Still sick but no seizures in 2 days

I just wanted to update everyone that Luella has made it through the past 2 days now (Sunday and Monday) without any seizures! She still has a nasty cold - runny nose, sneezing, coughing, fever... pretty much feeling miserable. Even though we've been staying on top of giving her fever reducing meds around the clock she continues to have high temps - but thankfully no seizures! Today her fever wasn't quite as high as Saturday and Sunday so hopefully things will continue to improve. We've been having a lot of snuggle time as that's pretty much all she wants to do. One thing that has been quite painful for her is eating and drinking. During those 4 seizures on Friday and Saturday she kept biting her tongue and it is VERY sore. She tries to eat and then bites it again! I think it'll take awhile to heal.

We appreciate all the prayers as well as emails, notes and phone calls to check in!! We are fortunate to have so many who care so deeply for Luella!

Today when I needed to get breakfast cleaned up Luella wanted to be held. I brought her new art easel into the kitchen and let her use some dry erase markers to draw. Since that was something new, she immediately started drawing! The drawing didn't last long but she amazed me with what she did in that short amount of time.

First was a face - which she's been drawing on paper for awhile too. The eyes on this face had pupils!! The next thing I knew she had drawn a letter "L" followed by a "U" and I watched as she proceeded to write "E L L" the "A" didn't make it, but to watch her write most of her name... that was amazing!!

Face and eyes with blue pupils.

"L U E"

" L U E L L"

2 More Seizures Today

Just a quick post to let you know that Luella is struggling with an illness and to ask for specific prayers that she can get through this quickly. She's now had 4 seizures in 2 days. She woke up having a seizure this morning and had another one tonight around 5:30. Both stopped on their own without a rescue med. She's had a fever up to 103 and keeps running a temp off and on. Jim took her to ER this morning to check all the usual things - ears, urine, influenza, strep - all negative. Whatever she has will have to run its course. She's coughing and congested since this morning. We've never experienced this many seizures so close together. She's already feeling run down by this cold but then having to deal with all the seizure too - it's taking a lot out of our little Luella!

...99 and 100 (2 seizures today)

Luella had two seizures today. Seizures number 99 and 100! So now we are in the triple digits. :(

I tried taking her outside with me today for awhile to get some fresh air since it was so nice. I was out front taking down some greenery on our front porch and she was having so much fun riding her pink tricycle again! It was a little breezy in the front and we were in the shade so I thought we'd go to the back yard and get some sun. The second I opened the back door of the garage and the sun hit her she started seizing. She had sunglasses on too but I think the dramatic change was too much. That seizure stopped fairly quickly with one dose of her rescue med. She did sleep for almost two hours but when she woke up she was pretty much herself - goofy, happy and teasing us. When Jim got home from work I told Luella to tell daddy what happened to her today (mostly to see what she would say, Jim knew about the seizure), she said, "I got a seizure." Poor little babe!

We had supper then Luella and daddy wrestled a little and played. Jim handed Luella off to me so he could head upstairs to check on the older ones showering. Luella sat on my lap while I was at the laptop and all of a sudden she gasped and started seizing again. This one was a tonic clonic seizure and her little body was shaking so hard. Once again she bit her tongue! This seizure also stopped fairly quickly with one dose. Both seizures today had Luella shivering so hard afterwards, I just snuggled up to her with a blanket to try and warm her up. When Luella woke up after the second seizure she was pretty groggy and complained that her tummy, arm and head hurt. I think her muscles were sore and I'm sure she had a headache too! She wasn't up too long then it was bedtime. She pretty much slept the afternoon and evening away. Praying for a better day tomorrow.

A Fun Field Trip / Diet Update

Luella was excited to be invited out to the farm where we get our fresh farm eggs! She got to see the chickens, feed them, and gather some eggs (she only broke about half of the ones she touched! Sorry Bethany!!). We also got to see some goats and sheep. Luella said her favorite part was the baby lambs!  Lots of fun for this 3 year old!! 

I have an update on where we are with the diet after all the pictures.

 

 

 

Found an egg!!

  

 

Sorry for all the pictures of her back - she kept turning on me! :-)

As you've probably read in the past couple posts, the Introduction part of the GAPS diet was too hard on Luella so we decided to just start a gradual transition to the Full GAPS diet. The idea was to take our time and introduce things slowly, giving me time to find recipes etc... It's actually been going very well. We've tried chicken nuggets, zucchini lasagna, chili and meat loaf in addition to a couple breakfast options - banana "pancakes" and apple "pancakes" - which Luella loved! Thankfully she's eating eggs again without issues too! She's actually been eating all the food very well, often asking for seconds. Basically we are already Full GAPS for breakfast and snacks and most suppers. For lunch we try to do a leftover GAPS meal. I think we are about 75% there (maybe more). I want to trial a couple more recipes then we should be good. I want to have about 7-10 recipes I can just rotate through and add more as I find things. I've also tried a grain-free sandwich bread, Luella likes it with peanut butter, and I made homemade yogurt with raw milk. The yogurt took a little trial and error, I still don't have it perfect but so far Luella likes it mixed in with her GAPS "smoothie" or whatever I juice for her. It's a little tart by itself. I'm very pleased with how things are going now. I feel very little stress about the diet now - yes, it is much more work but I'm not overwhelmed like I was when we first starting talking about doing this.

It's been a week since her last seizure, hopefully we keep adding days to that number!! Thank you all for the continued prayers!!

Seizure Tonight

Luella's 13 day seizure-free run ended tonight with a seizure right before supper. She hadn't gone this long since the end of August. Thankfully it was a pretty short seizure. She needed one dose of midazolam and a little added oxygen to get her through some labored breathing. After sleeping a bit she was ready to eat and then went right to bed.

We are curious if our 3 days doing the GAPS Intro last weekend helped stretch out the time between seizures. We are anxious to eventually be full GAPS and to see what that will do for Luella. Currently she is eating only GAPS snacks and we are trying to get to GAPS breakfasts soon too. She's not quite back to loving eggs yet. I had to bribe her a little this morning. My goal this weekend is to try making homemade yogurt from raw milk!! Hope it turns out!

Diet on Hold

We gave it a good try for 3 days but the diet was too much for Luella. She wasn't thrilled about the food on Saturday when we started and she put up a pretty good fight but we were prepared for that, somewhat. As the day went on it was getting harder. Sunday was miserable. She was refusing pretty much everything. We tried bribing with grapes (still GAPS legal just not allowed on Intro), even then the best we could do was a couple of bites. She was looking so tired and didn't have much energy. On Monday she was very lethargic and basically falling asleep in her highchair while waiting for breakfast. She was barely talking. She looked terrible. I couldn't handle watching her refuse all food. Jim and I had a plan that we would bribe her with little bits of grapes and apples for EACH bite instead of at the end of the meal. We thought the added sugar would perk her up and she would be more inclined to eat more too. On Monday we started out with a little bowl of cooked carrots. She wouldn't even open her mouth. Finally she did take one bite then proceeded to gag. It is just so frustrating because usually she loves carrots, broccoli and cauliflower but I couldn't get her to willingly eat any of them on the Introduction diet. On Intro they are very well cooked (mushier then I usually make them) so maybe it was a texture issue too but she was simply not eating.

One thing to watch for on low-carb diets is ketosis. Going into ketosis isn't all bad - that's basically what the Ketogenic diet is built on - but in Luella's case we were a little more watchful of it because low blood sugar in the past has also caused a bad seizure which required her to be air lifted to SF for a couple days. Signs of ketosis are tiredness, loss of appetite, etc... I had some Ketostix (test strips) and had Luella go potty so I could measure her ketones. They were as high as the strip would measure!! We just couldn't continue down this path and have to deal with the consequences. We decided to abandon the Intro diet and just jump into the Full GAPS diet to see if we could get her to eat something. For snack yesterday I let her have some peanut butter and she quickly ate that. I also juiced an apple for her and she drank that as well. I was hopeful that maybe we could just continue with Full GAPS.

Last night I decided to make her eggs for supper since that has been a favorite since we started LGIT back in September. I also made her some guacamole (another fav). She cried and didn't want to eat any of it. I bribed her again and got her to take one bite which she quickly gagged up!! So frustrating!! So she once again ended up eating peanut butter for supper and some apple/grape/cucumber juice.

Jim and I talked and it just seems like Luella has developed a bad impression of some of her favorite foods. She also happens to be a pretty strong-willed child and was content with simply not eating. So with broth, meat, veggies and eggs being staples of the GAPS diet and her refusing them, we decided to put the diet on hold for now while we can get her on good terms with her food again. Our plan then will be to VERY SLOWLY start to introduce GAPS meals. Maybe just 2 a week for the first week and then gradually build up to all meals and snacks. We will not be doing the Introduction phase at this time. I need to regroup and focus on the Full GAPS diet and recipes now - before I was just focusing on the Introduction recipes. This will be good because many fruits are GAPS friendly and there will be a lot of variety vs doing the Introduction. I believe if we start slow she might not even realize we are changing anything.

So, yes, I'm disappointed. I battled in my head a long time before starting the GAPS Intro and was FINALLY ready for it. I thought the Intro would be the best thing for her and get us off on the right foot. Luella had other plans! :-) I believe God is leading us through this and I trust that He knows what He is doing!! I'm not sure how long before we will be Full GAPS but slow and steady wins the race, right?? :-) AND much prayer!! I can't thank you enough for all the prayers and words of encouragement.

We are pretty amazed that Luella didn't have a seizure even though her body was being stressed. Yesterday I was pretty sure she would have one. She was so spacey and clumsy. Thankfully she didn't have one and as of today it's been 11 days since her last one!! She hasn't gone this long since mid-November! Jim says - she hasn't had a seizure ALL YEAR!!! ;-) Now if we could get to December and say that, THAT would be something!!

Starting New Diet

Luella will be starting her new diet (GAPS) on Saturday. I've been busy this week making chicken stock and preparing to get started. I have mixed feelings about all of this. I'm anxious and excited; hopeful that we will see a reduction in seizures and also nervous and sad about taking away her favorite foods and wondering how she will respond to basically getting broth/soup for every meal and snack. This is NOT an easy diet. It goes beyond food too. We have to be careful about everything that Luella comes in contact with - soap, lotion, play-doh, paint, etc.... I pray that we will know early on if this is helping her.

It's been one week since her last seizure. Last Friday we took the kids to Chuck E Cheese and she had a seizure in the play tubes there. She had a quite a long time playing before the seizure so I was glad she got to have some fun. It was a quick seizure and she even recovered fairly quickly and we still got to enjoy the Christmas lights at Falls Park.

Tonight (Friday) we went out to eat one last time all together. We went to Texas Roadhouse and the kids had a blast with the peanuts there!! Some of the waitresses did a line dance next to our table and Luella really got into that and clapped right along. It was fun and no seizures!

We ask that you pray for Luella as she starts this diet - pray that she accepts the food. Pray for me as I will spend much time preparing Luella's food and learning how to make new things. Pray for the other kids as they will have to make adjustments to their eating as well. Pray for Jim as he'll have to deal with me all stressed out!! :-) Untimely we pray for God's will to be done - whether that means this diet will help Luella or not. I know that whatever happens He will continue to lead us in the direction we are to go. Please pray with us. Thank you!