Introducing......

So let me start off by saying everything is going great with Lily....nothing really to report. But today's blog I would like to introduce you to Lily's brother in Canavan, Keegan. Keegan is a happy, cheerful 6 yr old boy with traditional Canavan living with his mother and sister. I asked Carrie if she would share her story about raising two children as a single mom with one child having a disability. Here is their story:

After I told Keegan's dad I was pregnant, he moved away about 2 months later without a word. Throughout my entire pregnancy I was sick every day .He was 10 pounds when he was born and seemed like a healthy baby boy except he would not quit crying. The First couple days he wouldn't take a bottle or nurse but he finally did start nursing. If he wasn't nursing he was screaming, he would hold his breath and his face would turn blue.

My daughter (Brianna) was in first grade when I had him. I had him in September and went back to work in January. It was probably the hardest time I've ever had in my life!! He slept on a infant schedule the first 15 months of his life. He wouldn't sleep more than 3 hours at a time but usually 2 hours at a time. My day was like this... I was lucky to get 4 or 5 hours of broken sleep a night, I would wake up, pack a lunch for work, take Keegan to daycare and Brianna to school. Most of the time he would be crying through it all. He would cry the whole way to Brianna's school and the whole way to his daycare. Those poor ladies at his daycare! He cried all day there because he was starving. He didn't want the bottle and didn't want baby food when introduced to it. He cried every time you got in the car, he hated it. So once again the whole way home, while I was cooking dinner, doing laundry and any chores, he was screaming the whole time.

I would sit down and nurse him while I helped Brianna do homework. At the grocery store people would stare at us because he was turning blue from screaming but there is nothing I could do.

He was meeting a milestone but when he would breath sounded like Darth Vader. I was constantly at the doctor with him but it wasn't until he was 8 months old that they diagnosed him.

The daycare agreed to keep them in the infant room until he was 18 months and then I didn't know what I was going to do for daycare after that. However at about 15 months he got aspiration ammonia and got it NG tube. They wouldn't take him back at daycare because of safety reasons. So I had to quit my job at the same time he also got on seizure medicine because he had a really big seizure when he was in the hospital with pneumonia.

He became a whole different boy after that. He didn't cry anymore, started taking melatonin and sleeping through the night. They had said when they diagnosed him he may never smile or laugh. So when he did I cried my eyes out with joy!

It turned out he was aspirating both liquids and solids, got a G tube.

Today he smiles, laughs, and only cries if he is in pain. He's my miracle!! I don't have family to help me with him. He has a wonderful caregiver through DDD and I have volunteers to help with him a couple hours a week.

Keegan is medically fragile and cannot go to daycare. He requires full time care. He is 55 pounds now and is getting to heavy to lift in and out of my car and then lift his wheel chair in. Since I stay home with him, he gets SSI and we get TANF. I do not have the money to buy a disability mini van with the $1053.00 a month for 3 people.

I am thankful for the chance to get to raise Keegan, he has made me grow so much, and has taught me what is really important in life. He is my little hero!

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Carrie is one of the strongest women that I know. Every time I have talked to her she is cheerful and pleasant. I have never one time her heard talk about feeling sorry for herself. Carrie is an amazing lady! Carrie and Keegan have the opportunity to win a handicapped accessible van from NMEDA. They need our vote!!! Please vote for Keegan as a local hero! Please enter code 726 at the time of your vote. It will give Keegan an extra 5 votes! Please share with all your friends and family and ask them to vote as well! You can vote every day, so please make sure that you do!! Visit here to vote for Keegan! The website is having some problem, so if you get an error please keep trying!

Over due update

So I know that I have been really, really lazy about updating Lily's blog and for that I must apologize. So anyway here is the over due update!

So exactly one month ago Lily had a short 30 second seizure first thing in the morning (are we really going to move to mornings again? sigh). Happy that it was short. She was a little off the rest of the day but otherwise ok. No hospital was needed as this seizure stopped on its own very quickly! Yay! We have not been in the hospital since Dec 21st! It's so very nice to have a break from our monthly hospital stays!

Then last night Lily possibly had a seizure. I was asleep but Tracy witnessed it. He said that she kept opening her eyes, they would stay open for a few seconds and then close again. She did this 15-20 times. And Taz was all over her, sniffing which is a good indication that she was putting out seizure scent. This morning she is fine and in a great mood.


In three weeks Lily will be up to where the DR wants her on her Lamictal and then we stop going up. This worries me as Lily's bod/brain catches up with these meds fast! So in one month I will be a nervous wreck. Keep me in your thoughts please! I need to learn to remain calm. After all panic solves nothing except to make things more complicated.

In other news, Lily is doing well. She is getting ready for Kindergarten and very excited about it. Not sure how excited the school is going to be about Taz, but time will tell.

Lily, myself and Taz went for lunch at CJ's school last week. Taz was a mega hit with all the kids and teachers too! He did very well! I am very proud of him as I know it was hard for him. He loves kids and asking him NOT to go to them all and play with them is probably the worst thing I could ask out of him. But he was well behaved, never missing a beat. He was rewarded by lots of love from kids, teachers and the Principal of CJ's school. We will be going to lunch there again soon.

Well that is all for now. I hope this blog finds you all well!

Thank you for reading!!

So check it out!

Another post and still no seizures to report! Yay! We slide through January with no seizures which is great. We haven't had a seizure free month since August. Here's to hoping we can make it through Feb with none as well.

In other developments we are finally off the living room floor! Yay! We got Lily a big girl bed that has a trundle that Taz just knows if his to sleep on. That works out very well because of all his long fur he gets very hot laying on a comforter. So he does start off the night in bed with her but once she is asleep he moves to the trundle where he is much more comfortable.

We also got a video monitor for Lily's room which is just awesome because now she can play in her room whenever she wants and I don't have to run upstairs every two minutes to check on her and I can talk to her through the monitor. And it makes it nice because I can now put her to bed at a decent time and Tracy and I can chill and watch movies, etc. And she loves it! Being a big girl and going to bed in her own room. Now when its time for me to go to sleep I do sleep in her bed and will for awhile. I need to do this in baby steps. ;-) I did try sleeping in my bed the other night but my brain kept yelling at me "She is over due for a seizure!" so off I went.

So we did end up switching Lily's Nuero to Dr. Brown (If you look back in Nov or Oct posts you can read all about the amazing Dr Brown) and we are very happy we did! I am completely pleased with Lily's team now and Dr. Brown is on board for the research with Lily and Canavan so yay! It's wonderful to have a neuro I can feel free to talk to about the research instead of having one that I feel I need to hide the research from. Also if/when the latest combo of drugs fail with seizure control (so optimistic aren't I? lol) we want to do the Keto diet so Dr. Brown is already checking into that for kids with Canavan. This guy is on it!

Well I really wanted to make this post longer but I have a rip roaring cold that is making my head really hurt, so until next time,
Thank you for reading!!

Just a day

So I thought it would be nice to actually update Lily's blog when really nothing medically is going on. I know that I tend to always update after a seizure or some other medical thing, but that really wasn't my intentions when I created her blog. This is a blog about my daughter. So today's post will be what's going on in general with her and the family and I think I will in a pic or two, so you all can see Lily's new hair cut (which while it is cute I cannot wait until it is long again!)


So Lily does not want to play soccer this spring she wants to play t-ball. I think that would be great for her as with T-ball I think it would be easier for her to focus. I think she will really enjoy it and am excited to see her play. I just can't decided if we are going to go through the Green Little League or the Y. I just know that I have to hurry up and make up my mind! lol

She is really excited about starting K in the fall. She keeps asking if tomorrow is fall! lol I guess I should have waited a bit to tell her about K but I am excited about it too! lol We drove pasted the school the other day and she went nuts over the playground. There will be no separation anxiety for her, that's for sure!

As you can see Lily and Taz are doing well together. Lily no longer has an issue with Taz sleeping with her so that is good. She know loves to cuddle up with him before she falls asleep!

So here is a pic of Lily and Taz from Christmas. You can see that her hair is *really* short. It has actually grown some since it was cut. It's almost to her shoulders now! Can't wait for it to get long again!

So here is a pic of the job she did on her hair. There was no saving it at this point! lol


I will say the short hair is much easier to take care of!

As always, thank you for reading!

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!