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.