Sunday, October 4, 2015

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'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.  :)

Wednesday, September 2, 2015

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.


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! ;)

Thursday, August 13, 2015

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 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

Sunday, August 9, 2015

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

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.


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.


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.


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.


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


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

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

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

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

No dice.

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

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

Tess's sweet ride

look at all that blue

I'll admit that I like her name there

the controllers that the boys just love

Bobby, cruisin' around the house with Tessie 

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

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

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

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

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

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