Saturday, April 19, 2014

Oreo...she's quite a cookie

I figured it was time for a little Oreo update. First, the bad news.

We are learning that Miss Oreo thinks the house and yard are hers to protect and that she will growl when she sees anyone or anything outside, maybe even let out a bark, and that she will growl almost every time the front door opens if she cannot immediately see who it is. This is not an acceptable behavior because she should never growl, and her barking should be reserved for alerting to a seizure only.

She also is trying, much like a toddler, to test and push her boundaries here. And I must confess, we were letting her get away with way more than any of our other girls ever did! She was not always staying in command and would basically do what she wanted when she wanted. And just like what happens to every other parent that spoils their child, she was getting a wee bit out of control and we were constantly making excuses for her because she is just such a good dog in comparison to any other dog her age. Also, her being naughty only ever happens at home. When we are out in public and she is in full on "work" mode, she is just perfect.

case in point...staying in the perfect DOWN command while at Children's Hospital

And let's face it, when it's your dog that sniffs out an ear infection in your child who cannot tell you their ear hurts so you wouldn't have realized it yourself until other symptoms began to appear, you tend to be able to overlook the little imperfections in behavior.

However, it get to the point where I knew we were not doing the right thing by Oreo, the people who took so much time to train her, or to Tess, to let her continue with her "bad" behaviors. So I put in a call to the lead trainer at 4Paws and told him everything that was going on.

I got a much needed training refresher and pep talk and am now implementing all of the suggestions that Jeremy told me to try. There is still room for improvement with Oreo's behavior, but she is definitely responding positively to me being more firm with her and not making excuses for her when she is being naughty.

And now for the good news.

We just love her to pieces. She is an amazing dog and makes Tessie laugh and giggle more often than we have heard in such a long time. She is pre-alerting to Tess's seizures, and again, alerting to the ear infection really just blew me away! She is very loyal to Tess and is quite the mother hen with her.

The first time that Oreo saw Tess get PT, she did not like it one bit. She got between Tess and the PT person and then, after a bit, Oreo literally laid down on the floor and put her paws over Tess so they couldn't move her anymore, as if to say, "Leave my girl alone!" We were cracking up.

Oreo laid right on top off Tess during a PT session. She was done letting her girl be moved all around.

She also does not like it when anyone goes to lift Tess, especially if she is not super familiar with who is doing the lifting. She stays right there until Tess is safely put back down. Oreo gets very upset if we close Tess's bedroom doors (like to change her) and she cannot get in. She will scratch at the door and whimper until she is let in and can see Tess. If we bring Tess into the bathroom, Oreo follows and will lay down and wait until we bring Tess out.

One morning Oreo was laying on the floor in the kitchen while Ellie ate her breakfast and Tess was in her bedroom still in bed. Tess likes to wave her arms around sometimes when she is lying down and Oreo must have seen them out of the corner of her eye because she scrambled to her feet and ran in to check on Tess (it probably looked like Tess could have been seizing to Oreo), and when she saw that Tess was fine, she came back out into the kitchen. It's really amazing just how aware of Tess that Oreo is all of the time.

look at Tessie smiling at her dog!

and look at the two of them looking at each other during the cute!

We've only had Oreo for two and a half months and I already couldn't imagine our home without her. And just like all our other girls, she basically has the hubs wrapped around her little...well...paw.

To be honest, she has all of us wrapped around her little paw.

our newest princess

Wednesday, April 9, 2014

Keeping my mouth shut

This was what I posted on my FB wall two days ago:

"This literally just happened to me while waiting for the Music Box Theater to open their doors for Pippin in NYC the other night. This total stranger, an older man, starts telling "epileptic jokes" to me, Ellie and our two friends. The onesthat start with, "What do you call a salad tossed by an epileptic.... along with a few other equally distasteful ones involving seizures. Now, anyone who knows me knows that I can have a pretty off color sense of humor but this was just crossing the line. I came very close to telling him a joke of my own:
"What do you call an old man who tells epilepsy jokes? A corpse", (because I am going to kill you in about two seconds).
Lucky for him I chose to take the high road and just disengaged because I was ready to tear him to shreds!"

I got several comments about how surprised they were I didn't tell this guy where to go and how to get there; especially from my friends and family who know me so well and were shocked that I kept my mouth shut.

The reason I chose to not confront this guy is a little complicated. First of all, we were in a VERY crowded theater on Broadway on a Saturday night and I was with my middle daughter, Ellie, her best friend, Hannah, and my best friend, Kellie (who also just happens to be Hannah's mom).  Second, we were there in the first place because this was sort of a big trip for Ellie. We had just come from "Admitted Students Day" at the college of her choice and were now in the City for the night to take in a Broadway Show. Pretty exciting stuff for a kid from a small island who will soon be heading off to NYC to pursue her love of theater. In other words this was Ellie's time and I didn't want to ruin it by getting into a heated discussion with a total stranger right before the doors opened to the show and ruin everyone's evening.

Now make no mistake about it, if Tess had been there and this guy had been telling those "jokes", I would have left him with a very clear understanding of my feelings on the subject and Tess would know that, once again like always, mama had her back. However, there are some instances where keeping quiet and letting something go is the best way to handle it. Tess wasn't there but Ellie and our friends were, and I didn't want one man's ignorance to throw a shadow over the fun weekend that we had been experiencing. That's how I felt that night and I how I still feel when I look back on it. It showed Ellie that she is important as well and that I chose to put her evening's happiness ahead of my own need to want to tear this man apart. I know she would have totally supported me and understood if I had given this man a piece of my mind, and so would our friends, but I think everyone was happier going into that show with no angry words left hanging in the air.

Now I need to backtrack a bit. Earlier that day while riding on the Staten Island Ferry on our way back into the city, I saw a man with a little boy, probably ten or eleven years old. This boy was having a complete meltdown. Pulling on his dad, hitting him, yelling at him, and even at one point, nearly throwing his dad down the stairs because he was trying so hard to get away from him. I noticed the other passenger's stares at this duo. Some wore looks of obvious disgust that the dad wasn't making his son "behave", others were curious and still others, like me, probably recognized what was really happening.

The little boy had special needs.

Many of the behaviors the little boy was displaying made me think that possibly he had some form of Autism. Flapping hands, refusal to make eye contact with anyone; even his dad. Walking on tip-toes, and the constant thrashing of his body as if trying not only to get away from his dad, but even himself. As for the dad, he would calmly try to redirect his son and never once yelled or got too physical.

I was unsure of what to do. I knew I had Tess's Ipad with me and gave a momentary consideration to offering it to the dad for his son to play with. Then I wondered if being approached by a total stranger would be too overwhelming for the boy and escalate what was happening.

As I was debating with myself over whether or not to ask if I could help in any way, another woman started telling the boy to, "Stop being mean to your daddy. Stop being a bad boy. Be a good boy." My heart broke for this dad who was just trying to get thru the ride and was now being passive-aggressively told that he should be disciplining his child by a stranger and that since he clearly wasn't going to do it, then she would.


Immediately after that the man redirected his son to a different area of the boat. He never got angry with the woman who had so very clearly misjudged the situation and lectured his son. He simply chose to keep his mouth shut and move on.

Maybe that is what inspired me to keep my mouth shut later that night? Maybe not. But I do know this, I don't regret keeping quiet with the man at the theater, but I sure do regret not saying something encouraging, or even just kind, to the struggling dad on the Staten Island Ferry.

I know there are many days when I feel very grateful when someone tells me that I'm a good mom. This guy was a good dad. I should have told him so.

Thursday, March 13, 2014

Tough Decisions

At the beginning of January, after a very long and sickly month of December,  I made the very tough decision to pull Tess out of school. Most likely permanently.


After fighting so hard to finally get the school on board with getting her the things she needed and having an IEP in place that I was so happy with, I am throwing in the towel. And no, not because the school has done anything wrong or has even put up a stink over anything this past year. Actually, the opposite is true. The school has been more than fair to Tess this year and for the first time since she started going to school almost 5 years ago, the school was doing their part to ensure she got the education and services she deserved.

No, I am pulling her out for two very simple reasons:

She HATES going to school.

I am not willing to risk the daily exposure to so many germs when her health is so fragile.

A cold, stomach bug, or the flu, that would most likely make your child miserable for a few days to a week, would put Tess in the hospital in Special Care. The flu could very easily kill her. I just can't rationalize it any longer.

With Tess, we often discuss "benefit vs risk" when it comes to doing anything. Long story short, the benefits of her going to school no longer outweigh the risks. Especially given how very much Tess hates going.

I had to have a very hard and real conversation with, well, myself, about whether or not I could accept it if Tess did catch something from being in school and it ultimately was the one thing she could just no longer fight and we lost her.

Turns out, I couldn't accept it. Not at all.

We don't have a time limit when it comes to Tess's life expectancy. What we do know is that every year, she tends to get sicker. She spends more time in hospitals. We know that her lungs are damaged and that she requires oxygen at night just to sleep on a fairly regular basis now. We know that she has seizures and that they are life threatening. We know that when a child is under stress, like for example being in an environment that they hate, such as school, that their immune system is weaker and their seizure threshold is lower. We know that putting Tess in an environment where germs are a constant presence could literally be life threatening for her. We hope and pray she lives for another forty years but the reality is, she is not getting stronger as she gets older; she has been getting weaker.

And ultimately, Tess deserves to be happy. I have come to the place of acceptance where I will decide if the quality of her life is worth risking the quantity. In other words, if she absolutely loves something then I would try to suck up my fears and let her do that thing, trusting that the quality of her life was enriched by something she loved even if it affected the quantity (number of years) of her life. School does not enrich her life simply because she does not enjoy being there. She is happiest when she is home and surrounded by her things,  and her family and now, her dog.

When you think about what you most want for your child, you would probably answer that you want them to be happy and healthy and to feel loved.

Me too. And if and when the time comes that Tess doesn't recover from that pneumonia or that seizure, I need to know in my heart that she knew I fought everyday to make sure she was happy, healthy and loved. That I always put her needs in front of my fears. That I listened to her and what she was telling me she wanted in her life.

Well, for a while now she has been telling me that she doesn't like school and wants to stay home.

Okay kid, you got it.

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 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. 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....

Saturday, February 8, 2014

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


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 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