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.
Wednesday, June 28, 2006
Good news, good news and more good news...
It has been a very busy week. On Monday, the physical therapist came over to evaluate Sophie (our parent educator referred us to the Missouri First Steps program which helps children from birth - 3 years). The therapist said that Sophie would not qualify for the program because she is not lacking more than 50% in development. Yeah - good news!!! But, Sophie is still able to participate in the program because of her seizure disorder.
On Monday afternoon, I took Sophie to see her pediatrician. Over the weekend, Sophie was sooooo crabby and whined all day long. On Monday morning, I noticed she was scratching at her ear a lot so I thought she might have an ear infection. When her pediatrician examined her, her ears, nose and throat all looked great. She said Sophie was teething and sometimes when the tooth is coming in it hits a nerve causing a shooting pain from your mouth up to your ear. So we gave her tylenol and she has been fine ever since. Yeah - good news!!!
Today, we took Sophie to see the neurologist for another EEG. The results showed that Sophie no longer had hypsarrhythmia (chaotic brain activity)!!! Yeah - GREAT NEWS!!! Her EEG is still slightly abnormal, though. She no longer has areas of suppression but still shows areas of drowsiness. Her background rhythm occasionally is a 5 or 6 but not as much as her neuro would like to see. Also, her left and right side of the brain is working together a lot better. With this information, the neurologist decided not to switch to prednisone. We are going to keep her on ACTH but start the weaning process (60 units for 4 days, 40 units for 5 days, 20 units for 5 days, and 20 units every other day for 10 days). This weaning process is very important. If Sophie's seizure activity does not increase and if her brain activity keeps normalizing during the weaning process, then it means her body does not need the steroid to stay this way. So now we wait and pray that she does okay with the weaning process.
By the way, Sophie had a wonderful day today. Usually, the EEG wears her out, but today she was so incredibly happy and vocal. We met with the doctor after the EEG and she kept making these long, drawn out yelling noises. Brandon said she sounded like one of those flying dinosaurs (teradactyl???). It was hilarious. She kept smiling at the doctor and just wanted to explore his whole office. Actually, she was in an exploratory mood the entire day. She sat up so well and was reaching for all her toys around her. She is really starting to stretch those arms and look beyond than what is just in front of her. Today is the best day she has ever had!!! My heart is filled with so much joy and hope right now!!!
It has been a very busy week. On Monday, the physical therapist came over to evaluate Sophie (our parent educator referred us to the Missouri First Steps program which helps children from birth - 3 years). The therapist said that Sophie would not qualify for the program because she is not lacking more than 50% in development. Yeah - good news!!! But, Sophie is still able to participate in the program because of her seizure disorder.
On Monday afternoon, I took Sophie to see her pediatrician. Over the weekend, Sophie was sooooo crabby and whined all day long. On Monday morning, I noticed she was scratching at her ear a lot so I thought she might have an ear infection. When her pediatrician examined her, her ears, nose and throat all looked great. She said Sophie was teething and sometimes when the tooth is coming in it hits a nerve causing a shooting pain from your mouth up to your ear. So we gave her tylenol and she has been fine ever since. Yeah - good news!!!
Today, we took Sophie to see the neurologist for another EEG. The results showed that Sophie no longer had hypsarrhythmia (chaotic brain activity)!!! Yeah - GREAT NEWS!!! Her EEG is still slightly abnormal, though. She no longer has areas of suppression but still shows areas of drowsiness. Her background rhythm occasionally is a 5 or 6 but not as much as her neuro would like to see. Also, her left and right side of the brain is working together a lot better. With this information, the neurologist decided not to switch to prednisone. We are going to keep her on ACTH but start the weaning process (60 units for 4 days, 40 units for 5 days, 20 units for 5 days, and 20 units every other day for 10 days). This weaning process is very important. If Sophie's seizure activity does not increase and if her brain activity keeps normalizing during the weaning process, then it means her body does not need the steroid to stay this way. So now we wait and pray that she does okay with the weaning process.
By the way, Sophie had a wonderful day today. Usually, the EEG wears her out, but today she was so incredibly happy and vocal. We met with the doctor after the EEG and she kept making these long, drawn out yelling noises. Brandon said she sounded like one of those flying dinosaurs (teradactyl???). It was hilarious. She kept smiling at the doctor and just wanted to explore his whole office. Actually, she was in an exploratory mood the entire day. She sat up so well and was reaching for all her toys around her. She is really starting to stretch those arms and look beyond than what is just in front of her. Today is the best day she has ever had!!! My heart is filled with so much joy and hope right now!!!
Thursday, June 22, 2006
Orthodic Appt...
Sophie had her orthodic appointment this morning. For those who do not know, Sophie wears a cranial molding helmet for her misshaped head (technical term is plagiocephaly). When Sophie was a newborn, she had torticollis. Torticollis is when the muscles on one side of your neck is tight and does not allow you to turn your head 180 degrees (from left to right). In Sophie's case, her muscles on her right side of her neck were tight so she was always looking right. This caused a flat spot on the right side of her head. She wears the helmet about 22 hours a day and has been wearing the helmet since the beginning of April. She still prefers to look right (most likely because she only sucks her right thumb) but has no problems looking left. We did exercises with her to lengthen and stretch her tight neck muscles.
At Sophie's initial orthodic appointment, her asymmetry was measured at 17mm. At today's appointment, her asymmetry measured at 10mm. It is getting better, slowly but surely.
Sophie had her orthodic appointment this morning. For those who do not know, Sophie wears a cranial molding helmet for her misshaped head (technical term is plagiocephaly). When Sophie was a newborn, she had torticollis. Torticollis is when the muscles on one side of your neck is tight and does not allow you to turn your head 180 degrees (from left to right). In Sophie's case, her muscles on her right side of her neck were tight so she was always looking right. This caused a flat spot on the right side of her head. She wears the helmet about 22 hours a day and has been wearing the helmet since the beginning of April. She still prefers to look right (most likely because she only sucks her right thumb) but has no problems looking left. We did exercises with her to lengthen and stretch her tight neck muscles.
At Sophie's initial orthodic appointment, her asymmetry was measured at 17mm. At today's appointment, her asymmetry measured at 10mm. It is getting better, slowly but surely.
New Plan...
We spoke with Sophie's neurologist yesterday. The new plan is to keep Sophie on 80 units of ACTH until Monday. We will then start 10mg of prednisone (an oral steroid) twice daily on Tuesday. I am so glad that we will no longer have to give Sophie a shot but I am also scared to be taking her off ACTH. I never want to see her have a bad seizure again. ACTH was able to reduce the number of clusters and also the severity of the seizures (she hasn't had a strong seizure since June 7th).
We spoke with Sophie's neurologist yesterday. The new plan is to keep Sophie on 80 units of ACTH until Monday. We will then start 10mg of prednisone (an oral steroid) twice daily on Tuesday. I am so glad that we will no longer have to give Sophie a shot but I am also scared to be taking her off ACTH. I never want to see her have a bad seizure again. ACTH was able to reduce the number of clusters and also the severity of the seizures (she hasn't had a strong seizure since June 7th).
Wednesday, June 21, 2006
Fun Monday? Not compared to Tuesday!!!
Sophie had such a fun day on Tuesday. It all started with Daddy getting up with her at 6am and taking her for a walk and playing with her. Then she took her morning nap at 8:15am. By the time she woke back up at 10:15am, Miss Denise (her parent educator) was ready to play with her.
We all LOVE Miss Denise. She has been so incredibly resourceful. Luckily, big sis Haley and cousin Miranda were over. Miss Denise was showing Haley and Miranda some of the homemade toys she brings with her and before you know it, Haley and Miranda were making Sophie some of her own homemade toys. It was so sweet. Haley even downed a bottle of guava juice so she could use the bottle to make a toy!!!
Sophie was sitting up so well and even rolled over a few times. At one point, we even thought maybe she would roll from her belly to her back (she has never done that before). She was close to doing it but not quite. I have been working with Sophie to reach into a bowl or a container since Miss Denise's last visit. No matter how hard I tried, she just wouldn't do it. Not only would she not do it, she wouldn't even look into the bowl. Then Daddy pops out of his office, sits down on the ground, puts a couple balls in the bowl and puts it in front of Sophie. Sophie reaches down and picks up a ball out of the bowl like it was no big deal. I know this may seem so minor, but, to us, it is a HUGE deal. I was so proud of my little (yet big) Sophie. Finally (and unfortunately), it was time for Miss Denise to go.
Haley and Miranda took turns feeding Sophie her lunch. Haley is so great at picking out Sophie's favorite foods (who knew Sophie would love creamed spinach so much). Later that afternoon, Haley and Miranda read books to Sophie and played with her. Sophie had so much fun.
I even had a wonderful day even though Sophie still had several clusters of seizures. I haven't felt this at peace since the day Sophie was diagnosed with infantile spasms. It just felt like a normal day hanging out with my girls.
Sophie had such a fun day on Tuesday. It all started with Daddy getting up with her at 6am and taking her for a walk and playing with her. Then she took her morning nap at 8:15am. By the time she woke back up at 10:15am, Miss Denise (her parent educator) was ready to play with her.
We all LOVE Miss Denise. She has been so incredibly resourceful. Luckily, big sis Haley and cousin Miranda were over. Miss Denise was showing Haley and Miranda some of the homemade toys she brings with her and before you know it, Haley and Miranda were making Sophie some of her own homemade toys. It was so sweet. Haley even downed a bottle of guava juice so she could use the bottle to make a toy!!!
Sophie was sitting up so well and even rolled over a few times. At one point, we even thought maybe she would roll from her belly to her back (she has never done that before). She was close to doing it but not quite. I have been working with Sophie to reach into a bowl or a container since Miss Denise's last visit. No matter how hard I tried, she just wouldn't do it. Not only would she not do it, she wouldn't even look into the bowl. Then Daddy pops out of his office, sits down on the ground, puts a couple balls in the bowl and puts it in front of Sophie. Sophie reaches down and picks up a ball out of the bowl like it was no big deal. I know this may seem so minor, but, to us, it is a HUGE deal. I was so proud of my little (yet big) Sophie. Finally (and unfortunately), it was time for Miss Denise to go.
Haley and Miranda took turns feeding Sophie her lunch. Haley is so great at picking out Sophie's favorite foods (who knew Sophie would love creamed spinach so much). Later that afternoon, Haley and Miranda read books to Sophie and played with her. Sophie had so much fun.
I even had a wonderful day even though Sophie still had several clusters of seizures. I haven't felt this at peace since the day Sophie was diagnosed with infantile spasms. It just felt like a normal day hanging out with my girls.
Tuesday, June 20, 2006
Fun Monday... (by Sophie)
I had a good day yesterday. Although I still had 2 clusters of seizures, I had so much fun sitting up, playing with my toys, and my big sis fed me my lunch and dinner (boy was I messy). I am taking 2 good naps a day now, which makes my mommy very happy...I wonder what she does when I am sleeping???
I had a good day yesterday. Although I still had 2 clusters of seizures, I had so much fun sitting up, playing with my toys, and my big sis fed me my lunch and dinner (boy was I messy). I am taking 2 good naps a day now, which makes my mommy very happy...I wonder what she does when I am sleeping???
Monday, June 19, 2006
The ups and downs (by Brandon)....
Long time no blog. Since the last update, Sophie has been about the same. She continues to have mild (sometimes almost unnoticeable) seizures after she wakes up. The good news is that it has been 11 days since she has had an episode that upsets her. We were hoping that they would be completely gone by now as we would prefer not to put her on Topamax. The plan would be to start tapering off of the steroids starting in about 8 days. If the seizures aren't gone though, the next medicine would begin.
Yesterday, Sophie revived her ability to sit up unassisted as long as she wants (a father's day present to daddy). She continues to be happy and has found her voice again too. Every time we lay her down to go to sleep or when she wakes, she pushes up on her arms and "screams"/ahhs at herself in the mirror attached to her crib. She also rolled over to her left side for the first time on Saturday.
The weight keeps adding up every day. She is eating about 25oz of food a day (not including her milk every 3 hours), which is much higher than the recommended amount for a baby not on steroids (please send food donations to 1467... -- joking). Actually, if anyone knows of a good chiropractor, let us know.
We hope for a positive step forward today. Thanks for all of the kind words and encouragement; it really does make a difference!
Long time no blog. Since the last update, Sophie has been about the same. She continues to have mild (sometimes almost unnoticeable) seizures after she wakes up. The good news is that it has been 11 days since she has had an episode that upsets her. We were hoping that they would be completely gone by now as we would prefer not to put her on Topamax. The plan would be to start tapering off of the steroids starting in about 8 days. If the seizures aren't gone though, the next medicine would begin.
Yesterday, Sophie revived her ability to sit up unassisted as long as she wants (a father's day present to daddy). She continues to be happy and has found her voice again too. Every time we lay her down to go to sleep or when she wakes, she pushes up on her arms and "screams"/ahhs at herself in the mirror attached to her crib. She also rolled over to her left side for the first time on Saturday.
The weight keeps adding up every day. She is eating about 25oz of food a day (not including her milk every 3 hours), which is much higher than the recommended amount for a baby not on steroids (please send food donations to 1467... -- joking). Actually, if anyone knows of a good chiropractor, let us know.
We hope for a positive step forward today. Thanks for all of the kind words and encouragement; it really does make a difference!
Thursday, June 15, 2006
Sooo Big!!!
Sophie is up to 21 pounds 14 ounces. She gained almost a pound in the last week. Her belly is getting so big that she almost has an outie. All the adorable summer outfits I bought her no longer fit. She is wearing size 18 month clothes.
She started off having a wonderful day but then she woke up at 11pm and had over 60 seizures. On the other hand, she only had 2 clusters today.
Sophie is up to 21 pounds 14 ounces. She gained almost a pound in the last week. Her belly is getting so big that she almost has an outie. All the adorable summer outfits I bought her no longer fit. She is wearing size 18 month clothes.
She started off having a wonderful day but then she woke up at 11pm and had over 60 seizures. On the other hand, she only had 2 clusters today.
Wednesday, June 14, 2006
Bang, Bang
Sophie started banging her blocks against the container to make loud noises. Usually she would just try to eat them. She also started to purposely drop her toys from her highchair. It is so great to see that she is starting to understand cause and effect.
Aunt Erin came over today and brought lots of new toys for Sophie to play with. With as much time as we spend at home now, I don't know if Sophie or I was more excited to play with these new toys. She was also sitting up better today. It seems each day, she sits up a little better. It is almost like she forgot how to sit up and she is learning all over again.
We took Sophie to see her neurologist this morning (just an appointment - no EEG, no blood test). Since her number of clusters have stayed down and her seizures are mild, he still wants to keep her on ACTH for the next 2 weeks and then start the wean. If she is still having seizures at that point, then we will start an oral antiepileptic drug (probably Topamax). He had the results from 3 out of the 4 additional blood tests from the last appointment. They all came back negative. He also thought that Sophie was waking up in the middle of the night because she is hungry (she woke up again at 3:45am). Between nursing and baby food, she eats 9 times a day!!!
Sophie started banging her blocks against the container to make loud noises. Usually she would just try to eat them. She also started to purposely drop her toys from her highchair. It is so great to see that she is starting to understand cause and effect.
Aunt Erin came over today and brought lots of new toys for Sophie to play with. With as much time as we spend at home now, I don't know if Sophie or I was more excited to play with these new toys. She was also sitting up better today. It seems each day, she sits up a little better. It is almost like she forgot how to sit up and she is learning all over again.
We took Sophie to see her neurologist this morning (just an appointment - no EEG, no blood test). Since her number of clusters have stayed down and her seizures are mild, he still wants to keep her on ACTH for the next 2 weeks and then start the wean. If she is still having seizures at that point, then we will start an oral antiepileptic drug (probably Topamax). He had the results from 3 out of the 4 additional blood tests from the last appointment. They all came back negative. He also thought that Sophie was waking up in the middle of the night because she is hungry (she woke up again at 3:45am). Between nursing and baby food, she eats 9 times a day!!!
Tuesday, June 13, 2006
Uggg...
It's so frustrating that the seizures have not stopped. I just want them to go away. As you know, Sophie is teething, so it's hard to tell what is bothering her nowadays. She had 3 (maybe 4) clusters today. Sometimes, the seizures are so mild that you just don't know (or maybe we just want to believe they are not seizures). We have an appointment to meet with her neurologist tomorrow morning, so we will be discussing what our next options are.
On a lighter note... we all went out to dinner tonight with Brandon's family. We went to a restaurant that had an outdoor patio. Considering it is a Tuesday night, it was pretty empty so we didn't have to worry about anyone getting too close to Sophie. Of course, I brought antibacterial wipes to wipe down everything that Sophie might touch. I am so ultra paranoid that she is going to get sick. We went out to dinner to wish Jason (Brandon's twin brother) good luck on his upcoming big race (Primal Quest) in Utah/Colorado. It was a gorgeous evening and it was so nice to get out of the house together.
Sophie got up again in the middle of the night (3:45am). She was happy as could be. She was smiling and ready to play. It's amazing how this illness changes your perspective on life. Before she was sick, I would have been like "Sophie what are you doing up so early - I'm too tired for this!!!" Okay, I still thought that but instead of trying to put her right back to sleep, I smiled back at her and told her how much I love her and gave her great big hugs. My love for her grows deeper by the minute.
It's so frustrating that the seizures have not stopped. I just want them to go away. As you know, Sophie is teething, so it's hard to tell what is bothering her nowadays. She had 3 (maybe 4) clusters today. Sometimes, the seizures are so mild that you just don't know (or maybe we just want to believe they are not seizures). We have an appointment to meet with her neurologist tomorrow morning, so we will be discussing what our next options are.
On a lighter note... we all went out to dinner tonight with Brandon's family. We went to a restaurant that had an outdoor patio. Considering it is a Tuesday night, it was pretty empty so we didn't have to worry about anyone getting too close to Sophie. Of course, I brought antibacterial wipes to wipe down everything that Sophie might touch. I am so ultra paranoid that she is going to get sick. We went out to dinner to wish Jason (Brandon's twin brother) good luck on his upcoming big race (Primal Quest) in Utah/Colorado. It was a gorgeous evening and it was so nice to get out of the house together.
Sophie got up again in the middle of the night (3:45am). She was happy as could be. She was smiling and ready to play. It's amazing how this illness changes your perspective on life. Before she was sick, I would have been like "Sophie what are you doing up so early - I'm too tired for this!!!" Okay, I still thought that but instead of trying to put her right back to sleep, I smiled back at her and told her how much I love her and gave her great big hugs. My love for her grows deeper by the minute.
Monday, June 12, 2006
Teething
Sophie is teething. She chews on everything. She woke up at 1:45am and did not go back to sleep until 3am. Then she woke up again at 5:45am. This time there was no going back to sleep. She was tired and crabby but she didn't want to sleep. She wouldn't sit up either. I called her pediatrician's office and they suggested Tylenol for her teething. It worked - about 30 minutes after giving her Tylenol, she slept from 11:15am to 1:45pm. She was a whole different person after that nap. She was happy and she would sit up!!! I was worried there for awhile.
Grandma Debbie rescued me today. She brought us lunch and watched Sophie so I could get some shopping done. Sometimes I get so stir crazy not being able to take Sophie out with me. I don't think I've mentioned this before but one of the side effects of ACTH is that it can weaken the immune system. Therefore, we don't take Sophie to any enclosed public areas for fear of her getting sick. We can take her to the park and other outdoor places. Thank goodness it is summer!!!
Sophie was up to 3 clusters again today. They are so mild that sometimes it is so hard to tell if she is having a seizure. I wonder how many more she is actually having that we're not catching.
Thank you all for your posts, e-mails and phone calls. It warms our hearts to know how much our friends and family are thinking about us and praying for us. It helps keep us strong and positive. We are blessed to have so many people care!!!
Sophie is teething. She chews on everything. She woke up at 1:45am and did not go back to sleep until 3am. Then she woke up again at 5:45am. This time there was no going back to sleep. She was tired and crabby but she didn't want to sleep. She wouldn't sit up either. I called her pediatrician's office and they suggested Tylenol for her teething. It worked - about 30 minutes after giving her Tylenol, she slept from 11:15am to 1:45pm. She was a whole different person after that nap. She was happy and she would sit up!!! I was worried there for awhile.
Grandma Debbie rescued me today. She brought us lunch and watched Sophie so I could get some shopping done. Sometimes I get so stir crazy not being able to take Sophie out with me. I don't think I've mentioned this before but one of the side effects of ACTH is that it can weaken the immune system. Therefore, we don't take Sophie to any enclosed public areas for fear of her getting sick. We can take her to the park and other outdoor places. Thank goodness it is summer!!!
Sophie was up to 3 clusters again today. They are so mild that sometimes it is so hard to tell if she is having a seizure. I wonder how many more she is actually having that we're not catching.
Thank you all for your posts, e-mails and phone calls. It warms our hearts to know how much our friends and family are thinking about us and praying for us. It helps keep us strong and positive. We are blessed to have so many people care!!!
Sunday, June 11, 2006
8 months old today
Sophie turned 8 months old today. Wow - I can't believe it has already been 8 months. I was looking at pictures of a newborn baby and it's almost hard for me to remember Sophie that little. Probably since she didn't stay that little for long. She grew so fast - always at least 90% on weight and height. I just love to kiss those chubby little cheeks.
Sophie didn't have that good of a day today. She had 3 clusters of seizures. It started out as such a promising day. She didn't wake up until 7am (she had been waking up at 5:30am the last couple of days). She didn't have any seizures in the morning. We thought "was today the day - no more seizures". Unfortunately, she had a cluster at 12:30pm, 3:45pm and 7:30pm. In the late afternoon, she was fussy and didn't want to sit up. Her appetite today was voracious - she ate more today than ever before. I wonder how much chubbier those cheeks can get before they pop ;)
At least all of her seizures have still been relatively mild. We can even get her to smile while she is having them. She has always been such a happy, laid-back baby. I remember when she was in the hospital the first night. It was around 11pm and the nurses were trying to start an iv. They had to stick her 3 times before they were able to get it in - it took about 45 minutes. Well, she fell asleep between each time they stuck her. She is such a great baby!!! Oh, how she just fills my heart with so much love!!! I am so proud of her!!!
Sophie turned 8 months old today. Wow - I can't believe it has already been 8 months. I was looking at pictures of a newborn baby and it's almost hard for me to remember Sophie that little. Probably since she didn't stay that little for long. She grew so fast - always at least 90% on weight and height. I just love to kiss those chubby little cheeks.
Sophie didn't have that good of a day today. She had 3 clusters of seizures. It started out as such a promising day. She didn't wake up until 7am (she had been waking up at 5:30am the last couple of days). She didn't have any seizures in the morning. We thought "was today the day - no more seizures". Unfortunately, she had a cluster at 12:30pm, 3:45pm and 7:30pm. In the late afternoon, she was fussy and didn't want to sit up. Her appetite today was voracious - she ate more today than ever before. I wonder how much chubbier those cheeks can get before they pop ;)
At least all of her seizures have still been relatively mild. We can even get her to smile while she is having them. She has always been such a happy, laid-back baby. I remember when she was in the hospital the first night. It was around 11pm and the nurses were trying to start an iv. They had to stick her 3 times before they were able to get it in - it took about 45 minutes. Well, she fell asleep between each time they stuck her. She is such a great baby!!! Oh, how she just fills my heart with so much love!!! I am so proud of her!!!
Saturday, June 10, 2006
More good news
Sophie only had 2 clusters on both Friday and Saturday (that is 3 days in a row now). We talked with her neurologist on Friday and he said she will stay on the ACTH at least until June 27th before we start to wean her off the drug. The weaning process will then take about 2 weeks.
She also is sitting up completely unsupported. She no longer falls over. If she gets tired of sitting up (which is usually after at least 20 minutes), she starts fussing to let us know she is ready for something else. She is also getting better with picking up small objects. We've been putting these little fruit puffs on her tray and she would swipe them with her right hand. Well, the few she would pick up would never make it to her mouth before her thumb. That thumb!!! But the other day, she started using her left hand to pick up the fruit puffs. She actually used her thumb and index finger (instead of just swiping at them) to pick up a fruit puff and it made it in her mouth. Oh, the little things a baby does that can make us so excited.
Sophie only had 2 clusters on both Friday and Saturday (that is 3 days in a row now). We talked with her neurologist on Friday and he said she will stay on the ACTH at least until June 27th before we start to wean her off the drug. The weaning process will then take about 2 weeks.
She also is sitting up completely unsupported. She no longer falls over. If she gets tired of sitting up (which is usually after at least 20 minutes), she starts fussing to let us know she is ready for something else. She is also getting better with picking up small objects. We've been putting these little fruit puffs on her tray and she would swipe them with her right hand. Well, the few she would pick up would never make it to her mouth before her thumb. That thumb!!! But the other day, she started using her left hand to pick up the fruit puffs. She actually used her thumb and index finger (instead of just swiping at them) to pick up a fruit puff and it made it in her mouth. Oh, the little things a baby does that can make us so excited.
Friday, June 09, 2006
Yeah for Sophie!!!
Yesterday morning, we were suppose to start Sophie on twice daily tablets of prednisone (10mg each). That meant no more daily injections (good news that we didn't have to give her anymore shots - bad news that we had to start a new drug). Well, when we woke up yesterday morning, we realized she didn't wake up in the middle of the night with any seizures. Actually, she had not had a seizure since 2pm on Wednesday (she had a total of 4 clusters on Wednesday - down from around 5-6 that she usually has). She had a small cluster when she woke up around 6:45am Thursday morning - so that meant she went almost 17 hours without a seizure (as far as we know - sometimes they can be so small that they are almost undetectable)!!!
So we decided to give ACTH one more day. What a great day it was!!! Sophie was so happy for most of the day, she was sitting up so well, and best of all - only 2 clusters!!! She had one cluster at 6:45am with mild seizures and another cluster at 2pm with very mild seizures.
Well, that brings us to today. She woke up at 5:45am this morning and had extremely mild seizures. We went ahead and gave her another injection of ACTH. Now we wait and pray. Yesterday was such an incredible day...
Yesterday morning, we were suppose to start Sophie on twice daily tablets of prednisone (10mg each). That meant no more daily injections (good news that we didn't have to give her anymore shots - bad news that we had to start a new drug). Well, when we woke up yesterday morning, we realized she didn't wake up in the middle of the night with any seizures. Actually, she had not had a seizure since 2pm on Wednesday (she had a total of 4 clusters on Wednesday - down from around 5-6 that she usually has). She had a small cluster when she woke up around 6:45am Thursday morning - so that meant she went almost 17 hours without a seizure (as far as we know - sometimes they can be so small that they are almost undetectable)!!!
So we decided to give ACTH one more day. What a great day it was!!! Sophie was so happy for most of the day, she was sitting up so well, and best of all - only 2 clusters!!! She had one cluster at 6:45am with mild seizures and another cluster at 2pm with very mild seizures.
Well, that brings us to today. She woke up at 5:45am this morning and had extremely mild seizures. We went ahead and gave her another injection of ACTH. Now we wait and pray. Yesterday was such an incredible day...
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