Slacking off again!

I know, how terrible! I've got some thing to update you all on and a request. But first, the update...

Lily very much enjoyed summer school and Taz began riding the bus. That went well! He's doing well on the bus and hops right up when the bus get's here. I was a little worried about that as he is not big on car rides, but he seems to have no problem with the bus.

Lily recently got glasses and looks cute as a button. I don't have any pictures on my computer right now of her in her glasses but I will get some soon and add them here. She is now a big first grader and as always loves school!

A few weeks back we had a bout with the stomach flu. I am happy to report that while Lily did get the stomach bug, she did NOT have a seizure. We are now at 16 months since her last status seizure and 10 months since a seizure of any kind! This has been the very longest she has gone since developing epilepsy! Yay! Keep your fingers crossed this continues!!

Ok so here is the not so good news.....Lily is having a lot of trouble in school. Let me tell you Lily's different DX's. She has ADHD (combined type), Epilepsy and a mild variant of Canavan Disease. Now we (we being me and the school) are running into a wall here on how to help her. She cannot slow down, ever for any reason! This makes it very difficult for her to learn because she rushes through things. Also some days she will be spot on, know everything she should, get her work done, etc, etc with no problems. Other days she is off, the things she knew before are totally gone (literally like she never heard of them before), etc, etc. There seems to be no rhyme not reason to when and why this occurs. Here is my request to you, Dear Reader. Please, please, please share this blog post with everyone you know! We need some help here to figure out what is going on and how we can help her learn. The school is more than willing to do whatever it takes to help Lily, but I firmly believe that my daughter's education is not just the school's responsibility, it is mine as well. So please share this post and if you can think of anything that may help please drop me an e-mail at lilysfight@yahoo.com.....also if you know of any good ADHD groups or websites please let me know!

Also Lily and Taz were recently in our local paper....you can read the article here! There is a picture of Lily with her glasses on in that. ;-)

I know this update is not very long but there is not really very much to update you on, which is a good thing!!

As always, thank you for reading!!

An update...already? Wow!

That's right folks.....I am all over it this morning! Ahhh coffee! Anyway, happily everything is going well. Last Friday we went to Cedar Point thanks to an amazing group called A Kid Again. We had a blast! It was warm but with the breeze off of Lake Erie it made it very nice. This year I got more pictures so this post will be graphic intensive! We opted to not take Taz with us this year and I am glad we didn't. It was 83 and he would have been miserable.

So Lily had so much fun and rode a ton of stuff!

I am glad she loves rides. Mom here is more of a coward and not too keen on rides.

Here is Lily getting her face painted by one of the awesome volunteers from the Kohl's Cares program!

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She did a great job!! No small task as Lily has a hard time sitting still AND she kept picking up the brushes and asking 1001 questions. This lady was great and so very patient with Lily

The oh so awesome son! Yes, my 13 yr old has a mustache! WTH?!? lol

Pikachu refused to let me be in the picture! Stupid pokemon!

What do you mean it's time to go home?!?





















This was a great time for us to go too. Starting tomorrow I need to make a ton of appointments for Lily. The usual stuff, eye dr, dentist, well-child visit, and then things like Neurology and Genetics. So it was nice being able to hang with the family and other families that understand our kind of "normal'! Thank you A Kid Again!!


Lily is now in summer school and she loves it! Taz and Lily have been riding the bus now. Lily loves the bus but Taz not so much. Taz does not like vehicles (except hay wagons, yes hay wagons! lol). I am worried because technically I should have a week to train him, train the person handling him in a new situation. Unfortunately there is a policy of no parents on the bus. While I understand the new for this policy and quite honestly liked it a great deal, this is causing a training problem. I was able to train the handler for Taz for about an hour. We shall see how it goes, but we may need to come up with something else for training. I may have to call the amazing trainers at 4 Paws and see what they suggest. I have a feeling they are going to tell me I need to be on that bus to train him and I don't believe that is possible. Anyway, we shall see! But I just talked to Lily's teacher and Taz's handler in school and they said he is doing amazing in class! So that's good!


This Saturday we are taking part in the Walk For Wishes Walk-a-thon for Make A Wish! If you look further back in this blog you can see when Lily got her wish from Maek-A-Wish. It is an amazing charity that we are pleased to be raising money for! If you are in the Akron, Ohio area, you should come join us for the Walk-A-Thon and come walk with Lily and Taz! It's at Lock 3 in downtown Akron. Registration is from 9:00am-10:00am. We would love to have you on our team! If you aren't able to attend, please consider making a donation. Nothing is too small! You can donate here. As you can see Lily and CJ have not gotten any donations yet! They would really like to raise some money! So if you are able please donate on one of their pages! Just click one of their names and then click "donate now." If you want to walk with us, you can also join our team through this link!


Well my friends, that is all for now! As always, thank you for reading!!

So I am very, very, VERY late with an update and for that I must apologize. So let me start by saying that in the past year Lily has only had 2, yes that is right, count 'em 2 seizures! And one was triggered by a fever. So this is really great. Not sure whether they are just getting the meds right or if she is outgrowing them, but either way we are really very happy! Ok so on to the updates, Lily and Taz had a great year at school! Taz was the most popular kindergartener I think in history! lol He did really well at school and I was most impressed by the kids. I was told by many of the children that you can't touch Taz and that he is working. The kids were all great! :-D Lily and Taz will be attending summer school in prep for 1st grade. They will be taking the bus and today we met the bus driver and her aid, 2 very awesome ladies that are excited to have Taz and Lily on the bus. Taz did good on the practice run, but being his doggie mama I am still nervous. The super awesome bus driver told me that she would call me after his first trip without me to let me know how she did. We are always surrounded with wonderful, caring people. We are so blessed! Lily is growing like a weed!

As you can see! Baby fat is disappearing and she is looking more and more like a big kid and less and less like a baby. *SOB* She is also listening better, making better choices and her impulsiveness is disappearing which is for my anxiety level! Our household was ROCKED this year by the Norovirus (AKA stomach flu) 3!! times. The 3rd time is what trigger Lily's seizure. She ended up in the hospital for almost a week, not because of the seizure but because of the flu itself. It would not leave her system! Oh for the days of the household only getting this kind thing once a year and then leaving us alone the rest of the time. Not so this year! Sign of the times, maybe? I know that this loooong overdue update is short, but there is really not a lot to report. Things are good right now (I will not use the word great! The word great triggers the epilepsy monster! I swear!). I am going to get some more pics of Lily and Taz soon and add them to the blog. And I promise I will try to be better about updating!! As always, thank you for reading!