Thursday, October 20, 2011

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!!

Thursday, October 6, 2011

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!

Wednesday, October 5, 2011

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!

Monday, October 3, 2011

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.

Monday, September 26, 2011

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!

Friday, September 16, 2011

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!!

Thursday, September 15, 2011

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!!