Monday, August 29, 2011

So Much to Say!

Lily's birthday was really nice! They sang to her in her Sunday School class and we had a party at Peter Piper Pizza for a few of her friends and family. It might have been a little too over stimulating and she had 2 seizures. Poor kid. But she did enjoy her day.
So much to back up and update everyone one. When we took Lily to the new neuro he wrote her a rx for Depakote, it's a recycled med but from 2002, I didn't want to try a new med on vacation so we started 2 weeks ago and was going up slowly. Then the screaming started. Happy/mad screaming and lots and lots of crying. Not eating. I understand changes happen on meds so we were pushing through but by this Saturday she was just screaming and still seizing and Andrew and I made the decision to pull her off. If she is going to have seizures she isn't going to be taking a medication that makes her miserable on top. Maybe we should have stuck it through, but honestly my gut rules now and that's that. I'm honestly contemplating keto again, but I hate feeding Lily foods that aren't fun for her. When you have such few pleasures in life and you take it away, that just seems unfair. Seizures are unfair.
Last week we finally got into to see the Pulminologist which was a a whole lot to do about nothing. She reviewed her sleep study and said she had seizures, apnea due to neurological issues and apnea because of obstruction and now we need to see an ENT about getting her tonsils and adenoids out (I have such a hard time with that word, I want to call it android, random police gonna take me away). Anyway we have that appointment on Thursday. Pulminologist said if she can sleep better (which right now her sleeping is off the hook awful) by getting rid of the obstructions her seizure threshold may be higher and she may have less seizures. Now this isn't our first rodeo, I am not thinking for one second a cure will come as a result of loosing a few body parts, but it does make sense that is may help. The child is the worst sleeper ever so maybe, just maybe a full nights sleep would make a world of difference. And of course if this doesn't work then we move to C-Pap machine (ha). (HAHAHAHAHA) Right. The child with more sensory issues than teeth. HA.
I will update after that on Thursday.
I also wanted to update on Andi Jane also. We tried a medication for ADHD and it was awful. She was grumpy, falling asleep all the time, it was like she is PMSing all the time. I took her off the medication and called the Dr. and said I think we are going to try this thing naturally. And we have been and it is going pretty good. She has her moments yes, but she is in a class with a teacher that is really working with her and it is making an enormous difference, she is also working on control at home. She will always be a highly energetic child, she will probably always struggle with controlling herself, but at least she now understands and can work on it. I took her to a birthday party on Saturday and she said "Mom, Sarah asked me to stop hugging her so I did!" Yes small victory, but a child that has no respect for personal space, that was a huge accomplishment. I said "I'm glad you were able to tell Andi that you needed space, Sarah and Andi I am proud that you respect Sarah, good communication you two!" and they looked at me like I had a pot of flowers on my head.
We got back from our trip on a Friday and Andi was complaining about her tummy quite a bit off and on, but kids with tummy issues, you never know if it is nerves she missed a whole week of school and was coming back. Or we were on vacation eating different foods and on a different schedule. Saturday I was heading up north for a wedding shower and Andi wanted to come, but then she was doubled over and just feeling awful. I got her kids pepto but it would just come and go and she would be in some major pain. Finally by Sunday night she was miserable. Yes I waited til Sunday night. I said to her ok Andi if we go to Urgent Care they may draw your blood and it may hurt, she said I don't care I need a doctor and that was it, we went. Long story short X-Ray showed the poor child totally backed up, I mean almost to her stomach. It was so sad. Dr. said that really hurts. Poor kid. We had to clean her out. No need for details, but it was so sad to me. We spend so much time worrying about Lily and her poops, you just don't even think about your 6 year old. But it is fun being able to tell Andi she is full of poop and mean it.
Oliver is good. He is talking more, not too clearly, but he sure talks a lot. He says crunk using his dutch and german roots with the beginning sound, still wondering and waiting to see if he needs to get into speech therapy. He pooped and peed on the potty all day Wed and Thursday when I stayed home with him, he was pretty excited with himself. This was all on his own accord by the way. He also uses the doggy door and pee's outside. If that says anything.
So these are all the things I wanted to update you all on and just never find the time to do so. So much going on so little time.
You know 3 kids really changes things, I didn't think so in the beginning, I am noticing it much more now. I'm not complaining, just so so busy.

Saturday, August 27, 2011

She is turning 9

There is so much I can say, so much to be sad about and so much to be happy about. Loving Lily for the past 9 years has stimulated growth in everyone who knows her and loves her. She is one amazing little girl or... wait is she a tween now? OMG no way. She is a little girl. Our sweet little girl that gives us so much to be thankful for.
Happy Birthday LilyAnna Blu! We love you!

Wednesday, August 17, 2011

We're Back

I’ve been wanting to update after our week away, but we have not slowed down one bit yet. But I have some time, Calliou is entertaining Oli and the girls are in school so finally here I go.
3 words to describe the past week is Blessed, Overwhelmed and fabulouslyfun (my blog, my rules).
Blessed by wonderful people with big hearts! Our vacation started by getting to the airport at 5:30am with 3 kids. My niece, Ariel, met us there and there was no parking, had to go into overflow lot, had to take shuttle with wheelchair lift, ie we were getting late and I was getting stressed. But let me just say Allegiant Air at Mesa Gateway had a gentleman by the name of Eugene aka Gene that might as well have worked at the Beast’s Castle, he did everything short of singing “Be our Guest” to get us on that airplane. He was incredible and kind and just plain sweet. Him, plus Ariel and Andrew taking our luggage with him made this trip smooth sailing. We were in Rapid City by 10:20am and all in great moods. Not common for me and traveling with kids. When we got off the plane I was thrilled to see my hubby, father in law and Ariel’s boyfriend, Tanner, standing there waiting for us and excited to get our vacation started. We went to Mystic Hills and said our hello’s to grandma Cheryl and the kids just let loose. I have to say if you are ever wanting to vacation out near Mt. Rushmore you have to stay at Mystic Hills. We all hadn’t been there since May of 2006 and it was so great to be back! They have RV spots to rent, places to tent and cabins to stay in. They also have a restaurant/bar that serves good food. It really is a great place, can’t say enough about it. The kids loved it there. So much fresh air, it was cool there, they have a huge lake with ducks to feed and even a cute little paddle boat. Since it was Sturgis Rally time they were really filled up and so a wonderful local family, Curt and Denette, offered for them to sleep in their toy hauler while letting us stays in their beautiful 5 bedroom house! What a blessing! There were 7 of us and we all had our beds/rooms to sleep in. Lily got to sleep in a comfortable futon and Andi wanted to sleep with her. We got to see our good friends Dave and Erin who moved back to South Dakota from Arizona and got to meet their newest addition to their family.
Monday Andrew, Tanner, Ariel, Oli and I ventured into Sturgis during the day, Lily and Andi Jane stayed back with grandma Cheryl and I am so glad they did. All I could think was I had too much clothes on and why do people have their kids here… oops I did, but at least he is 2 and will never remember all those painted naked bodies. It was quite an adventure! It was fun to see though for sure, all those bikes! It was pretty surreal. But I was glad we were staying 20 miles away at Grandma and Grandpa’s place.
Tuesday was the day of the run, after we sold a ton of raffle tickets and got everyone signed up we went on Lily’s Run! Curt and Denette have a rental company for outdoor vehicles and let us drive the 4 seater Polaris RZR and we were able to put Lily’s car seat in it and Andi sat next to her in the back. It was a blast! We followed 50 some bikes who were all riding for Lily! For our Lily! They all had their green CDKL5 band on their wrist and it choked me up several times to see the support for a little girl most of them didn’t even know. Lily LOVED that ride. She laughed, she smiled and every time a motorcycle rode by with its loud engine she giggled. It was all so intentional and just filled our hearts with joy. We just don’t get to do that kind of stuff with our kids and to have a week of just pure fun was so good for the entire family. Oli got to hitch a ride with Grandma Cheryl and Papa Steve in their truck. He was included as well, no worries. We made 4 stops and by the end all the kids were in the truck and Andrew and I were pelted with rain, but we laughed the entire time and just had an amazing day. During one of the stops an older gentleman who appeared to maybe have drank a little too much came up to Lily and me and said “don’t worry, God will take care of her” and I said “he already has”. And I meant every bit of that. It may have been one of the last places I thought I would see God, but he was there in Sturgis South Dakota! After the run we had a pulled pork dinner, supplied by Mystic Hills and following dinner was the auction. Oh my goodness what a hoot the auctioneer was. He was getting $100 for t-shirts, $20 for a rock! He sold a kiss on the cheek from Grandma Cheryl for $100! Andi Jane joined Grandma with that expensive kiss and kissed the winner on the other cheek. We also had real items like leather gloves, handmade blankets, a stay in Greer, awesome rings from Nightrider donated from my friend Carrie from Jr. High! We keep in touch on facebook and she saw our run and wanted to donate 2 rings! These are awesome rings too, they went for a high price and seriously people you should check out their website, it is sweet! Andrew wants a ring for the next gift giving time. Our anniversary is tomorrow, so it might not happen by then, but maybe Christmas. After the auction was done we had Lily pull the raffle ticket for the bike. We had sold quite a few online, but mostly all in person at the campground. The odds of the winner actually being there was slim, but you wouldn’t believe it, he was there! And he was the guy saying he really wanted that bike and may buy it off the raffle winner. When Lily pulled his name and Grandma Cheryl went over to him to hug him and congratulate him he said he wants to donate it to the auction. I doubt there was a dry eye there. What a tremendous sacrifice. OVERWHELMED! The bike went for $4,000 in the auction! I forgot to mention the poker run winner and looser also won a cash prize but donated that back and the 50/50 raffle winner donated his money back.
The couple that organized the run was Michael and Chris Burgen and they do this type of thing yearly getting toys for disadvantaged children. They even rode a ton of toys to kids in Joplin, MO this year. They were so gracious with their time, their knowledge and their support. I just can’t say enough about everyone who made it out. I want to name everyone personally but I can’t. Just know there were many hands taking part and each one meant the world to us.
So when I say OVERWHELMED I mean OVERWHELMED! We don’t have a total yet on the run, we still have to figure out the total bring in, but it was so successful! So BLESSED SO OVERWHELMED!
The next day we headed to Colorado, long story short we had 7 people ride from South Dakota to Colorado is a truck. Andrew laid in the bed with blankets, a sleeping bag and 2 tylenol PM’s. Funny now. Not so much back then.
We got to spend the rest of our trip at Andrew’s brother Jeremy and Andrea’s in Windsor, CO. And what a great way to spend the rest of our trip! Our nephew Mason is 6 months and crawling and it was the first time we met him. That made me sad, but so glad we finally got to formally meet. It was also so fun to see Oliver and Jayda who are only 11 days apart! She can talk circles around him, it was so funny. Thursday they took us out on the boat and we spent our day there. What a great day! The kids had fun, Lily enjoyed it so much! We just tied her car seat to the captain’s chair on the boat. Andi got to ride a jet ski and I got to swim in the lake. Something I just love to do, I love swimming in natural water. Maybe that makes me weird and although it was cold, it is just so fun! Andrew got to wake board and not too bad for an old dad, he still has skill! Then end of the night was spent with wine and Chinese food. And Friday we said our goodbyes and Ariel, the kids and I flew out on Allegiant in Ft. Collins. Not as great as Mesa Gateway, but no point in complaining. It was a great vacation. Absolutely wonderful. So great we can’t wait to do it again!
I will make a formal announcement with the money raised and more pictures, but I just wanted to share our trip personally like I always do.
FantasticallyFun! Blessed! Overwhelming!
Thank you thank you thank you to those who helped along the way, we got help putting the bike together from Liberty National Bank in South Dakota, they paid for casual day and the money went to help us fix up the bike, thanks to our sister in law Carrie for setting that up! We had help from friends The Porter’s, the Abbot’s, the Grimes’, grandma and grandpa Nothdurft, the Yaegaer’s, Tanner Stump, the list could go on and on!
Thank you for those of you who purchased raffle tickets, and those who made it out that day. What a fabulouslyfun, overwhelmingly blessed week!

Saturday, August 6, 2011

On the Road Again

Andrew and Tanner (my nieces boyfriend) pulled into Ft. Collins last night and stayed at his brothers place. They left Greer at 5:30am and made it to Ft. Collins by 5pm. I have to say that is why I did not want to drive with him, I can imagine they never even stopped to pee. Just went in beer bottles and when pulled over the cop drank it.. ok so never mind the last part ....
The raffle tickets are selling online and I am sure we will sell a bunch in Sturgis! This is really exciting event to take part in. I did want to mention, we are not staying in Sturgis. The kids will probably never even see Sturgis, unless we go during the late morning one day, we will be quite a distance from there. So I know those that know me know I wouldn't let my kids hang out with saggy milkers (quote I got from a friend that I just loved), body painted naked ladies of the Sturgis Rally, but if you were referred to my site and don't really know me, rest assured. Although I will do all in my power to go out one night and see all those saggy milkers for myself, rest assure that my kids will be safe and sound with a family member in the house we will be staying at.
The kids and I fly out Sunday at 7am. I didn't say be at the airport at 7am, I said flying at 7am. I mean, kids up, loaded into the van, unloaded at the airport, wait in line for seats, go thru security and then on the plane at 7am. Wish me much much luck. Thank God I am bringing my niece Ariel and she will fly with me and help out this trip. I would not have been able to do this alone and I really didn't want to drive with Andrew and the kids. So while it will suck getting there so early, like 5:30am early with 3 kids, it will also be nice to get in at 10:30am and have the whole day there. We plan on staying thru Wednesday, the run is Tuesday, then we will all drive to Ft. Collins and stay 2 days where we finally get to meet our new sweet nephew Mason! He was born in February and we have only seen him thru pictures. We will fly home from there on Friday, thanks Alegiant Air!
The new neuro was nice. He was on time and very thorough, spent an hour with us. Most of her records did not make it to him so we got to go over almost 9 years in that hour. Andi went all ADHD in there and was hard to manage, there was no way I would make Lily's appointment in Phoenix and get to school in time to pick her up so I had to bring her along. I mentioned how bad the seizures were and he rx Depakote since it helped for awhile the first time we tried it. I have the script sitting on the kitchen counter. Since I got her dose back up to regular on the Clobazam she has been doing much better. He also bumped up her VNS so that might be also what is helping. There were a few things that bothered me and the timing was just all wrong I guess so it bugged me more.
Backing up I was told we could use Make A Wish for Lily. Now I always thought of MAW for kids with cancer who aren't going to survive. I think it is an amazing organization and just never thought it would be something for Lily. So when I kept seeing CDKL5 families talking about wishes, I inquired. Some used their grant for equipment needs, vacations, etc. I looked into it and most likely CDKL5 is a qualifying disorder. Now as you can imagine that didn't really thrill me. I mean, it would be nice to have a wish granted, but the meaning behind it means Lily's life will not be a long one and knowing there are girls in their 20's with CDKL5, I guess I just trust that will be Lily as well. But then again, we don't know anyone older since this diagnosis is so new, I just watch these older girls with so much hope and inspiration and want to see them in their 40's and beyond. That Wednesday morning I got the call back from MAW Phoenix chapter and she was asking me questions and was going to follow up with our Pediatrician to see if she qualifies.
Back to the appointment, the Dr. says at the end, "did your previous Neuro talk to you about sudden unexpected death" and then started talking about how an epileptic has a higher death rate than the average population etc. I said he never said anything to me, but I don't think he felt like he had to. (in my head I was thinking like you don't have to) I get it, he was making sure I understood the importance of seizure control. Like that hasn't been my mission, my passion, my life's desire for Lily for these past almost 9 years. He recommended going back and completing the corpus callosotomy (brian surgery) and I was very negative towards that option and maybe that was his angle to push the surgery, she could die without, but she could die with it and I think a part of me died that last surgery and I am not ready to let more of her or me go. But I think after he just sat there and listened to me rattle her history like I was a medical professional myself, I am not bragging, I really think I could have my doctorate in neurology if given by life experiences. OK maybe not, but at least enough to be a PA. Anyway, my other neuro knew I KNEW what can happen. What could happen in her bed while sleeping at night. While at school away from me, on the school bus, during meals. I know what COULD happen to our precious girl. I just spoke with Make a Wish for heaven's sake. But if I take every step in front of me thinking about what COULD happen, I'd never get anywhere. I take my strides into a foggy future with long quick steps. I get it, I really get it, this was important to him to share, but I won't tip toe around this world with what COULD happen following behind me.
So we go to South Dakota with a bike to raffle, a bike run to run, an auction to auction with purpose and meaning. We want a cure. We want in the future a little girl with CDKL5 will get a newborn screen and when she tests positive for CDKL5 they will give her medication that will keep her from ever going to a Dr. letting her parents know that at any moment a seizure could take her life.
So if we get a wish granted and when that day comes where CDKL5 is cured I will write MAW a huge check giving the money it took our wish to be granted back in full.
So wish us luck, on the flight, on the raffle, on the run and the auction, pray for safe travels and goals to be obtained, and some seizure relief while we are far from home.
Thank you to all of you who support us and love us.

Here is the bike in it's finished form

Wednesday, August 3, 2011


Seizures suck. They really really suck. God, I hate seizures.
We went low on clobazam again, my fault. We get it from Canada and every time I call to order it they will call me back the next day on my house phone, I get the message after they close, call back the next day and then they ship the next day. Still my fault, I know this and really need to call sooner. But my middle name is procrastination.
Anyway she went from 1.5 2x a day to .5 2x a day for 2 days while waiting for it to show. I knew seizures would act up during that, but she's been back on her regular dose since Monday night and this morning was drop seizure then scream and cry NONSTOP she then got the hiccups then went into a grand mal and then she seemed better. I know weird. It appears the GM stops the drops though. But she was doing great in the beginning of vamping up the VNS, like best she had been in a long time, THEN it seemed like the higher we went the worse she was getting. Is that even possible? I am just so tired of seizures. So so tired.
It is always a great reminder though of what we are raising money for. What we are fighting for. When I think about Lily's life I think she is a happy little girl and that is what keeps me going, but mornings like this make me wonder how happy can she possibly be? I mean she cried herself into hiccups. She has been grinding her teeth lately and haven't done that in years. It strikes me as stress. I don't know if that's true, but I don't want to think of her stressed. Ugh. My baby girl.
We meet the new neuro today at 1:45pm. Praying he is wonderful. I had such a great relationship with our last guy, for 7 (!) years, so the bar is set high.
We head out to South Dakota Sunday, the girls will miss school all week but it will be worth it! The run is on Tuesday. Please look at the top of my blog with the pages and click on 2nd annual Lily's run for more info and how you can buy a raffle ticket for the refurbished Harley my husband has been OBSESSED with for the past 6 months. Watching him give that away might be the saddest and funniest thing to happen this week. He loves this bike.
We have had so many people take part and help out with the bike either financially or physically and we can't thank you enough. We are thrilled to have this opportunity to fund raise and I can't tell you how important it is. Kids shouldn't have to live like this. I want all our efforts to make the future children with CDKL5 to have little or no affects from it. I want our life to serve a purpose and this is it.

Monday, August 1, 2011

Weekend fun!

Andi Jane had been asking all week to sleep in the living room with Lily on the floor. I finally let them do it Saturday night and they were so cute. Until 1am Lily was completely off the blankets rolling around and talking to herself so I put her in her bed only to have Andi come into our room about 30 minutes later saying "you promised I could sleep with Lily" and ended up in bed with us. Fun times. Here they all were reading before bedtime.

Then Sunday I finally wore him out and got Andrew to buy the chalk paint and paint our cabinets. This all stems from when I saw the fridge on Good Luck Charlie, I was like what is that? A chalkboard fridge? It's amazing!

I posted on facebook, how do I get one of those and apparently there are lots of blogs of how to do it to your fridge. I tell Andrew, we have to do this and he thinks I'm insane. After much debating I agreed that ok, painting our fridge is a bit extreme, so how about some cabinets and he agreed. Then it just took weeks of hinting, suggesting, nagging and begging but Sunday after church and lunch our family of 5 went to the depot and for $15 for the paint, 2 tiny rollers and a couple brushes we had our supplies.

Let me first say I am not even trying to pretend I am a craft blogger. I don't even read other crafty bloggers. All it does is show me my drastic failures as a woman. I like crafts, I think they are fun. For about 20 minutes. So I am just sharing this because I think it is pretty cool and it would have looked far worse without my husband who just so happens to be a paint contractor who has been painting homes for 10 years. Need a quote ;)

And I have to be honest, I can probably name 80,000 things I'd rather do than do a home improvement project with my husband, like say a needle aspiration in my thyroid, but I knew the outcome would be worth it. And this was coming off the heels of putting a trampoline up with him just on Friday so that should tell you how much I wanted this thing.

So here we go, I don't really have a before, he started painting before I knew it but here is during and after.

I think they like it too....

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