Tuesday, July 26, 2016

Seizures and Sass....


Tess's seizures are back; with a vengeance.

I'm trying not to get all overwhelmed and freaked out by them but we've had to use rescue meds four times this month and almost had to double down on them a couple of times because her seizures weren't stopping with the first round of the rescue meds.

I mean, I hate to sound whiny but COME ON! (said in my very most whiny voice)

The longest one was twelve minutes and last night's was nine and was a type I had never seen before. Well yeehaw, cowboy.

 Tess's average "bad" seizure lasts around three to four minutes but every ten days or so, she throws us a curveball and doesn't stop until rescue meds are given and even then, continues to seize for a few minutes after. Other times she'll stop her tonic clonic seizure at around 3 to 5 minutes but then cluster into tiny focal/absent ones. That can last twenty minutes or more. And those are super special because it's so hard to tell if it's seizures or just her postictal phase so I'm questioning and doubting myself about whether or not she really needs the rescue meds because WHAT IF she's not still seizing?

Side note: when I called her pediatrician in the middle of one of these events and he left a patient to come talk to me on the phone (even though I told his nurse to just give him a message), he immediately told me to give the rescue meds and to stop doubting myself. "You know her better than anyone, Mama Reidy. If your instincts are telling you she needs the rescue meds, as her doctor, I'm telling you to listen to those instincts and GIVE THEM." Yup, he's a good guy.

While the seizure is rolling through her little body like an earthquake, I hover helplessly over her, rubbing her arm and telling her that, "Mama's right here. You're okay, it'll be over soon.",  and praying that I'm right. I hook up her o2/heart monitor and watch the numbers. Willing the heart rate to come down and the oxygen to stay up. When they do come to an end, she lets out a big, shaky sigh. Catching her breath, I think. Then she'll sort of look around like, "What's going on?". Sometimes she laughs at me because I am so close (all up in her grill so to speak) and calling her name, and she is finally hearing me and thinks it's great fun. Other times the "earthquake" has left her shattered. Completely wiped out and so she'll sleep for a few hours.

For my part, once the seizure is over, I sit right next to her, monitor her oxygen, heart rate and respirations, and watch for her to wake up and seem more like herself as the word SUDEP! SUDEP! SUDEP! races through my brain like some sort of psychotic mantra. I wish I had never heard of SUDEP. Before I knew about it I could at least feel like once the seizure was over, the real danger had passed. Now I know different and the real danger could happen hours later.

Double sigh.

Many calls to her local doc as well as her doc in Boston have been made over the past three weeks. She's had blood draws to check med levels and then med increases that haven't touched the seizures.  I expect more med increases or a whole new med will be added to her daily regimen when I hear back again from her doc in Boston.

In the midst of all of this, there has been some fun, and funny stuff going on.

We've been trying to get in some "talker" time on her good days. In fact, just the other day my little queen was using her talker and I was jabbering back answers and was starting to ask her a question when I heard,

"Be quiet."

Um what the what?! Had my little angel just told me to be quiet?!

I wondered if maybe she didn't mean to "say" that and her eyes had landed on the wrong picture on her talker...you know, by accident, because she is still learning where the words and phrases are.  So I started to ask her the same question again because I assumed that my precious sweet little princess would never want to tell her most beloved mama to be quiet!  Well, you know the old saying about assuming things, right? Yeah.

"Be quiet."

Okay, now I knew she was for serious and I was really quite offended! In the words's of Stephanie Tanner, HOW RUDE!

I proceeded to tell Tess that telling someone to be quiet when they were asking you a question was not nice. It was rude and could hurt people's feelings.

"I love you."

Yup, the little stinker could tell I was not happy with her and decided to sweeten me up in a way that she knew would melt my mama's heart.

I immediately stopped my lecture and jumped up, wrapped her in a big hug and said, "I love you too!!!" (I was so happy she had told me she loved me that it was almost pathetic. Almost.)

Tess's response?

"Be quiet!"

Me: "TESSIE!!"

Tess: "I love you!"

Me: "I love you too!" (officially pathetic now)

Tess: "Be quiet!"

Seriously, I don't know where this kid gets her attitude from!

Must be her dad. ;)

Tuesday, July 5, 2016

Music to my ears...

Most of you who read my blog also follow Travels with Tessie Toodles on Facebook or are my FB friends, so you already know that we've been working hard on AAC with Tess. We went every other week to Boston Children's AAC clinic in Waltham for five trials with the Tobii eye gaze device.

Tess was a Rockstar. Rock. Star.

It's one thing to know your kid is smart, but to see her really strut her stuff so to speak (a little pun there for ya) and work that device like she's been doing it for years was just amazing to see. And to hear the AAC specialist rave on and on about how thrilled she was with how well Tess took to it and how smart she is was such sweet validation for me that I could have easily cried many tears of joy. It's just that we normally don't hear so much good news in regards to Tess at any one time and I often feel like people don't necessarily believe me when I tell them how smart she is so for her to sit there and prove it, well, what can I say?  I was so beyond proud of her.

After our last appointment at the clinic we got to bring home a Tobii on loan from the hospital. Because Tess was doing so well with it, her specialist had flagged her as a priority to get one and even went so far as to take one that came back from another kid who no longer needed it and hid it in her office to be absolutely positive that Tess would get it. Have I mentioned how much I adore Tess's therapist?

The Tobii has many pages Tess can open, that then open more and more words for her. She's doing pretty well at finding them and right now, that's our main goal. For Tess to have and find words. All the words. It gets a bit frustrating at times because she's still learning how to use it all appropriately and not just get random words to speak out loud.
a Tobii like the one Tess has at home with one of the pages of words open

When we brought it home she quickly found the "I missed you.", and the "I love you.", buttons for Ellie and looked at them repeatedly to make sure Ellie fully understood how very much Tess missed her and loves her. Cuteness overload. Then I wanted a video of Tess using it with Ellie so we switched to the "simple" yes/no/I don't know page and asked Tess a few questions. This is the video of that:

We try to get Tess to use "the talker" at least once a day for a little bit. She enjoys it but it can make her tired because it is harder than you would think to only use your eyes to make selections. Also, she has this thing about not wanting me to know how truly capable she is. She just will not work as hard or as accurately for me as she will for the specialist in Boston (or basically anyone else for that matter). It's so frustrating because I KNOW what she can do because I have SEEN her do it. I don't know why this even surprises me anymore because she does this in every area of her life. Take PT for example; stand tall and weight bear for the PT but collapse for mama. Sit tall for the PT but fall back on mama and cry like it's all just too much and mama is so mean for making her do that. Like I said, frustrating.

The other thing we have come to realize with the talker is that Tess has the ability to hurt your feelings and/or be rude. Let's face it, she's never been taught what being rude or mean are because she really couldn't be all that rude or mean with no voice/words to let people know what she was really thinking. It's not like she is purposely trying to hurt anyone's feelings or be rude. I mean, she's just about the most loving and sweetest kid I've ever known but she does get to have a say now and she is making the most of it.

During PT the other day, at the end of the session after we'd gotten her back in her wheelchair, her PT didn't like the way Tess was holding her head and went to adjust it on the headrest. Tess's eyes FLEW to her talker and the next thing I know I'm hearing, "Get away from me!", and right after that, "I don't like that!". When the PT explained to Tess that she needed to adjust her head for Tess's own good Tess, without missing a beat, looked to her talker and said, "Whatever.".

WHATEVER??!! Rude!

But so damn age appropriate to say, not to mention how perfectly Tess had stated her thoughts,  that the PT and I were all but jumping for joy because....WORDS! COMMUNICATION! In Tess's world, just like in ours, words are what? POWER! Tess had the power to say, "Get away from me.". And then to explain, "I don't like that.", and to even make sure her little teenage diva self got the last word in with "Whatever".

I swear, it was like music to my ears. My nonverbal kid is talking. Well, back talking but hey,