Normal - whatever that means...
Not much has changed since the last post. Sophie is STILL having her seizures. It is so frustrating. I am just so happy that she is still developing normally. She still has trouble picking up larger objects but no problems picking up those little cheerios - nothing will get in the way of my Sophie getting her food!!! Actually, she is eating a lot less nowadays - more like a normal 9 month old. She is so incredibly precious. I give her big hugs and kisses and tell her about all the wonderful people that love her and pray for her (some of whom have never even met her).
Sunday, July 23, 2006
Monday, July 17, 2006
Good news and bad news...
Good news first. Sophie is starting to babble. She is starting to say "sss" as if she wants to say "sissy" and she is also starting to say "da". Sophie just loves her big sister. All Haley has to do is walk in the room and Sophie lights up. It is so precious.
Okay the bad news now. Sophie is starting to lose her ability to grasp objects. She is having a hard time holding onto objects as she brings them to her mouth. She loses her grip and drops it. I spoke with our neurologist today and he has never heard of Topamax causing this type of side effect which makes me scared to think what is causing this.
Good news first. Sophie is starting to babble. She is starting to say "sss" as if she wants to say "sissy" and she is also starting to say "da". Sophie just loves her big sister. All Haley has to do is walk in the room and Sophie lights up. It is so precious.
Okay the bad news now. Sophie is starting to lose her ability to grasp objects. She is having a hard time holding onto objects as she brings them to her mouth. She loses her grip and drops it. I spoke with our neurologist today and he has never heard of Topamax causing this type of side effect which makes me scared to think what is causing this.
Wednesday, July 12, 2006
New drug...
We started Sophie on a new drug today - Topamax. I am so scared to find out how she is going to react to this drug. Our neurologist decided to start Sophie on a new drug since she is starting to have more seizures. She is still having around 3 clusters a day but the number of seizures within the clusters are increasing. Her seizures are still mild but just not as mild. Not much else to say except I no longer see the light at the end of the tunnel. She is developing so well and her personality is shining through - it is just these SEIZURES WON'T GO AWAY!!! We had such a great day yesterday and I was so excited for Sophie...and now this - a new drug. I guess I knew it was coming but I just wanted to believe she was going to become seizure free with ACTH. Now I don't know what to believe. Her neurologist does not think she will become seizure free with Topamax but that it will help reduce the number of seizures.
We started Sophie on a new drug today - Topamax. I am so scared to find out how she is going to react to this drug. Our neurologist decided to start Sophie on a new drug since she is starting to have more seizures. She is still having around 3 clusters a day but the number of seizures within the clusters are increasing. Her seizures are still mild but just not as mild. Not much else to say except I no longer see the light at the end of the tunnel. She is developing so well and her personality is shining through - it is just these SEIZURES WON'T GO AWAY!!! We had such a great day yesterday and I was so excited for Sophie...and now this - a new drug. I guess I knew it was coming but I just wanted to believe she was going to become seizure free with ACTH. Now I don't know what to believe. Her neurologist does not think she will become seizure free with Topamax but that it will help reduce the number of seizures.
Tuesday, July 11, 2006
Wow, wow, wow...
Sophie has slept through the night the last three nights!!! Usually, she will wake up twice to eat. The first night Sophie slept through the night, Brandon was getting her ready for bed. I had just bought some overnight diapers and asked Brandon if he used one. He said "I will save those for when she actually sleeps through the night". So that night, she went to bed at 8:45pm and did not wake up until 8:00am!!! Wow - she is such a good baby!!!
Sophie turned 9 months old today. She wanted to make today special and full of memories for us. There has been numerous times that I would lay her on the floor on a blanket and walk out of the room for a moment. She would just lay there or sit there and play with her toys. Well, today I laid her down on a blanket on her tummy and by the time I came back into the room she was halfway under the couch!!! She has never continuously rolled before. She hasn't even rolled from her back to her tummy in weeks and just yesterday was the first time she has rolled from the tummy to her back. I was amazed to find her halfway under the couch and did not understand how she possibly got there. So I picked her up, put her back on the blanket, and she started rolling - back to tummy, tummy to back, back to tummy... Well, it doesn't stop there. Today she also decided she was going to figure out how to go from sitting to laying. She was sitting on the blanket and there was a toy she wanted that was out of her reach. So she leaned over and laid down and rolled over to get it. Wow - she is getting to be so mobile.
Sophie is also getting to be so vocal. She will scream "ahhhhh" at the top of her lungs repeatedly. And she has started laughing again. A big belly laugh - it is so precious.
I did not realize until now how much the drugs were keeping her sedated. We are now down to 20 units. She is still having seizures and they are still mild - just not as mild as when she was on 80 units. Her appetite is slowly decreasing which I think is why she has started sleeping through the night again.
I am so happy and excited to watch her personality grow.
Sophie has slept through the night the last three nights!!! Usually, she will wake up twice to eat. The first night Sophie slept through the night, Brandon was getting her ready for bed. I had just bought some overnight diapers and asked Brandon if he used one. He said "I will save those for when she actually sleeps through the night". So that night, she went to bed at 8:45pm and did not wake up until 8:00am!!! Wow - she is such a good baby!!!
Sophie turned 9 months old today. She wanted to make today special and full of memories for us. There has been numerous times that I would lay her on the floor on a blanket and walk out of the room for a moment. She would just lay there or sit there and play with her toys. Well, today I laid her down on a blanket on her tummy and by the time I came back into the room she was halfway under the couch!!! She has never continuously rolled before. She hasn't even rolled from her back to her tummy in weeks and just yesterday was the first time she has rolled from the tummy to her back. I was amazed to find her halfway under the couch and did not understand how she possibly got there. So I picked her up, put her back on the blanket, and she started rolling - back to tummy, tummy to back, back to tummy... Well, it doesn't stop there. Today she also decided she was going to figure out how to go from sitting to laying. She was sitting on the blanket and there was a toy she wanted that was out of her reach. So she leaned over and laid down and rolled over to get it. Wow - she is getting to be so mobile.Sophie is also getting to be so vocal. She will scream "ahhhhh" at the top of her lungs repeatedly. And she has started laughing again. A big belly laugh - it is so precious.
I did not realize until now how much the drugs were keeping her sedated. We are now down to 20 units. She is still having seizures and they are still mild - just not as mild as when she was on 80 units. Her appetite is slowly decreasing which I think is why she has started sleeping through the night again.
I am so happy and excited to watch her personality grow.
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