So this is so over due and I apologies. The busyness of the holiday season, along with an 11 yr old who likes to lord over my computer has kept me from updating Lily's blog. :-)

So first let's start with November before we tackle December and yes, unfortunately there was a seizure in each month. But on the bright side they are starting to stretch out again, in between that is.

So November 11, Lily had a seizure. This one took me totally by surprise because her Dr had just upped her Lamictal again so I figured we would be good for a bit. Guess Epilepsy showed me once again nothing is set in stone when dealing with it. I panicked. I often wonder when I am going to stop panicking with each seizure. After all it has (now) been over two years. Don't get me wrong I don't expect to become indifferent towards them or anything but a little bit of calm would sure help. There has only been a handful of seizures I have been calm through and I am always so very proud of myself. Anyway, back to that seizure. Taz did not have the chance to alert because I had not moved him to the bed yet and as usual Lil's pulse-ox went off. This seizure was like many of her others, however it lasted longer than usual after she received the Diastat, which of course did nothing for my panic. She did come out of it as the EMT's arrived. Over night stay in the hospital and by 9 am the next morning she was back to her normal happy energetic self.

So I have been really struggling with the question of the Lamictal. 3 times increase and within 2 days she has a seizure. However she had a large increase in Oct that did not lead to a seizure. What to do, what to do? Well it was decided to keep going up on the Lamictal for now but to go up slower.

So now lets jump ahead to Dec 20. Next seizure but this one was a lot different. She had a very busy day and was wiped out. We laid together and I got her to sleep. I had justt put on her pulse-ox on and hadn't had a chance to get Taz over to us (Lily does not like him to lay with her so we have to wait till she is asleep to move him to her) when all off a sudden she (what seems like) wakes up. She just starts talking away and is very animated. I was wrestling with my denial self at this point because I wanted to believe that it was not a seizure but I knew that as tired as she was she should have not woke up 10 minutes after she fell asleep looking like she had not even been asleep (and trust me she was out!).

So I call Tracy over and get Lily to lay back down. We keep asking her if she is ok, what her name is, who we are, etc, etc. Then her eyes went glassy and she looked really very confused. That's when I decided to grab the phone and the Diastat. Tracy called 911 while I prepaid the Diastat. At this point we weren't 100 % certain she was having a seizure (Ok I should say that our denial was muttering in our ears) so I decided that i would insert the Diastat. If she didn;t react I would give it to her. If she reacted I would not give it to her. For those who aren't familiar with Diastat, it is an emergency med given to stop a seizure that won't stop and it is given rectally. She did not react. So it was glaringly obvious that it was a seizure.

So if you look at it from a stand point of the time she no longer answered us and her body went stiff till she came out of it, the seizure was maybe a minute. However I think the seizure started the moment she opened her eyes. From what I understand, people with complex partial seizures (which is what Lily has) sometimes they can still respond. So in that case it was between 10-12 minutes. Another trip to the ER and another over night stay at Children's. Released by early afternoon, but it took her a bit longer in the morning to bounce back. Sometimes she is ready to hit the ground running, most of the time she is. But sometimes not so much. I can never tell based on her seizure how she is going to be. Sometimes she will have a terrible and I think that we are gonna be in the hospital for days and then next morning she is fine. Oh Epilepsy you are a fickle beast!

Since the seizure appeared so much milder than any of the others she has had we are going to keep cruising on the Lamictal. We will see how things pan out.

Oh and Monday night (Lil's seizure was on Tuesday night) Taz slept on Lily's legs with his faced pressed on to them from nose to forehead. He NEVER sleeps like that. He always sleep with his back against her facing away from her. And he has not slept that way with her since, so I think our Mr. Taz was picking up that something was coming. Good boy!!

Oh and one other thing, after the EMT's took Lily out, our other dog Isis walked over to the spot where Lily had had her seizure and proceeded to sniff, intensely from where her head had been down to where her toes had been and continued to sniff for a good three or four minutes. Is she picking things up from Taz? That would be cool!

As alway, thank you for reading! Lily um, decided to cut her hair awhile back. Here in the next week I will try and get some pic up of her new do!

Help Help!

So I am calling on you again, my faithful friends because us Canavan families coild really use your help! We are trying to get The Ellen Show to spot light Canavan Disease. There are so many people out there that don't know about Canavan. The more people that know, the more help that will be available to cure this terrible disease!
So I am asking you today to please send an e-mail to The Ellen Show (http://ellen.warnerbros.com/show/respond/?PlugID=10) and ask them to spot light Canavan disease. If you feel that you don't know enough about this disease to do that, then just include in your e-mail a link to http://jacobscure.org/canavan-disease.php which explains what Canavan disease is.

All we want is a chance for our children to be healthy. You could have a hand in helping us achieve that dream. Please write and please share this blog post anywhere and everywhere you can,

Thank you for reading and thank you for writing and caring!!

Update with an update

Ok this is going to be pretty short cuz I am not feeling so hot and need to chill some.

So long story short another Neuro looked at Lily's EEG's as well as ordering another one yesterday. In my next post I will tell you more about him but like I said this one is going to be short.

Anyway, he said that Lily is having small seizures from the time she goes to sleep until she wakes up. So he wants her to start on a liquid Valium at bedtime. They are keeping her tonight just to make sure that she does not have any kind of reaction to it.

She is doing good, back to little miss everything, going nuts in this little room. Hopefully I will feel better in the morning and will be able to write a bigger update.

Thanks for reading!

So yet again

So Lily is back in the hospital. She may have had some seizures yesterday. I know those two sentences sound weird so let me start at the beginning.

I picked Lily up from school at 2:30 like I always do. I saw one of her teachers in the hall that told me that when she got Lily up from her nap she cried and didn't want to get up. This is pretty weird for Lily. Also that she didn't want snack, that she just wanted to play with her friends. Once again, odd. So I noticed as I was putting her in the car that she was rather pale looking. On the ride home I had to beg answers out of her for our typical ride home questions (how was school, what did you have for lunch, etc) if I didn't insist she just wouldn't answer me.

She was also saying off the wall things like she asked me to take her ponytail out. She didn't have a ponytail in. Things along that nature. And those of you who know Lily, you can vouch that she speaks very, very well. Yesterday she was not pronouncing her words well. She also had a bite mark on her wrist. She told me that she did it. She has never bit herself before. Like I said, just some really off the wall weird stuff.

Tracy tried in vain to reach the nurse at Dr. Victorio's office. He left a voicemail but we never got a return call (yeah, nice right? And yes Tracy did say on the vm what was going on. Guess they weren't concerned).

She finally did gain some color back and was acting better, not normal but better. So we just decided to keep an eye on her and see how the night went.

To start with her night was normal. She slept well, didn't move much and the pulse-ox was pretty stable. But then she started getting restless in her, pulse shot to 130 as oxygen dropped into the 70's but then she stabilized again quickly. We decided once again to wait it out but agreed if her oxygen dropped again we would call the Nuero on call. About ah hour later her oxygen dropped to 67 as well as doing some repetitive leg movements at the same time. So Tracy called and talked to him and he said to bring her in. We opted to have the Ambulance transport her in case she went into a full status. Now, Tracy went and stayed with CJ. So all I can really tell you is that Taz was once again the perfect gentlemen in the ambulance and at the hospital, they decided to admit Lily, she may have been having some absence seizures in the ambulance as Taz would get right up on her and sniff her mouth then she would stare off into space.

Anyway on to today. Today color is back, speech is back and Lily is acting normal. The Neuro on call is having an EEG done on her as we speak to see if there are some meds that we be better suited to put her on (yay! I am liking this guy!). I brought Taz home for a bit so he could eat, do doggy business, get a break and play with Isis till CJ gets home then we will go back up.

Also Taz would not leave Lily's side yesterday at all. Even in bed he often sleeps facing away from her but he stayed very close to her making sure that he had body contact. In the pic below you will see his paws are kind of bents over her leg. When I tried to move her leg off of him because I thought he was uncomfortable he gripped her leg with his paws so I couldn't move it. Best....dog....EVER!

Thank you for reading!

So now what??

Well Saturday night Lily had another seizures, just two and half weeks after her last. This one was different than the others. Her Lamictal was upped on Wednesday, so we are thinking that instead of controlling the seizures it is actually making them worse which can happen with meds. I was very hopeful with the Lamictal, but it looks like the honeymoon period is over. Lily was admitted that night due to a drop in her oxygen. She is home now and doing well. Though I did keep her home from school today. I really feel that I need to keep a close eye on her until we figure out what's going on with the meds. Waiting to her back from her Neuro now. I think now is the time to take her up to Cleveland Clinic for a second opinion just to see if they have any other suggestions.

I must admit that I am pretty down right now. I know there are other meds that we can and will try, but then that brings along with it the worry of side effects, a possible increase in seizures, bad reactions to meds, etc, etc. I wish the FDA would hurry up and approve the Trigeminal Nerve Stimulator! Though Lily won't qualify for it until she has been on 4 meds with no relief. Looks like we may be heading that way.

Now the million dollar question....did Taz alert? Well, I had been telling people no, until I thought back to that night. Lily woke up right before the seizure. Tracy was on one side of her and I was on the other. Taz was at her feet. Tracy and I were both so focused on Lily, that I can't really tell you what Taz was doing. Once I got up to call 911 he moved up on her. At one point Tracy was having a hard time keep Lily on her side. She kept trying to turn on her back (sooooo not a good thing when she is throwing up during the seizure). Taz actually came up and pinned her on her side so she couldn't flip over.

I took him out before we left for the hospital. When we came back in the house, the EMT's had taken Lily out to the ambulance. Taz was going nuts looking for her. He rushed down the driveway and right into the ambulance! Normally when we walk out the front door we go straight to my car, so I was quite surprised when he seemed to know exactly where Lily was. Great nose on that dog! So Taz went for his first ride in the ambulance. He did excellent! The EMT's were very impressed on how well he behaved. So I got to be proud SD mama. lol

WHen we got to the hospital an EMT got him out of the back and handed my his leash. They got Lily out and down the hall we went. We were behind the stretcher with Lily on it and Taz could not see her. He was very anxious until I maneuvered him around so he could see her. Then he settled right down.

Once we got settled in a room we were bummed rushed by a few of the ER staff wanting to know if they could pet Taz and give him some doggy biscuits. I said that was fine and they fawned all over him, which of course he loved! But he maintained his gentlemanly SD status, just sitting and basking in all the attention. We saw several staff members that night and all of them commented on how well behaved he was. Taz did his normal Taz thing, curled up and went so sleep.

Eventually Lily woke up and wanted Taz up on her bed. The bed was pretty high up and Taz was afraid to jump. So I lifted him up (yes I am the man! lol) on the bed. The bed was pretty narrow and he was afraid that he was going to fall. So he little by little inched his way up to Lily.

Once she got admitted and we got in a room I put him up on that bed (yes lifting him again but this bed was not as narrow, so he was able to move around a bit). He settled down on her bed and (shock!) went to sleep. Lily, however would not go to sleep. I put on the TV for her and sat down on the couch. The Neuro on call woke me up an hour and a half later. I am so glad that Taz is so well behaved! He was right where I left him on the bed with Lily. While I was sleeping the nurse had come in and gave Lily her meds and checked her vitals. Taz stayed put! Good boy!

Taz did wonderful for his first seizure emergency with Lily. Oh and there has been the question of did he prealert. Yes, he did we however we failed to recognize it. See he was acting like a normal pet dog all day Saturday (except when we were at the stores) and that night. He doesn't normally do that. He always listens well. I just dismissed it as him settling in with us. Now I see that he was picking up on something that I wouldn't acknowledge (yes I had signs that day from Lily that one was coming. I dismissed those, not wanting to believe). Anyway, since the seizure has been and gone he is back to his normal mannerly self. I need to start paying more attention to what he is doing and to my own instinct. It's just hard! Every time her meds change or are upped I hope and pray that they will control her seizures. Thus far no good.

Please keep my little girl in your prayers. As these seizures get closer together I worry about the damage that may happen to her. There is only one change I want for my daughter and that is a seizure free life.

Thank you for reading.

Oh such a ball dropper!

Sooooooooooo very sorry I dropped the ball and stopped posting during training! Training was busier than I thought it would be (even though I was warned ahead of time that it was going to be busy!) I just thought I would be able to hang but found out quickly that I wasn't. Anyway so this post is going to be mostly high lights!

So first there was the day that we got Taz together with two of his siblings, Tye (who was unable to become a service dog do to some problems with his hips) and Tashi who is in next months class. They were so cute together!

One of the main reasons I did not update is because after class we were taking Taz out in the public as much as possible to practice. We ended up taking him to Red Robin, a bowling alley (on LEAGUE night no less!) the swimming pool, different stores, etc, etc. He did really good everywhere we went and after just a few minutes getting used to everything he would go to sleep (as you can see from the pic here at the bowling alley!)

Since we were on the 4th floor of the hotel Taz and I spent a great deal of time in the elevator. His first ride in the elevator he wasn't too keen on but after that he was right as rain. Here is a pic I took of him on one of our elevator rides.......he is sitting without being asked so he wants a treat (and yes he got one!).

Taz is a still a baby at 16 months old and loved our bed at the hotel (as did we!). Here is a pic of him during one of his favorite things to do!




Sorry to say that I don't have any pics of him when we were at the mall. I was concentrating on our practicing as that is where we had to take our public access test so I wanted to make sure that we did the mall well. Especially after I learned my lesson! Jeremy had just talked to us that day about learning what is normal and what is not with our SD's. Well we were in the mall and Taz was acting strangely, not healing well, etc. Very odd behavior for him. Well let's just say that I learned first hand the importance of paying attention to unusual behavior from your SD! Taz had a rather messy accident in the mall! I was assisted by a very, very nice cleaning staff lady cleaning it up. How embarrassing! That WILL NOT happen again!

Anyway we are home now and everyone is bonding well with Taz except the cats! The cats are not happy with me right now let me tell you. However we are very blessed with Isis, who has been our loving pet dog for the last 7 years. She really has helped Taz transition well and fast. They are good buddies and play all the time!

And once we got home the real bonding between Lily and Taz has started! Yay! I was a little worried at training because Lily seemed to have little interest with Taz, but at 4 Paws there is so much for kids to do and there were so many kids for her to play with she was just busy, busy, busy! Now she loves to have Taz cuddle with her in bed and it has made her fall asleep easier! Yay!

Would you quit with the pics already lady?!? I am trying to sleep here!!


So far Taz has pre-alerted for one small seizure Lily 2 hours before she had it and then woke Tracy (my husband and Lily's dad) while Lily was having it (he was trying to push in between Lily and Tracy). Taz also does behavior disruption and he does this totally unprompted by me. Whenever CJ or Lily cries he goes over to them and touches them with his nose, tries to put his head on their laps, etc, etc. It's so very cute and it turns those frowns into smiles like nothing flat!

All in all Taz has been totally worth the work and the wait. I wish I knew the name of the ER Dr at Children's that first told me about about seizure alert dogs! I would love to buy her some flowers and take her to lunch! I will be forever indebted to her for telling me about these amazing animals!

As always, thank you for reading! Please keep your eyes here if you are in NE Ohio and would like to meet Taz and Lily. We are planning a meet and Greet with Taz and Lily sometime in October. I will post the details here as soon as we get them figured out!

Training Day 4

So betcha thought I wasn't updating tonight huh....I am but it's a later nighter again tonight. Sorry about that! We got together with some friends tonight. But anyway here we are.

So today was more obedience, learned about working the dogs in public, watched the mobility dogs do there stuff (they are awesome!), got our harnesses and headed for the mall for our first big public journey.

The mall went well. Taz did very good. He did have some trouble on the stairs...he wasn't too keen on going up them...but we worked on that and he adjusted pretty well, pretty fast. Just going to have to be something we practice a lot. So he was pretty laid back at the mall, I even took him into a Halloween store and he took it all in stride. The only thing that really bothered him (outside the stairs) was there was a kiddie train that was going around the mall. He was nervous about that but no too bad. That is however until it was followed by a housekeeping cart and then someone walked behind us with a rolling rack cart. All that activity spooked him, but I was able to get him back into his sit pretty quickly.

After class he and I came home and took a nap! We were both tired from all the walking around today! lol

After that we went to dinner with some friends. He did "under" at the table well and staying under the table for 2 hours. He did get up twice. He had been asleep and I think when we woke up he was confused on where he was at. He went to "down" no problem. He did amazing in the restaurant!! It was a great day!

No pics tonight. I have some but need to get to bed so I will add them to tomorrows blog. As always, thank you for reading!!

Training day 3

Welcome to training day three!

It seems I have a few things to apologize for before I start this post. First, I forgot the camera today, so no pictures today! :-( I promise I will remember it for sure tomorrow!

Second I am sorry I am doing the blog so late tonight. I have been really antsy all day and finally figured out what is wrong. Lily's last seizure was a week ago today, so I am just nervous (and I am sure that the two cups of ice tea I knocked back not too long ago helped very much since I am sensitive to caffeine!).

So anyway, today was awesome just like the other days thusfar. I will warn you however if you are in an upcoming class, you will be tired after class! I promise! I was going to skip blogging tonight but then I remembered how much I loved reading others updates when I was fund raising and/or waiting for our class, so here I am. But please bare with me. This is probably going to be riddled with typos and maybe not make much sense at times!

Ok so anyway, back to the point! Today's class was more obedience, we all learned about and received our mutt mats, we learned the commands under and bark, learned some tricks (shake, gimmie 5 and high 5), and we learned a great deal on seizure work. Tomorrow will be our first public voyage to the mall in the afternoon. I am looking forward to it with nervous anticipation! Taz will do well...it's me I am worried about! lol

Taz did real well today, between his mega naps! lol We went early so we could exercise him, then at lunch we at out in the play area so we could exercise him again. I need to keep in mind that he is a low key dog and probably doesn't need quite that much exercise. Our dog Isis is a very high energy dog and needs lots! I think tomorrow we will just exercise him in the morning and he can just chill with us at lunch. Though he does really, really likes chasing the ball!

I crated him last night at bed time but he is going to stay out tonight. He really likes his sleep and seems to love the bed so I think it should be a good night for him!

Well, I am spent and I still have to go grab our laundry (I HATE laundry!). As always, thank you for reading!!

Day 2

Welcome to training day 2.

Woke up this morning with no voice at all! Thank goodness after breakfast it did return. We stopped at a pharmacy and the pharmacist told me that it was most likely allergies, so I got some allergy stuff to try to dry me up.

We arrived at 9:15 to work Taz a bit and spend some time bonding him and Lily. However he was getting a bath, so we just hung out with the families until it was time for class to start.

Today was learning more about bonding, working on heal, learned and used the Gentle Leader (which is really cool! But Taz pouted so bad when he got his put on! lol) and about how to handle the car ride and the time in a strange new place for the dog.

Taz did really well again today! He handled the car ride like a boss and has acclimated to the hotel room so well!

We decided to take him for a walk today since we did not stick around after class to exercise him. We just walked a few blocks, but it was the whole family (me, my husband, CJ and Lily). I allowed him to be "free" on the walk away from the hotel but healed him on the walk back. He did wonderful! And at one point he stopped quick and spun around. I was about to correct him when I realized that he stopped and whirled around because Lily had fallen! He got a big GOOD BOY and a treat for that!

Even though Lily is not to sure about him yet, he is great with Lily and follows her around A LOT! Yay!

So Lily got up on the bed and Taz followed her up. She laid the Ipad on him a couple times and he just laid there and slept. We are more than 100% happy with him!!

And one more parting shot for the night! I know I promised more pics but it didn't happen! I'm sorry! I am so into the training that I forget to snap any pics! I hope these will suffice! As always.....thank you for reading!!

First day of training

Welcome to the first day of training! It was an amazing time and I am so looking forward to tomorrow!

So we got their about 9 (class starts at 10) so we could check everything out, see the dogs, etc, etc). 4 Paws is probably one of the kid friendliest places that I have ever been! Tons of stuff for the kids to do, inside and out!

So we got to meet everyone (and I am happy to report that EVERYONE in our class is awesome! Yay!) and got to visit with Taz a little while he was in his kennel before class.

Class began and Jeremy introduced himself, the other trainers and talked about 4 Paws, the different programs they use that train the dogs, etc, etc. It wasn't too long till it was time to bring out the dogs! I think Lily was maybe the 3rd or 4th to get her dog brought to her but it felt like forever. Though it was really cool to see all the dogs meet their new partners! So her and Taz hit it off right away!

After the meet and greet Jeremy and Jessup (I think that was what her name was! Gosh, I hope there is not a test on the trainers names!) showed how the dogs will alert during a seizure. It was really pretty amazing how quick the dogs will respond! Then we broke for lunch.

After lunch we did some obedience training (for us!). Taz was the perfect gentlemen and only tested me a few times to see if I meant business. We are quite pleased with him! He is really, really laid back and very sweet!

Tonight he is staying at the training center but tomorrow he comes back to the hotel with us. I can't wait!!

And a final parting shot for you! I promise I will try to get more pictures tomorrow!

Oh and now for the bad news...I am losing my voice....like really going away! I REALLY REALLY need my voice for this training! The dogs listen to hands signals as well as verbal commands, but they need to acclimate to our voices.....this could be a problem! Whispering now, drinking hot tea and hoping that my voice will be right as rain in the morning!

As always thank you for reading!!

Our trip down

So I will be updating about our training every day and I thought to get myself in the habit I was blog about our trip down.

So the drive was for the most part uneventful, except GPS told us to go one way and once we did we heard that horrible word "recalculating!". We went 20 minutes out of the way due to that error. Outside of that the drive was good and not too long at all.

Our hotel room is gorgeous! It is so much bigger than any room I have stayed in before. It has a full kitchen in it, which is great! Since we are going to be here so long we will be eating some in the room. But our hotel does provide breakfast and dinner Monday-Thursday so that's great!

Today is the day we get to meet Taz I am so excited I couldn't stay asleep. I woke up at 3:33, 4:00 and finally when I woke up at 5:00 am I said the heck with it and got up. Breakfast starts at 6:00 so I think I might go down and have a meal on my own......not sure if I can remember how to chew and swallow without someone saying "Mom! Mom!" and poking me! lol

As always thanks for reading and keep your eyes peeled for the training updates which should happen no later than tonight!!

Introducing.....Lily's service dog!

I am very happy to share this picture with you all! This is Taz, Lily's service dog. We go to do our training next week then we get to bring him home! He was born June, 27, 2010 and is the first of his litter to graduate. He is so beautiful!!

On the flip side

Well Lily is better now (yay) and we got out of it with only one ER trip! And that was NOT do to a seizure. The first night she was ill she could not stay asleep. This really concerned us because we have figured out that lack of sleep or disturbed sleep is a trigger for Lily's seizures. So we took her in to see if there was anything they could do to help us out. I truly love Akron Children's. They never make us feel stupid, etc for our paranoia. They gave Lily some Benydril (sp?) with the promise that she would sleep through the night and she did.

Now that is not to say the other next were a walk in the park. Many times she had some questionable activity. Possibly seizures related and a possible stridor at one point. The possible seizure activity was over before I could blink so we didn't take her in simply because we weren't sure if it was or wasn't. And had they been seizures, they were so short and she was fine that we wouldn't have called the EMT's for them anyway.

It will be one more month till her Lamictal level will be where they want it to for control. Until then she does carry the possibility of having more (truth be told, Lily will always carry that possibility the rest of her life.).

Anyway, on to a happier topic.............20 days till we get her service dog! We are so excited and cannot wait. Within the next 10 or so days we should have her match and I will of course post here with the picture and info on the dog.

Ok, sorry this is so short. While everyone else in the house is better, I am NOW getting it and feeling poorly.

As always, thank you for reading!

Couldn't escape it

While I know every year we are going to get sick, after all it's just a part of life I am always hopeful that Lily will not. And here we are, still in August. Not even in the fall yet and she is ill. Stuffed nose, sore throat, croup, low grade fever. But despite all that she is pretty much her normal self when awake. "When awake" is normally the time I don't have to worry about things with her.

First off, let me warm you this is probably going to be wrought through with typos. Please forgive me. I am one tired mama.

Anyway for those of you who aren't aware illness and fever both can lower the threshold on seizures. Lily has only ever had one seizure caused by a fever but that was the last fever she had back in May, so we are a bit nervous here. Her fever is just a lower grade fever but it still makes us nervous, that coupled with the fact that she won't have a the level of Lamictal they need in her system for full control for another month and that lack of sleep is another trigger (stuffy nose does NOT make for a restful sleep) walking on egg shells is how we are rolling right now.

Now don't get me wrong if she is going to get sick I would rather it be here while we are at home and not while we are at training for her service dog (26 days! Can't wait!) but I was just hoping we could avoid the whole illness thing until after we got back from getting her dog.

Anyway just a small whiney update! As always thank you for reading!

Lily and Lamictal

So far so good. She has only been on it two and 1/2 days but I can see an improvement with her sleep. I wish I could see her brain waves now! But until they come out with take home EEG machines that are easy to attach and use, that ain't gonna happen.

Each day I am becoming more optimistic about the Lamictal. Before she would often wake up or come close to waking up in the middle of the night. I would assume that this would lead to a non-restful sleep, hence after so many days triggering seizures. Oh my, did we jut finally figure out a trigger for her? Hmmm.....anyway that is my theory. So anyway since starting the Lamictal she is not opening her eyes in her sleep much at all. Maybe once or twice the entire night (I know cause I am watching her, yes the entire night!) and before it was a good 20-30 times a night. Also she has not been sleeping with her eyelids cracked! Yay! That was enough to give my husband and myself serious heart palpitations on more than one occasion. So that has stopped. And and and(!) she has started talking a little in her sleep. Last night she yelled puppies! lol So since this is new I just have to wonder if her brain was misfiring so much that she was not able to dream. More of my non-medical theories! lol

So whatever you do-pray, light a candle, dance around a fire, send vibes, whatever, please do it for this med to work for her!

As always thank you for reading!

As Paul Harvey Would Say...."And now the rest of the story!"

First I would like to say thank you to all those who contacted me that understand where I am coming from. And please by all means, don't stop! It's very nice to have someone say, I know how you feel and it sucks! So even if you child doesn't have Epilepsy, if they just have something else going on and you have the same feelings I listed in the post down below, please e-mail me. We can swap "war stories" and offer each other support!

Next order of business.....my outlook is much brighter today. I wouldn't go so far as to say I am back to 100% optimism but I am getting there.

I want to go into Lily's EEG a little more. I believe I mentioned in the last post that she was misfiring constantly in her sleep. This unfortunately has left another one of our questions unanswered. Lily can become very active in her sleep. I had asked her Neuro how we could tell whether it was just normal REM or if it was seizure-like activity. She said if we end up doing an EEG we should be able to tell. Well, they cannot tell. Because her brain is misfiring so often they can't "see" the brain REM waves the way they need to to determine whether it is REM or not. Sucks, but doesn't change much. So we still get to jump every time she moves. But honestly even if they could have been able to tell, it still wouldn't matter. I am learning rapidly that brain waves can change at any time for reasons unknown. So had they be able to view the REM it wouldn't mean that she was always having REM. I have decided to just take care of what I can see outside her body and let the Neuro's deal with what is going on on the inside.

Lily was taken care of in the hospital by Dr. Holler. You may remember from my previous posts that we LOVE Dr Holler and as usual she proved that our love was not ill-placed. She was very good at letting us know what was going on, be up front and honest with us while still being reassuring and comforting. I wish that some medical schools would take a video of her in action and tell their students that THIS is what you strive for as a Dr. Also I was outside sitting on the curb, messing around on my phone as Dr. Holler and her nurse were coming out of the hospital and crossing the street to go to the medical building. I didn't see them but they did see me. Now I am sitting on this curb, crossed-leg, with my head bent and I assuming I looked every ounce a woman in despair (which I wasn't. I was still ok at that point) but my head was bent because my phone was sitting in my lap. Any way, I hear a compassion filled voice say "hey, are you ok?" Yeah it was Dr. Holler making sure I was all right. I said yes that I was and quickly realized why she had stopped. I picked my phone up off my lap and waved it at her. She gave me a big smile, nodded and continued on her way. I am still very much touched by the gesture. There are not many Dr's out there that would take even a few minutes out of their day to do that. She is a great Dr but also an amazing person.

Another surprise that I had that day was Lily's Neuro showing up in Lily's room. She was plain clothed, with no bag of tricks (tools or doing a neuro eval), ect, ect. It was weird seeing her like that because I am so used to her having a lab coat on. She wanted to come in and see if we were all right (not Lily, she knew Lily was ok) and let us know about what was going on. I was really surprised to say the least.

Ok moving on.....So Tracy and I (despite Dr. Holler telling us NOT to do this, that is wasn't necessary as we HAVE woke up when she has been seizing and she has no long term damage, etc, etc) are sleeping in shifts. I REALLY cannot take this waking up to her having a seizure anymore. It's just the not knowing how long she has been seizing that I can't take. So I will sleep after Tracy gets home from work until midnight or there abouts, then I get up and he sleeps till 6-7 am. Then I take about an hour or so nap till he leaves for work. Yeah I do realize that it sounds crazy but here's the deal. Before I was getting maybe 3-4 broken hours of sleep a night. Same with Tracy. Now we are both getting solid undisturbed sleep and sleeping longer than we had before. It was amazing for me to lay down this past even and actually just be out, not waking up at every little sound. I have REALLY missed restful sleep! So I am one happy camper. The only thing that sucks is Tracy and I are not going to get a whole lot of time to spend together, but hopefully we can make it for that on the weekend.

Lily started Lamictal today. She has only had one dose and tonight has been sleeping peacefully with not much activity in her sleep. Hopefully this is a sign that we are on the right track!

And a couple things about the Blog I would like to let you know. First, at the top you will see a tab labeled "About Lily". If you don't know her back story check it out. Second, I am going to be posting another page like that one, but this one will have resources on it for special needs families, so make sure you bookmark the blog and come back in about a week or so to check that out. And finally when we hit 6000 hits on Lily's blog (we are almost there) I am going to host a giveaway, make sue to come back for details on that!

As always thank you for reading! And now you know the rest of the story! Good day!

The Basic instinct

The basic instinct of most parents are to protect their children. When something happens that is out of your control, it rips at your soul. It tears at the very fabric of your being, making you question everything.

If you haven't guessed by now this isn't going to be one of my upbeat posts. And quite honestly that makes me mad. I hate self pity when I am doing it to myself. But I have to get this out or I feel like I will burn from the inside out.

SO Lily's EEG results were not what I was hoping for. But none of these medical tests have been so I guess I should have seen it coming, but I am most of the time the eternal optimistic.

So the EEG revealed that her brain is misfiring almost constantly in her sleep. Which of course explains why she has her seizures in her sleep and why they don't stop without Diastat or something stronger. I was expecting misfiring when she was going to sleep and where she was waking up but not through almost all her sleep. That has thrown me for a loop.

Also back when she had her EEG in Feb '10 the misfiring was only coming fro one area of the brain. Now it is coming from all over. Which means that a grand mal is a major possibility. They are not necessarily any more dangerous than what she has already had but they are damn sure more scary to see. Keep your fingers crossed that it doesn't happen please!!

Also she is still having misfiring while she is awake. Now it is no where near what she is having during the night, but it is still happening which means there is a possibility for a awake seizure. This crushed me because I was hoping that the Keppra was at least taking full care of those, but that is not the case.

So they are going to put her on Lamictal as well as the Keppra. They are pretty optimistic that it will take care of things. If this doesn't work, there are still 17 other meds that we can try as well as VNS and the Keto diet but the last two are just of nothing else works.

The whole meds thing scares me. I worry about long term effects and side effects.

And above all else I am just plain scared. Scared that she will suffer brain damage or worse.

AND I HATE NO BEING ABLE TO PROTECT MY CHILD.

So now comes my quest and if you are reading this, you can help me out. I am looking for a family that has a child that has seizures like Lily's. The families I know with children with Epilepsy, their children's seizures are different. So please, please, please repost this blog and maybe someone, somewhere will read it and say hey that's my kid almost to a T. And if you are that person, contact me please at hollie@lilysfight.org.

I will post more later this week.I have more to say but right now I am just spent and my head is killing me!

Oh and yes Lily is ok. She woke up Saturday at 4pm and has been back to her normal self ever since. Yay! Here is a pic I will leave you with. I had my makeup with me so I let her put some on in her hospital bed.

As always thank you so much for reading!

And here we go again!

So I am writing this blog post from a room at Akron Children's Hospital. Lily had another seizure this morning. This one, like the last two were different. We were blessed, however because the amazing and wonderful Dr. Holler was the Neuro on call today. Dr. Holler wants Lily to stay tonight and possibly tomorrow night because they are not able to do a video EEG on Lily till Monday. This is the EEG I wanted a month ago that Lily's old Neuro (yeah we are switching to Holler) wanted to "wait and see" to do. Dr. Holler who saw Lily after her seizure in June had sounded like had she been Lily's Neuro she would have done it. Now Dr. Holler is ordering it. To heck with it all. So glad! LOVE HER!

Anyway, we know Lily seized for at least an hour, if not longer. She had cluster seizures instead of a status and even the after-math of the seizure was different. She slept until about 4:00 pm and then woke up back to her normal self. Yay! I can breath a sigh of relief. When she has such long seizures like that I always worry about long term damage. So far, so good.

She is going to miss her riding lesson at Pegasus on Monday. She is NOT going to be happy about that, but it can't be helped. Hopefully later this week we can go out and she can visit Miss Mollie.

I am so happy she is back to normal. She just looked at me and said "Mom, I had a seizure this morning, but I am ok this afternoon so we are going home tonight!" Funny, fumy girl.

I hope that tomorrow when Dr. Holler see's her like this, that maybe she will reconsider keeping us tomorrow night and just let us come back on Monday for the EGG. Keep your fingers crossed for me please!

As always, thank you for reading!!

Pray

I know I don't have a huge amount of followers but I know that I have loyal group. I must ask you a favor.

In Texas there is a beautiful little baby with Canavan that needs your prayers. I will not go into what is happening as that is not my place but I just wanted to ask my visitors to please pray for a miracle for baby Jase. Pray, light a candle, send vibes, whatever you do please do it for this sweet little lamb.

You can read about Jase at https://www.facebook.com/#!/JasesFight

Also there is a Prayer Event set up on Facebook for Jase. Anyone can attend. https://www.facebook.com/?sk=events&ap=1#!/event.php?eid=149084865168640

Thank you.

Just getting caught up and a thank you!

So first off I want to say thank you to everyone who came to Lily's Poker Run on Saturday! It was a gorgeous day and we had a fabulous group of folks attend. We appreciate your love and support more than you will ever know! I also want to thank the wonderful folks who organized the event. You guys do a wonderful job!!!

Lily has recently started horse back riding therapy at Pegasus. I had read that this can help with small motor skills and honestly after riding in my past I really had a hard time seeing how that could help. I can totally understand how it would help with large motor skills but not small. Well, I guess it doesn't matter whether I understand or not because Lily has begin writing some letters! I have worked with her before to try to get her to write some to no avail. However two weeks after starting her therapy at Pegasus, she was writing L's unprompted and is now working on writing her name. Very cool!! She is also going to be in a horse show at Pegasus in August. Can't wait!!

Sorry for the lack of quality with the pic. It was taken through some glass and with my phone so it's about the best I can do right now! I will post some better ones after the show.

The heat here has been unbelievable! Makes it hard for us to do any kind of burn some energy off activities! We have been playing red light, green light in the living room and a few other games. We try to go out in the evening to play as we will but then we have to deal with the mosquitoes! Can't win right now, I tell ya!

54 days till we go to get Lily's service dog and for training. I cannot wait! If you look down a few posts you will see there is a counter here on the page. When it drops off the page I will post it up again so everyone can count down with us.

As always thank you so much for reading!!

Long overdue update!

Sorry that I have been slacking on Lily's blog again. Things have been busy and a bit crazy here or there.

So on July 3rd Lily had yet another seizure. Yup 3 in 2 months. Totally not how she usually rolls but Epilepsy is unpredictable. The countdown is on till we get her dog and we REALLY can't wait now!

The seizure on the 3rd was at 7 pm, at the tail end of a much needed nap. She has never, ever had a seizure during a nap before, so things are really changing. And the seizure presented as an absence seizure (staring, no movement at all) so our nerves are very frazzled right now. If she were to have one of those while we were all asleep and it turned into a Status seizure......well it would be all bad, like really bad! So mama here has been averaging 3-4 hours of sleep a night. Tracy let's me roll with it (those of you who know me know that as I am soooooo stubborn, he really has little choice) but when it all catches up with me and my body and mind can't take it anymore he makes me get a good nights rest and he takes over the seizure watch for that night.

Lily's Keppra has been upped again and she is almost at a max dose. Once she hits that they will have to try her on something else. This scares the crap out of me because they have no idea how she is going to react to the meds until she is on them. Could make the seizures stop or it could do nothing at all or it could make the seizures more frequent and worse. So when that time comes I am going to be seriously holding my breath.

Also with each increase of Keppra she has been getting harder and harder to control. I recently read that vitamin b6 can relieve that side effect when taking Keppra, so Lily's Neuro put her on b6. HUGE difference!! So if you have a child on Keppra and they are having some behavioral issues, look into the b6! Also I have read that it may decrease seizure activity, so we are all about it.

Since the 3rd Lily has been doing fine. Well she was peeing the bed at night for about a week afterward but she has since stopped. That happens sometimes with her after a seizure. We are never sure if it's due to the seizure and her brain trying to reset itself or if its due to the increase of Keppra. Either way it always makes me nervous since she has been night potty trained for well over a year.

As always thank you for reading! I will try to keep up with the blog better!

Check this out!!

Hey, look at this!!

My Confession

So I want to start off by saying this is going to be an all out post about my feelings, etc. It's probably not going to be pleasant but I can't say for sure where this is going to go. I know that I have many thoughts in my head and I need to let them out. So I am just going to type and we will see where we end up.

So first I am going to go back to Jan of 2010 after Lily had her second seizure. It was then emerging that her December seizure was not just a one time deal. These two seizures both happened at night. Well I have always been a heavy sleeper, so this obviously terrified me. So the three of us began sleeping in the living room. On the floor. I felt that this way I would be far to uncomfortable to sleep to deeply. It didn't work. When she had her seizure in April, Tracy was the one who woke up. This is a guilt that eats me up, never mind that she was on his pillow with her face pressed right up against his. Never mind the fact that as soon as he said my name I was up and running. he has told me numerous times that he thinks I was waking up when he called my name. Some things as parents we cannot forgive ourselves from doing. That is mine.

So now we will jump back to the present. After Lily's last seizure with the time change, we are once again in the living room. Not on the floor this time. Tracy and Lily are sleeping on our sofa bed and I am sleeping in the chair next to them. Once again my theory is that if I am uncomfortable I will not get in a deep sleep. And so far it is working. I wake up about once every hour (I can see the clock from my chair) and check on her.

However, I can't sleep. Not until late. I believe I have been averaging about 3-5 hours of broken sleep every night. So every day I am never getting things I need to get done, done. I have appointments for both the kids I need to make, paper work I need to finish filling out, a non-profit org that is in the making that needs my attention, etc, etc. Oh and don't get me started on the laundry! Now we all do get fed, so do the animals, etc, etc, but then I feel bad because I am not getting my other things done. I know I am not Super Woman, but the guilt likes to grab me and hold me tight sometimes.

You would think that after waking to Lily having a perfectly silent seizure I would be more confident that I will wake when she has the next one. But I think that one in April really knocked me for a loop. I know that I am just human but when it comes to my kids "being human" isn't an option.

I tell you a little secret, when I think back to any of Lily's seizures I see her eyes as blue. For those of you who have never had the pleasure of meeting my wonderful girl, Lily's eyes are brown. The only reason I can come up with is (and this is from my two semesters of psychology lol) that I am trying to disassociate the seizures from Lily. but why blue? Why not green or hazel? Blue is my favorite color so I really don't get it!

Any little movement she makes and my heart starts to race, only very late at night. And that my friends, is very silly. Lily rarely moves during her seizures. Number one reason I HATE when she sleeps on her back. She can be very stubborn when she is asleep. I move her onto her side and pretty soon she is back on her back again. C'mon kid, work with me! lol

I am so afraid for my little girl. And mad. No I am pissed! Why do things like this happen to our blessed little children who have never hurt a soul in their lives yet crazy pure evil people walk among us totally unscathed. And before anyone says life isn't fair, lemme tell you that phrase doesn't even begin to cover it. I don't however, blame God or a higher power. There is no blame here. I guess that makes it even harder to deal with the anger. Where do you go with it?

Tonight I will probably join them on the sofa bed but I will stay sitting up, my hands clinging to my daughter's chest. My own type of oxygen monitoring.

There are times that I feel that I am going to drowned in a pool of what if's. People say you can't think that way. Unless you are in this position you don't understand that you can't escape it. The what if's creep out of the deepest recesses of your mind and plant themselves firmly in the forefront before you even know what is happening. While it is a heavy burden to bare the what if's can at times help you prepare for things. But there are what if's that are just so terrible you can't even stand to face them, even in the darkness of your own mind.

So there it is, my thoughts and emotions laid raw before you. These are my thoughts at night when I am alone. During the day I do have these feelings but once that sun sets I get those butterflies in my stomach and it is all downhill from there. Thank God it's summer and the days are so much longer!

Thank you for reading.

A hated new twist or damn you Epilepsy, damn you!

So come travel back with me to the morning of Thursday, June 16th. I wake up in bed with my arm around Lily. I notice next o her it's wet. Well that's odd, I think. She has only had maybe one or two accidents in the past year. So I glace at her and see that she is holding the headboard (we have a metal sleigh bed frame), so I think ok she's awake. I pop up to say hi to her and what do I find? Her other hand is frozen halfway to the headboard and her eyes are wide open and unblinking. Yeah, she was having a seizure! I called her name twice to be sure (yeah I know, but you gotta understand she has only ever had seizures at night, within an hour of falling asleep. NEVER EVER any other time, so I was in a bit of shock and disbelief.) So of course I don't have a phone upstairs with me because that would just make waaaaaaay to much sense. So I dash downstairs, grab the phone and dash back up. I guess. I can't remember seeing the kitchen (where the phone lives) or the steps, etc. I just remember being gone from the room for a moment and then being back with the phone. Funny what your brain does in an emergency situation. So I call 911 while peeling her tightly gripped fingers off the headboard. I carried her downstairs (no easy task, her body was stiff as a board! Something else that was new!). I put her on the floor and yelled to CJ  to hold her on her side. He couldn't understand why. lol Poor kid had been asleep and had no idea what was going on. So I said she is having a seizures and dashed into the kitchen to get her Diastat. I gave her the Diastat and just a pair of minute later our wonderful guys (the Green Emt's) walked in. 20 seconds after that Lily's seizure ended. About 5 minutes if I did indeed wake up when it first started. Unfortunately we will never know. I can only hope that I did.

So what's this all mean? Well, first Lily has never ever had a seizure in the morning. 2. What's up with this stiffness? That has never ever happened. Not constant. I mean she has had one or two seizures that she has gone stiff for a few secs and then back to limp but never for the whole thing. So ok we got new stuff. So the good points, no vomiting, no hyperventilating, she breathed fine through the whole thing (I bet a whole bunch better than I did!!).

So what's the same? Still was a partial complex seizure and was still related to sleeping, in one form or another.

So here's the deal.....I want her to have another EEG. I understand that they are the same type of seizures and still related to sleep but but but the presentation was different as was the timing. So something is changing. Why am I telling you this?? Because her Neuro doesn't feel it is necessary at this time.  It has been over a year since her one and only EEG. Things do seem to be changing and guess what?? I want another one.

So here's how its going to roll. On July 11th, Lily has an appointment with her Neuro. If she will not give Lily an EEG then I am sure the Cleveland Clinic will be more than happy to. End of story. And if the EEG comes back and nothing has changed, then her Neuro is more than welcome to dance around and sing I was right, I was right. lol

And Lily? Well she is good now. She actually had been doing really good in the ER after a few hours of sleep. She was finally up, talking, we all had her laughing, then her hands started to tremble. They were just getting ready to send us home too. But at that point they said let's keep her overnight. So we stayed and she did fine. We are home today and she is back to her normal self.

Tracy and I? Yeah, we are jumpy as all get out. With this new timing twist, well it's gonna be ugly for awhile. September cannot get her soon enough to get her seizure alert dog!! If she continues to follow her breakthrough pattern, the dog should be here with us at least a month before the next one. But epilepsy is a fickle disease and it is very rarely predictable. So we will just have to keep our fingers crossed and live without a lot of sleep!

Thank you for reading!!

You CAN fall in love in three days time!

Oh yes you can. Now you may wonder why I say that. Well, this is most likely going to be my longest (and most typo-riddled) blog post ever! So grab some snacks, smoke 'em if you got 'em and get ready to do some serious reading!!

You can fall in love in the span of three short days....I know because I did. Madly, deeply, crazily in love. My love spans this country and the globe! I looked into many eyes this weekend and I will tell you what I saw......intelligence, understanding, love, and many bright beautiful spirits! Tell me, if you tomorrow awoke to find that you had lost the ability to speak, to move your arms and legs, etc. would you still be able to communicate? I think not. But I found this past weekend the children with canavan can still communicate! They do so with their eyes and they touch your soul! If you ever get the chance to meet a child with canavan then I implore you to do so.  I think you would be amazed at these wonderful children.

Ok so now we are going to take a trip in the time machine to Saturday May 28th. Around five o'clock that evening Lily developed a fever of 100.6. Not too high, but any fever is too high when you have epilepsy. So I gave her something for the fever and it went back down. However, soon she started complaining that her ear hurt. So I called the nurse and she told me to take her in to be seen. So I did and she was diagnosed with an ear infection. We were given an Rx and off we went. We filled the rx and came home. Lily fell asleep on the ride and I noticed when I put her on the couch that she felt really hot again, so I took her temp again. 102.4 under the arm and I was not supposed to give her anything again for the fever for another 45 minutes. So another call to the nurses (love being able to call them!). Once the nurse learned that Lily had Epilepsy she said to give her the meds now so I did. It didn't matter however. One hour later Lily had her first Febrile seizure. It lasted somewhere between 14 seconds-1 minute (long story over why it's so hard to tell and since this post is going to be really long anyway I am just going to leave it out). She was taken back to the hospital by our buddies from the fire station (who Lily had just visited that day!) and was released shortly there after.  The fever disappeared after the seizure and never returned.

Jump ahead now to that Tuesday, May 31. Lily awoke with a rash all over her legs. It's not unusual for either one of my kids to break out in a rash but this was not a kind of rash I had seen. So I couldn't take her to school until I got it looked at and made sure it was something contagious, so back off to the ER again! Three times in three days! Poor kid! But Lily LOVES the hospital, thank goodness! Anyway, long story short they told me that Lily had Hand-Foot-and-Mouth disease and that she could not be around other children for two weeks! Oh no, what about our trip?!? Tracy didn't buy it especially since Lily's rash looked like it was disappearing (with HFM disease the rash stays around for 7-10 days, not hours!), so he called a couple of her different Dr's and they said that it didn't sound like that at all, to try and see if she could see her Ped that day. Well her Ped was full and unable to see her so Tracy took Lily to StatCare (for those of you outside our area, it is one of those Urgent Care places). The StatCare in Jackson twpship has never steered us wrong so I was totally ok with this. Lily got seen by one of our favorite Dr.'s there, Lisa Vaughn. She took one look at Lily's throat and said we need to do a strep test. And yeah it came back positive. She never had HFM disease or an ear infection! Her ears were clear and the rash was almost completely gone. I had changed laundry soaps over the weekend and yes they did know that at the ER. Anyway, because Lily had been on antibiotics since that Saturday, she was not longer contagious and we could still go to NY. So we did!

The Conference was amazing! The hotel was beautiful, the food was great, the rooms were beautiful and comfortable! Our schedule for the weekend was great too! They were somethings schedule to do but there was a lot of time for the families to spend time together, getting to know each other, etc. On Sunday we got sometime to spend with the researchers which was very nice. Many of the researchers were very warm and outgoing. Honestly I really did except some stuffy old men in white lab coats (I know shame on me for generalizing) and I was pleasantly surprised that there were NO stuffy old man there in white lab coats.

Lily was a big hit with everyone, she is so outgoing and very much her father's daughter. She was of a great interest to many of the researchers. Several of the researchers I spoke with feel that Lily's Epilepsy and the Canavan are NOT related due to my husbands family history of Epilepsy. If that is the case (and there is no way to know for sure) then Lily would be totally symptom free. Many also told me that they feel Lily is the key to better treatment and if not outright curing the disease. We are gearing up for some lab work here.

Now we are home and I am more determined than ever to raise awareness and help these amazing kids.

So I will let you in on a little not-so secret, lol. I am now working on creating the Fight For Lily's Future Foundation! This may be a slow process because I don't want to mess anything up, but I got a lot of great help in my court (Thank you Sarah and Michelle!!) as well as Akron Legal Aid (Thank you whoever decided to included non-profits at Legal Aid!!), so we will begin to slowly creep forward in this endeavor.

And in other news we also have one more fund raiser coming up! It's a poker run and you can see all the details at http://www.facebook.com/home.php#!/event.php?eid=125880944161730

Ok well this wasn't nearly as long as I thought it was going to be. I have to be up early tomorrow and am running outta steam. So good night!!

As always, thank you so much for reading!!

Our trip to New York or can I go for a car ride??

For those of you who don't know we are going to attend the Jacob's Cure Canavan Research Summit & Family Conference next weekend in Harrison, New York. What that means is if you are a facebook friend of mine you are going to have to see me count the days down until we leave. Lucky you!! lol  We are very excitied to go to the summit. We get to meet many of the wonderful familes we have been talking to and meet all the researchers that have been working so hard to find a cure to Canavan. To read more about the Summit please see the news article located at http://www.lohud.com/apps/pbcs.dll/article?AID=2011105230319 . It has some really great info in it!

In other news I have received two years free hosting from Hostable Web Hosting (http://www.hostable.com) and registered lilysfight.org through Go Daddy! in our first steps to create The Fight For Lily's Future Foundation which will raise money for Canavan and Epilepsy research. We are seriously in our infancy right now. The website is going to take me a while to get going. But when it is ready I will post on here and let you all know!

Also we have another fund raiser coming up in July. Please keep an eye here or at http://4pawsforlily.blogspot.com/ for more information about that.

As always thanks for reading!!

I think all parents compare their children to kids of the same age. I know I always have. CJ was always behind in his small motor skills (just like his mama) but I never let it bother me. I knew that he would catch up and he has. However with Lily I find that I can be at times a little obsessed with my comparing. For instance, Lily plays soccer on Saturdays (pics coming soon!). I watch to see what the other kids on her team are doing and what she is doing. They are playing soccer. She is doing ballet, jumping in mud puddles, waving to the crowd, stopping to drop a one-liner here or there, etc.  So for a few minutes I feel concerned and slightly frustrated. But then I remember CJ playing t-ball at her age. I remember him digging in the sand when he was suppose to be a 2nd basemen. Him doing handstands in the outfield, etc, etc. Taking a deep breath I realize that this is just my daughter's personality. Not everything can be blamed on Canavan. It's just hard sometimes or me to tell the difference.

We are truly blessed that we had CJ first. CJ provides an excellent basis of comparison for things that Lily does. He keeps me calm because I can look back on things he did at such and such an age and realize that most things are just her personality.

Lily has had 4 evaluations. 3 done by Akron Children's Hospital and 1 done by Green Local Schools. All the evals say that Lily is just about where she should be for her age. That is very much a cause to celebrate! Now I just wish that medical professionals would stop saying to me "Let's just hope that continues." I REALLY don't need to be reminded all the time that it may not. Trust me, I am more aware of it than any of them could ever imagine.

I try not to over push Lily and try to be aware of when I might be just a little (or more lol) over the top. She has to move at her own pace and I know that if I push, she may just back slide. But it's hard sometimes. Finding that perfect balance. Between pushing to what she is capable to do and trying to push her beyond.

Thank you for reading!

Acceptance or How I Went From Coward to Fighter in the Span of a Year

When Lily was first diagnosed with Epilepsy I had read something about accepting the situation, that was the only way to move forward. I remember I was horrified by such a suggestion. I would never accept that this was anything other than just a fluke. A one or two time deal. Then she had more seizures but I still clung to my resolve, this wasn't real, that this would go away someday. This wasn't possible. This was not happening to my child. No way!

There was no way I was going to accept this situation because if I did, it would make it all real and true. Can't go there. Not gonna happen.

So I stuck on my smiling face, smiling at people when they asked how do you do it? Just smile and said I just do. But I did simply because I didn't believe. Denial at its finest.

Jump ahead to now, many, many months later. I have come to accept the whole situation. The Epilepsy, the Canavan. I can't really tell you when I moved from denial to acceptance, but I can tell you this. You can't move forward without acceptance. You can get nothing accomplished without it. If you don't acknowledge the situation head on then you certainly can't deal with it, move forward with your life, work on changing things, etc. Now don't misunderstand me when I say changing things. I know I cannot change the fact that my daughter has Canavan or Epilepsy, that is something that is set in stone.  That fact I no longer deny. But what I do deny is that nothing can be done to change things.

Another fact I deny is that Canavan is rare. Here's what I believe. What they call traditional Canavan is rare. I think the form Lily has is not. Why? Simple if not for her seizures she would have gone undiagnosed. So you may think but she has the seizures therefore Canavan, but wait! My husbands family has a history of Epilepsy. It has been suggested to me that the seizures may not be being caused by the Canavan. So if that history of Epilepsy was not there, Lily may not have seizures, therefore she would not be diagnosed. You follow me?

So why is this such a big deal, you may wonder. After all Lily is not being treated for Canavan because outside the seizures there is nothing to treat (she is being treated for the seizures however). So if kids like Lily go undiagnosed  it's not a big deal, right?

Wrong!! Why? Because Canavan needs numbers. There it is, point blank. If there are cases out there that are not diagnosed, they need to be. As a rare disease Canavan receives virtually no funding for research. What does this mean to kids like Lily? Not much. What does this mean to kids with "traditional" Canavan? The world! With research we can cure these kids, with research we can give the kids their lives back.  These kids have as much of a right to a normal life as anyone else. Fate has dealt them a terrible hand. YOU can help over come that.

How? You may think. This thing is huge, how can one person make a difference? Well money makes the world go around, so they say. But I disagree, I think it's love. If you are like me and as broke as a joke there are still things that you can do. All it will cost you is time and think of the joy you will gain in your heart knowing that you did what you could to help!

First, educate your self on Canavan. When researching Canavan, watch out for out dated info. Trust me there is a lot out there! A good place to start is http://jacobscure.org/.  As you read you may think, I don't understand half of what this is all about, so let me put this in non medical terms. The coating that covers our nerves (which transmits nerve impulses necessary for us to function) is destroyed and does not regenerate in kids with Canavan. That means loose of hearing, sight, swallowing, etc. and eventually death if that process is not stopped.  Take this education and spread it. Tell everyone you know about Canavan, including medical professionals! I think you would be surprised by the amount of medical professionals that know nothing of Canavan.



If you aren't into talking to people then consider hosting a screening party for As Daylight Breaks http://jacobscure.org/sponsor.php  Once again this will only cost you time.

Before you close this page I want you to look at a previous post called Please Read. You can find it to the right under popular posts. Look at the children. I mean really look at them. They won't go away once you close this page. Their lives still go on and their families still pray for a cure. You can be a part of that process. Open your heart to the children and their families. THEY NEED YOU!! Please don't turn your back on these kids!

As always thanks for reading and please spread this post!!

MRI results

So got the results back on Lily's MRI on Friday. Nothing has changed in 14 months, which is most excellent.

Now we are getting ready to attend the Jacob's Cure Canavan Conference and Family Summit in NY at the beginning of June. We are really looking forward to meeting the other families and the researchers!

This week will be spent running her and there gathering things I think the researchers may want, like the MRI, test results, ect.

I know this is just a short update but you know what they say....no news is good news!

As always, thank you for reading!

All's well

So we are back from her MRI and all went just fine. She is a little loopy but happily munching on a frosty right now. So all is good and I can now let out my held breath! lol Of course the waiting game is now waiting to her from her Dr with the results, but he is pretty fast so I don't anticipate a long wait.

Also Lily is in our local paper today! You can view the article at http://www.ohio.com/news/121071864.html

As always thanks for reading and I will update again as soon as I hear from the Dr.

MRI

So Lily has an MRI scheduled for the morning. It was scheduled two other times but both time she came down ill and we were unable to do it. But she is good so looks like she will be having it done tomorrow.

I am rather apprehensive about it. She has had one done before but that was under general due to her sleep apnea. The sleep apnea is gone now (YAY!) so she will be put under sedation tomorrow. I know it's not a big deal but since this is something new for us....well I worry.  I am sure she will be ok. After all it's Akron Childrens and they really know their stuff, but being mom, I guess worrying is my job. lol

In other Lily news, Lily has started playing soccer on the Green Grasshopper League. That is so cute and funny! I will be getting some vid's up here soon of her playing or should I say posing for the camera. If we have the camera out she will run by grinning, not a care in her head about where the soccer ball is or which team has it. lol

Also in June Lily will start horse back riding lessons once a week. I think that should be a lot of fun for her and help improve her small motor skills.

I will update tomorrow after we get home form the MRI and then of course I will update again once I speak with her doctor about the results to see if there has been any changes.

As always, thank you for reading and caring!

Here is a video I made about Lily. Hope you enjoy!!

No news is good news

Sorry it has been so long since I have updated Lily's blog but thing have been blessfully quite here on the home front. I do plan on writing a trip report about Lily's make a wish trip but haven't had time as of yet. I need to get her video ready to send in to 4 Paws For Ability, so that is the next major task on the agenda.



But I thought I would share some pics from  the wish trip as a little teaser, so here ya go!

As always, thanks for reading!!

Update

Well on Jan 10, 2011 Lily broke her 4 month no seizure streak. She had a very small, very short seizure that night. Lasted about a minute and no vomiting or hyperventilating! Yay! So that was good. They upped her Keppra again and she is doing very well on the new dose.

We are leaving in a few days for Lily's Make-A-Wish trip to Walt Disney World. We will arrive at Give Kids The World Village on Sunday and I will be updating her blog through out the week with pics so keep your eyes peeled for that!

Lily woke up this morning needing to blow her nose and said that her throat hurt. I am hoping it is just because I upped the temp on the furnace last night so maybe the gas heat dried out her throat or something. she had some soup and said it made her throat feel better and that it is fine now. Yay! I hope it stays that way. Not wanting to travel by car to central Fl with a sick child who has seizures!! Hopefully if she is indeed getting sick it is just a little cold. I don't want her to be miserable on her wish trip.

Please read

I want to share some things with you all. I hope that you will read this blog post all the way through despite that it is going to be a long one. It will most likely not be very easy to read, but I want you to keep in mind that there are those who cannot just close this website and make it all go away.

I want yourself to imagine that you are a new parent, your precious little baby is just 6 months old.  Your baby hasn't been hitting its milestones on time and your Dr wants to run a few tests. You are sitting in a room at the Dr's office, cuddling, cooing and playing with your precious baby waiting for the Dr to come in to tell you that the tests came back fine, that some children just take longer than others to reach their milestones.

The door slowly opens and the Dr comes in. He won't look at you or your child. He is nervously shifting his weight from foot to foot, playing with  pen in his hand. It seems that he is doing everything he can to avoid looking at you. He finally sits down with a deep sigh. Lifting his head he looks at you and to your horror there are tears in his eyes.

"I've never had to do this before." he says softly and your heart begins to race, your palms sweat.  Oh my God, you think. What could be so bad?

"The tests have revealed that your child has Canavan disease."

"What's that?" you ask fear making your voice small and weak.

"Canavan Disease is a rare fatal genetic neurological disorder that deteriorates the white matter (myelin) in the brain. White matter is responsible for forming a protective coating around every nerve in the brain and spinal cord to ensure that nerve impulses are properly transmitted from one part of the body to another. Without myelin, the body cannot perform normal motor skills, can become increasingly stiff or floppy and suffers a multitude of symptoms including issues with swallowing, severe scoliosis and hip dislocations. I don't know how to tell you this, but the skills that your child has acquired they will lose. Eventually your child will become trapped in their bodies, develop seizures, lose their ability to see and swallow, and die in the first decade of life. I am so sorry."

"Treatment?" you eek out.

"There is none."..................................

If you are just imagining this scenario then you are one of the lucky ones. This is sadly the reality for parents of child with Canavan.  Their beautiful, wiggly, giggly, cuddly baby will never be able to say I love you.....never be able to hug them.......never be able to kiss them....never mind no dating, graduation, driving, or any other kind of milestone that goes along the transition to adulthood. The hopes and dreams they had for their children are dashed, changed instead to justs hopes and dreams of their children living.

Can you imgaine worrying constantly that the next cold your child gets might kill them. Can you imagine constantly being haunted by the thoughts of your child's death.....it's not something you can get away from.  Every waking moment, every dream when you sleep is how can I save my child? Can you imagine living with that?

This is the reality that many of my friends live with.......their children are dying........my daughter may be dying.

This is Amber Rose. Her short life was cut short by Canavan.  She passed away just a few months short of her 8th birth day.

This is Ariel. She is Amber's sister. She also has Canavan.

This is Lana. She also has Canavan. You can support Lana by joining Saving Lana on Facebook.

This is Lilliana. She also has Canavan. You can support her by joining Lilliana's Hope on Facebook.

And this is my daughter Lily and my son CJ. Lily has Canavan. If you are viewing this blog then you are already supporting her. Please join her blog!

Thank you for reading!

Calling on you and need your help!

I REALLY REALLY need your help right now and the only thing this will cost you is a very short amount of time every day.

Jacob's Cure is a non-profit organization founded by Jordana Holovach to save her son, Jacob, who was diagnosed with Canavan at 6 months old. Jacob's Cure is currently in the running to win $250,000 from Pepsi, but we need your help to do it!

We need people to vote every day, three times a day. Please pass this info on to your online network, offline family and friends.

Here's how to vote!

Vote for Jacob's Cure to Win $250,000 in the Pepsi Refresh contest during the month of January.

You can vote 3 ways every day!!

1. http://www.refresheverything.com/jacobscure
2. http://apps.facebook.com/pepsirefresh/idea/view/id/d3ce2082-05b9-102e-be05-0019b9b9e205
3. Text 105628 to 73774

Visit http://jacobscure.org/vote to sign up for daily reminders and to get the most up-to-date voting information!

Thanks for joining us!!