Tuesday, January 27, 2015

It's been a year...

How can it already have been a year since we made our unforgettable trek to Xenia, Ohio to give Tess her Make a Wish for a service dog?

I have sat here today, listening to the "epic" blizzard, Juno, rage outside and remembering every bit of that trip and those twelve days we spent in training at 4Paws for Ability.

I remember the exact moment Oreo was brought by her main 4Paws trainer, Shelby, over to be introduced to Tess and the excitement and yes, even anxiety at having to learn about and take care of such a special dog.


just look at Tess's smile...you can barely see Oreo over on the left but Tess was so happy



Oreo on her first alert to Tess right out of the gate


I have been "talking" on Facebook today with our other classmates who, I believe, are basically feeling all the same emotions that I am. The words we are all saying the most often are, "Grateful" and "Blessed".

It is hard to explain the connection that I felt, and still feel to a group of people I have known, in person at least, for only twelve days. Suffice it to say, they all "got" it. Got the fear, the sleepless nights, the constant worry, and the feeling of helplessness that comes with having a child with a disability. It didn't matter what the disability was, whether it be epilepsy in an otherwise typically developing child, or Autism, or Down Syndrome, or like Tess, a whole host of multiple and severe disabilities. They all just understood. There wasn't pity. There wasn't judgment. It was more of a feeling of support, encouragement and a whole lot of hope. A "we're all in this together" mentality that I have never felt before or since. And I have to admit, I miss that feeling. I miss them.

I often wonder if 4Paws really can fully grasp the impact they make in people's lives with the work they are doing with their dogs. I cannot imagine our house without Oreo in it. I have come to depend on her as a second set of eyes on Tess. And I know that she often knows Tess may be getting ready to have a seizure or getting sick hours before I can see the warning signs. This is invaluable help to have, especially when you have a kiddo like Tess who can go from a cold to pneumonia in a matter of hours so every minute quite literally counts. Oreo helps me to get an early jump on big trouble. Can you imagine the sense of relief and comfort that provides?

For example, just the other night, Tess's oxygen alarm was going off repeatedly because the sensor wasn't working properly. I finally told Charlie (because we had been taking turns getting up with her trying to fix it and it was his turn again) to just turn off the machine because Oreo was with her and would let us know if Tess needed our help. I have never turned off her oxygen monitor. Ever. But Oreo was there and I didn't even worry about it. Just went right back to sleep confidant in the knowledge that Oreo would watch over Tess.

I am still amazed by the level of trust I have in her instincts where Tess is concerned.

But Oreo has also alerted on other people and been right on the money. Poor Ellie got alerted on big time one night over Christmas break to the point where she only half jokingly asked me if she was going to die because Oreo just kept pawing at her and whimpering and wouldn't stop no matter where Ellie went. Cut to five hours later and Ellie was very ill with what we think was food poisoning. Oreo knew.

And my cousin, who has seizures, was here the other day and Oreo alerted on her. When I questioned whether or not she had taken her meds that morning, she looked over at me sort of shocked and replied, "No, I kind of forgot." Needless to say she jumped up and took them.

Oreo can be a naughty little girl at home sometimes but boy, she sure does make up for it when it really counts.

So, as hard as it is to believe, it's been a year since we met our 4Paws "Family" and our adventures with Oreo began. So much has happened and even during the bad times, Oreo has made our lives better.


one of the absolute worst days ever but Oreo wouldn't leave her girl's side


Oreo has been the best Wish because all of our dreams and hopes for Tess that went into that wish have come true.

Grateful and Blessed.

Pretty awesome words to sum up a year, wouldn't you say? :)

BFF's









Thursday, January 8, 2015

You just can't make this stuff up....

Yesterday our post lady brought in a registered letter that needed a signature because it was OFFICIAL. Naturally I was curious because, let's face it, I don't even get out of the house on a daily basis much less get into enough trouble to require an OFFICIAL letter.

But alas, even when I think there isn't much left with Tess that can shock me, boom, a letter from our home health agency managed to do just that.

Our HHA, who provides our in home nursing, just kicked Tess to the curb due to "lack of staffing".

Did you get that? They can't find a nurse to come out here, and apparently placing adds is just too much for them to handle, so they sent me a letter basically telling me they won't help us any more. But let's keep in mind that they are all about the kids.

*snort*.

And it's even more ridiculous considering Tess now has a palliative care team being set up because she has been deemed medically fragile enough for us to need that extra support.

Awesome.

Oh, and bonus, Tess will most likely be having yet another major surgery sometime this year to correct her spine.  This is a surgery that both Charlie and I have had major reservations about because of how big a surgery it is and how invasive it is added to the fact that she had a very scary post op pneumonia from her bilateral hip surgery and has gotten even more fragile since then.  And in all honestly, we are scared to death that by agreeing to it we are going to harm more than help her which begs the obvious question,

So why put her through it?

We have finally come to the place where we know that basing decisions about Tess's health on fear rather than facts is just not fair to her. We have discussed and discussed all of the benefits vs. risks and are finally at a place where we can see just how much she really does need this surgery. At this point, her scoliosis is literally compressing her left lung making it a lot harder for her to fight pneumonias when she does get them. And guess which lung she almost aways gets them in? Ding. Ding. Ding. You got it. The left one. The scoliosis is also making her right rib cage sort of pop out in the back making her appear hunchbacked. It also is making it very difficult for her to do things with her body (think PT and OT) because she is spending precious energy simply trying to keep her torso and head up.

So spinal surgery is probably imminent. And I am scared to death. Not going to lie about that. As I told the doctor, I feel like I cannot make a "right" decision because if she gets the surgery, and, God forbid, she dies either during surgery or from a post-op pneumonia (which she WILL get), then I effectively killed her by letting them do the surgery, but if I let fear be my guide and don't let her have the surgery because I am scared and she dies from a pneumonia that she could have potentially fought off if she had had the surgery, then I effectively killed her by not letting her have the surgery.

A damned if you do and damned if you don't scenario that is literally life threatening either way.

But God love the doctor who very bluntly told me that I was thinking about it backwards. He told me that instead of saying that there is no "right" answer, that I needed to rethink it as there is no "wrong" answer because whatever we chose for her, we would do it out of love and what we thought was the best for her and you can't be wrong when you are doing something like that out of love.

And so, with that in mind, and refusing to let fear be my guide, surgery it is because I feel in my mother's heart, we are not doing right by her to continue to let her spine curve and compromise her health more and more.

I realize I keep saying "I" but Charlie and I are a team, and we are in this together and, after many long talks, and yes, arguments because we are scared, and getting angry feels better than feeling scared, we are in agreement.

So, long, rambling story short, there is, as always, a lot going on here at Casa de Reidy.

And right this moment, this is exactly how I feel: ;)