Well......

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

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

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

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

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

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

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

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

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



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

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

First Vlog!

Just a small update

So everything is all good. No more seizures since the last. Though I am still a bit on pins and needles. However, the increase of meds seems to be doing it's job so let's all keep our fingers crossed! I thought Taz's was alerting last night but no he wasn't. He just wanted to cuddle with Lily a bit. He is such a sweetie. Last Thursday we got to do to Cedar Point with the wonderful group called A Kid Again (https://www.facebook.com/AKidAgainCleveland). We got to go to Cedar Point, they fed us, and we got to visit Dinosaurs Alive (which sucked btw. DO NOT shell out the $5 for it. REALLY not worth it!). Anyway we had a blast and Lily got to ride tons of stuff. I love how they have all the old rides from when i was a kid plus a whole bunch more new ones.

Lily had a really good time driving Tracy around. CJ thought he was awesome driving around the antique cars and both the kids loved doing the bumper cars for the first time ever. We didn't take Taz with us because it's been so hot here lately. I am really glad we didn't because it was a really hot day! So now we are just getting ready for the kids to start school. Lily is so excited about starting Kindergarten and I am so excited about having the kids in school! lol As always, thank you for reading!!

And here we go again!

Yeah, so I am sure you can tell by the title of this post, you know where this is going. Last Tuesday, Lily broke her streak. She had been almost seven months without a hospitalization. Well, that night she and I went to be. She fell asleep and was sleeping peacefully when she sneezed twice in her sleep. THAT was all it took. Eyes wide, frozen in place. She was a having a seizure, a status seizure. Diastat stopped it but since it had been so long since her last status off to the ER we went. They kept her over night, but as usual by like 4:00 am she was back to her normal self. If was a quick one, a bit different from here others, but it seems like she rarely has the same presentation every time.

Taz did alert and yes, I mistook it for him trying to get attention. Oh denial is an awful thing. lol Right before Lily fell asleep he was up on the bed standing over her. He NEVER stands on the bed. If he wants to get across the bed, he crawls. But we were playing with the cat, so I thought he was just being jealous. NOPE. One of these days I will actually believe him.

I know a great deal of it was that I didn't want to believe that that was what he was doing. After all it had been so long and I really had my hopes on that they were gone. I was a big old cry baby mess by the time the EMT's got here. But i am happy to report that I didn't and have not fell into the normal depression I get after she has a seizure that lands her in the hospital. At least that's progress on my part!

So they upped her nightly dose of Lamictal, doubled it actually. Also they told me to give it to her earlier. I was giving it to her at bedtime but now I have to give it to her at least an hour before bed. These Dr's crack me up. I have been told that the meds have to build up over time in the system to work, but now it's an on demand thing? lol I wish they would just say "Hey we aren't sure which it is so make sure you give it to her early enough so that it will have time to get into her system before she goes to sleep!" lol

In other news, Lily will be starting Kindergarten in the fall and Taz will be going with her. She is really looking forward to going and I think she has no clue how popular she is going to be, being the kid at school with a dog. I wonder how many Kindergarteners are going to tell their parents they want to take their dogs to school too? ;-)

As always, thank you for reading!

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!