Calm Amongst the Chaos

Happy 6th Birthday LilyAnna Blu!

Kim Nothdurft

August 29, 2008

Happy Birthday my sweet LilyAnna Blu! I love you!
August 28th 2002 my girl came into this world and 6 years later I just can’t believe all we have gone through.
I love you more than you could ever imagine and rocking you to sleep in the rocking chair last night had to be my highlight of the month! We never get to do that sort of stuff anymore and I am so glad we did.
I promise to post next week with pictures and all, but I have no computer at home right now and can only update from work and crazy I know, but at work I am working. Sigh.
Happy Labor Day weekend, we are off to Greer to cool off a bit.
Promise more next week.

Feeling a little better

Kim Nothdurft

2 comments

August 26, 2008

Yesterdays post was written after being woken up at 4:50am and unable to go back to sleep. Then followed by an AM fight with Andi and taking Lily to 3 therapies by 11am. Then 2 seizures within hours apart, I was a little upset. She ended up having 3 seizures total yesterday which is upsetting, but we all took a long nap and I went to my yoga class last night and I feel refreshed. Plus I got about 9 hours of sleep last night, so yeah, I’ll take those reigns back.
Yes I have those days where I want to be told what to do and just follow, but that isn’t how epilepsy works. It is numerous medications and a lot of gut reactions and interestingly enough a lot of parental advice goes into what the neuro decides. At least in our case and at times I want to walk in the office blindly and let them tell me what to do, but I know too much and unfortunately our neuro knows I know too much and he relies on me with every decision.
Maybe it is time to try keto again. Ugh. I don’t know. I hate keto. I hate not feeding Lily what she loves, but I do remember she did do pretty good on it. Not perfect for sure. It was never a cure all for us, but it has been many years. I guess whatever we decide we better do it soon since I need to have this thing flowing smoothly before a new member boards this family plane.
I don’t know. Send some prayers this way. Pray for wisdom for me and for Lily’s neuro that we make the right decision regarding seizure control.
Have I mentioned I hate seizures? Not today at least, right?

Up, Down, Up, Down

Kim Nothdurft

no comments

August 25, 2008

Sigh… so Lily has had two seizures today and it is just a little before noon. These are the hard ones that wipe her out. She had one after horse therapy and then just a minute ago before lunch. We have to leave in 30 minutes to go to Music and I am afraid she will be so wiped out I won’t be able to feed her before our long car trip to Phoenix. Ugh. She seems to do well for awhile and then bad. Well never well, well, but not two big seizures in a day.
I don’t know if we should try those changes again, but I am so afraid after her reaction to the Depakote last time to try it again. I am sure as all hell Keppra does nothing, but I don’t want to wean without a plan and I am not sure I want Depakote part of the plan. Another problem is her drops are increasing. But if I up the study drug too much she seems to have worse GM’s.
Last night Andrew was going off about not liking these new seizures and wanting change and I said “then you talk to the Dr., I’m tired”. I wasn’t trying to be rude, I am just tired. I am tired of seeing my baby seize every day too. I am tired of trying new things to see it back fire. I am tired of feeling so much guilt for ever starting this study. I just want to hand the reigns over to him and silently bow out. I just feel I am out of options.
I’m tired.
Sorry for being a party pooper I am just bummed.

Scratch those changes

Kim Nothdurft

2 comments

August 20, 2008

So two days into Depakote I got a phone call from Lily’s school saying she was sick. Bad diarrhea and dry heaving. No high fever and Lily’s nurse was pretty sure it was a reaction to the new drug. Knowing we were leaving and having Grandma in town I decided to stop changes. Put Topamax back up and discontinue Depakote. That was a good idea because apparently Lily did very well while we were gone with no big seizures. I guess her drops were a little worse so we tweaked a little with the Topamax and study drug and I think we are at a good place. She seems to be doing better than she has been in a long while. Yesterday was the second day this school year she didn’t have a seizure at school. That is awesome! Fingers crossed it stays nice and mellow around our home.
Playa Del Carmen was beautiful! The wedding was gorgeous! I have pictures on my Flickr account if you all want to check them out!
I also uploaded new pictures of Lily at Horse Therapy. I just can’t get over how big she looks like on the horse. She is so in her element on Ruby the pony.
Big girl is having her party on Saturday! I cannot believe I will have a 6 year old! When did that happen??????
Thanks for all your prayers and concerns for Lily. Please continue to pray that she stays stable and maybe we start learning some new stuff without the darn seizures messing everything up. Have I ever mentioned I hate seizures?
Just wondering.

IEP

Kim Nothdurft

1 comment

August 6, 2008

So bright and early this morning I met with Lily’s teacher, the counselor, her OT and ST for Lily’s IEP. It went as well as to be expected. Everyone is so nice and although I hear horror stories, I have yet to run into any. A lot was copied over from last year and it is so obvious how involved her teacher last year was and how much she knew Lily. It was like I wrote the report. Her new teacher seems very loving and well skilled and I think it will be a good year. Even better if we can get these seizures back under control.
This past weekend we went to Pine, AZ. It is about a 2 hour drive from our home straight north. Andrew had a couple friends and their girlfriends join us and we did some fresh water swimming at Fossil Creek which was fabulous! The water was a little too chilly for princess Lily so she sat and watched, I got some gorgeous pictures of her (check out my Flickr)! Andrew’s friends were so awesome in helping getting Lily down and up from where we camped. It was not an easy endeavor and I was gracious that they were so willing to include Lily. But although the weather was cooler and the air was so much cleaner, Lily still had 4 seizures that Saturday and 3 that Sunday. Could be the elevation? I am not sure. But then we came home and she was back to one a day, which we can handle since the study drug has about all but cured her drop seizures. But since we went to see neuro on the heels of that weekend I asked for change, but I guess unless I see her go out of control again, I might just delay the change. This is what he proposed:
1. Weaning Topamax, a joint decision, she has been on that since 18 months old! I don’t think it has ever done much for her, but because it is safe we haven’t messed with it. So we will wean that first. He says cut it in half for 10 days then stop. I am far more conservative than him and will take about a month in getting her off.
Study drug: Stay the same, a nice low dose that seems to be warding off the drops
Keppra: Lower just a bit, but keep her on
Dilantin: Add. Sigh… I will if needed, but ugh, a new drug….well new old, she tried that one when she was itty bitty and it worked then it stopped working.

And to keep in mind trying again the Ketogenic diet. It has been years since we tried it and I suppose I’d be willing to give it another shot if it meant getting her off so many meds. I don’t know… It is a lot of work and Lily is so motivated by sweets, I would hate to take away her one true love in life. We will see. I am praying that the answer will be easy for us to make. No answers seem to be easy, but maybe just maybe this one will be.

So that is our update for now. Oh I had an u/s on Friday checking for down syndrome and all looked well and they didn’t see any signs of DS. But the tech said she was 95% certain that I was carrying a boy. I won’t believe it until our 20 week appointment, but I was looking online at how factual determining the sex this early with the u/s we had and it was about 90% right at 13 weeks. So maybe we will get to find out all about snails and puppy dog tails.

Back to School

Kim Nothdurft

no comments

August 1, 2008

Lily Bug went back to school on Monday and so far things are going really well. I like her teacher and all the aides are the same, that is very comforting! They all know Lily.
Unfortunately Lily has had a seizure every day at school, but Wednesday. Yesterday, Thursday, she had two before school, one at school and then one last night. 4! Sigh… we upped the Keppra again, that usually helps for a few days, but we can’t keep upping that every few days. We go in on Tueday for our monthly appointment so we will discuss options.
Monday Lily has her full day of therapy, 7am horse, 9am OT, 9:45 ST, 1pm Music therapy so she will miss school.
This weekend we’re going up north a bit for the day and one night. I’m really excited, it is so beautiful up there, were going to a town called Pine. We’re gonna swim in fresh water, my favorite thing! Have a picnic and show the kids there are fun things to do outside in the summer, you just have to drive a bit out of the valley to drop the temps!
I had an ultra sound today, it was an in depth one to check for Down syndrome and the baby looked good, measured a couple days ahead and the tech was 95% certain it is a boy! I still am waiting for the 20 week u/s to make me believe it, but she showed us something popping up on the little guy and it sure looked like a pee pee. My next ultrasound will be in probably 6 weeks or so, I will update for sure about that!
Happy Weekend!

One confusing little gal

Kim Nothdurft

1 comment

July 23, 2008

Sunday Lily had 5 for sure seizures and we think maybe one more because of the way she passed out on us out of the clear blue sky. So probably 6 big seizures that knocked her out. Coincidentally I upped the study drug that AM. I lowered it back on Monday and called the Dr. fuming. No call back that day, and Lily only had one. Tuesday, Lily had three drops and nothing else. I kept the study drug down and will continue to keep it there and I refuse to ever up it again. Well lo and behold FINALLY I get a call back from a neuro other than our own and I said, “never mind” I explained everything and he said we can still increase Keppra if she has an increase in seizures. But I think, scratch, know that the study drug while yes it helps drops, it makes her GM’s worse so I think if we stay on at a low dose, we should be ok.
Monday Lily was worn out, cried the whole time on the horse and therapies seemed like a bust so it was a bummer. She was just so tired and I don’t blame the poor little bug. She finally seems to be feeling better and out of her haze. She is home with her nurse and I am on my way there and since I got no phone calls, I am assuming the day went well.
School starts on Monday and tomorrow we meet the new teacher…. please let her be good. I doubt she can hold a candle to Mrs. Jean and Mrs. Amy, but I am praying she can and she will! Wish us luck!
I will post on Friday with an update!
Check out Flickr, lots of new pictures! I don’t have a ton of Lily bug unfortunately, but there are some cute ones!

Christmas in June

Kim Nothdurft

2 comments

July 22, 2008

Very late in sharing these, but Lily’s PT works for this awesome agency that does these great little parties for their families. This past June they had Christmas in June and we had a great time at an ice skating rink. It was such a nice escape to leave 110 degrees and walk into a building in the 50’s!

Here are some fun pictures!

Here is what Andrew did all day, he would go as fast as he could and spin Lily! She LOVED it and then Andrew did it for all her friends! (if you click on the picture you get a super sized version, the one with me and Andi is fun to enlarge b/c the look on her face really says how much she loves to ice skate! lol)

Here is Andi and me trying our best… Andi was not much of a fan!

And here are a couple shots of our stay in Utah…. this is the loaner chair we were using that Lily was way too big for!

And this is how Lily slept (if you remember I put her mattress in between the boxsprings of her bed and mine) btw: she didn’t start with her head down, she just managed to get down there

And lastly my sweet girl at my cousins shower this past weekend. Lily had such a great time she ate 3 little tea sandwiches (egg salad) and a whole piece of cake and this was AFTER she ate lunch!!!! Cute thing! And she hasn’t lost a tooth, that is how wide her space is of her front teeth…. let’s hope the big ones come a little closer!! 🙂

Cancel my nomination

Kim Nothdurft

1 comment

July 16, 2008

Cancel that nomination you all had for me for Mother Of The Year. Due to the fancy wide world web I saw that we would be waiting a long time for the school bus next week. Lily starts school on Monday the 28th. Oops. I still don’t know who her teacher is. I think I know after looking on the schools site, but I am not 100% sure. I have to figure out care for her for one more week. Her nurse can do two days, but she is going out of town so I’m going to call and see if they have anyone that can fill her spot. It’s tough working with her. I hate for her to lie on my office floor. She is so big she rolls into everything and then cries. She needs to be at home, it is too boring at work.
Yesterday she had a good day. She had just one seizure and hardly any drops and her PT took her swimming for aqua therapy and Lily had the time of her life. PT said she was a different kid in the pool. Lily loves swimming! Especially in our bath water temp pool. No one else likes it that warm, but princess Lily finds it right to her liking.
So we are hoping things are evening out right now. One change at a time is the right thing to do.

Confusious says…..

Kim Nothdurft

no comments

July 15, 2008

I never put Lily back on V. I lowered the Keppra to slowly wean, I wasn’t cool with the whole “just take her off”, and I lowered her study drug. Well I guess she did pretty well when I was away this weekend, but Andrew “accidentally” gave her a full dose of Keppra the whole time I was gone. I came back and fed her Sunday night and lowered it again as well as the next AM and Monday she had 4 seizures. Not sure if it was the Keppra, who knows, but coincidentally Neuro called me yesterday, on his own, I didn’t call him, and he said I tricked him and she was not supposed to be on the V while on the study and I very frankly said “I know she can’t, and I didn’t put her on, BUT at this point I don’t care about the study and Lily’s well being is far superior”. He then kinda rambled and agreed, but said he cannot give her the study med, which we all agree is helping with the drops, if she is on V. So I said I understood, she is not on V, he was relieved. I said I am keeping her where she for now and even though she isn’t perfect I am not making too many changes at once.
It is all just a big mess right now and I don’t want to take one away and add another and lower another. We just have to do this all one step at a time and my step right now is lowering the study drug. Which I didn’t tell them, but they can kick rocks, that is what I am trying right now.
So I don’t have much to update. Yesterday she had 4 grand mals and after one GM she had a cluster of myoclonic jerks that really upset her.
School starts next week. I have no idea who the new teacher is yet and frankly I am not even sure what day school even starts. You would think you would get something in the mail, or something. Oh well, I do have a computer and I guess these days that is all we need.

Bette Midler was incredible and I recommend her to anyone thinking of going! Absolutely wonderful!