4 Paws For Alex

Hi Folks,

***  Walk for Epilepsy  Day ***

     Well the day started very early at 6:30am we were up and getting ready so we could leave by 7:30-7:45AM to be at check-in by 8:30am.  Alex slept until ~7AM this morning but once he was up he was very excited.

     We packed our pop-up canopy, folding chairs, and a cooler full of drinks (water & juice boxes).  When we got there we set up our area (see pictures)

     Then we had to wait until ~10:15am for the walk to start, we heard stories that the previous years they had like 87 people in 2007, 117 in 2008 and over 600 people registered this year. At least the kids could play around on the grass while we waited.

     Finally, they called out that the walk was starting; we were all lined up and ready to go.  Alex's Angels consisted of:  Alex, Jennifer, Jeffrey, Deanna, Auntie Penny, Cousin Francesca, Auntie Erin, Cousin Rachel, Auntie Janell, Mike, Kaylie, Lexie, Sydney, Auntie Joy, Henry and of course Honor.

     The walk started out very slow, you can imagine over six hundred people walking 2.5 miles around Artesani Park in Brighton, MA right on Soldier Field Road along the banks of the Charles River. Once we got several hundred yards things started to open up a little.

     After the walk was over they had prepared a BBQ lunch for people consisting of Hot Dogs, Hamburgers, BBQ Chicken & Ribs.  The kids sat down to eat an italian ice while the girls went to get food. 

      After eating lunch, some of us decided to go around for another lap, the people were: Alex's Dad, Alex, Honor, Auntie Erin, Auntie Janell and her family.  During this second lap around the park, Alex was in charge of taking pictures and to tell you the truth there were only like 5 or 6 pictures that were random shots of the ground.

     Once we got back from our second lap it was time to pack up and go home.  All in all we only raised $210.00 plus our $50 registration fee for our team, partly because we didn't get the donation web site set up until 2-3 days before event.  In fact our team didn't even make the T-shirts they gave out, there was an Alexa's Angels, so maybe we will just say the T-shirts were mis-printed ;).   Our Donation page is however active all year long, so we will have a jump start on the next walk that they have.  Our team goal is to raise $5,000 under the team name Alex's Angels. 

Please visit:  www.firstgiving.com/alexs-angels/)  Please check it out and donate anything you can, every penny helps.

Anyway that is all for now.

We are also going to post some pictures that we took when we took the kids to Mystic Aquarium in Connecticut several weeks ago.

Alex's Dad

     Boy has it been a long time since we last posted.  A lot has been going on.  We had an appointment in Boston in the beginning of April,  and we added another seizure med.

    Alex had been having quite a few absence seizures and we were really concerned that he was missing a lot at school. And not to mention he was very spacey. So we started the new med (Zarontin) Easter Sunday.  I truly have to say that this might be the only medicine Alex has taken that we have seen a quick response. It was a matter of days and we saw no more absence seizures.   Amazing how medications work!  However, the medicine has a few side effects, since all three medicines cause drowsiness Alex's is having a difficult time staying awake in the afternoon.  Some days he needs a 3-4 hour nap.  He was very tired when he first started it.

     He has been making good steady progress in school, and is doing well with seizures.  Of course, we always say that and yet usually something happens shortly after.  We are inspired with recent articles that were published in Newsweek April 20th edition.  It was mostly about Epilepsy. A lot of research taking place, new doctors, new drugs...and hopeful stories.  Someday we look forward to having our sweet little boy back, the one we knew before this disease took over.

     On another note, we have been working very hard with Alex's service dog Honor! He has been such a wonderful addition to our family. I know that he has made a difference in Alex's seizures. There are days that I am unsure if they have ever bonded, but then we have little things that happen that make us see that they do love and care for each other. We had to drop Honor off at the groomers one night at like 7pm and Alex was so distraught over going to bed without Honor. Then we came home and as soon as we brought Honor in to find his boy......he jumped on the bed and licked his face.  We have also seen Honor go to Alex when he has been whining or crying. It is very moving to see.

     We are so glad that we had support from family friends and community to help us make this friendship so possible.

We also have been working with members in the state house to help make changes in some of the service dog laws here in Massachusetts. We have Paul Frost's support and Stephanie his right hand girl helping us get a bill passed to change a few laws....More information to come about these.   

We were also pleased to hear that the first graders at Mary D. Stone School were awarded some state funds for a service learning grant.  This grant was written by one of the first grade teachers. The boys and girls bagged dog bones, and attached a homemade card that listed a few things and differences about service dogs and pets. These packages will be posted through the town of Auburn to educate the community about service dogs. When Alex, Honor and I visited the rooms while the kids were making these bags, a lot of kids made a picture of Alex in his helmet with Honor by his side. Alex has truly been accepted socially here in town, our own little "rock star" so to speak. This is so fun to watch, some days Alex eats it up everyone knowing him, other days he is very shy about it.

     Finally we are ready to take part this Saturday in the Walk for Epilepsy in Boston sponsored by the Epilepsy Foundation of Msssachusetts/Rhode Island.  We look forward to be a part of that very special day. Next year I want to dedicate my free time to the Epilepsy Foundation to help spread awareness about this disease and help educate communities about how it affects different people. 

     Please do feel free to help us by sponsoring any of us for the walk. We will post many pictures Saturday Night. So stay tuned. ...........................................................

If you wish to join us at the Walk for Epilepsy in Boston:

Join us (for a sunny day we hope)

at the DCR's Artesani Park,

Soldiers Field Road, Boston, MA Saturday, May 16, 2009

                       9:00 a.m. check-in

                     10:00 a.m. 2.5 mile walk

                     11:30 a.m. BBQ, music and fun

To register for the walk online click www.firstgiving.com/efmri

We also created a Fundraising Page on the Epilepsy Foundation Page (www.firstgiving.com/alexs-angels/)  Please check it out and donate anything you can every penny helps.

Check back Saturday/Sunday for our pictures.

Alex's Mom & Dad

Hi Folks,

     We just added a few vidoes of Honor playing in the snow.  Also recently Alex has started having more frequent absence seizures.  What is an absence seizure you ask.  When Alex has an absence seizure he will often "blank out" anywhere from a few seconds to 30-40 seconds at a time. During this time, Alex doesn't seem to hear his teacher/or us call his name, he usually blinks repetitively, and his eyes may roll up a bit. During shorter seizures, he just stares. Then he continues on as if nothing happened.  We have been on the lookout for this type of seizure but sometimes they can go un-noticed.

     Honor wasn't trained for absence seizures so he is mainly there for companionship during the postictal period (a time duration after a seizure) after all we would not want him to bark for every absence seizure at school for example as he may have several a day and it may be distracting and disturbing.  however we would have no problems with him barking for a typical tonic-clonic seizre (Shaking type).

     We will be going to Childrens Hospital (Boston in April and we ave already arranged to get an EEG (Brain Scan) while we are there to see if his spike waves are still indicative of his previous seizure types and depending on those results we may opt for an overnight monitor session.

     With Epilepsy life is very un-predictable.  Any little bug/cold could greatly affect Alex's seizure threshold and may increase his seizure activity abruptly and without warning.

     Well that is all for tonight.

Alex's Dad.

Hi Folks,

     Well we had an exciting day today and it was not in a good way.  Just after lunch Alex had an absence seizure at school.  He did seem not himself today, kind of droopy.  So much for the Dec. 18th day (last time he had a seizure), but life was good until today, but today brought us back down to earth.

     The school called Deanna early in the morning indicating that Alex did not seem himself today, not too engaged.  That after having a really good day yesterday getting a star from the physical therapy teacher.  Then in a few hours they called again this time indicating that he was having an absence seizure but it wasn't exactly worded that way.  The way it was phrased was Alex isn't responding.  Well that made Deanna jump to conclusions like he was having a Grand Mal Seizure and wasn't coming out of it.  All this happened so quickly. 

     Today Deanna wasn't close by (doesn't she feel guilty about that) so anyone who reads this please re-assure her that it wasn't her fault, there was no warning signs that this would happen.  Since this is the first time the school had witnessed this type of seizure it took them by surprise.  Deanna spoke to the primary care doctor and the attending at Childrens Hospital (Boston) (Alex's Doctor was out of town).  The doctor at Children's did say Alex was diagnosed with epilepsy (ie Doose Syndrome) so this was to be expected.   She told them the symptoms and that Alex just got over a bout of high fever and since Alex had such a "good spell" recently  they thought it would be precautionary to send him to the emergency room to get checked out.  Since Deanna wasn't local yet (30 minutes away) she called the always reliable Grandpa (Thanks Grandpa!) to go to the school and be with him while waiting for the ambulence to arrive. 

     The school did a good job of not making a scene having paramedics take Alex out of the classroom, they made sure that the halls were clear so the event did not freak out some of the other children.

     Needless to say that Alex, Honor and Grandpa got an ambulence ride to UMass Hospital in Worcester.  I myself was at work and immediately got in the car and headed for home or the hospital.  Deanna actually arrived a few minutes after the ambulence did so that made her feel a little better.

     When I arrived in Auburn, I stopped by the house to see if Deanna needed anything which she didn't but it gave me a chance to let the other dogs (Brady & Bro) out to do their business.

     Once I reached the hospital I asked for Alex's room and had to wait a few moments for someone to bring me to the room.  Once there I found Alex in good spirits but a little on the tired side.  The Doctor arrived to the room shortly after I did and started talking to Mom about the events leading up to his arrival at UMass and going over his history, you would think they have a chart on him and can read it before coming into the room since the isn't his first visit to UMass.  I guess that is the way it always is.  Just to be on the safe side we asked them to do blood work to see if his cell counts were normal or if they indicated a virus coming on.  It was good to ask for the re-assurance but the process of extracting the blood was terrible.  They had to attempt in three different spot before they got a good vein.  Alex was screaming like a banshee and Honor was worried pacing back and forth since he could not make it near Alex since there were three nurses plus Mom on one side and me on the other trying to stop Alex from looking at it.

     After the blood was drawn, Honor jumped up on the bed and stayed until Alex said Honor was sitting on his legs (ie the Lap command) besides that the beds are small.  We found out shortly after that all his blood counts were good and we were cleared for departure.

     Since we were not at school we could not observe Honor's behavior to what went on in school, Honor was trained with the tonic clonic seizure not an absence seizure so there is no guarantee that Honor would give a warning bark, but even still he did comfort Alex during today's visit to the ER.

     Alex did open some eyes at the ER having Honor with him more in amazement than shock, but since Honor is so friendly he got a lot of praise from the nurses.

         Having today's incident while we would have liked it not to happen, it has already highlighted Alex's condition and how unpredictable it is.  Alex's current aide had never witnessed  a spell like this but that is the nature of Alex's condition.

     Looks like it is back to light sleeping and constantly monitoring Alex closely again until Alex demonstrates a "good speel" again.  This has definitely brought us back down to earth and will heighten our awareness and force us to monitor him more closely.

Hi folks,

Alex stayed home from school today as he was tossing and turning all night long, by morning time he didn't have any energy to get up so he stayed in bed until mid morning.  Chacking his temperature he had a fever of 103 deg.  Hopefully, Alex's sickness will not bring on any seizures.  It was remarkable that Honor stayed by his side until he feel back asleep, however the other dogs playing downstairs made him jealous.  He went to the gate at the top of our stairs and was scratching and whining like a baby.

We will be taking a few videos of Honor playing outside in the snow (we just got hit with another snowstorm on Monday March 2).  Enough with the snow already, we want spring.  Although the snow is much cleaner than the spring thaw when the backyard will get very muddy.  The mud doesn't phase the puppies in the least.  However it does Mom and Dad who have to do doggie clean-up on three puppies.

We also made the newspaper again, checkout the news article in the News article section.  Thanks again to everyone who helped our son.  It has made a remarkable difference in Alex's quality of life.

We will be going back to the doctor in April for a routine visit, hopefully we can convince the doctor to re-screen Alex for epileptic spike brain waves to see if he is still having seizures but there form has shifted or changed.  Wish us luck. 

That's all for tonight!

Mom & Dad

              I guess I didn't get back to post photos like I said last time.  No worries, I already posted them before updating the blog.  Take a look.
     Since the last time posting Honor has been working hard, going to school when there is school of course (there have been many days off due to snow this year).
     Alex has been doing really well; the last known seizure we witnessed was December 18th, and before that Thanksgiving weekend.  We don't know why, but we'll take it.  We go to the doctor again in April, I guess we will ask about having Alex monitored again to see if his seizure patterns are changing, and if they are maybe we can reduce his medicine.

     The day we got home, Brady & Bro were staying at friends/relatives houses while we were gone.  Brady was staying with Deanna's brother and Bro was staying with a close family friend who had two dogs herself.  That night Honor went around sniffing the environment looking for the other dogs.  Luckily he did not try to mark his territory if you know what I mean.

     The next day we introduced Bro & Brady to Honor and vice versa.  All Bro wanted to do was play after all he is a puppy.  Brady on the other hand was a little more reserved.  When Honor tried to play with him, he growled.  In fact today, Brady is kind of the referee between the two puppies.  Calling Honor a puppy doesn't seem right because of his size, but he loves to play with Bro, in fact picking him up by the scruff of the neck and flinging him a few feet.  We have tried to limit this activity correcting Honor when needed.  The problem isn't Honor it is Bro, he keeps coming back for more nipping at Honor.  All in good fun I guess.

     We will need to take a video of Honor playing outside especially in the snow.  He loves playing with Milk jugs, chasing them when the fall out of his mouth.  He also is very fond of fetch.  We try to limit Honor's indoor play because of his size but every now and then when we are playing with Brady and Bro, Honor gets into the mix.

     The other dogs have adapted well to Honor, in fact since we now have Honor and "he" can get no human food only dog food, we have shown some tough love to Brady and Bro only giving them Dog food.  What a concept giving Dogs dog food, why didn't we think of that.  I guess it was just too easy letting Brady get any leftovers from the kids.  Since we knew we were getting Honor when we got Bro (Jen's Dog) we only fed him dog food from the start.

     I guess that is all I have right now.  We will try to get back here more often; it is just tough with all the everyday hustle & bustle.

Hi Folks,

This one is going to be a long one since we haven't posted in so long.

     Last time we posted we were still at 4 Paws, graduating.  The next day we left for home departing the hotel ~9:30AM.  We made an area in the back of the SUV for Honor to lay down.  He was excellent traveling in the car.  Every few hours we stopped for a rest break.  The GPS told us to take the northern route back home (via Rte 80), the scenery was less varied than on the way to Ohio, (we took Rte 78 southern Pennsylvania) but it was a long 10 days so we were glad to be heading home.

     We stayed in Northern Pennsylvania on the way back at a Comfort Inn, we stopped for the night around 5PM, the hotel was being renovated so we could not let the kids go swimming one last time before we got home. 

     The next morning we took Honor out to the complimentary breakfast area where we encountered our first issue having a service dog.  The Kitchen lady said no pets are allowed in the breakfast area, which was kind of ironic since on the Hotel check-in document it indicated no pets were allowed except service dogs.  Not wanting to rock the boat on our first day, Deanna took Honor back to the room while the kids and I finished breakfast. 

     When Deanna was checking out (I was re-packing the car) she asked to speak to the manager, she is not shy you know.  She indicated that she wanted to see the check-in document so she could point out the error in their ways.  At this point the manager was verr apologetic indicting she was unware the "Honor" was a service dog.  How could she not, he had his harness and service dog patch on.  After that we got in the car and headed on the last leg of the trip.  The GPS indicated that we would be getting home around 3PM, then 4PM after we stopped for lunch. 

     Little did we know at the time of the troble we would run into later in the day.  I had driven the previous day and from Pennsylvania to New York when we stopped to let Honor do his business.  At this point Deanna said she wanted to drive the remainder of the way home.  I didn't care so I let her drive, we reached Hartford at ~3:15PM just 45 minutes from home when I told Deanna to travel in the "Car-pool" lane since we were car pooling.  No sooner did we enter the lane did Deanna say now that we are in this lane how do we get out of it.  I said that there were exits off the highway from this lane, she said "What would happen if we got a flat tire where would we stop?" All of a sudden there was a loss of tire pressure in the rear passenger tire.  Of course it was all my fault because I told her to get in that travel lane.  I still contend it was because she said "What if we got a flat tire" (See the pciture in the photo gallery)

     We called AAA for roadside assistance, Honor had to move to the front seat so I could get access to the jack and lower the spare tire.  AAA said it would take ~45min to an hour to dispatch someone to us.  I started lowering the spare tire having to move a bunch of stuff out of the way.  I could not lower the tire easily because to do that I would have had to empty the back of the SUV, so I could only do a partial turn of the lowering bolt.  After about 20-30 minutes lowering the tire, I got the tire out from under the SUV.  Just at that point the AAA guy showed up.  At this point of course I would take the help, he used his hydraulic jack and impact wrench to remove the flat and mount the spare.  In less than 10 minutes from that point we were on our way.  It is nice to have the correct tools for the job.

     We got home and luckily Deanna's sister "Penny" was there to help us carry stuff into the house, which we were very grateful for since it was a long day.  That first night we let Honor smell the house and get acquainted with the environment before we introduced "Brady" and "Bro" our other dogs.

     The next day, we cleaned-up the house a little bit and anxiously awaited Brady and Bro's introduction to Honor.  Within the first few minutes we could tell that Honor and Bro would be very playful together and Brady would be the referee and break-up some of the rowdiness of the other two primarily by barking at Honor.   Sometimes Honor likes to play a little to rough with Bro, he does not realize his size and sometimes tramples Bro.  But Bro is very resilient and nips at Honor in a playful manner.

     We will be posting pictures tomorrow.

     For the first week or so Honor stayed with Mom during the school day, with Mom slowly introducing Honor to Alex's class and school and Alex's aide at school.  I am sure Mom can elaborate on this more on this topic.

     Well that is all for tonight, we will add another entry tomorrow.

Until tomorrow,

Alex's Dad

Hi Folks,

    This will be short one, it is late and we have to start back in the morning.   We had our test with Jeremy it went well, he saw no issues that needed to be corrected.

    After we finished at the mall, we went back to 4 Paws to do paperwork.  While Deanna did paperwork, I gave Honor a bath.  We spent of 45 minutes drying him.

    After paperwork Jeremy presented the diploma's for the dogs and us.  See the pictures.

That's it.

Alex's Dad

Good Evening from Ohio,

    Well let's start out by saying we slept later than usual this morning, could be because we are tired or because we stayed up late updating the site.  After breakfast we headed to 4 Paws.  It was very cold this morning, there was frost here ~35 deg F with a biting wind.  Needless to say we didn't let the kids go out and play in the morning, after all we didn't bring winter jackets.

    When we got there we did the usual and let Honor run in the fenced area, however this morning was a little different.  After Ziti (Alec's Golden Doddle) and Journey (Judi's Golden Doodle) got to the fenced in area the white monsters began to play, more like rough house.  Doesn't Mom always say that when there is rough play someone always gets hurt.

    They were running along happily playing then all of a sudden there was a 2 against one Doodle collison with Honor being in the middle.  He didn't stay on his feet and after the hard roll he took, he came up limping, not wanting to put any weight on his leg.  He still wanted to go but was too limited in his movement on three legs.  Alec's Dad (Bob) went into the facility to see what we should do, carry him in or let him walk it off.  Well it wasn't long before he was putting a little weight on it. still limping though.  That was it for Honor and the play area, he began walking a little better so we headed inside.

    Inside we met one of the staff who said that he probably has a slight sprain but will be OK, indicating Dogs have a high threshold for pain.  He clearly wasn't whimpering at all. 

    When Jeremy came in we told him what happened and he said that one of the vets would check him out tomorrow since he did observe a slight weight avoidance with that leg.  After going around the room, going over any issues people had the previous day/night.

    When it was our turn, Deanna said that at 3 AM, Alex had a seizure but Honor didn't want to be bothered getting up from sleeping, though he did wake up though no barking.  Jeremy said that the dog has to be motivated to do his work, which means we need to have the treats ready and be prepared to bring him to Alex so he can get closer to the seizure scent.  Jeremy also said that seizure dogs usually will only alert on the first seizure since after one, the seizure scent is in the air and they are NOT trained to bark all while they smell that scent.

    When we asked if we should have bagged Alex's shirt since it was fresh, he said yes (oops, we didn't know that at the time).  This prompted a couple more questions: 1) Do we still need to have fresh T-shirts new out of the bag, the answer to that is NO, the only reason they say that is to be able to discriminate between the seizure scent instead of the different detergents.  2)  Do we need to change his bed linens and ours if he has one in our bed, the answer to that was Yes, we are not looking forward to changing linens that often, but if it will help Honor with the alerting, then it is a sacrifice we will have to make.

    We continued in the morning session on obedience commands then broke for lunch with another trip to the mall planned for the afternoon.  You could hear everone in the room groan (not again), but this is the trainers only way of observing us away from the training facility and in real life situations.

    We got in the car and asked the kids if they wanted to go to the mall again.  What do you think their answer was?  A resounding "NO".  So Deanna and the kids dropped me off at the mall, while they went to get lunch at Mcdonalds or something.  She said it would do me good to have to interact with other people (usually she does all the talking when people come up and ask question about the dog)  While at the mall, I had Subway (eat fresh) as Alex says.  During lunch Honor was sitting under the table as we had been taught, this prompted another question, when they are doing a command well, we have been trained to reward them.  So my question was should they be rewarded during a meal (with their own treats of course, since they can have absolutely no table food ever) if they are doing a good job staying put.  Jeremy's answer was "I wouldn't", you are teaching them to expect treats during meals which is not a behavior that we should start.

    One of the things we were having difficulty with was Honor going up/down stairs too quickly, Jeremy had the answer again and made it look so easy, force Honor to stop on every step and sit so he becomes conditioned to go slow.  Sounds pretty obvious, but when we are the ones doing it the only thing we thought of was holding back on the leash.  After Jeremy showed me the technique and infromed us of another command "forward" then "stand" for each few steps to use him as a balance guide going up/down stairs the stairs were much easier to navigate.

    Once this was done, I was free to go for the day to go back to the hotel to practice other basic commands.  When I got back the I took the kids to the pool again ( no news here, this is what we do every day).  When we got back to room from the pool, we went to the breakfast area for a BBQ that the Hotel does every Tuesday.  After that, we went back to the hotel room to carve pumpkins, you see the Hotel is having a Halloween party tomorrow and one of the events was pumpkin carving, we people carve pumpkins and then the hotel staff judge the best pumpkin.  We will take pictures tomorrow and post them

    No new pictures or videos were added today, but we will add them tomorrow.

abeeda abeeda abeeda, That's all folks.

Alex's Dad.