Spine, Lungs and Poop, Oh My!

So last week was Tess's appointments with Orthopedics and the Aerodigestive Clinic at Boston Children's Hospital. It was also our first real trip with Oreo.

Overall things went pretty well. Oreo was a dream. She had a couple of days of some pretty long periods of just having to lay down and wait and she did it like a champ. Even when kids came over to play with her, or crawl on her as the case may be. At one point, a little girl had accidentally stepped on Oreo's tail and Oreo never even flinched. A lady in the waiting room, who had been watching remarked on it and I went on to say that, yes, Oreo was a good girl, especially given that she had just turned a year old two weeks ago. The lady then removed her glasses in shock, looked over at us and said, "Now that is a GOOD DOG! I thought she was like a week away from retirement based on how well behaved she is!", which of course was very nice to hear.

Oreo chillin' in the waiting room. See that shadow to the left? That's a little girl on her tail. :)

Next we moved into the little exam rooms to wait for the Pulmonary and GI doctors who were part of the Aerodigestive Clinic. The rooms are tiny so we had Oreo go in first and put her in a DOWN. Then we had Tess's wheelchair right in front of her. The Pulmonologist saw Oreo right away and remarked how cool it was for Tess to have her. We then proceeded to discuss all of the issues Tess has been having with her lungs and not once during that time did I have to speak to Oreo.  After she left the GI doctor came in and we all talked for about a half an hour. When it was time to leave, Charlie got the wheelchair and I grabbed Oreo's leash and said, "HEEL". The doctor did a double take and told us he had no idea that a dog had been in the room the whole time. That is how good Oreo can be. Of course I later remarked to the hubby that the doctor probably thought it was us that smelled like dog the whole time he was talking to us up until he finally realized an actual dog was in the room.

The hospital had a place where I could take Oreo out to go to the bathroom but the hotel, oh the hotel, nary a speck of grass or dirt to be found! What was a girl to do?! I ended up taking Oreo out to the sidewalk and tried desperately to coax her into peeing in the teeny, tiny patch of mulch that circled around the trees on the sidewalk. And considering that everyone who saw her stared at us with a look of "awwww" when they saw the service dog vest, I knew whatever she did we were going to have an audience for. I was completely stressed out. Oreo tried, God love her, but she didn't quite hit that mulch and suffice it to say, there was a puddle left on the sidewalk that I couldn't get away from fast enough.

By the next morning I had come up with a new plan. I would sneak her into the hotel's parking garage to do her business in an empty parking space. It was a good plan except for when anyone would enter the garage. I would dart out of that empty space and pretend to be leisurely walking the dog from "my" car. When the coast would clear, we would start all over again. I felt like a criminal! Like I was trying to score some crack or something. My heart would leap in my chest whenever I heard voices or a car's engine coming my way and I must admit to even ducking down between vehicles at one point in order to hide while screeching at Oreo, "DOWN!".  The dog finally peed and I raced out of there like my ass was on fire! But she still hadn't pooped and there was no way I was going to take her into the hospital later that day with unattended business waiting to happen at any minute.

Cut to another parking garage, this time Children Hospital's, about four hours later and about one hour until it was time for the appointment. In other words, GO TIME. Literally and figuratively. I grabbed Oreo and snuck over to yet another empty parking space and all but begged her to GO POTTY! Bless her little doggy heart, she did. Sweet relief for both of us.

At the Ortho appointment I had to finally fess up to Dr. M that despite the fact that he was looking at an xray of Tess in her scoli brace taken not an hour earlier, I was not putting it on her at home. Ever. I then appealed to him as a dad, not a doctor. I spoke of quality of life versus quantity and of how miserable Tess was in that brace and that, ultimately, I couldn't, and wouldn't, force her to live like that. I told him she had enough battles to fight in her life and this, in my opinion, was not one worth fighting for and that if it was his baby, would he make him wear it given all the reasons (there were more than I've written here) Tess hated it? He said to throw the brace out. He did give me other instructions on PT therapies and stretches we would need to do if she was not going to wear it but that no, if she was that miserable in it than it just wasn't worth it. Hallelujah!

The next day was the Aerodigestive Clinic which would tell us all about her lungs. I can't say I was too surprised (although still bummed) when the doctor confirmed that yes, Tess's lungs had become damaged from all of the pneumonias and pneumonitis that she has had. It explained why her oxygen requirement has increased so much the past year or so. She went on to say that in "kids like Tess", this is also the age that their lungs start to show the wear and tear they have taken. She explained that while she wouldn't be able to get Tess's lungs back to what they were like even a few year's ago, she could hopefully give us a new daily regimen that would help them a lot and at least get them working better than they have been lately. Next she asked us if we had plenty of nursing help. I wondered why she was asking and she told us that this new regimen was a lot of work and many families admit they can't do it all because it is so time consuming and pretty intense. We insisted that with or without nurses, give us everything and anything that would help Tess breather better and we would do it. Gratefully.

I am here to tell you, she wasn't lying when she said it was a lot of work. Twice a day we have to give Tess 2 breathing treatments via her nebulizer which take about 25-30 minutes or more, then she has to have her chest therapy vest for 20 minutes, then her inhaler. Then a separate inhaled medicine at some other point in the day. Everyday. And this is when she is well. It will get ramped up when she gets sick.  And this does not include all the seizure meds that she gets three times a day. So yes, it's pretty intense but I can only imagine how much harder it is on Tess and she doesn't even cry. She just takes it like so many other things in her life. And her ability to just keep going helps keep it all in perspective for me as well. Because if she can have it done to her, than I can at least make sure it gets done, even when it feels like I have just finished and it is time to start all over again and all I am doing is giving medicine. And let's face it, though it does take up a bulk of the day when totaled, it certainly isn't ALL day so I can just get over it already! ;)

I recently made the remark to someone that Tess is truly a child of modern medicine. It also helps that she has one of the most positive spirits I've ever met. She's a fighter....in the best possible way.

The R-Word

Today is National Spread the Word to End the Word day. A campaign that Special Olympics started to try to end the misuse of the word, "retarded".

Let me start off by saying that I am guilty of using this word in a derogatory manner in the past. Very guilty. Am I proud of that? Certainly not, however, I tell you this so you know that when I ask you to please stop using the "R-Word", you can rest assured it is not coming from a place of judgement but of awareness of how much it can hurt to hear it be thrown about in casual conversations.

I am here to tell  you it hurts.  A lot. And I got the lesson taught to me the hard way. By giving birth to a gorgeous baby girl who would grow up to see the words "Mentally Retarded" written into ALL of her medical records.

There really is no way to explain what hearing someone who says that word makes me feel. But suffice it to say, it is a pain that shoots straight to the heart and lodges there. Because when you, I, or anyone uses that word as an adjective in any way, it is a direct insult to Tess.

Most often the defense used by people who say it is to not be so sensitive because you aren't saying it specifically to, or about,  anyone with an intellectual disability so why should I be offended? And I know that no, of course you're not talking specifically about any one person when you use that word.

Except you are.

You're talking about my daughter. My baby who has fought more battles in her short life than you will, hopefully, ever have to fight in yours. You're talking about Tess. And in the cruelest possible way because she cannot speak up to defend herself against your attack.

This isn't about people being too sensitive. This isn't a freedom of speech issue. This is about common decency mixed with, oftentimes, ignorance of how cruel that word really is to so many of us who have loved ones with intellectual disability.

 The reality is, Tess just lives her life giving out unconditional love and acceptance and asking nothing more than that in return other than you to respect that she deserves better than to see her disability used as the butt of your joke or rude comment. Seems like a pretty fair deal to me.

So I am asking you, the next time you or a friend do something stupid or silly and are "just joking" when you say something along the lines of, "You're so retarded" or "Stop being such a retard" or anything similar to that, I want you to ask yourself, would you say, "You're so Tess." or, "Stop being such a Tess." to describe whatever it is you're talking about?

Because ultimately, it's the same thing and she deserves better than that. Everyone does.

Time flies...

It is hard to believe that a month has already gone by since Oreo came into our lives.  A month ago today we were in training and anxiously hoping to pass the public access test in order to bring Oreo home with us. A month ago were meeting new people, some who we would become very friendly with even after going home (shout out to Aleasha, Charles, Landon & SD Jendayi) as well as some who would stay in our hearts forever like Delaney, a gorgeous little girl who was so sweet and kind. It is amazing how close you can feel to total strangers when thrown together for a common cause. And it's hard to believe it's been a whole month (almost) since I saw The Christmas Story House and got to cross an item off of my bucket list. Time really does fly.

Oreo has settled in really well. She is such a good girl but at only a year old (her 1st birthday was on February 19th), she still has plenty of puppy left in her. The trainers at 4Paws would laugh at people's expectations of what they thought service dogs were like. Always well behaved and perfect. And luckily, for the most part, that is true. However, as they told us, they are still dogs, puppies no less, and will make mistakes occasionally as well as test the limits with us once they got used to not being "in school" anymore. Oreo has certainly done that but being such a sweet and good girl, especially to Tess, it's hard to get mad with her. We do correct her but are very quick to forgive and forget. Plus, in all honesty, her "mistakes" are quite minimal, especially when compared to any other dog her age.

The Birthday Princess

The best part is watching Tess watch Oreo. She just gets such a kick out of her. It's also funny that whenever Tess is getting attention from anyone, Oreo will run right over and try to "lap" or jump up on the bed and lay on Tess and love on her. I'm not sure if she just doesn't want to be left out of the attention, wants to make sure everyone knows that Tess is hers, or is hoping for a treat. Probably the latter, but we crack up over it.

Wait for me! I love Tess too! See? I love her so much I am crushing her with my love!

We are (or I am, since I am the one home with her) pretty faithful to practicing her obedience commands everyday as well as practicing seizure work. Oreo is VERY treat motivated. Without a treat at the ready she will do the basic obedience commands very quickly, but then act like she doesn't understand what you want her to do with the more involved commands, like lapping, retrieving and bringing Tess her toys that have been dropped, etc, because she wants a treat for doing those. And just when I start to wonder if she has forgotten how to do some of those commands, I'll go get her treat bag and voila! Oreo gets right down to business. She's not confused at all. She's just a girl who knows what she wants. Sounds like another little girl I know. See? She and Tess are a perfect pair!

Oreo has been taught to "hold" Tess's hand with the command "get Tessie"

                           practicing seizure alert work with Oreo

Tomorrow we go to Boston for two days of appointments. Tess is going to be seen in the Aerodigestive Clinic as well as the CP Clinic (Ortho). We'll be talking about lungs and spine issues. I have been waiting to get her into this clinic for a while because her lungs seem quite a bit less healthy since that horrible post-op pneumonia she got last may and I must admit, I am nervous about what they could find with them. Since she's had pneumonia after pneumonia this fall and winter, her pediatrician has put her on a steroid inhaler which has seemed to help to a degree. There's also been talk of putting her on other medications for her lungs as well but her pediatrician really wants Boston's input on that. At this point I'm just praying for good news. Or at least news that we can easily deal with. I'm not going to get too worked up over it yet though. Like Nana Belle always used to say, "What will be, will be".

And thankfully, I am finally starting to learn that that is a pretty good attitude to have a lot of the time.

Nana Belle...horrible pic quality but still....

Captain's Log...Day...Holy crap I went to The "A Christmas Story" House!

Yesterday I was a bundle of nerves as I prepared to take the public access test with Oreo. Our test was scheduled for 11:30. We arrived at the mall about fifteen minutes early just to make sure Oreo was calm and I felt confident handling her. I needn't have worried. We passed without any problems and graduated yesterday afternoon.

Team Tess and Oreo is official!

                                           

But the REAL news, the mega, awesome, incredible news is that I made a pilgrimage to my Holy Land. My Mecca. One of the top things on my bucket list (hey, don't judge me).

I went to see, in person, the place where THE BEST, HANDS DOWN, Christmas movie was made. I went to the....dun dun dunnnn...

A Christmas Story House!!

Squeeeeee! *jumps up and down while screaming like a lunatic*

You guys, it was everything I had hoped it would be. Complete with, wait for it, a GIFT SHOP!

Double squeee!!

After I spent an undisclosed amount of money at the gift shop, and had paid homage at the A Christmas Story museum, I bought my ticket, gripped it tightly in my shaking with excitement hands, and stepped up on to hallow ground as I made my way up the front steps to wait in line for the next tour. My heart was racing. I felt feverish with Christmas glee.

I was about to enter Ralphie's house. It was then that I heard it. Almost as if God himself wanted me to have the full A Christmas Story experience. The sounds of dogs barking.

BUMPESSES!! I shook my fist in the air and cried out.

I. was. in. Heaven.

Then, the door swung open and we were welcomed inside. There are no words that can possibly do justice to my emotions so I am going to let my photos tell the rest of the story. Suffice it to say, I have been on a natural high all afternoon, The high that only those of us special enough to understand the full glory of that wondrous movie, A Christmas Story, will ever get to experience. And it was awesome.

And no, I didn't shoot my eye out.

Add caption

Lifebuoy...Blech!

Ralphie and Randy's bedroom

Look magazine like the one Ralphie plants the Red Ryder Ad in.

He learned it from YOUR SON!

It's an Official  Red Ryder BB gun with carbine action and a compass in the stock!

love it!

It's a blue ball!

The Old Mans' chair

Oh yes I did re-enact the famous, "show mommy how the piggies eat" scene! 

The turkey!

It's a MAJOR AWARD!

It's GLORIOUS! It reminds me of the fourth of July!

Tree complete with bent over star topper

living roo 

Frageelay, must be italian!

The alleyway where Ralphie dreams of shooting the bad guys with his trusty Red Ryder

The back yard where he almost shot his eye out

Captain's Log...day...I couldn't tell you

Everything has been going pretty well here in Xenia although I must admit it feels like we are in doggy/owner bootcamp. Up at the crack of dawn to get Tess ready, as well as ourselves, get in the car, drive to 4Paws and train, train, train for 6 hours. We get back to the hotel sometime around 4:30ish and are completely exhausted yet there is more training to do. So we take a little break and then start randomly giving out commands to Oreo.

Here's the thing with Oreo. "She's a sensitive girl". We have heard that over and over again while at 4Paws. That is the biggest reason she was matched with Tess. They needed a sweet, mild tempered dog so that Tess wouldn't get hurt and that Oreo really wouldn't care that Tess couldn't play rough games with her because she wouldn't like them anyway. Of course, being so sensitive means she also has a few, well, we'll just call them quirks. She gets scared easily but then gets over it as soon as we make sure to show her that there is nothing to be afraid of. Her biggest fear is the BIG SUBURBAN. She absolutely hates getting in. Once inside the car she is fine, but getting her to actually jump in is the issue. She gets herself upset enough over it that she will sometimes vomit. We can't be mad with her because she just can't help it, and she looks so ashamed of herself that we just end up feeling even more sorry for her.

At first, we thought it was motion sickness. I mean, wouldn't that just be the height of irony? The people who drove the farthest and regularly have to take a ferry, would get the dog who gets motion sick? But after discussing several times with Jeremy, and having him come out to watch her reaction to getting in the car, he really feels like it is all anxiety and that she is getting so anxious she makes herself sick. We are figuring out tricks to help her and are hopeful that once we get our own minivan back, she'll feel better about getting into a car. Time will tell.

We have been learning some fun commands as well as the obedience/work ones. Like today we learned to have them "play dead" by pretending to aim a gun at their head and saying, "Bang". It was really funny. And they have other expressions they use for the same trick for those people that are uncomfortable with the whole pretending to shoot a gun thing. We did the gun but also tried the others just for fun.

practicing DOWN with distractions

giving praise and reward for staying down even with people coming up to her

The hubs giving a reward for a good SIT

Oreo is also learning to retrieve things that Tess has dropped and bring them back and place them on her lap. It's a little tricky, but the more we do it with Oreo, the better and more accurate she is getting. Eventually we can teach her to retrieve the phone or the bag that has Tess's emergency seizure meds it

if we want to so that we don't have to leave Tess's side to get them while she is seizing. 

And while all of this is really incredible, the thing that the hubs and I keep remarking on, and are most grateful for, is to watch Tess with Oreo. She just lights up when she sees her. And this is the most we have seen her smile and heard her giggle in such a long, long time that we both agreed that even if Oreo couldn't do half the things she can, she was well worth getting for Tess.

This morning was the first morning that we woke up to find Oreo on Tess's bed without us prompting her to get up there and stay with Tessie. It was beyond heartwarming to see.

We made a wish for Tess in the hopes that it would be something she really loved, and it is coming true.

How blessed are we?!

Captain's Log...no idea what day

Well, things are a little stressful today. Tess has caught an upper respiratory infection and we are praying it doesn't lead to an emergency trip to one of the local hospitals. Dr. Stephenson sent us with antibiotics for just such an emergency, but as we all know, often times they are not strong enough to fight whatever virus Tess may have. At least we've got a chance though. We are well equipped with oxygen, suction and meds so we are in a wait and see pattern right now. It's up to Tess at this point to get better. I kept her with me at the hotel today to get some good rest while Charlie went to train with Oreo. I hate missing a day of training because you miss SO MUCH but Charlie can catch me up on it.

This morning, before leaving, both Charlie and I noticed that Oreo was acting kind of odd around Tess. Not "scenting" a seizure because we already know what that looks like, but more of a worried pace. She would wander from side to side of Tess's bed and then just lay her head down on it and look at Tess and sigh. Honestly, we think she knew that Tess was sick and she didn't like it. It was pretty sweet to watch. She is such a little "mother hen".

Yesterday was our first real outing with Oreo and we went to the mall. This mall is HUGE. Oreo did really well but we do need to work on her heel just a little and her excitement when she sees kids. Of course most of the kids would yell out, "oohhh doggy!" and want to pet her so I would tell them they could pet her just as soon as I put her in the DOWN command. Oreo did really well once in the DOWN and wouldn't try to get up or move when the kids were petting her. She did perform some tricks for them and two little girls told me, "You are very lucky to have such a good doggy! She's the best dog I've ever met!" Too funny.

Oreo is a bit of a wimp though. She gets freaked out by the elevator dings and hesitates to step inside them but we are working on that. She was awesome when I put her in the SIT command when I went to pay for something I bought, and she was equally great at rocking the UNDER command while Charlie and I ate lunch in the food court and staying under the table. I even tried to trick her with a distraction by throwing a piece of my chicken right down on the floor about 6 inches from her nose and she never once tried to get it. I know, mean mommy! But in my defense, we are told to do things like that!

We also got to see first hand, her open a handicapped door for us. We simply showed her the button and said, "HIT IT", and bam, she either made it work with her nose, or, if that wasn't enough pressure to open it, she would jump up on her hind legs and hit it with her front paw over and over until it opened. She would then stay there until she saw that the door was opening and then she would return to HEEL. Really cool stuff.

Anyway, as I said, I'm bummed I missed today's training, but what can you do? I am trying to not be super worried about Tess but the reality is, Tess doesn't usually recover from these things without hospitalization and IV antibiotics so I'm really quite stressed. Ugh.

Both Charlie and I were feeling somewhat sorry for ourselves this morning after a rough night with Tess and needing to get out the oxygen and realizing that she really was getting sick, and remarked that "Nothing can ever just be easy."  And I have to confess, sometimes it really does feel that way, but then I found this quote and decided to just focus on how grateful we are to even have this opportunity. I'm still scared and worried (and overwhelmed at the thought of trying to figure out how to manage the training and the dog if Tess has to go into the hospital), but not feeling quite as down as I was this morning. So here's a good quote to keep in your back pocket for tough days:

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.” ― Theodore Roosevelt 

You said it, Teddy.

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.