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!!