Monday, March 10, 2014

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.





Wednesday, March 5, 2014

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.


Sunday, March 2, 2014

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....