Hello again world!

I know it's been over a year since I updated and therefore I have A LOT to say. But first an update on Lily. She is still seizure free! This July will be 4 years since we had to give her diastat and next Feb will be 4 years since her last seizure! They wanted to start removing her from her meds. I requested that they do an EEG first, then we would go from there. After the EEG they stopped talking about removing her from her meds. So while she is seizure free her brain waves are still not in a proper pattern and the potential for seizures is still there. So we as always will remain vigilant in keeping an eye on her and making sure that she isn't having short seizures in her sleeping that we are missing. So far it seems not, but it can be hard to tell with noturnal complex partial seizures. We will just keep our fingers crossed and keep hoping for the best. Seizures can come back even after years of being seizure free. Unfortunately, until more is understood and learned about seizures, this is what scores of people with epilepsy and seizures face. You enjoy the quite time and pray it stays that way but realize that any moment for no apparent reason what so ever it can all chance. However, this isn't a pity party. We are thrilled that she has been seizure free so long and that everything is peaceful in that area right now.

Anyway, enough of that. I need a bit of a sounding board and I am going to use Lily's blog to do it. ;-) I want to get a few things off my chest, particularly about children with hidden disabilities. Parents of children with hidden disabilities have the same frustrations as parents of children with visible disabilities but these frustrations just present themselves differently. For instance with Lily, you can't tell that she has any kind of disability. She runs, jumps, plays, talks (and talks, and talks and talks!) ect. But then she will do something off the wall, like repeating a question she just asked, 5 times in 15 minutes. Or she will tell a story that makes no sense. Most of the time it's because she is leaving key information out and once you get that key information out of her it all makes sense, but not until then. The looks that my friends children who are the wheelchairs receive are now received by my daughter. I much more prefer people to ask me what is going on with her, then just stare at her trying to guess inside their head what might be the matter. But then you cross into very sticky territory. "Hey what's wrong with your kid?" or "What's going on with her?" are not good questions to ask. "She seems fixated on the question" or "I had a hard time following that story but now that she explained more, I get it" are great ways to break the ice with me and then if times allows I will happily explain what is going on with her. And I can't give you a magic question to ask anyone with a disability about their disability because everyone is different. Some people prefer a direct approach and question and others (rightly so) feel it none of your business and to keep your nose out of it and don't want any questions nor feel the need to explain at all.

Ok anyway back to the hidden disability issue. With Lily having a hidden disability people at times expect more out of her then she is able to give. Please don't mistake this as me giving her a way out. It's not. I NEVER allow her to use her disability as an excuse and quite honestly at this point she doesn't even know that she has one. She knows she learns slower than other kids her age and it can be difficult for her to understand some things, but that's it. BUT there will be times when she asks the same question 5 times in 15 minutes because she has short term memory issues. And she will tell these stories that make no sense until you drag key details out of her that she forgot to include. I have recently realized that she does this because she already knows these details and thinks that because she knows them everyone else does too.

There are times that I have had people roll their eyes at me because I say that I'm a special needs mom. Just because Lily doesn't look like she is special needs doesn't mean that she isn't special needs. Just because you can't see it doesn't mean it's not there. Lily requires CONSTANT redirection almost all the time. She gets fixated on things and while she will transition ok from one task to another she will bring up whatever she is fixated on over and over and over, for days, weeks and sometimes MONTHS or longer. We cut down a tree in the back yard when she was 2. She loved that tree and would pretend to swing on it. She is now 9 years old and we still hear about the tree that we cut down. And we probably will continue to hear about it forever becasue it's something that she is fixated on. Lily is on a pleura of meds to keep her seizure free and must take these meds three times a day. Missing a med could bring the seizures. If she is working on a task that is challenging she will try to lead you away from the thing verbally, trying to practice avoidance. Lily has to have things repeated to her all the time to get them to stick in her brain. You may spend the whole day teaching her something, but then the next day she doesn't remember it.

This is not a post to say woe is me and look what's all wrong with Lily. This is a post for awareness. I do and will continue to wear my badge of special needs mom with pride. Because that is what I am. I am also the mother of a beautiful 9 year old girl who can talk (and talk and talk and talk), walk, run, jump, dance, etc which she shouldn't be able to do with her DX. We love our little girl just the way she is. I just wish life could be a little kinder to her. I recently came across a quote on Facebook that I love and I will close with it;


I would not change my child
But I wish I could change the world for my child


Thank you for reading

Well hello there! Long time no update.....I know. I would tell you that I am going to do better with updating but I don't want to lie to my readers, so I won't. ;-) But there is a lot to update you on. The most marvelous thing......as of the end of Feb we are now at OVER A YEAR SEIZURE FREE! Amazing!! Something that I thought would never, ever happen! When you child is in the hospital every 2 weeks-a month over night, you never imagine that it will ever end. Now, I don't really feel like they are gone for good. I am still always on watch for them to happen again, but for now we are just happy with every day we are granted that free from them. I am hoping that it continues!

We recently attended the National Tay Sacs and Allied Disease Annual Family Conference in Atlanta, Ga. We had an amazing time and met some truly wonderful people! It was great and busy, busy, busy! We learned a lot about different types of research going on and in the evenings we got to hang out with all the families. The hotel had an gorgeous zen garden that Lily loved!

We also got a chance to stop and see my mom in Sc and visit the beach! It was cold but that didn't stop the kids from playing in the waves! CJ went quite far into the water too. And man was that water cold, cold, cold! But hey when you are from Ohio you take the beach however you can get it! Taz was great in the sand but he wasn't to sure about the waves. The water didn't seem to bother him but the foam on top of the waves, that he didn't like!

We have been so inspired by the NTSAD that we have set a fund raising goal of $20,000 before the next conference! Please keep you eyes on this blog for more information about upcoming events we have planned and ways that you can help!

In other news Lily started taking swimming lessons at our local YMCA. I was really nervous about her in the water. Her attention span is pretty short and while her impulse control has improved some, it's not where I would prefer it to be, but she really enjoys the lessons, so she listens and has been doing really well! I'm glad, since we swim a great deal in the summer it's important that she know how. She has always been able to swim under water without a problem. It's the surfacing and staying up that she has the problem with. Her swimming teacher is great and I have no doubt that she will be swimming like a champ in no time!


On a less pleasing note, Lily is having a lot of learning problems in school. Her short attention span and problems with her short term memory are making it difficult for her to learn. We have an amazing team at school working with her but we are all having trouble figuring out a way to reach her. If anyone has any suggestions, please let me know!!

And the final note before I dash CJ got a puppy! She is a beautiful, yellow lab that we named Argo. She and Taz are best buds! As always thank you for reading and sharing! Please continue to share! I often hear from people who just need someone to talk to that are having similar issues with their children. I love being able to be there for people who need it! Until next time!

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!

Well......

I know I was going the route of the Vlog but I am really sick right now but feel that I need to get this posted so you will have to read instead of staring at my gorgeous mug! Hahahaha!

Ok so on the serious side.......something is up. Two years ago Lily had a battery of evaluations by Akron Children Hospital (OT, PT, and ST) as well as evaluations by the Green school district to make sure she was on target for her age, etc and she was. Well between then and now something has changed. Lily is having problems in almost all areas of school.

Now I won't tell you that I was totally calm and rational about this when I first found out. Actually the whole way home from my meeting with the school I cried my eyes out, the worst case possibility tormenting me in my mind. That this was the Canavan progressing and of course right before we would be out of the woods (as we have been told by some researchers...if she hits 6 with no change she will be fine as far as the Canavan goes, she will be six in Jan). Anyway that weekend I spent the days acting calm and collected, however when I tried to sleep my mind would not rest. Visions of my daughter losing her ability to swallow, speak, walk haunted me that weekend. Nights filled with hysterical sobbing alone in the dark until I was too exhausted to think. It didn't help at all that I was coming down with an illness either which always increases my anxiety.

Monday rolls around and I realize I am doing the very thing I have criticized others of doing. That would be thinking that ANYTHING that goes wrong with Lily is the Canavan when there are other possibilities. So let me break down all the possible causes of this recent situation for ya.

Ok so first is the Canavan. Yes, it could be progressing.....they are going to do A MRI which will tell us if that's what is going on towards the end of the month when she goes in for her EEG (more about that in a moment).

Absence Seizures.....Yeah Lily maybe having seizures when she is awake. Dr. Brown suggested that may be what is going on. I watched some videos on Youtube of absence seizures and have seen Lily do some of the things in the videos. So she will be going in for a 48 hour EEG at the end of the month. This would be the best case right here. Absence seizures are easily controlled, always out grown. Absence seizures effect leaning.

Learning Disabilities-I have some and so does Lily's brother. Actually in my family there are quite a few of us with them so this is a good possibility. Lily is having a ton of testing done on Tuesday that will be able to tell us if she has one or more. However, the report won't be ready for 3-4 weeks, so the end of the month is the magic time when we find out everything!

Damage from past seizures-Because her seizures start in the temporal lobe and travel to the frontal lobe (the frontal lobe controls a TON of things) this is a possibility.

And a very slim chance that this is being cause by meds side effects....its a possibility but a very small one.



So what are we doing? Well as mentioned above she is going in for testing this Tuesday, then towards the end of the month she is having the 48 hour EEG. Also I asked Dr. Brown to do a complete vitamin blood work up on her as well as testing her for heavy metals which we will do while she is in for her EEG. On a happier note....Lily and her brother have started taking Martial Arts. They both love it! Here is a pic of Lily on her first day!

As always, thank you for reading and sharing!!! Hollie

First Vlog!