Thursday, May 28, 2015

I blame her therapists...and that dang Elsa chick...

So Tessie got her new wheels last Thursday.

Twenty-six thousand dollars worth. Yes. You read that correctly. Thank God for Anthem who foot the entire bill.

This chair does it all.

It tilts.

It raises up to a height that means Tess can be at counter top level with me and "help" with dishes, making cookies, whatever.

It has a remote that can be programmed to work the TV, an iPad, heck even a garage door (if we had one).  It sounds ridiculous, I know, considering that she is just learning how to drive the thing and working a remote like that is WAY off in the future, if ever. But hey, go big or go home.

It has a soft fuzzy headrest.

It has her name embroidered on the seat.

It has a parental override control stick (looks like and older game controller) that the boys (read Bobby and Hunter) have decided is great fun as they take Tessie cruising around the house.

It really is a sweet ride. But there is one thing I'm just not happy about.

It's blue.


This is where her therapists (shout out to Kellie and Chelsea) come in. These two ladies actually dared to to tell me that Tess should get to make her own choices when she can and that I need to respect those choices.  Well ladies, I hope you're happy with yourselves. You've created a little opinionated monster.


So, being the most awesome, and totally confident that she would choose the pink or the purple wheelchair, mom that I am, I gave her the colors to pick from and asked her very pointedly,

"Tessie, what color do you want your new wheelchair to be?"

And I might have leaned the pink and the purples a little closer to her hand than the other colors and I may have even made her repeat her choice when she, quite clearly, chose the blue.

"Tessie, are you sure you want the blue one? It's going to be the color on your chair for a VERY long time. Wouldn't you like it in pink? Or how about purple?" And I must confess to really making those colors sound super exciting in the hopes that she would totally see that choosing pink or purple would be just the best choice ever!

No dice.

No, my little diva never once deviated from her choice of blue. No matter how many times I questioned her or moved the colors around, you know, just to be sure; I mean, I wasn't trying to trick her or anything. What would that say about me as a mother if I tried to trick my kid, my disabled kid,  into picking what I wanted?! No way would I ever do that to my precious little angel. Okay, maybe I would. Whatever. Regardless, it didn't work.  She just wanted blue. My little girl who I adore in all things pink, and up until this point had always, always, always either chosen things in pinks or purples, she chose the blue.

And I knew the right thing to do was totally support her choice, and I did. But I was faking my enthusiasm because mama WANTED THE PINK POWER CHAIR! *stomps foot and shakes fist in the air very dramatically*

Tess's sweet ride

look at all that blue

I'll admit that I like her name there

the controllers that the boys just love

Bobby, cruisin' around the house with Tessie 

And all I could think was "Damn that Elsa! It's all her fault!"

I mean, let's face it, Frozen is THE MOVIE for Tessie and she just loves when Elsa is running up the mountain, singing and turning everything she touches a shade of blue ice. Of course Tess would want a blue chair. Just like Elsa...well, you know, if Elsa was disabled and needed a sweet power chair to get herself up that mountain, but then I suppose she can just magically make her own out of ice but it would be awfully cold to sit on (but the cold never bothered her anyway), yeah, got a little sidetracked there. Sorry about that. My brain is quite literally Frozen.

Oh well, I suppose I'll get over the fact that Tess has a mind of her own and may not always want what mama wants.  Somehow.

But no matter what that brainwashing Elsa says, for now I just can't....

LET IT GO!  (you knew I had to say it)

Just look at her smug little smirk. She knows what she's done to my formerly pink girl. She knows.

Saturday, April 18, 2015

66 Degrees...

Sixty-six degrees.

Not the name of the latest hit boy band.

Not the temperature outside (which, incidentally, would be awesome right about now!).

Not even the temperature inside my house. (Personally I like a nice even seventy).

No, sixty-six degrees is the number that tells how much Tess's spine has curved.

Yes, you read that right. Tess has a sixty-six degree curve of her spine. In order for you to fully appreciate what that looks like, let me give  you a visual.

This is an X-ray of Tess's spine taken ten days ago at Boston Children's Hospital. This is what a sixty-six degree curve looks like on an eleven year old little girl. This is why we have made the very tough decision to let the Spinal surgeon perform a major spinal fusion surgery on Tess.

We met Dr. Snyder (the surgeon) yesterday. He was very blunt when he brought us that image and told us in no uncertain terms that this curve would just continue to worsen and eventually, "...will kill her.".

Because the curve is up high, it has already compromised her left lung to the point where she often gets pneumonia's there and it doesn't fully expand anymore. Last October's pneumonia was case in point of what this scoliosis is doing to her overall health.

Then there's the physical limitations it is burdening Tess with. Tess fights so hard to make her muscles work even under the best of conditions, forget that now she is also fighting to hold her upper body, neck and head up so she can try to move her arms and hands with purpose. And have you ever tried to take a deep breath while bent over? Try it. It's not comfortable by any means and Tess is constantly trying to breathe like this.

While we are very scared to put Tess thru this major surgery, we are now more scared not to. How can a parent not want to fix their child's spine when it looks like that?! Then there's the fact that if we wait too long to let her have the surgery, we'll miss our window and she'll be too fragile to even get it.

Plus, Dr. Snyder was so thorough on what has to take place prior to the surgery to ensure the safest and best possible outcome for Tess that it made my head spin (but in a reassuring, he's on top of it, kind of way).

He has set up an appointment for a sleep study to see if we need to do more to help her breathe at night while she is sleeping. Everyone suspects that yes, she will need some sort of help but the study will tell us exactly how much and therefore, the best way to do that. It will also tell us if she should have her tonsils removed because the theory is, they are blocking her airway to some degree due to being enlarged. Dr. Snyder said he strongly suspects her ENT will recommend this minor surgery prior to the spinal fusion.

Then she needs to have IV injections of some medication to strengthen her bones. Dr. Synder has concerns that without this, her vertebrae won't be strong enough to hold the rods and screws and could even possibly fracture when they are placed. Yikes! So that is priority number one and that appointment is on the books.

Tess then needs to see her physiatrist for possible botox injections and maybe even put on a medication called Baclofen to help control her tight muscles. Dr. Snyder said that kids like Tess, who have Dystonia (where the muscles spasm from low to high tone) often have pain management issues post surgery (which would explain the bilateral hip surgery pain that went on far longer than anyone expected it to).

Then she needs to be seen by the Complex Care pediatrician who will coordinate with every one of her specialists from Portland to Boston and make sure that every one of them have cleared her for the surgery.

Then...the surgery.  It's scheduled for September 29th. Dr. Snyder didn't want it any sooner than that in order for Tess to get herself as ready and strong as possible, especially the bone strengthening injections which need time to take effect once administered apparently.

All in all, we feel good about it. Terrified, but then, we're used to that feeling where the Toots is concerned. ;)

Saturday, March 14, 2015

You gotta have Faith...

So it's pretty obvious that I haven't written a post in a while. Whenever I think about it, I just go blank. I guess you could call it "writer's block" but what I think it really is, is fear.

I have always tried to be honest here when telling about my travels with Tessie, but I also never really put myself totally out there. I tend to try to soften up the harder stories with a small joke or some other way to prove that everything was okay even when I was not necessarily feeling okay. I'm not sure who I was protecting by doing that? Blake and Ellie, maybe, since I know they read this blog. My family perhaps. Or maybe, just maybe, myself. And since I am of the belief that, to paraphrase from the Bible, Where Faith exists, Fear cannot,  I am going to take a leap of faith and put my fear out there for all to see in the hopes that the grip it is holding on me will lessen, even just a little bit. I think in order for me to write any more Tessie stories, I need to get past this one. To basically drag it up from the dark where I have been trying to shove it and shine a great big light on it.

Fair warning, this is a bummer of a post. Nary a funny in site. With that said, here goes nothing.

About a month or so ago, the hubby and I met with the Palliative Care nurse at Maine Medical Center. We had a very good talk with her and agreed that the best thing we could do for ourselves and for Tess was to fill out an Advanced Directive for Tess. This would basically be a written document that we would carry with us whenever Tess was in the hospital to remind us of the decisions we would want to make in regards to her care should things get very scary like they did this past October.  It is recommended that parents do this so they are not forced to make some of the hardest decisions of their lives in the middle of a crisis when they aren't thinking with their rationale brain, they are operating in a state of fear and panic and, let's face it, that's no time to make life and death decisions if it can be avoided.

At any rate, we left that meeting feeling pretty good about making that decision. I thought it would be a very emotional meeting and turns out, it was almost comforting to know we had that support system in place.

Then the Advanced Directive paperwork arrived in the mail.

This is what was staring at me:

It looks so deceivingly happy, doesn't it? And in pediatrics, the Advanced Directive is called My Wishes. It is designed to help kids who are mentally able and know that they are dying, to have some sort of control over it all. And while Tess is mentally one smart cookie, she obviously cannot answer any of these questions which leaves it up to Charlie and me to do. To answer, for our daughter, how she would like to die. Where would she like to die? What comforts her? What are her favorite things to have with her when she is dying?

My hands are sweaty, my heart is pounding and my eyes are watery just typing that sentence.

 But where Faith exists, Fear cannot.

HOW are we supposed to answer that?! HOW does a parent answer how their child should die? This seems like cruel and unusual punishment. This is NOT what I ever in a million years thought I would be doing for one of my kids and this sure as hell is not what I signed up for when I wanted to be a mom.

 But where Faith exists, Fear cannot.

So I put it right back in the big manila envelope that it came in and haven't looked at it again until tonight.

 But where Faith exists, Fear cannot.

It is just too overwhelming. By writing those answers in it feels so much more REAL. Like I am acknowledging that I know Tess is going to die. That I know she will never get better, only sicker and more fragile, as she gets older and in reality, we have no idea what "older" even means. One more bad pneumonia could be the thing that kills her. One bad seizure.

But where Faith exists, Fear cannot.

To top that scary pile of crap with even more scary crap, she will be getting spinal surgery and will have a tough recovery with a post-op pneumonia that is nearly a guarantee. But to not get her the surgery will also mean putting her life at risk because her lungs are so compromised from her scoliosis. There is no win-win here. Just scary and scarier.  And I live in a nearly constant state of fear over her health. Was that a sneeze? Did she just cough? Why is the dog acting so bizarre around Tess? Is she having a seizure now? Did she just get bath water into her mouth and aspirate into her lungs? The Fear is ever present. Almost omnipresent. And that is NOT how I want to spend my time with Tess or my hubby, or my two other girls, or anyone else for that matter. I'm sure I sound totally neurotic and I will admit, I'm a little nervous to put all of this out for everyone to know about me but, I think, if I don't get it out then I don't stand a chance of beating it.

But where Faith exists, Fear cannot.

Then there are times when I just look over at Tess as she has her little hands clasped together and a big smile on her face while watching her favorite movie and all I can think is, "Time! I need more time!", which I know is very dramatic because it's not like I even know how much time she does have. So I try to think like a rational human being and tell myself to stop borrowing trouble that isn't even here. Then I try very, very hard not to think about how I'll be if/when she dies. But I'll think it anyway because it's always there, lurking like a dark cloud that is hanging over my head that I can't ever seem to run away from. When I mention it to family members, I'm all stoic and brave because I fear, if I let even a small chink in the armor show, it is all going to go crumbling down around me and I will just fall apart. I often wonder, can someone's heart literally break? I'm starting to believe that it can.

But where Faith exists, Fear cannot.

And that F***ing Advanced Directive. I hate it. I hate it, I hate it, I hate it, yet I know we have to get up the courage to fill it out. Because I know I have to face this. WE have to find the strength and courage to fill this out for Tess. She deserves it.

And where Faith exists, Fear cannot.

I don't know how long we have Tess, and I am not expecting a miracle as far as her health goes. I understand what is happening to her little body each time she gets sick and even if I didn't, the term neuromuscular respiratory failure would be enough to give me a pretty good idea. But here's the thing, I am not expecting a miracle, not because I don't believe in them, but because I know we've already gotten our miracle... in Tess.

Tess is a miracle. There's no doubt in my mind about that.

And where Faith exists, fear cannot.

So screw you, Fear.

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 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? :)


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.


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.


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: ;)

Thursday, November 20, 2014

Beware the ball; more tales from the Tess & Oreo files

As all of you who read this blog know, last month was a very scary one for us. Pneumonia hit Tess hard and we spent nine days in 2 different hospitals and a couple of very scary days in the ICU. It feels like forever ago and it feels like just yesterday. Time is a funny thing.

The day before Tess was shipped off our little island on a midnight ferry run to the mainland, I noticed Oreo acting pretty clingy to Tess. I wasn't super surprised because I knew Tessie had a cold and Oreo tends to hang closer to Tess when she isn't feeling good. Oreo had also been alerting but I assumed it was to seizures.

In hindsight, I was right and I was wrong.

Some of Oreo's alerts that day were pre-alerts for small seizures. The other alerts were because Tess was getting sick. Very sick. Sicker than I ever suspected at the time.

But Oreo knew.

And when, late the next afternoon, Oreo brought her very favorite toy, a ball which she does not let anyone take from her willingly, over and dropped it gently on Tess' lap and then "lapped" her by resting her head on Tess's lap and proceeded to sigh a very heavy sigh, my immediate thought was...

Crap. We may be in some trouble here.

I know how crazy it sounds to base my concerns about Tess on Oreo dropping a ball in her lap, but the only other times Oreo has done that exact same thing, Tess had a pneumonia and then a broken right femur.

Tess and her ever faithful buddy, Oreo, after just getting her leg casted after her femur break

And my theory on this is that Oreo knows Tess is her girl and they've got a pretty unshakable bond now so I think that Oreo did the only thing she knew how to do in the moment to try to make Tess feel better....

She gave Tess her most prized possession. The thing that always makes Oreo feel happy. I even liken that silly ball to Linus's security blanket on Charlie Brown. But that ball is Oreo's treasure and she was offering it up to her girl, on all three of those occasions, when her girl was in trouble.

It just about melted my heart while at the same time scaring me half to death.

It also played a very big part in me being so hyper vigilant of Tess that night to the point that, even thought her sats on the monitor looked okay, not great but okay, I decided to do something that I rarely ever do; I counted Tess's respirations. And they were high. Like sixty breaths per minute high.

It wasn't four hours after Oreo dropped that ball on Tess's lap that I had called out our island doctor to our house and the ambulance arrived and we got on the ferry to get out of dodge.

How does Oreo know Tess is so sick? I have no idea. But she knows, of that I have absolutely no doubt.

And while Tess was at MMC, Oreo was on high alert. So much so that just before Tess was moved down to the ICU in respiratory distress, Oreo had been jumping up on Tess's bed and getting in her face just before her oxygen sats would dip down. When Tess would recover, Oreo would usually jump back down on the floor or come over to Charlie or myself for some attention or treats. Then, JUST BEFORE the O2 would alarm again in warning of low sats, Oreo would be back on the bed with Tess and in her face.

She knew BEFORE it would happen, that Tess's O2 was going dip too low and she would try to tell us.

Oreo on the bed with Tess right before being moved to ICU

Of course we didn't put this together as it was happening, only after when we had time to think about why Oreo had been so "restless" before they moved Tess down to the ICU. Yup, that's what we thought at the time. That Oreo was restless and not that she was alerting to Tess's breathing. But afterwards it was so obvious we couldn't believe we had missed it. Even the doctors and nurses, who were in the room most of that afternoon because Tess was requiring nearly constant medical attention and watched Oreo do this, agreed with us after the fact when we mentioned to them what we thought Oreo had been doing.

Oreo & Tess in the ICU....she was at her sickest in this photo and you can see where Oreo put herself. <3 td="">

Needless to say, the doctors and nurses at MMC thought Oreo was a total rockstar. And they would be right. They also all thought the tale of "the ball" was incredibly sweet. And they would be right again.

But on the other hand, I have learned to Beware the Ball.  ;)

Sunday, October 26, 2014

The Dynamic Duo...

*Retold with permission from Blake and Izza*

For this post, I am going to stray a bit from the usual Travels with Tessie stories and give you a little glimpse into the day in the life of a parent whose child is traveling around Europe with her bestie. Try not to be jealous. ;)

Yesterday as I hopped on Facebook for the millionth second time,  I noticed I had a private message waiting for me.  Considering both of my older girls are relatively far away from me, (one in New York and one traveling around Europe with her best friend), and they check in by private message nearly every day, I figured it was from one of them.

And I was right.  This is the message my oldest daughter, Blake, the one in Europe, left me:

That was it. Not a, "...but we're okay.", or, "...but don't worry.", or even a, " ...but we're not hurt."

Nothing. Nada. Zip.

Naturally I  swiftly typed back this little missive and sat waiting, frozen with panic, for a reply:

I sat staring at my computer screen willing her to respond.

Eleven minutes I waited.

Eleven minutes of me going thru every worst case scenario there was from them being kidnapped by the mugger, to stabbed and/or shot, to maybe the mugger had her phone and underneath that thug life facade, he was really a good guy at heart and maybe he was the one who actually sent me that message so that if I didn't hear from Blake I would assume she didn't have her phone because it had been stolen but that she was okay. Eleven minutes of the mama bear in me totally waking up and trying to figure out how I would get to where she was and then track them down, à la  the movie, Taken and make that mugger pay. Pay dearly. Because, you know, I could so totally do that. Uh-huh. Eleven minutes of me planning multiple, and very hurtful, ways I could go kick the ass of the guy who had dared to mug my girls. Again, because I could totally do that.

Yeah, crazy.

But you need to remember, Tess had literally just come home this past week after spending nine very scary days at the hospital and I am exhausted. Plus my middle daughter was on Staten Island and had been just a tad bit horrified to hear that the doctor who had just been diagnosed with Ebola had been using the subways. The same subways that she often takes so she was looking for a little reassurance from me. And the odd thing is, for someone who is, shall we say, gifted, at worrying, Ebola is the one thing I am not so freaked about. Go figure.

At any rate, Blake did finally reply and told me the tale:

Well, Holy Drama, Batman!!

We talked for a few more minutes, and she reassured me a number of times that they were okay, just a little but shaken up by it, but otherwise totally fine. My heart rate finally resumed it's normal rhythm and I began to fully appreciate what had just taken place.

And although I was a little concerned that by fighting back they could have been very seriously hurt, what I mostly was, was impressed. I mean think about that for a second. Those two girls actually fought back against a mugger in a foreign country...and WON.

Bad. Ass.

The Dynamic Duo!

I guess mama doesn't have to go kick someone's ass after all. These two already took care of it. :)