his chin and forehead. Over a year ago we started a non-FDA approved medication, Frisium, that cost a fortune but was controlling the drop seizures. Unfortunately this last week he has started having some drop seizures again. The epilepsy specialist has decided that we need to get rid of a couple medications because he is on so many we do not know which ones are working. So we are upping one medication and weening him off another. Our specialist is also going to refer us to UCLA for a second opinion. Luke will eventually see a Neurosurgeon and decide if he is a candidate for brain surgery to try and control the seizures. These are the down moments, the fear of not knowing the future and responsibility of decisions that will have to be made.
Then there are the ups. With Luke's medications and amount of seizures he should have dull eyes and be completely out of it. Instead he is TROUBLE with a capital T :). Luke gets into EVERYTHING and wants to be a big kid so bad. He is trying to talk and becoming an expert and annoying his brother and sister. Everyday Luke is an example of God's grace and testimony that miracles do happen. After a long day of doctor appointments (Jake is finally agreeing to wear his glasses part time) we went to Franklin Elementary for the In-N-Out fundraiser. The kids were all smiles
and it was a great night. Luke enjoyed his hamburger and chasing after the kids on the basketball court. The future is uncertain, but we have faith. Just look at that smile, how could you not trust the Lord? :)
Today was a busy day. It started off with doctor appointments for my boys, Neurology for Luke and Opthamology for Jake. Jake's appointment actually went well (a rare occurrence) and Luke's was filled with new information. Everyday is filled with so many ups and downs, especially when it comes to my boys. Luke has around 20 seizures a day and takes 6 different medications for petite mal, complex partial and drop seizures. The drop seizures are the toughest. His body becomes limp, like he is paralyzed, and drops straight to the ground. This is the reason my boy has a chipped front tooth and permanent scars on his chin and forehead. Over a year ago we started a non-FDA approved medication, Frisium, that cost a fortune but was controlling the drop seizures. Unfortunately this last week he has started having some drop seizures again. The epilepsy specialist has decided that we need to get rid of a couple medications because he is on so many we do not know which ones are working. So we are upping one medication and weening him off another. Our specialist is also going to refer us to UCLA for a second opinion. Luke will eventually see a Neurosurgeon and decide if he is a candidate for brain surgery to try and control the seizures. These are the down moments, the fear of not knowing the future and responsibility of decisions that will have to be made.
Then there are the ups. With Luke's medications and amount of seizures he should have dull eyes and be completely out of it. Instead he is TROUBLE with a capital T :). Luke gets into EVERYTHING and wants to be a big kid so bad. He is trying to talk and becoming an expert and annoying his brother and sister. Everyday Luke is an example of God's grace and testimony that miracles do happen. After a long day of doctor appointments (Jake is finally agreeing to wear his glasses part time) we went to Franklin Elementary for the In-N-Out fundraiser. The kids were all smiles and it was a great night. Luke enjoyed his hamburger and chasing after the kids on the basketball court. The future is uncertain, but we have faith. Just look at that smile, how could you not trust the Lord? :)
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