Luella's Appointment

Wow! We had a LONG day on Monday. I got up at 5:30 - after a short night of sleep - for some reason Luella's pulse-ox decide to be picky and go off several times during the night. Thankfully all the alarms were false alarms. We got Luella up at 6:30 and got her dressed and headed out. Grandpa and Grandma Johnson were here to help the other kids get off to school. We were thankful for good roads, although it was a little foggy in places, we had pretty good driving conditions. Luella enjoyed having her breakfast in the van and then decided to stay awake the ENTIRE drive. We were literally 5 minutes from Gillette Children's when she started to close her eyes. She was re-energized when we got out and she could stretch her legs!

We checked in and Luella was weighed and measured. This girl is growing!! If you've seen her lately you know! She is already almost as tall as Ashlyn was at 4 1/2 yrs old and she is not even 3 1/2 yet! Dr. Wical was pleased that her height percentage has surpassed her weight percentage on the growth chart now. We talked with Dr. Wical for a LONG time. Luella's appointment was at 11:00 and 2 hours later we finally finished up! She is such a great doctor - always willing to take the extra time if needed. At 1:15 we headed down to the hospital cafeteria for lunch. Dr. Wical needed some time to write up all the check out papers / instructions and get some lab orders in place. After lunch we checked back with Dr. Wical, got the necessary paperwork and headed to lab. I warned the lab tech that Luella had poor veins and was a hard poke. He was very sure of himself and got the vein on the first attempt!!! Yay! Luella shed two little tears then watched as 6 tubes of blood were filled! She was so proud of the TWO princess stickers she got!

Luella with a "real princess"!

During the times we waited at Gillette for papers and lab orders Luella spotted a "real princess" visiting kids in the waiting room. She told me "just a minute" and ran as fast as she could to 2012 Miss South Central Minnesota, Tiffany Buszta! Tiffany even brought a special crown for Luella to put on and take a picture! Luella also got to meet the cutest, fluffiest white dog named Sasha (see pic below)! She looked like a little bear! Sasha is a samoyed and so cute!! Luella even got to give her a treat. Sasha's owner gave Luella a treat broken in two and told her to place a piece on each of Sasha's front paws. Sasha didn't touch the treats until Luella said "okay"! Sasha is an amazing dog. You can watch more about her here - http://www.youtube.com/watch?v=hvdfhakoUTQ.

As we were driving out of the Gillette parking ramp a little after 3:00, Luella finally took her nap! :-)

It was a good visit. We have a couple new things we are going to try with Luella if the GAPS diet doesn't give us better seizure control soon.

Luella will be having a neuropsychology evaluation done. Hopefully we can do this in Sioux Falls otherwise we'll be driving up to Gillette again for that. She'll be getting repeat evals done every 3-4 months also until we can tell better where her development is headed. We believe Luella is showing some signs now of something being not quite right developmentally. Dr. Wical could definitely see her lack of inhibition. Luella is VERY outgoing and will often hug (almost attack) total strangers. It's cute now to have a little 3 year old hug you but it may start to be uncomfortable to some as she gets older! Luella is definitely a smart little girl and knows many age-appropriate things, however she is having some problems in some areas. One thing is we find her to be very inattentive at times. It can be difficult to engage Luella in a back and forth conversation. I usually have to ask her things many times. One thing we hope to sort out with the neuro-psych eval is if she is having trouble processing the information. Luella has many other interesting characteristics - she always gallops or skips and loves to spin and make herself dizzy - which is even more dangerous when your balance is already a bit off! We don't know what these things mean, if anything. Dravet kids often show some characteristics of autism so we might be seeing that. We hope to figure out more as we get the eval done.

Oh, and the eating out went great! I packed all of Luella's own food and she was fine eating that while Jim and I ate something else. A couple of times she asked for something we had but when we said no she was right back to eating her food!

Thank you all for the prayers!

Luella with Sasha!

Seizure last night, praying for safe travels tomorrow

Luella made it just over a week since her last seizure. Last night (Saturday) right before supper she was walking through the kitchen and fell when she started to have a seizure. Jim and I were both nearby but we didn't see the seizure start so we couldn't help her avoid a fall. It's very difficult to always have a set of eyes on her. She did bump her head and it was a little red last night but no goose eggs and even the redness was gone this morning. This was a full body, tonic clonic seizure again but thankfully only one dose of midazolam stopped the seizure. She did sleep for quite awhile and then just wanted to be held. She ate her supper only 1 1/2 hours later and then enjoyed a nice bath. We are so thankful she comes out of these seizures so well! This morning she was especially full of energy and enjoyed seeing so many people at church!

Tomorrow we head up to St. Paul to Gillette Children's for Luella to see her neurologist again. This is just a routine follow up appointment. We see Dr. Wical about every 3-6 months. It will be a long day of full of mostly driving so we are praying for clear roads and safe travel. This will be our first time having Luella eat away from home since she started the GAPS diet. I have all of her meals ready to pack up in the morning. I'm hoping she handles eating out okay when she has her own "special" food.

Here's a cute picture from last night. After Luella has a seizure she often gets the chills. We covered her up in a cozy blanket and Sophie helped keep Luella cozy too! (You might have to look twice, she almost blends in with the blanket!)

Sophie helping to keep Luella cozy!

A V-day Seizure

Luella started out the morning with a Happy Valentine's Day egg with heart strawberries. I wanted to make her V-Day extra special since candy wasn't going to be a part of it. Unfortunately Luella started getting another cold yesterday (Wednesday). She's been sneezing SO much, coughing some too.

We had such a fun supper and I made a version of cupcakes with meringue frosting that Luella could have for dessert! She was so excited when I made the frosting this morning and she could actually have a couple little licks!! After supper we watched the Charlie Brown Valentine special. We had gone upstairs to get ready for bed, Luella had just finished brushing teeth and I told her to go get some jammies out of her drawer. I saw that she had opened the drawer and was getting some jammies. I had turned to get something in the hallway and when I came back to her room she was limp, her arms hanging over her drawer and the rest of her was slipping down the front of the dresser. At first I thought she was just playing but I heard her gasp and I knew it wasn't good. She wasn't breathing much at all and she was quickly turning blue. Her fingertips and hands were grey. We put the pulse-ox monitor on her right after the 1st dose of midazolam and her O2 was down to 40%! It's so scary watching your child and just waiting for them to take a breath! We put the oxygen on and thankfully she started breathing enough of it to get her O2 back up to the 80s-90s%. There have only been a couple of times that she wasn't breathing like this. I believe the other times we were already in the hospital. I'm SO THANKFUL we have oxygen with us all the time!! The seizure wasn't stopping so I had to give the second dose and it still went on. The seizure ended up lasting 7 minutes - longer than usual. After the seizure she slept about 30 min but then woke up and cried and cried. I just held her. I'm sure she felt like she'd been hit by a truck. I just could not console her. She cried about 45 minutes and then finally drifted off to sleep.

Not how I envisioned our Valentine's Day, but I am thankful that we got to have some fun earlier! We need to kick these prayers for Luella into over-drive!! Please pray for HEALING! Thanks.

Luella having fun with some of her Valentine's goodies!!

Seizure at Church

Luella had a seizure at church yesterday. We were visiting afterwards and she was running around a little bit playing. She ran over to the corner and let out a little scream then fell backwards to the floor. She was standing by a metal door and hit that also as she fell. It sound like a big bang. She did have a red mark on the back of her head, it looked more like rug-burn. I saw her fall and I think it sounded worse than it was.

This was a tonic-clonic seizure (whole body). She did bite her tongue again but she's been eating okay so it wasn't too bad. It seemed like it lasted a long time, but it stopped after only 4 minutes with a single dose of midazolam. She was OUT for almost 2 hours after that. She woke up, ate a little lunch then right back down for a nap. After her nap it was as if nothing happened in the morning. I love that she can come back from these seizures so quickly. I know other kiddos can sometimes take weeks to get back to "normal" with speech, balance, mood, etc...

Luella's seizures seem to be coming more frequently again as she's had 3 in about 10 days. We are still staying solid on the GAPS diet in hopes that things will improve soon! Please pray that we can go longer and longer between seizures! We appreciate all your support!

She Took a Tumble

Luella had another seizure tonight. She had been running and playing with Ryker after supper. Jim told Ryker to do something calmer with Luella so they started to play Legos. Luella was standing on the bench at our dining room table digging in the big Lego box that was on the table. She started having a seizure and fell all the way to the floor pulling the huge box of Legos all over her. I had been getting groceries and just walked in the door as Jim was running to get Luella's meds. There were Legos everywhere!! I wasn't sure what had happened! Thankfully the seizure stopped quickly with one dose of midazolam. Luella scraped her tummy during the fall. We couldn't find any lumps on her head so hopefully she didn't hit too hard. She slept a little bit and woke up enough to get ready for bed and read a book. When I asked her if she had any bumps or if it hurt anywhere she said "no" but she was pretty cranky. I hope she'll be feeling back to normal in the morning.

I hate that we don't have any warning when a seizure is about to happen. I hope that eventually Luella will be able to sense something different so we can be prepared. I get so nervous about her climbing on things. I feel like a VERY over-protective mom. I don't like her to sit on our tall kitchen stools or go up or down the stairs alone... we just never know.

The diet is still going well. We are a little discouraged that we haven't seen an improvement in her seizures yet, but we'll keep at it!

Please pray for the diet and for protection for Luella when she has a seizure. Thanks everyone!

Just shy of two weeks...

I was hoping to write a celebratory post tomorrow saying we had made it two weeks seizure-free.... but she didn't quite make it. Luella has been doing really well all this week. She has almost fully recovered from the bad cold she had two weeks ago that resulted in four seizures in just two days. She still has a bit of a runny nose but no fever or cough. Tonight after supper she had a seizure. It stopped fairly quickly after giving her midazolam. She slept a little and then woke up for a couple books then bedtime.

We had really hoped to see these seizure-free runs stretching out longer and longer now. As of this past Sunday Luella is on a 100% Full GAPS diet!!! This slower transition has been really pretty easy on her. She does occasionally ask for M&Ms or "just a couple chocolate chips" but she handles it well when I tell her no. I've been trying LOTS of new recipes and she pretty much eats it all... sometimes with a little bribery but she's doing great. It's been an adjustment for the older kids who like to have a yogurt or ice cream after meals sometimes. We've found some good substitutes. A favorite is blended up frozen banana with other fruit. The rest of us aren't Full GAPS. Luella eats breakfast and lunch on her own so we can cheat at those meals. I've been making home made sour cream and yogurt and Luella really enjoys both of those.

This first week cooking Full GAPS for Luella has kept me very busy. I'm lucky if I get to leave the kitchen a couple of times a day! My feet and back are feeling the pain! If I'm not meal planning or prepping for the next meal there are loads of dishes to wash. Cooking from scratch takes time! As these recipes become more familiar I'm hoping things will speed up a bit and I plan on doing some freezer cooking and stocking up. It is a great feeling to know that the food we are eating is so healthy and I know exactly what's in it! So far the Cilantro Lime Chicken is one of my favorites!! I'm going to try and stick with our tradition of pizza for the Super Bowl and make Luella a pizza with a cauliflower crust! We'll see... :-)

I want to thank all of you for the continued prayers for Luella. All of this is in God's hands and we are anxious to see what the GAPS diet can do for her. I know I've also felt the prayers for myself as I've been researching GAPS and trying these recipes. Thank you for all your support!