Getting closer

Yes! We have received a date from 4 Paws when we can pick Carina up from her exteneded training. We weill be leaving on December 8th. We are allowing a little extra travel time due to having to go through Buffalo, NY. Blizzard City of the world. Carina's extra training is going to be so helpful to Andrew. She already does an All Star job with seizure detection. Now having the ability to tether(hook) Andrew to Carina to keep him safe and allow him to maintain his independence is huge! It is hard to believe that Andrew has ony started walking 3 years ago and now at times he will almost jog when on a flat surface. We are driving to Ohio and staying in a hotel for several days. We woudl like to ask for any help that we may get to pay for our trip. People were so gracouis in the past wit raising the money for Andrew to get Carina. We thank everyone for their help then and ask if anyone could help us out again now? Any Donations can be mailed to me at: Jamie Riley PO Box 318 Bradford, Vermont 05033.

Struggles

We have been lucky enough to have Carina in our lives for 3 years now. Andrew and Carina are best friends. They go everywhere together, even school. That has not come easy though. We had to fight the school from November 2010 until July of 2010 just to get her in the door. They were unwilling to let a service dog in, which is against the law. The school continued to make things very difficult for Andrew and Carina to remain in school. We have gone as far as getting the Office of Civil Rights involved. We continue the battle and are now sending Carina back to 4 Paws in hopes to make our lives easier with the school. We asre hoping that by having Andrew tethered to Carina we can keep Andrew safe, yet we will not have to pay for someone to hold Carina's leash at school. We have absorbed this cost for the last 3 years.

We struggle to keep all Andrew's medical issues and school issue on track and organized. Then on August 23, 2013 I lost my Dad after a long medical battle. Yet, the school still persisted with all there issues surrounding Andrew's education and Carina being in the school. Andrew broke his heel and needed a cast. We had to replace the cast twice in 3 1/2 weeks. Andrew's seizures got worse due to the fracture and his pain. It was like the school took advantage of me being in a tough spot emotionally and physically.

It has only been 2 months since my Dad had died and I keep wanting to call and talk woth him about my struggles with Andrew's school. I hope that others can learn from this and truely stop and think before they judge. EMPATHY is a wonderful thing..........some people just forget what it is.

Please consider donating to help fund the trip back to Xenia to get Andrew's best friend, Carina.

Andrew's update

Andrew had tried the ACTH injections again for his ever increasing seizures. This time it did not work. His seizures got worse not better. While he was on the ACTH we tried to get him off the Felbamate. As a result his seizures were so bad that they really concered both Allen and I . Anderew ende up with an emergency EEG. The results indicated what we were seeing. He was tapered off the ACTH and back up on the Felbamate. I met with Andrew's Neurologist and we discussed his seizures and med we have tried and options we have. After much conversation we decided to go ahead with Vigabtrin (Sabril) The sideeffects of this med are pretty severe......but then so are his seizures. So we started the Sabril. He then started the taper off the Felbamate again. The school called several times to say that Andrew;'s seizures were getting worse...ah duh!! I explained that to you many times but it didn't keep them from calling to try and send him home. We had meetings last fall to establish a sezure careplan and Andrew's PCP met with the school and we still get more calls then we should stating he is "having a hard day" Well you know...everyday he has a sezure is a hard day for him! I am happy to say that he is all the way off the Felbamate with no worsening of the seizures. Now we can see the true effectivness of the Sabril. I had a substitute nurse call me last week to say that maybe it wasn't apprpriate for Andrew to be at school if he was going to " be like this. Yep. that raised my hackles. If they have the issues and are uncomforatble with his seizures then they can hire a nurse to sit with him while he is at school.

Carina and Andrew's bond continues to get stronger and stronger. She is doing very well with her pre alerting. The school and school board continue to resist Carina being there. Now that she is there they have decided she is difficult to contrrol and needs her own handler and we need to find and hire the person ourselves as well as pay this person. Thanks to the DEiabilty Right Center I am fighting there decision. Somehow this will all work out and Andrew and Carina WILL remain together. We worked to hard for this not to.

Alex is Andrew's new baby brother and finds him very interesting. Alex will mimick the noises Andrew makes. Jessica thinks the world of both her brothers. She says that Andrew is her favorite brother with seizures and Alex is her favorite brother with out seizures. Having 3 kids is the best things I could have ever done! Although I am very busy I would not change it for anything!

My Dad is not doing well and I worry for him. He is a fighter and I know that he will make it over this bump as well. Mom does a very good job taking care of him. So I ask that if you are reading this please pray for my Dad's health and for my Mom to continue her great job!  :)

Things sure have changed

Andrew and Carina have FINALLY reached the ultimate goal and she is at school with him. Not before spending 8 months in a crate while the school reached their decision. Now that she is in the school I feel they are trying everything they can to get her out! At home she is alerting before and during his seizures. Her bond to Andrew gets stronger each day. The very odd thing is the school is the ONLY place she has had trouble being allowed in. She recently went to day surgery with Andrew when he had his tonsils out. They loved her and think that she is wonderful for him.

This las summer I offered up 4 weeks of my maternity leave for them for training...they only used a few days. Their choice not mine. The children in the pre k and elementary school are used to Andrew and Carina.  They ask if she is "working" before they touch her. So, why is it so hard for the adults at the school(not all of them only certain ones) to see the potential and the benefit of having Carina there. No, they want me to bring a video camera home and tape a pre alert and a seizure. Yeah right because I know when this is going to happen and I have tons of extra time! As Carina's trainer had stated " they then need to send a video camera home with a parent of a child in a wheel chair take him out sit him on the floor and tape the fact that he needs the wheel chair. Many differnt people have wittnessed her alerts and theitr magnificent bond. She has had no ill or unwanted behaviors while at school. They say that handling Carina and Andrew is hard on his IA's back...but won't it be harder on there back as he gets older and can't walk independently for long distances? They feel it is to much to handle her and Andrew at the same time. All I want is to increase Andrew's indepdendence and this can be done by increasing his reliance on Carina.

I want to know why when I have to fight so hard for everything else in his life this needs to be so difficult. The communtiy and people who love Andrew raised the funds to make this possible. What an utter disappointment if the school boards decision in November is that Carina can no longer attend school with Andrew. Then the question becomes: what is best for Andrew and who is looking out for his best interest and who doesn't like change. The law sides with Andrew, for the most part.......except where the "handler part comes in. I can't quit work to be her handler and I can't afford to hire someone either.

On a more positive note Andrew's new baby brother Alex adores him!! The smiles he gives him melt my heart!

Carina and Andrew...A Match made in Heaven

Ok so I haven't posted in a very long time.....here is an update for everyone who wants to know how Andrew and Carina are doing. The training itself was fun but exhausting. We were lucky enough to have family in the area that we could visit often while we were there. Now that we are home it still takes work and dedication to mainatain Carina's skills. She wants to play with the cats all three of them!! Each day is getting better. We are currently taking a swab of saliva from Andrew's mouth after a seizure and using that on Carina to help her cue in on Andrew's seizures. She continues to perform a pre alert at times, but currently his seizures are so frequent that she is probably stiffled with the scent.

Andrew has been having some very strong drops and jerks lately. Last night I was in the kitchen and Carina was walking behind me, Andrew was standing in front of the t.v. and had a huge and hard drop seizure. Carina immediately went to him and began licking him. (Esp the mouth ears and nose where the seizure smell emits from) She definatly knows that she is his dog and provides alot of comfort to him even when not having a seizure. Since we had the groomer cut her hair she is like a saoft puppy and he can't get enough of her.

Carina has the patience of a saint! Andrew will crawl over her lay on her and even HUG her!! It was the most awesome thing I have ever seen when Andrew walked upt to her last week as she was standing by the couch.....he wrapped his arms around her neck and gave her a big hug and laughed.

We are having trouble with the school allowing Carina in, even just for Andrew's monthly progress meetings! It is a public buliding and they are stating I have to give them 3 weeks notice before she can go on ANY school property. They produced a paper that stated that the handler of Carina has to be prperly trained and liscensed. There is no such thing as a liscensed handler! A battle better to be fought by the disability rights office. So I wait to hear from them.

The Keto diet is not working for Andrew. The new medicine from Canada does not seem to be working either, though we are not up to the full dose yet. Right now he has a horrible cold and cough that walks the fine line of almost being croup. AGAIN... he just had croup last month and was in the ER late at night.

Please check back for updated pictures soon.......

Yes we are here and so excited!!

We are in Ohio and we start class tomorrow. The excitment is increasing and we "hopefully" have all our ducks in a row. The good news is there is a Petsmart on the way to 4 Paws for the new toys and items we may need. We will try our best to keep this blog up to date each day but we will see. The next picture posted will be of Andrew and Carina (Jess too if she has her way!)

Getting closer......

As we are fast approaching Andrew's big day we are becoming even more busy! (If that's even possible) Allen has most of the firewood done for the winter. I was no help in that this year. Way to busy! Not intentional. I love being outdoors and so does Andrew and Jess. We cleaned up the yard yesterday and got the stalls ready for the horses. Allen uses them as his own private storage area in the summer. Jess had a birthday party yesterday. Allen kept Andrew and had some good quality Dad and son time. He is definitely in awe about how much Andrew has changed and how much better he is doing outdoors. He is very curious and will do some exploring. We hope that the dog can help with his outdoor mobility issues and make it a little safer for him.

Andrew goes for a regular EEG on Thursday....Dr Holmes will call that day or the next with the results. I hope the results look as good as he is acting. Sometimes they don't match and what I can't see can be worse than the seizures that I can.

On Friday he goes under general anesthesia to have his teeth cleaned and some caps put on his back teeth. Such a young fella to need that kind of dental work already! With his chronic acid reflux, meds he has taken and lack of ability to let us do an extensive brushing job,  they say it was expected.

On a good note Jessica has created her own count down calendar and she hand over hand assists Andrew with putting a sticker in each box in the morning. She is so excited for him. The calendar counts down to the day he gets his dog. She even titled it "Days until we get the dog". 

The smell of Fall is in the air.... Happy Fall everyone!!