Thursday, January 30, 2014

Captain's Log...Day....what day is it????

We have been so busy that the time seems to fly by and drag all at once. We are literally on the road heading to 4Paws by 9:30 every morning and do not get back to our hotel until close to 5. Yep, other than an hour lunch break it is all training, all day.

Last night was our first night having Oreo with us and she was just so dang easy. She even slept on the bed with Tess for almost the whole night. It was so cute! And Tessie woke up all smiles when she saw Oreo was there. Yay!

And tonight, we actually took Oreo out to the hotel's "restaurant" tonight for a trial outing and gave her the command UNDER to get her under the table. She reluctantly went and although she did break command once, I quickly corrected her and she stayed still under the table for over an hour. Even when other people and dogs stopped by our table. Good stuff.

We have been working on keeping the dogs in command with distractions. For example, telling them DOWN and they must lay down and not get up no matter the distractions around them without a FREE command from us. I'm going to post a video on the Travels with Tessie Toodles FB page so you can see Jeremy working with Oreo on the down with distractions command. It's pretty cool. Honest. ;)

 Oreo also did her first (that I could catch for sure) pre-alert to a seizure and it was just over 45 minutes BEFORE Tess had a small cluster (3) of tiny ones. So essentially Oreo let us know that we needed to be ready for some action. And she was right on the money! Plus, I have to say, after she physically stopped me from wheeling Tess  in her chair so that she could sniff Tess and alert, she proceeded to "lap" Tess and look at me like, "Um, excuse me crazy lady, your kid has something happening here, ya think maybe you should pay some attention to her?" Of course I gave Oreo tons of praise for her good work but the expression she had when she looked at me was too funny! I asked Jeremy if "lapping" the child after and alert was normal behavior and he said that Oreo was just very motherly and probably was just making sure Tess was okay. Good girl!

She has been either alerting or pre-alerting everyday! Next up we will work on the BARK as well as getting her to alert (with barking) to a Grand Mal seizure as it takes place, not simply as a pre-alert. Phew! Lots to do!

And God help us, we take Oreo to the mall tomorrow. Say a prayer for a good day without having to hear the words, "Clean up in aisle 10!"

And now for a little "awwwwwww" I give you Tess and Oreo...

And last but not least, here is Oreo in her OFFICIAL seizure dog alert vest.

Tuesday, January 28, 2014

Captain's Log...Day Six

Today we really got into giving our dogs commands and the difference between letting them know when they are "working" and when they are "free" to just be dogs. We are also learning a lot about how to foster the bond between Oreo and Tess and how to have Oreo want to be around Tess more than anyone else.

Basically it breaks down to always giving Oreo a lot of praise and treats whenever she goes over to Tess as well as "baiting" Tess's chair with treats so she'll associate Tess with things she loves. Today, without even given the command, Oreo went over and "lapped" Tess. This simply means she went over to Tess and rested her head on Tess's lap, well in this case, Tess's leg. It was beyond adorable and Miss Oreo earned herself much praise and many treats for that!

Oreo realizing that Tess has some treats for her.....

We also are learning that just because these are service dogs doesn't mean they are robots and are always perfect. That is why we are being trained on how to carry over everything they have learned and continue to reinforce and build on it once we are home. There is so much more to it than I ever thought but it is so interesting and really impressive how smart the dogs are. Also, these dogs are still puppies so they will need corrections from time to time.

Some of the dogs are really sensitive to corrections and really want to please. Oreo is one of the sensitive ones. I felt like the meanest person on earth today when I put her in the "down" position and she got up before I "freed" her and I had to correct that behavior with a gentle pull down on her leash while saying, "No.", then releasing tension on the leash and reinforcing the "down" command. Poor Oreo looked so ashamed of herself and I couldn't reward her with a treat until she had maintained the "down" for a bit.

We also worked on "heel" and a few other things. It was a long day but a good day and as far as the question you are all wondering goes, yes, Oreo alerted to two more seizures with Tess today. Smart girl!

Another dog alerted up to 45 minutes before his girl had a grand mal seizure.  I cannot explain what that is like as a parent to see and be able to trust. There simply are no words.

Lastly, I'll leave you with a fun picture of Oreo giving Tess "Five" and "shake'. Of course we had to stabilize Tess's hand but Oreo was patient with her girl and kept trying to make sure she made contact with Tess's hand before giving up. She really is a great dog!

Until tomorrow....
       Putting a treat in Tess's hand to get Oreo's attention to give High Five

                     the trick...High Five!

          Not sure if you can tell from the pic but Oreo is shaking Tess' hand rather than the high five

Monday, January 27, 2014

Captain's Log...Day Five

Okay, my bad, I skipped days three and four but in my defense, there really wasn't much to report.

Unless you count hours and hours and hours of driving in a total blizzard and seeing eighteen wheelers, cars, and trucks off the road, worthy of reporting. Or the fact that last night, while getting Tess ready for bed, the hubs spasmed his back and was in agonizing pain until late today. Not fun or easy trying maneuver a disabled child who is heavy, along with her wheelchair, which is also heavy, in and out of hotel rooms, vehicles, and training facilities all day long. And with a wife who has fibromyalgia so her back is wrecked all of the time, makes for some tricky footwork. But we soldiered on. We didn't come here just to let a few back spasms and fibromyalgia slow us down!

So today was THE BIG DAY!

Tess finally met her seizure alert dog Oreo and while it wasn't magical bonding at first site, Oreo was a total rockstar!

Tess fell asleep and slept most of the day which we expected because that is what she does in situations where she feels overwhelmed. Well, let me tell you,  a room full of excited kids, adults, and dogs is enough to make even the strongest of us want a little break. Tess did wake up here and there and we would have Oreo come over and get treats from her and Tess seemed to like that.

This morning, after meeting with Oreo for all of about an hour we noticed she got all wiggly and excited and randomly started licking Tessie's hand then digging her muzzle into Tessie's chest and proceeded to repeatedly lick at her mouth. We thought Oreo was giving "kisses".

We are so stupid.

The main trainer of 4Paws had been watching the whole thing and after Oreo calmly laid down, came over to talk with us. He told us that he thought Oreo had just alerted to a seizure based on her behavior. His point was, she hadn't been called over to Tess, Tess hadn't made any noise, and no commands had been given to Oreo to give Tess loves. Oreo approached her randomly and excitedly all on her own. That is what they are trained to do when scenting a seizure.

Holy awesome dog, Oreo!

After that, I noticed that Jeremy (the trainer) kept a very close eye on Oreo and Tess. And yes, my friends, our awesome Oreo alerted THREE MORE TIMES over the course of the day! It was even pointed out to the class while she was alerting so that the families who were also getting seizure dogs would know what signals to look for in their dogs. I'm telling you, it was unreal! And as soon as it was over, maybe ten to twenty seconds, Oreo would go back to doing whatever she had been doing before she smelled the seizure.

We love this dog! Granted, these are small seizures that we know Tess has many times throughout the day that we didn't need to help Tess with, but I've always wanted to know how many "little" seizures Tess has in a day but never could figure out because we would often miss them. Now, thanks to Oreo, we may just get some answers. And if the dog is this good at the "little" ones, can you imagine how good she'll be to alerting to the Grand Mal seizures?

We also went over the basic commands of "sit" and "down" and learned A LOT. These people know their stuff! Oreo was a champ at the obedience practice that we did with her. There is much more to learn but I am convinced that Tess got her perfect match in Oreo.

So this was day one. Can't wait to see what day two brings!

       Oreo getting her reward for alerting to Tessie's seizure

Friday, January 24, 2014

Captains Log...Day Two

Last night we hit our first major glitch of the trip when I discovered that Tess's pulse ox machine, you know, the one the tells us her heart rate and oxygen, was not working properly. Not exactly a comforting feeling when you have a kid who has needed oxygen at night more often than not over the past few months.

After tinkering with it for a bit (read: hitting it multiple times on it's side and possibly calling it a few colorful names not fit for print), it decided to let me win and started to do it's job. And thanks to Kim at Dr. Stephenson's office, a shiny new one should be waiting at our hotel in Xenia upon our arrival! Now say a prayer that our old one has enough life left in it to get us there before quitting for good.

But we are the Griswolds, excuse me, I mean, the Reidys, and we can roll with the punches.

And in that spirit we woke up this morning bright and early and raring to go!

Okay, so I rolled out at almost eight o'clock, just in time to give Tess her morning meds.  The princess HAD TO BE WOKEN UP at 9:15 so we could get her dressed and out the door. Yes, our little diva does love her sleep!

Meanwhile, the hubs braved the frigid temps and got Tess's car seat switched over from our van to the rented Suburban. THE BIG SUBURBAN. I want you to remember that. Suburbans are big, am I right? It was when he tried to get the wheelchair in the back of the Suburban that a warning flare went off in his brain. He heroically (stubbornly?) tried to ignore it and continued on with packing the dog supplies. Another warning flare shot off. This one was not to be ignored.

I knew when I heard the front door open and peeked around to look at his face that there was trouble afoot.

"We still have tons of stuff left to pack and we're already almost out of room."


I informed him that, even though I had not been the one out in the cold, struggling with trying to move a car seat, a wheelchair and other irksome items, that there was no way he could be right. I mean really, it's a Suburban for crying out loud! Tons of space! More than enough room! It had all fit in our van! Load her up, baby!

"It's. full. No. more. room." He spoke as if trying to explain to a small child. I shook my head and again informed him that he was wrong. "It's not possible that our van is bigger than that Suburban. How can that be accurate?", I skeptically questioned while giving my best 'Oh Please' expression.

You can imagine how that went over.

The hubs huffed out a big breath and gritted out, "You go out, and you figure out how to load it up. The wheelchair had to be shoved in on it's side. You need to start prioritizing what you absolutely cannot live without."

Hello! I need everything, hence the reason it is all packed up in front of you waiting to be put in the...wait for it...BIG SUBURBAN!

So we both went out and surveyed the situation. Well, I pretended to survey while really just stood around pointing aimlessly at things that needed to get from one vehicle into the other and generally feeling very confused and cold. I'm sure I was a great help. The hubs quickly figured out I was going to be of no use with this dilemma and did his best impression of Tim Gunn (you know, from Project Runway) and "Made it work!". Yes, he got everything in, albeit a tad snug. Snug as in, there is no room for a dog. Anywhere. Well, we'll just cross that bridge when we come to it. Tomorrow's another day and all that.

So I set up Garmin for us and Toy Story 2 for Tess and we were off like a herd of turtles!

The drive was fairly uneventful unless you count almost being side swiped by an eighteen wheeler (TWICE) eventful. Not much to look at although it was pretty as we came in to Pennsylvania. We are here in Wilkes-Barre, PA for the night, all tucked in to our hotel room nice and cozy.

Anther six hour drive is the plan for tomorrow to get us to Mansfield, Ohio which is only 2 hours from our final destination.

It's supposed to snow. Naturally.

Thursday, January 23, 2014

Captain's Log....Day One

Today was OFFICIALLY the start of Tess's Make a Wish trip. Now, I realize pretty much everyone who reads this blog already knows where she wished to go since you all basically live in my small town, but for those ten of you who I don't already know personally, can you guess where she wished to go?

Nope, she did not wish to go to the happiest place on earth (Disney World).

Nope, she did not wish to go frolicking with the dolphins in the Bahamas.

Nope, she did not wish to get leid in Hawaii (now get your minds out of the gutter).

Alas, my Tessie Toodles wished to go to beautiful, exotic, Xenia, Ohio. In January. Yeah.

Where the heck is Xenia, Ohio you ask? Good question. And I have no idea. Here's hoping Garmin and Mapquest really do know their stuff geographically speaking.

The big lure of Xenia is that that is where 4Paws for Ability is located and Tess's wish was for a service dog.

Today the wish began with a trip to Petco to pick out all the supplies Tess's new furry friend will need. Tessie picked out exactly one item, a pink bowl, before she totally shut down and refused to even look at anything else. Imagine if you will, her two parents trying desperately to peak her interest in dog toys and dog crates and dog leashes, as the Make a Wish representative and manager of Petco look on in expectation of smiles and maybe a few giggles. The hubs and I became almost manic in our "oohs and aahs" over every little thing, practically pleading with our stubborn girl to seem even the teensiest bit interested. No dice.

At one point, the manager and the MAW rep. asked for a photo. The hubs and I smiled like people verging on the brink of insanity as Tess refused to even lift up her head. In the end, I had to literally hold her head up with my hands for the photo. It looked like I was choking her and our eyes had a look sometimes seen in people who have missed some very necessary psychotropic drugs. Somehow I don't think that picture is going to make the Make a Wish calendar this year.

Everyone was very kind about Tessie's lack of enthusiasm and very generously accepted our excuses of, "She's been awake since 4:30." and, "We think she thought she was actually going to get her dog today so she is sulking that there is no dog." Both true but still, it felt very underwhelming that she was so disinterested in her wish.

Tomorrow we hop in our rented Family Truckster, err, I mean Suburban, and begin the drive to Xenia. I can't help but feel like Ellen Griswold in the movie, Vacation, when she and Clark make a crazy road trip to WallyWorld with their kids. I can only hope we don't run into Christie Brinkley in a red Corvette in our travels.

Until tomorrow....


Tuesday, January 7, 2014

Catching Up

A lot has been going on here at the Reidy House during the last several weeks. Some good, some fun, some frustrating and some scary. In other words...more of the usual.

Since Charlie's mom passed away in September of 2012, we've had to come up with a new Thanksgiving tradition. The first year it was just us and to be perfectly honest, it was awful. We really missed "Grandma Reidy" and our tradition of gathering at her house with most of Charlie's nine other brothers and sisters as well as their spouses and kids. It is all Blake, Ellie and Tess knew because we went there every year for Thanksgiving. And when the kids got old enough, after the big meal had been consumed, Heather and I would take our kids out to see the latest movie that was playing and then go back to our hotel to swim and hangout. I used to really grumble about having to go every year, especially after Tess was born because it felt like so much work to pack everything up for just a couple of days plus having to take the ferry and then drive for two hours in often really rotten weather. I wished we could just stay home and have Thanksgiving. Well, you know that old saying, "Be careful what you wish for" because when that finally happened I realized how much I missed the tradition. And Of course Charlie really missed getting together with his family and so did Blake and Ellie. Long story short, we vowed after that first "home" Thanksgiving that the next year's would be different.

Enter Joel and Robin and their two kids, Keegan and Katie. Add in Heather and Norman and their two kids, Joe and Jack and well, let's just say that this past Thanksgiving was a lot more fun than the previous year and we hope that maybe a new tradition has begun.

Then my best friend, Kellie, and I took our two girls, Ellie and Hannah to see P!nk at the TD Garden in  Boston. If you are a fan of P!nk but have never seen her in concert, I highly recommend you get yourself to one, tout suite! It was awesome! And it was such a nice getaway for a night. A break from my normal routine that was very much needed.

It was also around this time that Tess started in with her junky cough which usually signals a major illness is on the way. After many, many home visits by Dr. Awesome, aka Jen, and a few consults with her mainland pediatrician, it's safe to say that Tess was on some pretty heavy duty antibiotics most of the month of December.

This is also the time that she started really requiring oxygen on almost a nightly basis. Sometimes even to the point of us having to get up more than once to increase the flow that she was getting. It was starting to freak me out a bit. WHY was she requiring the oxygen and WHY was she never fully getting her lungs clear?

Then on December 19th Tess just sort of crashed. I had literally been up with her all night trying to help her manage her cough, which she was choking on which meant lots of suctioning as well as trying to keep her oxygen sats above 90. I knew when we had the oxygen concentrator up to 3 liters and she still wasn't maintaing a good O2 sat that we were in some real trouble. And bonus, it had stormed the day before and we had lost power for a bit and even when the power came back on, my phone and internet did not. So there we were, with a very sick Toots and no way to call anyone for help. Good times. Good times.

By five o'clock that morning I had her bags all packed and ready to get on the ferry. I drove over to my dad's house because my phone still wasn't working and called Jen and she met us at the boat and did a quick check and agreed that Tess needed to be off the island. We got to her pediatrician's office and after checking her out he deemed her well enough to take home.

I wanted to throat punch him.  (even though I really do love him)

EXCUSE ME?! Did you just say take her home?! As in back to the island?! After the night we just put in with her?! Surely you jest.

But no, he was not joking and Tess, being the little stinker that she can be, actually looked really good in his office so I couldn't argue too much without looking like a totally neurotic mother. I did question the fact that Tess is notorious for acting well in his presence and then crashing again when home but the hubs and I got reassurance that she probably wouldn't have another bad night like that. So off we went like a couple of idiots.

And of course, back home as the weekend wore on she got sicker, and sicker and sicker and I had to keep calling Jen and Jen had to keep coming to my house until finally, on Monday the 23rd, both Sheila and Jen assessed Tess and said she had to go to the hospital. Most likely with pneumonia.

I burst into tears. I love Christmas. LOVE it. I was supposed to be having around 35 people at my house the next night for our annual Christmas Eve party. And I just KNEW, once Tess got admitted, we would not be able to be home for Christmas. I'm not gonna lie. I was devastated. To their credit, Blake and Ellie handled it far better than me when they found out that we may be spending Christmas in the hospital.  I am not proud of the way I handled it but they were being such good sports about it I figured I should too, so I once again put on my big girl panties and dealt with it. Or at least tried to.

Once at the hospital, after the ER assessment, Tess was admitted into Special Care and we were told that is was very, very "unlikely" that we would be released the next day in order to get home for Christmas. I cried again like a little baby. Yup. What a wuss.

Tess was given some IV antibiotics and actually had a really good night. And the next day she looked and sounded so much better. And, has luck would have it, a different pediatrician was on call and even though the notes he was given from the pediatrician the day before clearly stated that Tess was to remain in the hospital for another couple of days minimum, I began to prepare for my defense of getting her out that day. Let's just say, I should have been a lawyer.

Did I talk my way into getting her released in time for Christmas? You bet! Was it smart of me to do that? No, not at all. Did I pay for that selfish little mistake later? You bet!

We got home around 6:00pm on Christmas Eve. The hubs stayed home with Tess while I raced to change my clothes and get to my family's party where our two other girls already were.

Christmas Day was fun although I did have one of the worst migraines I have had in ages all that day. But Tess seemed to be doing better. Jen was coming every day to check on her and even came over on Christmas Day to give Tess her shot of antibiotics. Above and beyond once again.

But by the 30th, Tess was back to having a junky cough (it had never really been gone but was becoming more intense) and was requiring oxygen at night again. Sheila came out and put in an awful night with Tess once again trying to get her lungs to clear. By morning we were back on the ferry heading to her pediatrician's office. When he came in the room and sat down and looked at me and said, "Mama Reidy, what's going on with my girlfriend?", I just started crying again. I told him I didn't know why she wasn't getting better, that I was exhausted from not getting much sleep due to the alarms and oxygen, etc, and that I was, "DONE!".  I even raked my hand across my throat when I said it in the universally recognized "cut" motion for emphasis. Very dramatic. And I wonder where Ellie gets her flair for acting.

Poor Dr. Stephenson. He just looked at me and said, "Let's just admit her." I'm willing to bet that he probably really thought it was me who should have been admitted. And he wouldn't have been wrong. ;)

Off to the hospital we went. Tess was once again admitted into Special Care for two nights where she proceeded to prove once and for all just how crazy her mother really is. She couldn't have been healthier. I was so mad! Not that I want Tess to be sick but because I really wanted them to see what we had been dealing with at home. No dice. That little stinker just refused show them. So we came back home on Jan 2nd and bingo, right back to junky cough and requiring oxygen. Although in Tess's defense, she did have a cough the whole time we were in the hospital.

Now we are waiting for appointments in Boston. Dr. Stephenson, along with her Complex Care pediatrician in Boston, both agree that there is SOMETHING going on with her lungs and we need to try to find out what. They have put her on an inhaled steroid in the hopes that will help, and there has been talk of putting her on an inhaled antibiotic that is the same one that kids with Cystic Fibrosis use. Gulp. That doesn't sound too good to me but hopefully doesn't mean what I fear it means. That her lungs are starting be damaged from all the pneumonias and infections and she is now reaching a point in her development that this will be a new normal. That she will always need extra help to breathe properly. That she will always have a junky cough from now on. I PRAY that that is not what is happening but instead, it is something that can be fixed once we find out what is causing the problems.

But for now, Blake is on a very cool trip to Dominica with some kids from her college and Ellie is in the last part of her final year of High School and has received her first acceptance letter to a college in NH along with a pretty sweet academic scholarship. She will wait to hear back from all of the colleges she has applied to before making any decisions but the process is exciting.

And the hubs and I (and Tessie) are gearing up to take her to Ohio to train with her dog along with the rest of the January class at 4Paws for Ability. We'll be away for a little bit and I am very anxious about having her so far away from the docs who know her best. I am trying so hard to not let the fear of the "what if's" steal away the happiness of Tess finally getting her service dog. I want to try to focus on the adventure of it rather than the potential problems that could very easily come up.

So. much. to. think. about.

And so much to be happy about. I just need to keep reminding myself of that when the worry tries to creep back in.  One of my favorite Bible verses helps me keep things in perspective when I get too overwhelmed with all of the "what if's" in my life:

Pretty reassuring, isn't it? :)