Monday, July 27, 2015

Potayto, Potahto....

The other day I got a phone call from Tessie's "boyfriend"...aka Dr. Stephenson. He has been helping me to fight against the State to get in-home nursing reinstated for Tess because, per usual, the State was actually trying to deny us yet again.

In fact, when the nurse who works for the State called to tell me why they were denying, I quickly reminded them that since we had last had nursing Tess has become more medically compromised and their policies hadn't changed so they couldn't deny us. They still told me "no".  I then reminded them that the last time the State had tried to take away nursing hours I had called the Governor's office and threatened to bring Tess to his home with a sign that read, "My Governor does not care about me" attached to her wheelchair and invite the media. When the nurse replied, "That doesn't frighten me.", I quickly responded with, "I'm not telling you this to frighten you. I'm telling you this just to give you fair warning of you you are dealing with, and trust me, I will fight this as far and as long as I have to and do whatever I need to do in order to win." Good times. Good times.

But I digress.

Dr. Stephenson had written a letter to the doctor in charge at the State level on Tess's behalf as well as called him several times (with no answer or return calls) to rattle his cage because he was so appalled that the State had the gall to try to deny Tess nursing care. Long story (sorry!) short, his letter did the trick and we got all the nursing hours we requested.

Huzzah!

Anyway, as I was talking with Dr. S, he wanted to hear about how Tess has been doing because he hasn't seen her in his office in a while. I told him that I thought her seizures were increasing, most likely as a side effect of puberty, and then went on to tell him about her having a cluster of small seizures around 10pm the night before and how a few hours later, Tess's 02 dropped down to 86% and I had to work a little to get it back up into the 90's. I told him that I repositioned her, suctioned her and...wait for it...did chest compressions to help her to breathe better.

He quickly interrupted me at that point and said, "Wait up, wait up. You had to do CHEST COMPRESSIONS on her?!?!".

It took me a few seconds to work out why he was sounding so shocked and frankly, a little freaked out. Then it hit me...Yup, I had actually used the words chest compressions when I meant to say chest therapy, which is basically using your hand to pound on her chest and lungs to move around the gunk in there, as opposed to say, oh, performing CPR, which is what I had said I did.

I laughed and quickly corrected myself as he laughed with me and said, "Now Mama Reidy, I know you are super comfortable doing a lot of scary stuff alone with Tess but I really would think that you'd be a little bit more, well, excitable, when telling me about it if you'd had to perform chest compressions. Also,  I hope you'd at least give me a phone call!" (he was joking...he knows me well enough to know that I would be a total basket case if any sort of chest compressions were involved.)

We laughed a little more over my stupid, and very dramatic blunder and I told him, "What can I say? We haven't had nursing help in ten months and I. AM. TIRED."

He very nicely let me off the hook for being such a drama queen with my story and I hung up feeling just a teensy bit like an idiot.

But an idiot who can still laugh at herself.

Chest THERAPY, Joanna. Not COMPRESSIONS.

Meh, Potayto, Potahto..... ;)











Wednesday, July 15, 2015

Casa del Cray Cray...

Howdy! It's been a while, hasn't it?  Well lucky you, I'm about to catch you right up on what's been going on here at Casa del Cray Cray! Settle in.

We'll start with Tessie's 12th birthday! My little baby is twelve years old. TWELVE. And what did mama do to celebrate? Why threw her an awesome Frozen party complete with Princess Anna's Coronation dress for my little Princess. She. was. too. adorable. If I do say so myself. And I made her chocolate pudding with whipped cream and even let her have about a teaspoonful. Because I'm finally acting on what I say, I want Tess to have a great QUALITY of life, not just quantity. And once in a while, that even means risking an aspiration pneumonia on your birthday in order to taste something delicious made just for you. When her eyes lit up and she started grabbing that spoon trying to get More! Faster! It was all worth  it.  And I can say that now because she didn't get sick.  Phew! *wipes brow*


Princess Anna with Elsa and Olaf


featuring Oreo as Sven ;)


Let's see.  Oh yes, amidst the daily crazy I got to go with my Yaya to see the one, the only, Glennon Doyle Melton *cue angels singing from Heaven* when she spoke at the Old South Church on Boylston Street in Boston. I LOVE her! If you haven't read her blog, Momastary, or her book, Carry on, Warrior, then all I can say to you is CHOP CHOP! Get on it! So. Good.

Kellie, aka, Yaya, Glennon, and me! :)


The next day I left my Yaya and met up with the hubs and Tessie to take her to her appointment in, where else...Boston, you know, the place I had literally JUST BEEN not twelve hours prior, for her infusion of bone strengthening medicine. While this was already on the books, I did call the day before to question whether or not she REALLY needed it. After all, this stuff is heavy duty with some fairly crappy side effects and I was having major guilt about injecting Tessie with something that was going to most likely make her feel terrible after.

Ugh.

The constant battle between helping and hurting Tess. So many times the help has to come with the hurt, and as a parent, it's unbelievably heart wrenching to make those decisions for her.

But I digress.

I was told in no uncertain terms that Tessie's bone density scan came back and that she most definitely needed the infusions.  Roger that.

We got Tess to her appointment and the nurse struggled (as almost every nurse does) to find a vein to insert the IV into. While I had to look away lest I get a tad whoopsy feeling, my little warrior girl giggled and giggled as that needle dipped and bobbed trying to hit the vein. Of course it helped that the nurse was a riot, they had her favorite movie playing, a warm blanket on her, and Oreo snuggled right up with her on the bed but still...I most certainly never feel like giggling when I get a needle in the arm, and I don't think any amount of "comfort" things would help me feel like laughing.  I tell ya, this kid constantly amazes me.


getting her infusion...happily

The infusion took just a little over three and a half hours then we were sent on our way. Tessie did great and all that afternoon into that evening I was thinking that for once, Tess was going to catch a break and not get the side effects that so many do.

When will I learn?

Around midnight Tess started fussing and her o2/heart monitor was alarming. When I got up to check her, I noticed her high heart rate, around 150, and decided to check her temp. 101.6. She was also very clearly in pain. We had been warned about all of this and told that it was all normal side effects so I didn't get too worried. I mostly just felt very guilty because I had agreed to the medicine that was now responsible for her misery. Hurt to help.  It has to be this way but it sure does suck.

feeling like total crap :(


Tess slogged her way thru it and after about day five, she was totally back to her happy little self. Sweet relief, let me tell you. And bonus, we were on our yearly family vacation in Rangeley. Moosing, speed boat rides, pontoon boat picnics, bowling, strawberry festival, we did it all. And this year, Oreo got on the pontoon boat without any trouble. We joked that she knew it was safe this year where last year, when she refused to get on, we later realized one of the pontoons had had a small hole in it and that Oreo was so smart, she had most likely sensed the danger and was trying to warn us.  The guy who runs the marina was cracking up when we told him.  Good ol' Oreo Cookie.






So now we're back in the daily grind. Tess's seizures seem to be amping back up and I am thinking that it most likely is because she is starting to go thru puberty. Yee haw, cowboy!

And speaking of seizures, I'm about to tell you two things that, without a doubt, will secure my spot as Mother of the Year.

The other afternoon, the hubs and I were sitting out on our deck enjoying the gorgeous weather as Tess was napping like she does about every day, when we heard Oreo whimpering. We both thought that she was whining so we would let her out to be with us and we, rather sternly, told her, "No! You stay with Tessie!".   Cue more whining and more "NO'S!". Then, a VERY panicked sounding whine. The hubs looked over and saw Oreo literally standing, looking and whining AT TESS in her bed. "Is she alerting?!", the hubs sort of yelled as he and I both jumped up and ran into Tess's room.

Yup, as her parents were literally only FEET away (her bedroom is the room right next to the deck that even has two windows that open directly onto it),  Tess was having a small seizure and poor Oreo was all, "A little help, please!".  Have I mentioned how much I love that dog?

Then, today, as I was giving Tess her daily breathing treatment, (nebulizer with xoepenex & hypertonic saline, chest vest, cough assist, suction and flovent inhaler), I noticed that she appeared to be, maybe, possibly, having a small seizure. I assessed her as much as I could but decided it wasn't serious enough to stop all of the treatments that were happening. That's right, my friends, I just kept mercilessly on. At one point, I did decide it was looking serious enough to start dealing with the seizure rather than the breathing treatments and I did remove the nebulizer mask and shut down the vest but then she came out of it and smiled at me. Back on went the neb and the vest fired back up.

I know it sounds harsh, but by now I can prioritize pretty efficiently and quickly what needs to happen and when.

Besides, to be honest, days like that are pretty much business as usual when you live here in Casa Del Cray Cray...  ;)





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.

Sigh.

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.

Harrumph.

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) and.....um, 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 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: ;)