I'm feeling a bit frustrated. I took Luella to watch Ryker play soccer last night and, wouldn't you know it, another seizure. She was having so much fun kicking a soccer ball around with big brother Burke. She had a seizure the last time I tried to watch Ryker play soccer too. :( I guess we'll stay home next time.
On the plus side, Luella's seizure was really short and she bounced back quickly after just one dose of midazolam. We even kept our plans to try to eat out after soccer. We went to McDonald's. Luella could have 4 chicken nuggets with ranch and water from McDs and then a mozzarella cheese stick and sugar-free jello from home. Thankfully she's never been a french fry eater so she didn't mind seeing others eating their food.
I just want to ask you all for specific prayers that this diet would start working for Luella. The seizure last night makes two now this week... kind of the opposite direction we hoped to be going. Thank you.
Friday, September 28, 2012
Sunday, September 23, 2012
Diet going well but a seizure tonight
Luella's diet has been going very well. One week completed! We had hoped to see some improvements in the frequency of Luella's seizures right away but she ended up having a seizure right before bed tonight - another strange one that took about a dose and a half of midazolam to stop. (Half of a dose came out of her nose when I was giving it so it didn't have a chance to work.) Thankfully she did come out of it, but again it was one of those where you are left wondering if it really IS done. I was glad Jim was home with me this time! It's been 10 days since the last one.
Although it was a bummer to see Luella have a seizure tonight after being on the diet a week, we know it might take some time to see the results we hope for too. We plan on sticking with the diet for two months before we decide if it is really helping.
I've been really pleased with how Luella is handling the diet. She has asked for sweets a few times but doesn't really complain too much when I have to tell her no. One thing that helps is rounding out the carbs for each meal with a couple of grapes or a small amount of yogurt. I think she feels she is still getting a little "dessert". We tried Salmon and Mock Garlic Mashed Potatoes (mashed cauliflower) one night. Luella actually didn't seem to mind it and ate most of her food. Everyone else... not so much. I'm sorry, but those "mashed potatoes" were not good! Thankfully since Luella seemed to like them okay, I might be able to use them as a sub when we have real potatoes some time. I also made Spaghetti Squash one night, we used the squash in place of our usual noodles with hamburger and spaghetti sauce. It wasn't bad and Luella really enjoyed it!
Jim even came across a recipe for something called Oopsie Rolls - basically a very low carb bread substitute. The only ingredients are eggs, cream of tartar and cream cheese. They are amazing!! Less than 1 gram of carb per "bun"!! And the possibilities are endless! Luella ate some with butter and garlic - as garlic bread with her "spaghetti," and today I made her french toast with them!! We all tried a bite and it was very good!
I've been marking lots of other recipes to try. I tried making some chocolate chip cookies today. Luella got to have one for a snack. They are okay but VERY crumbly. I'm on the lookout for a different recipe.
Thank you again for your continued prayers!!
I'll leave you with a SMILE tonight straight from Luella. Luella drew this smilie face all by herself on Friday!! She was so proud, carrying it in the kitchen to show me the "face" she drew!! She loves to draw!
Although it was a bummer to see Luella have a seizure tonight after being on the diet a week, we know it might take some time to see the results we hope for too. We plan on sticking with the diet for two months before we decide if it is really helping.
I've been really pleased with how Luella is handling the diet. She has asked for sweets a few times but doesn't really complain too much when I have to tell her no. One thing that helps is rounding out the carbs for each meal with a couple of grapes or a small amount of yogurt. I think she feels she is still getting a little "dessert". We tried Salmon and Mock Garlic Mashed Potatoes (mashed cauliflower) one night. Luella actually didn't seem to mind it and ate most of her food. Everyone else... not so much. I'm sorry, but those "mashed potatoes" were not good! Thankfully since Luella seemed to like them okay, I might be able to use them as a sub when we have real potatoes some time. I also made Spaghetti Squash one night, we used the squash in place of our usual noodles with hamburger and spaghetti sauce. It wasn't bad and Luella really enjoyed it!
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| Oopsie Rolls! |
I've been marking lots of other recipes to try. I tried making some chocolate chip cookies today. Luella got to have one for a snack. They are okay but VERY crumbly. I'm on the lookout for a different recipe.
Thank you again for your continued prayers!!
I'll leave you with a SMILE tonight straight from Luella. Luella drew this smilie face all by herself on Friday!! She was so proud, carrying it in the kitchen to show me the "face" she drew!! She loves to draw!
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| Luella drew this smilie all by herself!! |
Monday, September 17, 2012
Here we go....
We have officially started Luella on her new diet!! Luella is doing the Low Glycemic Index Treatment (LGIT) diet to see if we can get better seizure control.
In case you've missed some previous posts, the LGIT consists of eating only low glycemic AND low carbohydrate foods. Luella will be limited to 60 grams of carbs total during a day. Just to give you an idea of how many carbs are in the foods you eat on a daily basis... 1 slice of 100% whole wheat bread has 13g, a serving of potato chips has 15g, a can of Mt Dew has 46g, one large order of McDonald's french fries has 63g!!! Luella will only be allowed to have about 15g per meal (15x3=45g) and the remaining 15g each day will be for snacks. Eating low carb is a bit challenging but taking into account the gylcemic index makes things even more challenging. The glycemic index (GI) is a measurement of glucose (blood sugar) level increase from carbohydrate consumption. A low-GI food will release glucose more slowly and steadily.
This basically cuts out sugary snacks and drinks, grain-based foods (pasta, bread), some fruits, etc... Luella will be able to eat meat, cheeses, some veggies, and some fruits (in small quantities - she got 6 grapes at breakfast with her eggs!). I am still exploring, trying to find some more ideas but we have a good platform to start right now.
Thinking back to when we first started thinking about dietary approaches to seizure control, I actually didn't want to think about it. We had talked about doing the Ketogenic Diet a year ago last summer and when we didn't - I was relieved. Then this spring when we talked about the LGIT with Luella's neurologist, I didn't want to think about it again. I have done a lot of praying about this. I know it will be hard on Luella to not have the cookies / candy / ice cream and also a change for our family since we can't eat those things in front of Luella. I'm happy to say that I feel pretty good about starting this diet now, not "great", but I'm positive about it and I hope that we see some reduction in Luella's seizures. Maybe having two seizures last week, and the last one giving me such a scare, gave me the push I needed!! Thanks for all of your prayers too to get me to this comfortable point!!
This past weekend was Luella's last hurrah - getting to have cake and LOTS of frosting at her baby cousin's 1st birthday party! My next challenge will be trying to figure out how to make and decorate a cake for Luella's 3rd birthday next month and how (or if) we go Trick or Treating! We are committed to trying this for a couple of months before we decide if it's working or not.
In case you've missed some previous posts, the LGIT consists of eating only low glycemic AND low carbohydrate foods. Luella will be limited to 60 grams of carbs total during a day. Just to give you an idea of how many carbs are in the foods you eat on a daily basis... 1 slice of 100% whole wheat bread has 13g, a serving of potato chips has 15g, a can of Mt Dew has 46g, one large order of McDonald's french fries has 63g!!! Luella will only be allowed to have about 15g per meal (15x3=45g) and the remaining 15g each day will be for snacks. Eating low carb is a bit challenging but taking into account the gylcemic index makes things even more challenging. The glycemic index (GI) is a measurement of glucose (blood sugar) level increase from carbohydrate consumption. A low-GI food will release glucose more slowly and steadily.
This basically cuts out sugary snacks and drinks, grain-based foods (pasta, bread), some fruits, etc... Luella will be able to eat meat, cheeses, some veggies, and some fruits (in small quantities - she got 6 grapes at breakfast with her eggs!). I am still exploring, trying to find some more ideas but we have a good platform to start right now.
Thinking back to when we first started thinking about dietary approaches to seizure control, I actually didn't want to think about it. We had talked about doing the Ketogenic Diet a year ago last summer and when we didn't - I was relieved. Then this spring when we talked about the LGIT with Luella's neurologist, I didn't want to think about it again. I have done a lot of praying about this. I know it will be hard on Luella to not have the cookies / candy / ice cream and also a change for our family since we can't eat those things in front of Luella. I'm happy to say that I feel pretty good about starting this diet now, not "great", but I'm positive about it and I hope that we see some reduction in Luella's seizures. Maybe having two seizures last week, and the last one giving me such a scare, gave me the push I needed!! Thanks for all of your prayers too to get me to this comfortable point!!
This past weekend was Luella's last hurrah - getting to have cake and LOTS of frosting at her baby cousin's 1st birthday party! My next challenge will be trying to figure out how to make and decorate a cake for Luella's 3rd birthday next month and how (or if) we go Trick or Treating! We are committed to trying this for a couple of months before we decide if it's working or not.
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| Enoying CAKE! |
Friday, September 14, 2012
Thursday was a difficult day...
Yesterday (Thursday) was a difficult day. It started out with Luella getting to go to school (ECFE) for the first time and ended with a seizure that had me in the van ready to race to the ER.
Luella was so excited to go to ECFE yesterday! She's been talking about going to "school" for a couple of weeks. Since we are starting Luella on the LGIT diet (low glycemic index treatment) soon we had to think of how we wanted to handle snack time at school. We decided to let Luella pick out her own lunchbox that she can take to school with her own snack. Luella and I did a little online shopping and looked at several designs. Luella fell in love with a cute little owl lunchbox with a matching backpack to carry it in. She looks SO CUTE wearing that tiny little owl backpack. Once she got it on she would barely take it off!
We got to ECFE and Luella had a GREAT time playing with the toys there. She spent quite a bit of time playing in the "kitchen" and wouldn't let go of the babies once she discovered them. When it was time for the mommies to separate I got her situated with her snack. She looked so sweet sitting there with her little lunchbox, ready for Miss Debbie to read them a story. I wasn't prepared for what happened when I left the room. I was so concerned with educating the staff on recognizing a seizure and for her safety there I hadn't really thought about my own emotions. When I shut that door I just broke down and cried. I felt like it was the first step in a whole new world for Luella - thinking of her being at school!! How will I handle THAT!! This is just a baby step!! I knew Luella was safe and being well-cared for but the thought of letting my baby go, my baby that has barely ever left Jim's or my side, this is going to be hard...
On the plus side, Luella didn't care one bit that I left her. She was happy to be there and excited to play! When we regrouped at the end to sing songs Luella enjoyed listening to the songs but really didn't join in. Later, after supper, she was sitting in her high chair belting out "Twinkle Twinkle Little Star" and "The Wheels on the Bus" all with actions!! It was super cute. We called daddy, who is in New York for work, and she sang to him a little bit.
Fast forward to about an hour after supper... Luella was with me in the playroom and we were getting starting on picking up a box of small toys that was dumped out. Luella stood there looking down at the toys, I looked at her and saw her drifting away. I grabbed her and tried getting her attention but the seizure was starting. This wasn't supposed to happen... she just had a seizure on Sunday night and Jim was gone!! I gave her a dose of midazolam - nothing. Another dose - nothing. She wouldn't stop! I called the ER and told them I was coming. I called Jim's parents and they were on their way to be with the other kids. I gathered our things quickly and wrapped Luella (who was only in a diaper) in a blanket and raced to the van. I was about to start the van and Luella made a sound. I asked her if she was okay now and she very quietly said "ah huh". I cried! I hate this. Why does this have to happen to her?!
We went back in the house. And then I wasn't really sure if the seizure had stopped. Her eyes were little slits and still shifting although she would occasionally grunt in response to a question. Why couldn't this be an "easy" seizure when I'm here alone with the kids!!?? I called Jim. Trying to figure out what to do. Jim's parents got there then too. Now I think maybe the seizure is really done. I called the ER again and talked to the sweet nurse who said they were there if we needed them. I just didn't want to take her if the seizure was done. Then we'd be there - she'd be getting poked and prodded and who knows how long we'd be there. I was pretty sure the seizure was done. I thought the double dose of midazolam probably was what was making her so druggy. Grandma held her while I got the kids tucked in bed then about 20 minutes later the pulse ox was alarming. Luella's oxygen dropped to 80% and her heart rate was up to the 140s. That lasted about 3 minutes. I was about to get the O2 on her and then she kind of sat herself up and things went back to normal. So??? Was she still seizing all that time? Was that just something weird? She seemed to fall into a deep sleep after that. Grandma held her a little longer then I took her so they could head home since all was quiet.
I held Luella about 30 more minutes then decided to lay her down for the night. She did wake up while I was changing her and getting her ready for bed. We rocked then did our normal bedtime routine. "Luella, you know mommy loves you?" Luella - "ah huh". "Have sweet dreams." Luella - "k". She'll be okay.
She had somewhat restless sleep; moving around often during the night. I let her sleep a little longer than usual this morning. When I went to wake her, she sat right up and has been talking non-stop all morning. Thank you Lord!! Days like yesterday keep me in constant prayer all day long. I could not get through it any other way. Thank you to all of you who continually lift our family up in prayer. We feel it! Pray for a miracle for Luella.
I'm so glad Jim will be home later tonight!! AND I'm SO glad to have my in-laws only a few minutes away now!!
We got to ECFE and Luella had a GREAT time playing with the toys there. She spent quite a bit of time playing in the "kitchen" and wouldn't let go of the babies once she discovered them. When it was time for the mommies to separate I got her situated with her snack. She looked so sweet sitting there with her little lunchbox, ready for Miss Debbie to read them a story. I wasn't prepared for what happened when I left the room. I was so concerned with educating the staff on recognizing a seizure and for her safety there I hadn't really thought about my own emotions. When I shut that door I just broke down and cried. I felt like it was the first step in a whole new world for Luella - thinking of her being at school!! How will I handle THAT!! This is just a baby step!! I knew Luella was safe and being well-cared for but the thought of letting my baby go, my baby that has barely ever left Jim's or my side, this is going to be hard...
On the plus side, Luella didn't care one bit that I left her. She was happy to be there and excited to play! When we regrouped at the end to sing songs Luella enjoyed listening to the songs but really didn't join in. Later, after supper, she was sitting in her high chair belting out "Twinkle Twinkle Little Star" and "The Wheels on the Bus" all with actions!! It was super cute. We called daddy, who is in New York for work, and she sang to him a little bit.
Fast forward to about an hour after supper... Luella was with me in the playroom and we were getting starting on picking up a box of small toys that was dumped out. Luella stood there looking down at the toys, I looked at her and saw her drifting away. I grabbed her and tried getting her attention but the seizure was starting. This wasn't supposed to happen... she just had a seizure on Sunday night and Jim was gone!! I gave her a dose of midazolam - nothing. Another dose - nothing. She wouldn't stop! I called the ER and told them I was coming. I called Jim's parents and they were on their way to be with the other kids. I gathered our things quickly and wrapped Luella (who was only in a diaper) in a blanket and raced to the van. I was about to start the van and Luella made a sound. I asked her if she was okay now and she very quietly said "ah huh". I cried! I hate this. Why does this have to happen to her?!
We went back in the house. And then I wasn't really sure if the seizure had stopped. Her eyes were little slits and still shifting although she would occasionally grunt in response to a question. Why couldn't this be an "easy" seizure when I'm here alone with the kids!!?? I called Jim. Trying to figure out what to do. Jim's parents got there then too. Now I think maybe the seizure is really done. I called the ER again and talked to the sweet nurse who said they were there if we needed them. I just didn't want to take her if the seizure was done. Then we'd be there - she'd be getting poked and prodded and who knows how long we'd be there. I was pretty sure the seizure was done. I thought the double dose of midazolam probably was what was making her so druggy. Grandma held her while I got the kids tucked in bed then about 20 minutes later the pulse ox was alarming. Luella's oxygen dropped to 80% and her heart rate was up to the 140s. That lasted about 3 minutes. I was about to get the O2 on her and then she kind of sat herself up and things went back to normal. So??? Was she still seizing all that time? Was that just something weird? She seemed to fall into a deep sleep after that. Grandma held her a little longer then I took her so they could head home since all was quiet.
I held Luella about 30 more minutes then decided to lay her down for the night. She did wake up while I was changing her and getting her ready for bed. We rocked then did our normal bedtime routine. "Luella, you know mommy loves you?" Luella - "ah huh". "Have sweet dreams." Luella - "k". She'll be okay.
She had somewhat restless sleep; moving around often during the night. I let her sleep a little longer than usual this morning. When I went to wake her, she sat right up and has been talking non-stop all morning. Thank you Lord!! Days like yesterday keep me in constant prayer all day long. I could not get through it any other way. Thank you to all of you who continually lift our family up in prayer. We feel it! Pray for a miracle for Luella.
I'm so glad Jim will be home later tonight!! AND I'm SO glad to have my in-laws only a few minutes away now!!
Sunday, September 9, 2012
Yes another one.
Luella did have another seizure tonight. Thankfully it was short and only took one dose of midazolam. She didn't even sleep that long right after the seizure. And although really drowsey, she was able to have her normal bedtime routine and went right to bed tonight. I hate those seizures and seeing her turning blue!! Of course I'm ready with the oxygen but thankfully we didn't need it this time.
Busy week this week with developmental evalutions and a meeting with a speech therapist. Luella will also be going to "school" starting on Thursday... actually ECFE (Early Childhood Family Education) with mommy! The real BIG STEP here is that I will only be with her part of the time, then the parents break up to a separate room for a parent topic. I met with the staff at school last week to educate them on what Luella's seizures are like and I feel confident that she will be well cared for. It's still going to be difficult for me though. We also might try the library Lap Time Storytime on Fridays. Luella will have a busy week!
I wanted to leave you with a precious picture of Luella with her cousin Lucia. They visited last weekend and the girls had so much fun. Luella is a year older than Lucia and they only get to see each other a couple times during the summer then they live far away during the rest of the year. It was fun to see them together!
Busy week this week with developmental evalutions and a meeting with a speech therapist. Luella will also be going to "school" starting on Thursday... actually ECFE (Early Childhood Family Education) with mommy! The real BIG STEP here is that I will only be with her part of the time, then the parents break up to a separate room for a parent topic. I met with the staff at school last week to educate them on what Luella's seizures are like and I feel confident that she will be well cared for. It's still going to be difficult for me though. We also might try the library Lap Time Storytime on Fridays. Luella will have a busy week!
I wanted to leave you with a precious picture of Luella with her cousin Lucia. They visited last weekend and the girls had so much fun. Luella is a year older than Lucia and they only get to see each other a couple times during the summer then they live far away during the rest of the year. It was fun to see them together!
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| Cousins - Lucia and Luella |
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