We are very busy prepping for Cocktails, cookies and chaos Peter's style, so I won't write much, just an update in our comedy.
Let's see first off i missed a faculty meeting today. I was at school. I even asked "Where is everybody?" While they were all being informed of school procedures, I was upstairs...wondering.
next, I sent Jake to school in his pajamas for pajama day a week early! Luckily, according to his aide, I wasn't t the only one. I still don't know if she was trying to make me feel good or not. At least he was comfortable all day! right?
On a serious note, I am pretty sure we are going to have to try a new medicine cocktail for Jake. we journey to the neurologist next Monday and the days go can not quick enough until that 8:30 appointment. Jake had a blood test yesterday to check his lamictal level to determine if there is room to , once again, up the dose. I try to be optimistic, but even yesterday he had 10 drops. I find it hard to believe we would have enough room to increase that much.
I am not opposed to changing meds, however I get terrified of the side effects. More seizures? change of personality? lethargy? loss of motor skills? loss of speech? loss of cognitive skills?
Do we really have to start the whole process over again?
The goal is seizure free. So I guess I am willing to try anything to get him to that day!
Faithless is he that says farewell when the road darkens.
J. R. R. Tolkien
God Bless~Christine
ps- I have decided to do a seizure count each day...today's= around 6, yesterday around 10
Let's see first off i missed a faculty meeting today. I was at school. I even asked "Where is everybody?" While they were all being informed of school procedures, I was upstairs...wondering.
next, I sent Jake to school in his pajamas for pajama day a week early! Luckily, according to his aide, I wasn't t the only one. I still don't know if she was trying to make me feel good or not. At least he was comfortable all day! right?
On a serious note, I am pretty sure we are going to have to try a new medicine cocktail for Jake. we journey to the neurologist next Monday and the days go can not quick enough until that 8:30 appointment. Jake had a blood test yesterday to check his lamictal level to determine if there is room to , once again, up the dose. I try to be optimistic, but even yesterday he had 10 drops. I find it hard to believe we would have enough room to increase that much.
I am not opposed to changing meds, however I get terrified of the side effects. More seizures? change of personality? lethargy? loss of motor skills? loss of speech? loss of cognitive skills?
Do we really have to start the whole process over again?
The goal is seizure free. So I guess I am willing to try anything to get him to that day!
Faithless is he that says farewell when the road darkens.
J. R. R. Tolkien
God Bless~Christine
ps- I have decided to do a seizure count each day...today's= around 6, yesterday around 10
2 comments:
You are so strong. I sometimes try to put myself in your shoes and can't even come close. You will get there- the power of prayer is infinite!!!
I love J.R.R. Tolkien.
You are an amazing, loving, strong, caring, uplifting, inspiring, beautiful and intelligent woman. You have handled and will handle whatever comes your way, with faith and hope. I have seen that in you throughout all of this. It is okay to question and wonder and hesitate. The Lord will keep you and guide you. Keep on keepin' on...you are a teacher to all of us!
(I fixed the time stamp...CST, now)
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