2 Seizures Christmas Day

Merry Christmas everyone!! Hope you all enjoyed some time with family and friends this Christmas as we celebrate the birth of our Savior!

Luella excited to find a number 3! "It's how old you are" she says!!

Luella's day started out great! Santa brought her an art easel with a drawing board on one side and magnet board on the other. She had so much fun arranging the number and letter magnets. After some time opening gifts at home we went on to SD to be with my side of the family. Luella made it through lunch and opening gifts there and while we were all posing for a family picture she had a seizure. She was calm, hadn't been running or excited... hard to say what triggered it. It had been a week on Sunday since her last seizure so she was "due" I guess. I always worry about those seizures at my parents' farm since there isn't a hospital close by. Thankfully it was quick and stopped with one dose of her rescue med. We headed home after her seizure and she slept the entire way.

At home she was cranky. We still had some gifts to open that we didn't have time for in the morning. She wasn't really in the mood anymore. She headed back to her new art easel and was playing with the magnets again. I couldn't see her face on the other side of the easel but I could see her feet. She was moving around a little then she just stopped. I went and looked right away and she was having another seizure!! :( Poor baby. Again it stopped with one dose of her rescue med. And she slept AGAIN! We continued to open the other gifts while she slept on the floor beside me. I basically woke her up to put her to bed tonight. She slept so much today, I hope she sleeps all night. She has one more gift to open tomorrow - her bigger gift from mommy and daddy. I hope she will be feeling lots better in the morning... I can't wait to see her reaction!

So, not the "perfect" Christmas by a long shot, but I guess I just need to remember how lucky we are. So many other Dravet parents deal with watching their precious children having multiple seizures EVERY day! Or have Dravet kids who aren't even able to open a Christmas gift or play with the toys they are given. We are truly blessed with our Luella!

Please pray as we prepare to start the GAPS diet in January!

Snow FUN!

We thought we'd attempt some outdoor snow fun today with the kids. Jim's been anxious to take the kids sledding since we actually have some snow now. Luella hasn't been out to play since she had a seizure after trying to play in the little bit of snow we got a couple weeks ago. We prayed for seizure-free snow fun and God answered our prayers!! Luella had the best time!! She has never been sledding before - at least not down a big hill and she giggled the whole way down! She had fun sledding, rolling in the snow, making a snow angel and throwing snow balls. I love to see her smiling and being able to do some normal kid things without having things cut short by another seizure! We were able to be outside for a hour and then went home to warm up with some hot chocolate - which Luella thoroughly enjoyed too!

I didn't get a chance to blog on Sunday, but Luella did have a seizure earlier this week on Sunday evening after the kids' Christmas program at church. It had been one week since the last one. Much better than the three the previous week!

We took a bunch of pictures of the kids having fun today... I'll leave you with a few of Luella's fun afternoon! Thank you for all your love and support and all the PRAYERS!!

Ready to head outside!

First sled ride.

SO much fun!

A girl having a lot of fun!

Happy times!

Throwing snowballs!

Warming up with some yummy hot chocolate!

Dravet on CNN

Dravet Syndrome is getting some coverage on major news networks. This is a story about a dad, Jason David, and his son Jayden. We met Jason at the Dravet conference in August.

http://www.cnn.com/2012/12/10/health/medical-marijuana-child/

3 Seizures Over the Weekend

Luella went just over a week seizure-free but then ended up having two seizures on Saturday - one after breakfast and one in the afternoon while playing outside in the snow. The third one was Sunday night after supper. All three seizures were very short. They seemed to stop almost immediately after giving her midazolam. Saturday was kind of a crummy day for her though. Most of her seizures tend to be in the evening and she can just sleep off the effects of the seizure during the night. On Saturday after her morning seizure she was quite cranky and restless even when being held. After lunch and a nap, she was anxious to play in the snow but after only 10-15 minutes outside she had another seizure. After that second seizure she slept a couple hours and woke up feeling better.

Sunday night's seizure was around 7:00. She had been running and playing with the kids after supper. She fell with that seizure but thankfully didn't bump her head too hard. She slept a little bit and woke up in time to get ready for bed. She went right to sleep at bedtime.

Hopefully the rest of this week can be seizure-free now!! She is really excited about all this snow. Hopefully she won't have a seizure every time she tries to play in it!

Ashlyn and Luella playing outside.

Purple Prayers

I meant to post this on Friday - the last day of November, the last day of Epilepsy Awareness month. Unfortunately, waking up to Luella having a seizure on Friday morning put most of the day's priorities in a different place.

I just really wanted to say thank you for all the PURPLE PRAYERS for Luella and all those with epilepsy - not only in the month of November but the whole year through! Many of you made a special effort to wear purple in November and not just wear purple but to tell others why you were wearing purple. My good friend explained the meaning of purple in November to her boys and told them when they see something purple to say a quick prayer for a cure for epilepsy and Dravet. Things like that warm my heart!!

Our local newspaper ran a story on Luella and our desire for more awareness for epilepsy. I've had older people tell me about relatives who had epilepsy half a century ago and how it was "hush, hush" and nobody talked about it. I truly believe that increasing epilepsy awareness will bring us closer to a cure.

Thanks everyone!!

Luella with her ECFE teachers. They all surprised us by wearing purple on November 1st!

My Bible study group joined together and wore purple too!

Here we go... #3!! Early AM seizure with fever.

Luella's pulse ox alarm went off about 6:20 this morning. I ran to her room and her O2 was in the 40% range, heart rate over 150. I rolled her to her back and she was blue. Jim ran to get rescue meds and by the time he got upstairs things were improving and she was coming out of it. NO rescue meds given! Although we can't be sure how long the seizure lasted since I don't know how quickly her O2 dropped and the alarm alerted. Luella was hot. I took her temp - 101.7.

When she woke up yesterday (Thursday) after having the seizure Wednesday evening, she was coughing quite a bit. So we are dealing with another cold. I'm sure it was brewing on Wednesday and that's why she seized on Wednesday night and now this one with the fever.

Please pray that she can get through this illness quickly!!

2 Seizures This Week

Luella had a seizure Sunday night and another one tonight. I was a little worried after the seizure a week before Thanksgiving that landed her in the ER... wondering what the next one would be like. Were we on the road to harder to control seizures again? On Sunday her seizure was SO fast! She got her rescue med and it was done in just a couple minutes! That was a relief. Tonight's seizure didn't seem so fast.

I had been gone all day for a meeting with a certified GAPS practitioner over 2 hours away. It was a good day. An emotional day though, re-telling Luella's story and dealing with my insecurities about starting Luella on such a strict diet. I got home and within 45 minutes my little peanut was having a nasty tonic clonic (grand mal) seizure. I lost it! It's a good thing Jim was home to run after the medication and oxygen tank. I just could not keep it together. I'm sure if I had been alone with her I could have handled it but I was so glad I didn't have to. Luella was shaking so hard and foaming at the mouth with blood (she must have bit her tongue). I hate, hate, hate watching those seizures!! They are so violent-looking. It wasn't letting up and I thought a second dose of midazolam would be necessary. I just put my hands on her and prayed, "God make it stop!" and it was done. Thank you Lord! Burke had just been going to take a shower and he told me later that he prayed right away in the shower for her seizure to stop too. What a sweet boy! I actually thought this seizure was longer then the one on Sunday but Jim informed me they were the same length. I guess it just seemed so much longer because I hate watching her convulse like that!

After holding her for awhile I put her down for the night. Hopefully she will wake up rested and ready for a morning at school.

Big Bad Seizure

Luella had a seizure today. That ended a 12 day seizure free run. She actually had a seizure on Nov 3rd that I didn't blog about too. That one happened at the Water Park of America - we thought we'd take a quick weekend trip to the cities and have some fun. She only got in about 10 minutes of fun at the water park before that seizure. :( She did enjoy the Mall of America the next day, especially the Lego Store!

Today was the big bad seizure! Luella and I went to school (ECFE) this morning. She had a great time playing with the corn in the sand box! Afterwards we ran a couple errands and stopped to get groceries. I had noticed her being a little "off" all morning. Just a little spacey and quiet. Luella wanted to push her own little shopping cart and we proceeded to get the groceries. A special friend was getting her groceries too and Luella had fun seeking her out down the aisles. We got to the frozen food aisle and I looked at her clutching the handle of the cart and her head turned around looking backwards starting to have a seizure. I picked her up, grabbed her meds and rushed behind the customer service counter where I could lay her on a rug. I had to give her two doses of midazolam and some oxygen since her O2 was dropping. Finally within about 10 minutes the seizure appeared to be stopped. I called Jim so he could meet me at home and we headed home too.

At home Jim held her and she appeared to be breathing really strangely. I checked her O2 again and it was dropping again! We got some oxygen on her and just watched for awhile. I was so sure the seizure was done at the grocery store. She had all the signs of being done. She rubbed her nose and yawned. I was sure she was done! Now, we didn't know what we were seeing. She started getting blotchy (like she does often during a seizure), her breathing was getting more labored, heart rate was elevated. O2 wouldn't stay up on its own when we took the oxygen away. Her eyes opened a little and she wasn't "seeing" us, her hand started posturing and then we knew we needed the ER. Off we went!

At the ER things seemed to be a little better. She didn't need the oxygen but when they poked her to try to start an IV and she didn't even flinch we knew something was going on. At that point they just gave her some more midazolam IM (inter muscularly). She started looking so much better -  not flushed, breathing normally, normal heart rate. The ER doctor spoke to our neurologist. Our doctor suggested adding an additional dose of depakote (one of her usual daily anti-seizure meds) just to get her through the rest of the day since we weren't really sure why this had happened. Luella was so drugged and hard asleep she couldn't take an oral med so they decided to give via IV. They called the anesthesiologist to start the IV and he did great - got it the first try! Luella did cry hard during the IV placement but she went right back to sleep then. It took awhile for the meds to be ready to hook up to the IV and once it was ready, Luella was actually starting to wake up. The nurse started the IV. Luella was rustling around and wanted to roll to her tummy. I was trying so hard to keep her still but somehow she managed to escape and hit her hand on the bed and blood was everywhere! I had heard a "pop" and the IV was out. It was such a mess! So since Luella was more awake they cleaned her up and we just ended up giving the meds orally then.

The doctor was pleased with how well she was doing so after just 3 hours in the ER we were able to go home. She did pretty well for awhile at home but then got sleepy and cranky. We made it through supper and she got to bed. So far she's been very restless tonight and crying a few times. Hopefully she will sleep now and be ready for a better day tomorrow!!

Thank you all for your continued prayers. Please pray that this seizure was a fluke and we don't see another one like it!!

And sorry for the long post. I use this blog as kind of a diary about Luella's seizures - something I can look back on and read the details again later.

A Fun Halloween!

Luella got to trick or treat tonight and had LOTS of fun!! I had made up special bags with non-candy treats for our kids so Luella could trick or treat and not be jealous about all the candy she couldn't eat (since she is still on the LGIT diet). I dropped the bags and a letter explaining the situation off to about 15 houses in our neighborhood. (Sorry if I missed you and you live close to us, if you weren't home when I came around last weekend I just went on to the next house.) We have such great neighbors around here!! To those who handed out our special treats (and even some extra special treats) - thank you!! There are some great people out there wanting to make a special Halloween for Luella!! Thank you so much!! It was a fun and SEIZURE-FREE night!!

 "Owl" Luella with siblings: "Bat Girl" Ashlyn, "Arf Trooper" Burke and "Boba Fett" Ryker

After we hit the houses with the pre-arranged treats, Luella and I headed home to check out her bag and hand out some non-sweet treats to trick or treaters coming to our house. Luella's siblings got to go on to a few more houses with daddy so they still got a few "sweet" treats too. Luella and I mostly didn't get beyond playing with the play-doh and wearing some cute kitty ears tonight! She will have lots of fun checking it all out in the days to come!

Flapping her wings!

Checking out her bucket!!

Weekly Seizure, More Decisions

One week, almost to the exact hour and another seizure tonight. These after supper weekly seizures are getting to be so common! Pretty much a "normal" seizure tonight. One dose of midazolam and it stopped in about 5 minutes. One out of the ordinary thing though, Luella seemed so restless after her seizure before she really fell asleep. She kept grabbing at things and not laying still. Ashlyn was cozying up to Luella to comfort her and Luella got a hold of Ashlyn's finger and pulled it up to her mouth. She chomped down on her finger and wouldn't let go! I had to pry her mouth open! Ashlyn was in tears. Any harder and Luella would have broken the skin. Those teeth dents stayed in Ashlyn's finger for quite awhile. Once Ashlyn felt better and Luella had settled down, Ashlyn was right there next to her again!

Ashlyn comforting Luella after her seizure.

Fun!!

Luella had fun earlier in the afternoon. After her nap we carved pumpkins. Luella's pumpkin was Elmo! She got quite messy cleaning the pumpkin "guts" but it was lots of fun. We waited to light them up right before bed when it got dark. Luella woke up enough after her seizure to see her Elmo pumpkin all lit up before we got ready for bed.

Now on to the decisions I hinted at in the title... I've read about some kids actually having more seizures while taking a carnitine supplement. Luella takes carnitine to help protect her liver since so many of the drugs she takes are routed through the liver. When she started the carnitine it didn't seem to cause more seizures but we are going to try to take her off of it for awhile and see what happens.

Luella is still doing the LGIT diet. Unfortunately we've seen no reduction in the number of seizures. We will still continue the diet for the 2 months but I'm quickly coming to the conclusion that this isn't the one for her. With that, we spoke to another Dravet family last week and are seriously considering another type of diet. It's called GAPS and let me just say this would not be an easy diet!! This family has seen great things happen for their daughter - things we'd like to see happen for Luella!! I have a lot of learning to do before we would be ready to jump into this diet!!! I waiver quite a bit on this one - one day I'm all eager to learn more about it and the next day I'm in tears thinking about how crazy it is! Basically the diet is wheat and sugar free and NO PROCESSED foods, none! The Introduction part of the diet is the craziest. If you are interested you can read more here -http://www.gapsdiet.com/INTRODUCTION_DIET.html.

Please pray about this and that we would make the right decision for Luella!!

Luella's Elmo Pumpkin!

Birthday + Seizure :(

Luella turned three today! She has been looking forward to this day for several weeks. We've heard "Happy Birthday Tah You" many times a day leading up to today! After church, lunch and a nap it was party time. I don't think we've ever had so many people in our house! It was great to have so many family and friends take time to help Luella celebrate!

Luella had an ELMO themed party. She LOVES Elmo's World. An entire episode of Sesame Street can be on and she'll only run to the room when she hears "La la la la, la la la la, Elmo's World...." I had lots of fun with the Elmo theme!

For those that know me, you know I LOVE to decorate cakes. Since Luella is on the LGIT diet I had to be creative in a different way. No regular cake and frosting here today. I researched and decided on a low-carb cheesecake - no frosting or ice cream to deal with either! I made a sample last weekend and Luella gobbled it right up. It was okay but when you know what a big piece of rich cheesecake tastes like it didn't quite measure up. I decided to make regular cheesecake for the rest of us and Luella had her low-carb version. I used some paper crafts to decorate the cake - one from Esty.com and one made by me. To top off our cheesecake we had fresh fruit in the shape of ELMO! For fun I added a platter of Sugar-Free Jello Jigglers in the shape of number 3s. The fruit and Jello were okay for Luella to eat too.

It was a little difficult to keep her focused on her gifts, she wanted to run off and play! She got lots of fun things!

After the party wrapped up we had supper and then started getting kids ready for bed. And there it was - another seizure!! :( So sad that she couldn't have the entire day seizure-free. This seizure was a little more then the unresponsive ones she's had more of lately. Her arms were stiff out to the side and slightly twitching. The good thing - only one dose of midazolam and it stopped FAST! Actually my geeky hubby informed me this was the shortest seizure she's had in over a year! (Yeah, we keep very detailed records.) She didn't want to sleep long and was crying, very restless and wanting to sit up even though she couldn't since she was so dopey. I took her upstairs and got her ready for bed. After a book and a few songs she was out. Hopefully tomorrow she will be feeling better. Thanks for all your prayers and well wishes for a seizure-free birthday - it wasn't meant to be I guess. At least it happened at the end of the day and didn't take away her fun!!! I still find myself struggling with "why" sometimes. I know I need to trust God and just believe that all of this is for a reason. It's really hard sometimes though.... I just wish I knew.

We appreciate your continued prayers for Luella and for our whole family as we deal with Luella's seizures, diet and so many unknowns. Thank you!

I'll leave you with some pictures from Luella's special day...

Giant Elmo balloon.

Elmo fruit tray - low-glycemic fruit for Luella!

Birthday Girl!

Daddy, Mommy and Luella

How Luella ended her day - postictal from a seizure. :(

 

A longer weird seizure tonight

I really want to be posting that Luella is heading in the other direction with her seizures!! :( She had yet another one tonight - the 2nd this week again. I had just gotten supper ready and the kids were getting washed up. Jim was with Luella and she kind of put her hands to her head and grunted or something. She wasn't responding normally so he brought her to the living room and I grabbed the midazolam. She was semi-conscience and when I got the midazolam ready she hit it away from her. Before I even gave her the midazolam she seemed to be coming around a little but she couldn't stand on her own. She said she wanted supper and Jim took her to wash hands. When they came into the kitchen she started crying and her eyes were going up to the right and then she didn't respond at all to us, just kept crying. I had to give her two doses of midazolam to stop the seizure. Lately her seizures have had a fairly quick recovery time but tonight she slept for over two hours and then was still really sleepy and not herself. She kept crying and saying her tummy hurt. I was able to get her to eat a little bit and then she was asking to go to bed again.

We rocked downstairs a little bit after supper and she settled down. I told her she had another seizure and asked her how the seizure felt. In a sad little meek voice she replied, "Seizure feels bad." Poor little thing!! I absolutely HATE that she has to suffer through these seizures. I wish I could just take them from her!

Luella's third birthday is Sunday. Please pray that Sunday will be a fun day for her without any seizures. I want her to have a terrific birthday!

A fun weekend but nervous...

Well, it was a fun weekend! We decided to take the kids to Sioux Falls on Saturday afternoon to a fundraising event at the Sertoma Butterfly House... they had the Star Wars characters there! The kids knew where we were going but we didn't tell them the Star Wars detail. They were sure curious about why the line was so long and why some of the kids were wearing Star Wars costumes?! They were all excited to see Storm Troopers, Princess Leia and Darth Vader inside!! Luella even recognized them!

I was a little on edge the whole trip. Before the Butterfly House Jim dropped Luella and I off to pick up a couple things while he and the other kids made another stop. Of course I had her meds and oxygen with me and a fully charged cell phone, but I was constantly watching her and asking if she was okay. It had been a week since the last seizure so she was "due".  I hate it when something catches her eye and she stares and doesn't move. I'm sure she gets tired of me asking, "Are you okay Luella?"

She was fine. ALL DAY! I was concerned in the aquarium part of the Butterfly House with all the brightly lit fish tanks and water, but she did great! She had a lot of fun petting a baby shark and checking out the sting rays. She loved the butterflies too! I even researched the nutritional info for Culver's so we could eat supper in Sioux Falls and Luella did great there too!

Touching a baby shark.

Butterfly!!

So the seizure didn't come on Saturday but on Sunday instead. Sunday night actually. After eating and playing with siblings before bed around 7pm she had a seizure. Jim was in the kitchen and I was kind of all over getting things ready for bedtime. Ryker and Ashlyn were playing with Luella and Ryker spotted it first but then pretty much everyone was saying "I think Luella is having a seizure!" I'm so glad they are in-tune with her and can help us keep her safe!

Only one dose of midazolam and then she slept for awhile. She woke up to "kind of" watch an old Garfield Halloween special and then was very ready for bed. She slept so restlessly all night and I was constantly watching her on the monitor. I was so tired and finally I decided that I needed to trust God that she would be fine and put the monitor over by Jim so I could sleep without hearing every little move. She woke up feeling great this morning and had a great day. She even got to play outside for about three hours today! I'm so thankful that despite these persistent seizures she can still have some "normal" kid time too! Thanks for your prayers.

Playing in the leaves with big sister Ashlyn.

Sick, Seizure, Sibshops, Snake Skin

That post title got your attention, didn't it?!? Just a summary of what follows...

Luella woke up Friday afternoon from her nap with a runny nose! It's been constantly running today and tonight right as we were getting ready to eat supper she had another seizure. Jim had just changed her diaper and went to throw it out and I was in the kitchen getting supper ready. Luella had walked from the playroom to the living room and was laying on her tummy with her knees pulled up under her and her face to one side.
When Jim came in he saw her laying there, looked at her closely and noticed her eyes shifting. As much as I hate tonic clonic (grand mal) seizures, at least you notice them! These partial seizures are so awful! So easy to overlook if you don't stay tuned into her. I just feel like I can't leave her side ever! Especially since Luella's seizures don't ever stop on their own. We always have to give a rescue med. I've heard too many stories about kids who have had prolonged seizures and then suffered brain damage. I pray that I will always know when she is seizing and don't ever miss it!!

Luella's kidney ultrasound went well yesterday. Her kidneys look good and healthy despite the reflux. From the nuclear test she had done in the spring they could tell that the right side has improved but the left is still refluxing pretty badly. We will repeat the nuclear test again in one year. That will give the left side more time to hopefully correct itself and maybe then we can go off the antibiotic.

I always write about Luella but today the older three kids (Burke, Ashlyn and Ryker) were able to participate in a Sibshop event in Sioux Falls. Sibshops provide an opportunity for children who have a brother or sister with a disability or chronic health concern to get together and share experiences, make new friends, learn and have fun. Today's event was held at the Outdoor Campus in Sioux Falls and the kids got to have a lot of fun with nature and share a little about Luella. They took a nature walk and Ashlyn was thrilled to find a snake skin!! :-)

Please pray for Luella's cold to get out of her system quickly and for no more seizures!!

Another week, another seizure

Luella had her weekly seizure again tonight. Please continue to pray that this diet would kick in and start to reduce her seizures.

Luella is scheduled for a kidney ultrasound early Friday morning to check the status of her bladder reflux (another issue we deal with). We are hoping that it has improved enough that she can stop taking the antibiotic she's been on for the past two years. It would be awesome to get rid of a medication!

There are a couple of petitions out there pertaining to epilepsy. We'd love it if you'd sign them. It takes just a minute...

Name March 26th National "Purple Day" in support of those who struggle with epilepsy & seizures every day.
http://wh.gov/WjbI

Turn the White House Purple for Epilepsy Awareness!!
http://wh.gov/WmFZ

Thank you!!

Another seizure / Prayers for diet

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.

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!

Oopsie Rolls!

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!

Luella drew this smilie all by herself!!

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.

Enoying CAKE!

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!!

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!

Cousins - Lucia and Luella

We figured it would happen...

...and it did. Luella had a seizure tonight. We've been waiting for it to happen. She's been averaging about a seizure a week all summer but today was day 16. She hasn't gone this long without a seizure since back in May. Thankfully it was short, one dose of midazolam stopped it. We were at Grandpa and Grandma Johnson's, Jim's brother and family are visiting one more time before heading out east again. Luella slept, then woke up and would only eat cheese and Cool Whip for supper! Yum! It's okay... soon she won't be able to eat whatever she wants. We are gearing up for the LGIT diet, still trying to work out sugar-free versions of some of her meds. We also want to get some baseline labs done. Lots to consider....

Also want to ask that you would keep another Dravet family in your prayers tonight. Eleven year old Molly passed away. She was doing remarkably well... and then this happened. You can watch a video of Molly from last spring. What a strong little girl!! We need to FIGHT this Dravet Syndrome!!!

Many blessings at the Dravet Conference

I had to give myself a few days to digest all that we heard and saw at the biennial Dravet.org Conference - that, and getting through sending the kids back to school! My baby boy, Ryker is in Kindergarten now!! <sniff, sniff> I'm an emotional momma.

The Dravet Conference was full of blessings! Many little blessings running, walking and getting strolled all around! I think about 200 Dravet families were represented there - they estimated that to be about 10% of the Dravet population. While it was a great blessing to be surrounded by so many people that just "get it", it was also heartbreaking to see some of the kids and hear many of the stories there. We were assured many times by parents of the older more severe children that it doesn't have to be that way. Typically those older kids were diagnosed much later in life and often times got the wrong medication which made things worse.

We got some great information about things we hadn't thought about too much yet - things like school, dealing with grief, making time to care for MYSELF  (yeah, right!), sibling support, the use of medical marijuna to treat seizures, etc...

Cozy in mommy's bed!

Although Luella started out the conference with a seizure, she did great the rest of the time there. Well, except for thinking it was time to play every morning by 4 or 5 am and then finally deciding to go back to sleep at 7 when it should have been time to get up! She kept asking to "snuggle mommy" and we did that a lot. The pack-n-play basically didn't get used. Thankfully she adjusted back to normal after getting home!

Jim's mom, Anita, came with us to the conference to help out with Luella. They had some children's activity rooms set up and she kept on eye on Luella there so Jim and I could attend the sessions.  There were multiple sessions going on all the time so we usually went to different ones and shared info later. After leaving Luella with Grandma for the first time on Thursday afternoon,  I was sitting in a session with Jim (one of the few we went to together) and thinking - this is the first time we had been alone together without Luella!! We've NEVER gone on a date alone since before Luella was born!! It's been almost three years! Anita was willing to be trained to give Luella her seizure rescue med if she had a seizure. We were also just right outside the door if she needed us. It was a strange feeling to not have her with us all the time! I know that's something we need to do more but it's hard for me to leave her...

               Luella taking a snooze on Grandma.            

Visiting the clown and getting a purple balloon animal!

Luella and friend Melanie at the conference.

It was a pretty emotional time. Having to face the idea that Luella might face some developmental delays or have problems with her gait and walking later. Seeing the word SUDEP (Sudden Unexplained Death in EPilepsy) in black and white on my conference agenda. Thinking about long-term planning for Luella. All things I'd rather not think about. Sometimes I feel as though I can handle anything and other times I feel like I'm at the bottom of a pit. I know the only way I can make it though this is by my faith. I'm so glad I can just give God all this "junk" and he will deal with it.

Some new Dravet friends with connections to Luverne!! These are Melanie's parents (Melanie is pictured with Luella above).

At the Dravet Conference... a seizure starts things off

We arrived in Minneapolis today for Luella's doctor appointment and the start of the Dravet conference tomorrow. Luella's appointment went well. Dr. W was so happy to see that Luella has finally gained weight!! Luella is doing tremendously well developmentally even though she continues to have about a seizure a week. I have been excited for this conference but also worried about seeing so many other kids who aren't as well off as Luella - I know that will weigh heavy on my heart. Dr W said today that there will probably be many parents of little babies here that will be encouraged to see Luella. I do hope that that Luella can offer some hope to families who are just beginning to deal with Dravet Syndrome.

We checked into the hotel this afternoon and got settled a little before heading out for supper. On the elevator ride down to the lobby Luella had a seizure. It was quickly stopped with a dose of midazolam. She napped awhile and was feeling better after eating supper. We are hoping now that that seizure is out of her system the rest of the week will be great.

This week: 2 seizures but water fun at home!

Well, we ended a pretty good week with a seizure today at City Park. (Luella had a seizure to start the week too on Sunday.) It was such a nice day to get out. We had RAIN last night and a much cooler day today!! After Luella's nap we ran some errands around town and then stopped by City Park for the kids to play. Luella wanted to be so independent. I tend to stick to her like glue while she climbs on the playground equipment. Luella kept pushing me back and saying "No, mommy. Self." I was pretty impressed with her coordination. She was getting around pretty well without needing my help though I was right there just in case.

After playing for quite awhile I noticed Luella getting a little clumsy. She was stumbling a little and running into things. She had just come down from a slide and I told Jim that I thought she was getting more unbalanced. She was still talking to us and responding just fine, even laughing at times. Then she tripped a couple times and I picked her up and she just started staring off and losing consciousness. Jim gave her one dose of midazolam and she came out of it pretty quickly. She didn't even have a post-ictal nap but was a little dopey for awhile. She was back to her normal goofy self after supper.

During the week we had the little baby pool and slip n' slide out at home a couple of times. We thought we'd try swimming at home on a really hot day. Luella did great! She had so much fun!! I haven't really wanted to get the pool or slip n' slide out again since her seizure on the slip n' slide back in June. This time she wore her sunglasses and would look down at the water reflecting the bright sun and NO SEIZURES! I really think the sunglasses are helping. I was so glad to be able to see her have some normal kid fun without any problems!

Luella and friend Lauren enjoying the water!

We are doing more research into the Low Glycemic Index Treatment for Luella - actually Jim is doing most of the work. I have such an amazing husband!! He has been devoting all of his free-time to Luella and figuring out what is best for her. I'm feeling so much better about making this diet change. I appreciate all of your prayers. I know it'll still be a big adjustment but I want to do what is best for Luella too and if changing her diet helps her to have fewer seizures without adding meds - that would be great!! It'll probably be 2 - 3 weeks before we can start it.

We appreciate all of you who have subscribed to get these updates about Luella and those who read the blog from my facebook updates. We are thankful to have so many caring friends and family!!

Another seizure at the pool / Donate a toy!

We tried to take another family trip to the pool tonight. Luella lasted about 10 minutes. Long enough to take a ride down the water slide with mommy. We were next in line to go down the slide a second time and she started seizing. I had to run all the way down the steps, flag Jim who was in the water with the other kids and get to the other side of the pool to the rescue drugs. It took just one dose but then she slept for over an hour while I just held her and watched Jim and the other kids. So much for a fun night of swimming. :( I feel so bad for her because she just loves the water.

It wasn't bright, but she did have her sunglasses on anyway. She was shivering as we waited for the slide. Some Dravet kids have a hard time regulating their body temperature. It's just hard to know for sure what happens to Luella.

We've been doing some serious looking into the Low Glycemic Index Treatment (LGIT) for Luella. We will be traveling to the Dravet Conference in St. Paul mid-August, but after that we hope to get Luella started on the diet and hopefully get these seizures under control without increasing meds and having all the negative side affects. I'm really not super excited about the diet - I hope it will be good for Luella but it also means no more sweets and many other things she likes and therefore no more for the other kids too since it wouldn't be fair to eat in front of Luella. Burke and I spent some time at Barnes and Noble today and I found a few cookbooks.  I need to find some things that will work for Luella. It's not as simple as just eating low glycemic foods because we also need to count carbs. Luella will be limited to only 60g of carbs a day and eventually maybe only 40g. I just need to keep praying about it and hope that it will be okay. It will mean changing our eating habits and it's kind of stressing me out. I would really appreciate your prayers about the diet and also prayers that Luella could be seizure free and be able to enjoy playing outside and swimming.

                                 Donate a Toy!                                

The Dravet Conference I mentioned earlier is in St. Paul this year. They hold the conference every 2 years in various places and we are fortunate that it's not so far away this time. They have some rooms set aside where the kids can play. They are asking for people to make toy donations to stock the rooms. There is an Amazon Wish List available with many toys that you can have shipped to the conference. After the conference the toys will be donated to area hospitals. If you'd like to make a donation of a toy or two for the kids attending the conference you can visit the Amazon Wish List and place an order. Thank you so much!!!
Amazon Wish List link: 
http://www.amazon.com/gp/registry/2O8J00UK8VXNR/ref=cm_sw_em_r_ws_3u2Xpb08RYAC1_wb

A big goose egg

I thought we could enjoy some time outside today since it has finally cooled off. I haven't really wanted Luella out in the extreme heat. We've been going out earlier in the day or later in the evening on the hot, hot days.

Today Luella had to ride her "pink tricycle" and was having lots of fun. After about an hour and a half outside she had a seizure. She was sitting on her tricycle and kind of fell off slow motion. She  happened to be on the sidewalk right in front of our steps and bumped the back of her head hard! She has a big goose egg!! Poor baby. One dose of midazolam stopped the seizure but we gave her some ibuprofen too to help with the headache I'm sure she had due to the seizure AND the fall.

I hate Dravet Syndrome.... :-(

Seizure at Pipestone Pool

We thought we'd try beating the heat at the Pipestone pool tonight. Luella was decked out in her snazzy polarized sunglasses but barely made it out of the locker room before she had a seizure! She was so excited to go swimming and wanted to bring two little rubber ducks from home to swim too.  She wasn't even wet yet and we were walking in the shade of the umbrella so who knows what happens in her little brain.  It would have been 2 weeks tomorrow since her last seizure.

I sat out of the pool in the shade and held Luella while she slept. Jim, Burke and Ashlyn swam for about an hour (Ryker stayed home and had some special time with Grandpa and Grandma while he recovers from Mono). Just as the pool was closing Luella woke up a little bit and with eyes just barely open she pointed at the water and said "wimming". Poor babe!! The sweet staff at the aquatics center gave us free passes to try it again another time. They were also sad Luella didn't get to swim.

Luella was pretty much back to normal when we got home and she took her two little rubber ducks in the bathtub with her! We'll have to see how it goes the next time....

Sunglasses appear to be helping!!

Well, I didn't get a chance to post about Luella's last seizure on July 6th. We had a lot of family in town helping Jim's parents get settled in after their move. It was so hot!! On that Friday we decided to head to Rock Rapids to the pool with Jim's brother and family. Luella was only in the water about 5 minutes and had a seizure. Boo! I so wanted her to be able to enjoy the time cooling off and playing with her siblings and cousins.

Luella and her new sunglasses!!

We decided to try polarized sunglasses (recommended by other Dravet parents). I ordered a couple of pair just in time for our weekend trip to Okoboji this past weekend. What a great vacation destination for a little girl who seems to have seizures around water and sun!! It was planned though and we had the sunglasses to try and she did GREAT!!!! No seizures at all!!! Prayers answered! Luella kept her sunglasses on perfectly and swam at the lake, the campground indoor pool AND the little kiddie pool outside!! Bright, sunny and FUN!! It was great to see her enjoying herself and laughing. It was wonderful!

We plan to test the waters (HA!) and go back to the pool in Rock Rapids sometime this week to see how she does there too. I've been avoiding pools this summer for fear of seizures but it would be great if the sunglasses would continue working. We know that her Dravet Syndrome will continue changing and eventually the sunglasses might not work, but for now we are going to try to enjoy the water!!! Hope you are all keeping cool!! Let's pray for some rain soon too!

Modeling another style of polarized sunglasses.

Luella having so much fun in the water!

Luella and Ashlyn keeping cool!

Luella enjoying the beach at the lake.