She survived!!!

Hello my friends! When I last left I was freaking out over the fact that Tess's spinal fusion surgery was only twelve days away.

We are now fourteen days POST-OP and all I can really think to say is....

SHE SURVIVED!!

I know, dramatic. But seriously, the hubs and I were unimaginably scared that she would either die on the table or from a post-op pneumonia. So much so that we weren't even sharing with each other how truly scared we were. When we got home the hubs looked at me and said, "I was about 65% sure she was going to die. I feel like I can breathe again.". I looked back at him and replied, "I was 75% sure she was going to die. No joke. I can't believe this is behind us." Because when you live with a fear that big for as long as we have (a little over a year), it consumes your every waking, and sleeping, thought. Yes, we had willingly signed her up for this but only because we basically had no choice. When the doctor looks you in the eye and tells you your child will literally suffocate herself due to the scoliosis and the spinal fusion is the lesser of the two evils, you listen and you listen good.

But as I was saying....SHE SURVIVED!!!!  And we don't have to keep thinking and obsessing over it. Huzzah!

Since Tess needed to be at the hospital by 6:00am the day of surgery, the hubs, Toots and I stayed in Boston the night before. Unfortunately the room I had booked weeks in advance was for only one double bed. For three people and a large dog. Oops.

The hubs took the hit and slept on the cot while Tess and I got to snuggle in the comfy bed. Around two in the morning I heard a loud crash as the hubs swore loudly and the dog jumped about four feet. Being the super concerned wife that I am I asked him in my most annoyed voice, "What are you doing?!?!".  I thought his answer was a little dramatic: "Getting tossed around and puked out of this God**** cot!".

Whaaa??

Apparently the hubs heard the call of nature and as he was getting out of the cot that was literally wedged between the bed and the bureau, his leg got caught between the two so he had to shift his weight and use his opposite hand to push down on the cot to get enough leverage to get out of his predicament. But when he put his hand down, the weight of it flipped the other end of it up and towards the hubs who then got folded up into the cot that was clearly trying to eat him, and only when it had decided he wasn't so tasty, puked him back out onto the floor and landed on top of him.

He. was. pissed.

I rolled over and went back to sleep. What can I say. I'm a good wife. I woke up around four to him literally throwing the cot into the hallway. He was still swearing.

And so our saga had begun.

We got to the the pre-op room after checking in at the hospital the next morning and right before taking Tess to surgery the OR nurse asked us why Tess was there (as a requirement to prove we understood everything). I had been doing absolutely fine until that moment. As I started to say that Tess was there for spinal fusion surgery, I burst into tears and could barely get it out. Let's just say that the OR team was kind but pretty firm about me not going to the OR with Tess. In the words of the anesthesiologist, "We don't need two patients."

I fully agreed and away Tess went as the hubs and I got the heck outta that hospital and went about three hundred feet down the road to our hotel to wait.

As my FB friends can attest, it was a very long and scary day. When we finally got to see Tessie she was swollen from being face down for so long and she looked like she had been beaten because they had to put her in a Halo traction device to keep her in exact alignment for the surgery. She was also still intubated which totally freaked me out. Because of the breathing tube, she was heavily sedated and the ICU nurses told us we should go to the hotel to sleep for the night because she wouldn't wake up and they would call us immediately if anything happened. We were so exhausted from the wait that we agreed.

It wasn't until late the following afternoon that she could be extubated. There were times during the day that she needed to be suctioned with the breathing tube in and she would panic, which was just heartbreaking to see. I have no words to describe it. I just felt so helpless watching her. Trying to tell her she was safe and we were there but knowing she was scared. It left me feeling panicked as well. So when the time came to extubate her I asked the respiratory therapist if people often panicked and was told that it does happen. I looked at the hubs and told him, "I can't watch this. I just can't. Are you okay to stay with her so I can leave the room?". He told me he was fine and I could leave for a minute to get some air. I took the dog out. I know my limits.

This about killed me to see

daddy and Oreo giving loves and reassurance

She did fine after that and since the hubs and I were taking turns spending the night with her, and I was going to the hotel that night, I left around seven and she was doing great. Cut to the next morning and I find out that she had had a collapsed lung and pulmonary effusion in the night and the room had been full of people and xray machines and she was now on cpap to help re-inflate her lung. I was just convinced that this was it. That what we had been dreading was about to happen.

I should never underestimate my Toodle Bug. She rallied as only she can and continued to improve every day. I know I've said it a million times but that kid is an absolute warrior.

Despite the drama and stress, there were a few funny little things that happened during our time there.

On day two of Tess's ICU stay I decided she needed these two huge Frozen balloons from the hospital gift shop. I didn't even factor in that I had to actually carry them thru the hospital to get them to her. Bad move on my part. I had basically gotten them down the stairs and thru the huge lobby without too much drama and was just getting onto the elevator when it happened. Olaf crashed right into some poor woman's face. Hard. I was mortified because I still didn't have very good control over the other balloon and was trying to wrangle Olaf back in to submission. "I'm so sorry!" I yelled in her general direction. (the balloons were too big for me to see around). Everyone in the elevator got a good laugh out of it, including the woman who got face punched. She even said that some girl was going to be very happy with those balloons. "Yeah, but not you!" I replied. God Bless her, she just laughed some more.

Elsa is ready to Let it Go and whack someone

who knew innocent Olaf was really a fighter at heart?

See the TV and toy stand? I just wanted a visual of how big these balloons really were!

Then there was the butter incident. The hubs had been raving about the cafe's incredible french toast and how I should try it. He went on and on about it. I finally agreed and told him that when he went to the cafe to get it, to not forget the butter. Well, you would have thought I had asked him to go looking for a severed head.

 "Butter? I don't think they have butter."

 By this point we had been together for about ten straight days in pretty stressful circumstances so our patience was running pretty low.

"Of course they have butter, Charlie! They're a freakin' cafeteria! They have butter so just get me some!".

"It's a pretty healthy cafeteria.", he responded.

Oh. My. God.

"Charlie, they have got butter. I just know it. The same way that I know I'm in Hell right now!".

"But I don't know where it is."

 "Are you kidding me right now!?! Do not say the word butter to me again." And then thru gritted teeth, "Just make sure you bring me back some!"

I got the butter. Hah!

Ellie came for the weekend and she spent one night with the hubs at the hotel and one night with me. Let's just say, we had a little adventure. It started with my first ever Uber ride with promises from Ellie how it was so easy and convenient and so much better than a taxi. I'm just going to make this short and sweet and tell you nothing about it was easy or convenient. Add to it a dog who gets carsick easily and was panting and burping during the fifteen minute drive to the hotel with Ellie looking panicked and me reassuring her that the dog would be fine and the driver asking, "Is your dog OK?" made for an awesome Uber ride. Yeah, good times. Good times. But at last we made it and had a good laugh over it with Ellie confiding to me that had the dog actually puked in the car she was totally prepared to give the driver five dollars as an apology. Five one dollar bills. Five crumpled, stinky, been all over NYC and Boston, one dollar bills. Because you know, nothing says, "Sorry for the dog puking all over your nice car like five ones". God love her for thinking of it though.

Then the next morning she set off the fire alarm with the steam from her shower. Oh yes she did. Us Reidy women, we like to keep people on their toes.

Ah well, the laughs were worth it.


At any rate, this was a much longer blog post than I had originally intended so sorry about that. But what can I say, I still am on that natural high provided by the fact that...

SHE SURVIVED!!!

Where we're at...

So it's about twelve days until Tess's spinal fusion surgery.

Gulp.

I keep thinking about that moment when they will wheel her away from me and take her to the OR. How I'm going to be sending my happy, giggly, trusting little girl into a place where they are going to slice her back open and, when she wakes up (God willing she handles the actual surgery okay) she will be in major pain and could have other problems. I don't want her to think her dad and I let someone purposely hurt her, so, knowing that Tess is a very smart little girl, I am going to take the time to gently explain to her what is going to happen and that she will hurt for a little while but that she will feel so much better when she heals up. Better than she has felt in a very long time because her lungs will be fully opened up rather than misshapen and sort of crushed like her left one is now. Plus she will be able to work her body in other ways so much more efficiently because she won't be spending all of her strength just trying to remain upright. I pray she takes that information in and understands that sometimes we have to hurt before we can heal and that it's because we love her so, so much, that we are having her go through all of this.

Oh the guilt of knowing in my heart that she absolutely needs this surgery but also knowing I am going to send her to be hurt in order to have her heal. It's a very squirmy feeling. That's the best way I can describe. Like something is squirming around in my heart and squeezing it.

We took her to Boston Children's Hospital last week for her final pre-op appointments. There were a few more hoops to jump through and they really wanted her to see her epileptologist because her seizures have been increasing in frequency and strength. They want her going into surgery as medically stable as possible and an increase in seizure activity does not meet that criteria. Her doc (whom I just love) sat with us for about an hour and, after hearing about all of the changes including one particularly scary day when Tess was at school and Oreo was alerting like crazy and whimpering and basically not wanting Tess to be taken anywhere to the point where her nurse called me and asked me to come to school only to realize that yes, something wasn't right. Tess was...off. There's no other way to describe it. I thought she had probably been having some new, weird type of seizure based on the nurse's description of what had happened and then Tess did it again and I saw for myself why she (and Oreo) had been worried. It was just bazaar so when I told her doc all about it she worried that maybe Tess had had a "syncope" episode and promptly ordered and EKG to make sure her heart was working ok. Tess always has a tachy heart rate and it can jump around pretty quickly but the doc thought that whatever Tess had done that day in school, it didn't sound like a seizure.

Then she brought up something that, in the five or six years that she has been treating Tess she has never brought up before...

SUDEP    (Sudden Unexpected Death in Epilepsy)

Well, yeehaw cowboy.

Of course I had heard of it but what I really wanted to know was why was she bringing this up now? What had triggered her need to lead us down this road at this time?

As it turns out, there were several reasons.

First, Tess still has an intractable seizure disorder meaning her seizures are not fully controlled through medication. So. much. medication.

Second, Tess is getting older and apparently that increases the risk of SUDEP.

And lastly, Tess has other neurological issues which also increases the risk.

Then she asked us if Tess was monitored throughout the night. I said yes and she was very relieved. She was even more relieved to know that Oreo slept with Tess every night as well. I told her that if for some reason the monitor didn't let us know Tess was in major trouble, I felt very confident that Oreo would and she agreed. Then I made the mistake of assuming that that meant Tess was sort of protected from SUDEP because of these alarm systems we had in place. She very gently told me that when someone passes from SUDEP it happens very quickly and they are just gone and, even if a parent, nurse, etc, is right there, the person is usually already gone and can't be brought back and the doctors are still all trying to figure out why. Then there was this little gem...SUDEP rarely happens during a seizure like you would expect it to. It often happen a little while after a seizure. The brain just sort of throws a switch and says, "I'm done" (my wording based on her explanation, not hers).

Ain't that just a kick in the chops?! Because you know, we don't have just quite enough to worry about. *snort*

But I will say that, after a lot of tears and prayers,  I am at total peace now with her having the surgery. No matter the outcome. And as for the SUDEP, I refuse to spend too much energy worrying about that. To me, it's an, "It is what it is" type of thing plus I keep hearing the doctor tell me, "...and most times, there's not a damn thing anyone could have done to stop it.", which in a weird way, brings it's own sense of peace.

So I guess this is where we're at right now. Big worries, big surgeries, and one little girl in the middle of it all.

And what a little girl. Am I right or am I right? ;) <3 p="">

A (very public) Thank You Note...

Yesterday, the hubby came into the house carrying a cute little gift bag.

 "Tessie's got a present!", he called out before bringing it over to her to open. Naturally I was super curious because it wasn't her birthday so I couldn't think of who or why someone would leave a present for Tessie sitting in the front of Charlie's truck.

The hubs could tell that I really wanted to open, I mean HELP TESS open it so he handed it over as I, uh, WE, dug in. First, the note (I am not going to share everything she wrote but the front of the card was too cute not to share:

the "an old" part that Sam added was too cute

It was from one of Tess's teachers from several years ago. A lady who, whether Tess was actually in her grade or not, has ALWAYS made an extra effort to make Tess not only feel included in school, but more importantly, WANTED. She's had a baby within the last year or so and thus has taken a couple of years off, but she is an incredible teacher. The type any parent is so grateful to have for their child.

But I digress.

After showing, then reading, the note to Tessie, we pulled the present out of the bag. Here it is:

a closer look at the saying

I mean, how AWESOME is that shirt?! I seriously couldn't believe it (even went into Nana Belle mode there for a second) because the saying on that shirt is the one I always apply to Tessie. It's the tag line to this blog for crying out loud (which I'm sure is why Sam thought of Toodle Bug when she saw it) but still....thinking of a kid is one thing; taking the time and expense to actually order it for that child is quite another. And bonus...it's Tess's new favorite color...ELSA BLUE!

And with Tess's spinal fusion only three weeks away, I am constantly reminding myself of that saying. It's become a sort of mantra when I go into those moments of fear. So when I saw that shirt yesterday it was like a sign, and it could not have come at a better time.

Having said that,  I want to take a minute to send out a very public "Thank You".


Dear Sam and Jayda,

Thank you so much for the unexpected, but absolutely perfect in every way, gift that you left for Tess yesterday.

Thank you for thinking of her.

Thank you for the beautiful reminder that so many people keep her in their thoughts and prayers.

Thank you for taking the stress, fear and exhaustion from having a sick kid for the past ten days and instead, throw a bright ray of sunshine our way with your kind gesture.

Tess's spinal fusion surgery is only a few weeks away now and I am living with a lot of fear and anxiety because of it. Thank you for taking my most favorite phrase for Toodle Bug and sending it to her just exactly when I needed that reminder.

Thank you for telling me you and your family are sending her positive thoughts for her surgery. It really does help to know that other people care.

To you it may have been a small gesture but to me, it means so much more that I can say.

Thank you.

XOXO Tessie and Fam.

PS The shirt is the perfect size and I am saving it for her to wear into the hospital the morning of her surgery. It's like her very own battle armor. We are going in there ready to be FIERCE!

PPS I very much hope you don't mind such a public Thank You. It was just too sweet and perfect not to share.  :)

Take that!

I got a call at the end of last week that made my blood boil.

The surgery scheduler for the doc who is going to be performing Tess's spinal fusion surgery told me that she needed to reschedule Tess's surgery date.

The date that had been put in the book last April and was now less than four weeks away.

The date that we have been trying to mentally and emotionally prepare ourselves for since we finally faced our fears and agreed that this MAJOR surgery was Tess's best, and only option, despite the many scary things that could happen to her as a result of having it.

The date that we planned nursing schedules around, work schedules around, and had booked hotel rooms around.

And what really threw me over the edge was the reason for the reschedule; the doctor has decided to go to a conference.

I. can't. even.

Well, after ranting and raving on facebook about it and getting  some much needed support from my FB peeps (thank you all very much by the way),  I called Patient Relations at BCH and left a detailed message about my unhappiness. Then, when the hubs came in thru the door, I started to rant all over again with no doubt he would be in full agreement.

Ask me how that worked out for me.

He was, as usual, the voice of calm and reason. God, I hate that sometimes. He was all zen about it and was listing off the positives like it would give the bone infusion meds more time to work and that you don't want a doc operating on your kid when their mind is elsewhere and you've pissed them off by calling in the big guns to try to get your point made that you are unhappy with them, etc., etc.

Grrr....

So I did what all good wives do. I started in on him and why was he defending this jerk of a doctor who was putting a conference ahead of patients' lives and why could he not just back me up on this and see my reasoning and how could he possibly think this was okay to do to people and on and on I went as only I can when I'm good and revved up.

Then I really showed him by leaving him all alone on the deck to watch the sunset by himself. In peace and quiet.

Take that, mister man!

So I went to bed and said a little prayer for some peace and guidance.

Thankfully, God must have taken pity on me because I woke up with a totally different attitude about the whole thing. I decided to trust that there is a reason this was happening and, don't tell Charlie, but agreed with him that we probably shouldn't tick off the man who was going to slice into our child by filing a formal complaint. Besides, the bottom line was, nothing I did was going to actually help the situation, yet it could make it tense and awkward. Not something I needed to add to an already overstressed plate.

And when I checked FB this morning, one of the first things I saw was this:

 and this:

I took them as good signs that my new attitude about it all was a good thing.


So when Patient Relations called me back first thing this morning, I told them to just forget I called. They assured me that I had every reason to feel frustrated and offered to hook us up with a different surgeon and/or go speak with the surgeon on our behalf to explain our frustrations but I said no thanks. We would just plan on the new surgery date and deal with it.

I then told the hubs when he came home for lunch that I was not going to complain to BCH because it just wasn't worth it for Tess or us.

His response: "So you actually really do agree with all of my reasons to just leave it alone and think I am right?!?!"

I very quietly and grudgingly muttered, "Yes.", then caught a glimpse of what looked like a very smug and satisfied expression.

"Don't get used to it, pal.", is what I wanted to say. Instead I went in the other room to leave him in peace to eat his lunch.

Take that, mister man! ;)

That Awkward Moment...

...when you need to use the restroom at the hospital where your child is receiving an IV infusion and you knock gently on the unit's bathroom door and even more gently whisper, "Hello?", and when you get no response you are convinced you hear voices so you proceed back to your child's infusion room to wait a bit longer rather than lurk outside the bathroom door like some sort of weird creeper but you really need to pee so you decide that enough times has passed to try again even though only about sixty seconds have passed so you yet again go through the polite bathroom motions of knocking and question-y whispering as though you're getting sworn into some sort of secret society only this time when no one answers you realize it's either embarrass yourself by walking in on someone or embarrass yourself by wetting your pants so you bravely push open the door while trying to sound apologetic yet friendly at the same time as you start to say, "Anyone in here?", only to realize that not only is there no one there, it is a multi-stall bathroom and you could have gone in the first time around without knocking on the door.

...when you realize that the hotel you "karate chopped" your way into by "naming your own price" is, in fact, quite fancy, and you need to tip three different people just to get from your car to your room, and while waiting for the bellman to arrive to take the luggage (which in your case consists of one rolly suitcase and multiple tote bags filled with things like diapers and oxygen bottles along with dog food and an Adidas duffle bag-because we're super fancy like that) from the valet,  you ask him where you might be able to take your dog to the bathroom and when he tells you there is a park right outside across the street you nod knowingly (because your are putting on your very best 'oh yes, I stay at nice hotels allllll the time and thus will act extra sophisticated and self assured), thank him, and then proceed to go in the wrong direction and end up outside on the opposite side of said fancy hotel and when, in desperation, you figure it's Boston so maybe they consider concrete areas to be a "park" you take your dog over to pee only to realize the next morning when the valet takes you to your car on the "right" side of the building that there was a park with grass all along and you had had your dog just let it go in a pretty nice sitting area where dogs are most definitely not welcome to go potty...at least according to the sign I later spied.

...when you finish up with the infusion appointment and triumphantly post a Facebook status about it only to check into your next appointment to find there is still another one right after it and you have no idea with whom or why. In fact, you're not even entirely sure who the appointment you knew you had is with or why but you keep repeating the word 'Physiatrist" almost like a mantra to your confused husband so you can feel superior that at least you know why your child has an appointment while silently throwing up prayers that you are right so you don't have to admit to him that you are, in fact, as clueless as he is.

...when you meet a friendly lady in the hallway on the way to your appointment room and she is super nice and very chatty and tells you her name (which you immediately forget) and you still don't know who she is but she informs you that an emergency has just popped up but she will be right back and will definitely not make you late for your other appointment (that you didn't know you had until then) so you go in and wait for this mystery appointment to take place.

...when the resident comes in and takes down all of your child's history and through vague questions, because God forbid you sound as stupid as you clearly are, you determine that this is the resident for the person you are about to see and you start to feel pretty smug about your detective skills but then the mystery hallway lady comes in and and the resident leaves without really talking to this lady but says she'll be back and you still aren't sure why your child is seeing this hallway lady so you once again ever so cleverly (at least in your own mind) tip toe through a minefield of vague questions to try to figure out what it is exactly that this person does in the hospital you ask if she can help you stay on the Complex Care Services team because in your infinite wisdom and deductive prowess you have determined that they are a nurse who is there to help coordinate care for the upcoming spinal surgery. Then you start gush about how awesome your child's CCS pediatrician is and you just love her and have such a great parent/doctor relationship with but then she interrupts you to say that actually she is your child's developmental pediatrician on the CCS team and the doctor you have been asking to stay in touch with and have been gushing about for the past five minutes moved out of State quite some time ago so you desperately try to back peddle into safer conversational waters and come up with a gem like: "So I guess what I'm trying to say is that we don't want to lose you!", even though you literally just met and could not repeat this person's name back to them if your life depended on it. Also, turns out that this appointment that you had no idea was even happening was a very important once as it is the over-arching, t's crossed and i's dotted PRE-OP appointment for your child's spinal fusion surgery.

...when the last doctor you see for the day actually is the physiatrist, because gosh darn it, you knew that your kid had an appointment with a physiatrist because you are a good mother like that (not so much), and part way through chatting with that doctor, in walks the resident who you thought was the resident for the developmental doctor who you originally that was a nurse and you realize that she was the physiatrist's resident all along so you keep up with the charade that you do in fact have your sh*t together even though it must be abundantly clear to anyone that has spoken with you that afternoon that you don't.

...when you realize that this post is basically a bunch of run-on sentences with very poor grammatical structure and you're just too tired from pretending that you have a clue to even care.

#awksauce #pasttensepresenttensenotense  #Tessisstillalivenothankstoherparents #ihatehashtags

It takes a village...

...or at least a couple of strong boys willing to help.

Last weekend Charlie finally got to cash in on his Christmas present from Blake and Ellie when they all went away for the weekend to a camp on a lake.

Fishing, games, boat rides, kayaking and all without any of the usual interruptions. Just Charlie, Blake and Ellie for some father/daughter quality time. To steal a line from Martha Stewart, "It's a good thing."

The problem with all of them being gone at the same time is that it leaves just the Toodle Bug and me.

Home. Alone.

And for those who do not know already, I can't lift her myself due to her size and my terrible, horrible, sucky, stupid, fibromyalgia which, as an added bonus on top of the daily chronic pain, causes acute muscle spasms in my back when I over exert myself.

So yeah, knowing that I was all alone with a kid who may need to be lifted out of her wheelchair for something as simple as a diaper change, to something as serious as a seizure, left me feeling rather stressed.

Enter Bobby and Hunter. Literally.

For those who don't know (though most do), Bobby is Blake's boyfriend and Hunter is Ellie's.

Late morning on day one, as I smelled a familiar odor in the air swirling about Tessie, I began to wonder how I was going to get the poor kid into a clean diaper. It seriously stinks (pun intended) to know that she is stuck sitting in something that has to be uncomfortable and can cause other issues (skin breakdown is a real issue for kids who don't move much and add a dirty diaper into the mix and you up the ante considerably on getting problems) all because I couldn't move her myself.

I was starting to feel like the worst mother in the world when, to my ever so happy surprise, in strolled Bobby. He had just gotten in from haul and even before going home to shower, he stopped by to see if Tess needed to be moved. Now that's a good guy.

Bobby got Tess on her bed so I could change her and when she was decent for boys' eyes again, he came back in her room to put her into bed for her afternoon nap. When I told him I thought I would most likely have help getting her back up, he said he would stop by in a couple of hours anyway, just to be sure.

But a couple of hours later, in walked Hunter. Again, just checking to see if Tess needed to be moved. Again, good guy. Plus, yes, she did need to be moved. So Hunter got her back in her wheelchair with plenty of assurances to me that he would be around and to just call if I needed him to come back to put her back in bed for the night (but Bobby had already said he would do that so Hunter got the night off).  Bobby came just after Hunter had left to be sure Tess had gotten out of bed from her nap.

The rest of the weekend went much the same way with the boys either just showing up at the right time or with me sending them an SOS on Facebook to which their immediate response would be, "No problem, I'm coming."

Basically, those two boys kept Tess's life running just as it usually does, just because they knew help would be needed and because they knew I was worried about being home alone with her.

Good. Guys.

Not to mention,  Tess got the thrill of being carried around by her sisters' boyfriends. Trust me when I tell you, she just LOVES when that happens.

I'm just thankful they were willing villagers last weekend.

Bobby cruising Tess around the house 

And Hunter doing the same thing

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..... ;)

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...  ;)

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.

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. ;)

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.

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