Saturday, November 12, 2016

Yin and Yang

When you have two kids who are neurotypical and one who is not only NOT neurotypical but also medically fragile, you live in an odd space in the universe.

That space of lecturing one child (back in the days of high school) that her 91 "had better get pulled up to at least a 94 or there will be consequences.", to laughing off a ridiculous warning letter from the State of Maine that your special needs kid is not even meeting the special needs requirements for improvement.

You yell and scream at sporting events for your neurotypical kids to, "Run faster! Get the ball! Don't you dare give up or let the other team push you around!", and then go to a Special Olympics event and make your kid who is pushing her special needs sister in the 15yd dash take a dive so another kid can get to also have a blue ribbon.

It's a world where you leave your kid in the hospital with her dad as she is fighting pneumonia and rush to get to an Awards Luncheon with your eldest kid who has won a pretty sweet scholarship and you just REALLY want to be there with them to celebrate that.

It's then going back to your island home only for the night (while fervently praying that the child in the hospital does not get worse in your absence) because it's your middle daughter's Junior Prom and you want to be there for the getting ready, the pictures, and because an adult SHOULD be home on prom night just on principle. Also, to make sure they know that they, and the things going on in their lives, are equally as important as the very opposite things that their sister is going thru.

Where the Easter Bunny visits the hospital and your two older kids have to remind you that it's okay if Christmas is also in the hospital because their sister is sick again and the doctors are saying you probably won't get home.

It's having your kids graduate high school as Salutatorian and Valedictorian respectively while knowing your special needs child's school experience will not even be close to their sisters.

It's dropping off your medically fragile, special needs child at a beloved friend/former home nurse's house in order to be able to attend Awards Night at your eldest child's college because her faculty advisor had personally contacted you so you would be sure to see your child be awarded the Department's Education Award.

It's watching with amazement and so much pride you feel like your heart might just explode from it, your kid, who has never been able to talk, tell you for the first time at thirteen years old, "I love you.", using an eye gaze device and then hearing her sass people with it with INTENTION. It's validation of all the things you knew your kid was capable of only now, no one can deny it or try to make it seem as though you're only seeing what you're wanting to see.

It's a constant push/pull of awesome and sucky. Easy and hard. Joy and Sadness. It's both/and. Every single day.

This morning Tess had a seizure that last just under thirteen minutes. She had only been awake and out of bed for about a half an hour before it hit her. After giving her three rescue meds and waiting for them to do their job, we put her back into bed knowing that she would most likely sleep the rest of the day.

It was only nine o'clock in the morning by that point but we were already just exhausted from the mental toll it takes on you to watch your child go thru that. Then there is the fear that rings in your head with every alarm from her 02 monitor, "SUDEP! SUDEP!", so you get to keep that nice level of stress going even after the initial seizure has passed. And because the amount of meds that we had to pump into her body depresses her already shallow breathing, she has alarmed A LOT. I finally caved and put on her much hated CPAP mask to try to help her get a restful sleep. It makes me want to cry when I make her wear it because she hates it so much but I fight back the tears, tell her how brave she is and how strong she is and how much I love her and walk away feeling like the biggest shit head around.

the hated CPAP 

Then I walked out to the mailbox and found this:

proud proud proud

Ellie was invited to join Omicron Delta Kappa National Honor and Leadership Society based on her "superior academic achievements" and "exceptional leadership ability." All this while taking pre med classes.

My mood instantly went from scared and sad for one kid to completely happy and proud for the other.

This is the Yin and Yang of my life.

It's bizarre and scary and awesome and, as the saying goes, "gives me all the feels."

In other words,

It's good.

Monday, September 5, 2016

To Blake, on your first day of school...

Dear Blake,

Tomorrow morning is your first day of school. As your mom, that thought has taken up a major amount of space in my brain today. It's absolutely crazy to me that the day has come. You are going to walk into that school tomorrow morning, head to your classroom, and....


What the what?!?!

HOW is it possible that this little girl (see photo below) is now going to be a third grade teacher AT the same school where she went to third grade! Didn't you JUST graduate high school? Where has the time gone?!

Blake getting a snack and talking it all over with Papa after her first day of Kindergarten

I got to go into the school with you the other day  and take a look at your classroom. I was so proud of you as you showed me different things and spoke with passion and excitement about what you were planning for "your kids". You have a huge heart for kids and a basic belief that all kids are good. All kids can learn. All kids deserve second chances. That every day should start with a clean slate. And most importantly, that all kids deserve respect.

You are the teacher I would have wanted for you and your sisters.

I remember the day, several years ago when you were at UNE and you called to tell me you were declaring K-8 Education as your major. At the time, your sister was planning to go to college to major in Theater Performance. You said to me, "Mama, I guess Ellie is going to be the star of the family. I want to teach."

Since then I've watched you sub at our school all thru college on all of your breaks, intern at schools on the mainland, and eventually get to student teach your own class. You light up when you're with kids and you light up even just talking about them; your hopes and plans for them. And your attitude is contagious.

There will be hard days. Discouraging days. And just plain old bad days in general. On those days, and I'm guessing they will be few and far between because of who you are and your general positive outlook on life itself, always remember how you thought and acted when you were that age. That being a kid can be hard and confusing. Remember that there is a world of difference in a child knowing that you're disappointed with their actions versus being disappointed with them as a person. Always be sure they know it's the former, not the latter. As for the rest, let's face it, you already now more than I will ever know about teaching and so I think it's safe to say, "You've got this".

And to go back to that "star" comment for just a minute, I've got news for you, kid. To me and your dad (and our family), you are a star. One that gets to shine on and influence little minds. And lucky them for getting to be in the glow of your light. 

Wednesday, August 31, 2016

Card Carrying....

Some of you (my FB peeps) may remember me ranting pretty savagely a few weeks ago about medical marijuana and how hard it was to get for kids who really needed it.

My FB rant

Turns out I was right.

And, I was wrong.

After taking the advice of a couple of people who commented, as well as a relative who privately messaged me, I called Integr8 Health in Falmouth and, feeling like someone was going to call DHHS on me at any minute for even posing the question, shakily asked the very kind lady who answered the phone if kids under the age of eighteen could legally qualify for medical marijuana. Kind Lady asked me why I was pursuing it for my daughter. I told her about all of Tess's disabilities and most importantly, about her struggle with uncontrolled epilepsy and how it was escalating and we had maxed out all of her current drugs and were now having to look at adding even more, and how I just couldn't NOT check into this instead. I also told her I was scared for Tess. Kind Lady got even kinder and told me that with kids, the doctor needed to see them in person, whereas with adults, other people could do it (nurse practitioners, etc) but he was only in that office once a month and tended to book quite a ways out but that she thought he'd want to make Tess a priority so she actually put Tess into the doctor's schedule even though he was "booked" while mumbling about moving that patient out a little bit and then, when I apologetically told her that still would be tough due to the ferry schedule, she moved yet another child to a different time and slid Tess into that one so we could make it a day trip. And the icing on the cake was that Tess would be seeing him in three days. THREE DAYS!

Honestly, it felt like angels were guiding things to make it all work out so smoothly.

I still had a couple of hurdles to jump though. I wanted her primary care doc, Dr. Stephenson, to be aware of what we were up to. I mean, can you imagine if Tess had a bad reaction to the marijuana and we had to take her to the hospital and fess up to her doc that we had been giving it to her without him even knowing? Um, no thank you. I was so nervous about telling him that I literally dreamt about it the night before and in my dream he was pissed! Not a good omen. But, I gathered my courage and called him the next day and he was totally fine. He had a few concerns and definitely wanted to be sure Tess's epilepsy doc in Boston knew about it and was on board, but he supported us and our reasoning for going this route. He also thought it was quite funny that I had dreamt that he was mad at me. "It takes quite a bit to get me mad.", he told me. "Yeah, well it takes a lot to get Charlie really mad too but you know it when he is!", I responded. He just cracked up at that.

I didn't bother calling the Boston doc because, as fate would have it, Tess had an appointment with her about ten days after her Integr8 one.

I have to say, it was rather bizarre to roll my little girl into a marijuana clinic. And we got a few strange looks as well but that could have been because we had the dog with us. Or just because Tess gets stared at. A lot. So who really knows why we got the looks. I was feeling judged only because of my hang ups about it, I'm sure.

But I digress.

We met with the doctor and his nurse for about an hour. I was so impressed by the doctor! He really knew his stuff (literally and figuratively *wink*wink*). He addressed all of our concerns about trying marijuana as well as our hopes for it and even talked about benefits to Tess we hadn't even thought of. It's hard to explain all of it (there was a lot!) but it was so interesting! My biggest concern would be that Tess would be "stoned". The doctor, and Charlie, both looked at me and Charlie said, "She already is.", as the doctor concurred with him. Like the doctor pointed out, many, if not all of the meds that Tess currently takes alter mind chemically and his opinion was that marijuana would barely affect her in that way. He was also hopeful that we could eventually wean her off of other meds IF the medical marijuana proves successful.  He discussed how he wanted her to take it, (an oil that would drop under her tongue) as well as using a rescue med version for when she is actually seizing. I didn't even know we could do that! He mapped it all out for us right down to the way he wants the tincture made up. We will give it to her three times a day and start with the tiniest amount and go from there. If one type of marijuana fails, there a two more he would try, all at varying dosages. Much like we would do if starting any new seizure drug. He was very realistic with us and told us that some kids are not helped at all by marijuana but that he was very hopeful. So are we.

The part where this gets a little tough is the getting it part. For kids especially, the doctor only recommended one clinic in Maine that makes what he wants Tess to have and then, once we get it, he wants us to have an independent lab test it to make sure it's EXACTLY what he is "prescribing" her. I think it's awesome he's so cautious but it means a lot of extra logistical maneuvering for us. Because the Federal Government refuses to legalize medical marijuana, even though States like Maine have, we can't have it mailed. I'm not sure about UPS or FedEx but my guess would be no. I'm going to look into though. It takes about two days for the lab to test it so we need to figure out how to drop it off and still be able to pick it up without having the added expense of having to stay on the mainland and/or making two day trips which means Charlie taking even more time off from work. And bonus? Insurance won't cover the cost. It's all out of pocket. But, we'll figure it all out. We always do.

At any rate, we went to Boston and got the green light from her doc there to try this instead of going to the next pharmaceutical drug she would prescribe. Of course, we will be keeping her in the loop as we go. In my mind, Doc B is the Head Coach with Doc S at Integr8, and myself, as the assistant coaches. I'll always follow Doc B's lead and insist everyone else does as well. It really helps that she is very open minded and understands that as parents, we feel like we NEED to try this. I even posed the question to her if she thought it would be hurting Tess to not go to the next pharmaceutical drug but she said to try the medical marijuana and if that didn't work, we'd go from there. She simply requested that we admit defeat if/when we knew for sure it wasn't working because it's been her experience that parents want so badly for it to work, they hesitate to admit when it's not. I get it but I assured her I was not that kind of parent. I'm a realist. For good or bad, I'm pretty quick to call things as I see them.

The last hurdle was to get the State of Maine to sign off on a medical marijuana card for Tess. Apparently, because she is a minor, she had to get approval thru DHHS. I can happily report that Integr8 took care of getting that done and Tess was approved.

We haven't had a chance to go buy her the "stuff" yet. We will soon.

Meanwhile, my baby is a card carrying stoner girl and I couldn't be happier about it.

And not for nothin', many thanks to my awesome friends who jumped in during my rant a few weeks ago to comment with their support and outrage, and especially their helpful advice that led us to Integr8.

Fingers crossed!

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 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,


Thursday, April 28, 2016

The Special Needs life, Game of Thrones style...

For years my dad has tried to get me to watch The Game of Thrones and I just didn't think it was something I'd enjoy. It sounded too intense, too violent, too everything I tend to dislike in my TV viewing. Then Blake and Ellie joined the bandwagon and my interest peaked a little. They both loved it but still, I was hesitant. Finally, when the excitement for the new season on pretty much every social media platform, as well as within my own family hit a fever pitch, I caved.

But as Frank Sinatra sang, "I did it my way."

I read the books first.

You see, anyone who knows me knows I am a bookaholic. Cannot get enough books. Ever. I even bought a shirt that reads, and I quote,

"My Patronus is a bookworm."

oh yeah, I totally own this most awesome shirt.

If you can't place where the word Patronus comes from, here's a hint, start reading Harry Potter, stat.

But I digress.

I LOVE this series. L. O. V. E. it. The word obsessed comes to mind.

So the other night as I was reading the report of Tess's initial trial with an eye gaze talking device after a most successful second trip to Boston for Tess to work with it again at the Augmentative and alternative communication (AAC) clinic, my mind flashed back to the report that the Maine AAC "guru" had sent us after he had evaluated her for the same program last October. Let's just say that his report was less than enthusiastic about her cognitive abilities and overall level of awareness (a totally opposite report than what I was reading from the Boston clinic-yet another reason we go to Boston instead of staying in-State-not to mention that it didn't jive at all with the smart kid that I know),  and I immediately thought of a quote from my new fave series, The Game of Thrones, which then led me to placing other famous/infamous GoT quotes with other situations I tend to find myself in within this special needs journey.

Here's my special needs life summed up in Game of Thrones quotes:

What I want to tell the AAC "guru" from Maine:

What I think after IEP meetings:

My reaction when the school fails to follow thru on IEP promises:

How I feel when other kids hit big milestones (walking, talking, sports, school plays) that Tess won't:

When I'm trying to make myself be brave when Tess is sick or having seizures:

And again, oftentimes a daily struggle of bravery and faith vs. fear:

How I feel when making major decisions for Tess:

Any time the mama bear in me has to come out:

How I feel when I fire someone from Tess's "team".

And lastly, because we live where we live and I dread the rough ferry weather. My thoughts at the end of every September:

And there you have it. My special needs life summed up in Game of Thrones memes. I would apologize to those of you who are reading this that aren't at all familiar with the show except I'm not sorry. I just love it too much. And I did sort of warn you.

Obsessed. Remember? 

Saturday, April 9, 2016

Catching up...

Hold crap on a cracker! It's been three months since I've written a blog post!

I guess time flies and all that.

Let's see...when I last left you way back in January, Tess was having difficulty at night with her breathing as well has having an increase in seizure activity.

Three months later and we're in the same exact place except things are rapidly escalating. And bonus, getting any rest at night, It's not in the cards and hasn't been for a while. Toodle Bug's alarms are literally screaming at least twice an hour every single night. Sometimes it's her oxygen alarm, sometimes her heart rate alarm. So it's just been a barrel of laughs here at the ol' Reidy Homestead. Because nothing makes you feel like laughing more than fear mixed with lack of sleep.

Tessie has been officially diagnosed with Severe Obstructive Sleep Apnea and it was noted on her report that she is having as many as one hundred forty three episodes per night. Yes, you read that correctly, on average, 143 times a night she has an apneic episode and her oxygen drops down to the low eighties (and yes, she has her mask oxygen and it's dumping some much needed o2 into her but it sometimes isn't enough even with that to keep her o2 levels up) , her heart rate and breathing spikes due to the amount of hard work her little body is doing to simply breathe, and the alarms scream.

Oh, and the dog whines. This past week especially. Coincidentally this past week has been the worst one yet as far as Tess's apnea goes. Ya think she's onto something? And Oreo doesn't whine with the alarms. No, it's during the silence. So, really, very very little sleep for me lately. Charlie meanwhile hears no alarms, no dog whining. Sleeping like a baby as I go into full on martyr mode with a dash of the Little Red Hen thrown in for good measure. "Fine! I'll just do it myself!".

Side note: can you guess what Charlie DOES hear? Anyone? Anyone? Bueller?

If you guessed "Joanna's bitching and moaning", DING! DING! DING! You got it!

But I digress.

One night, after my third time down to check on her and readjust her oxygen mask, I had just gotten back into bed we the alarms rang out. I did make Charlie get up then to deal with it. He came back to bed and pretty soon, more alarms. What the what?! I looked in the baby monitor and her mask was on. I just couldn't figure out why she was alarming so bad with oxygen on. Even the dog was whining. Cut to the next morning when I go in to check on Tess and see that the tubing running from the oxygen mask is hooked up to....wait for it.....NOTHING. It had fallen off the oxygen concentrator onto the floor, and in our exhaustion in the night, we'd never noticed.

Holy Morons, Batman! Yup, we're idiots. Or just really really sleep deprived. I'll let you decide.

Tess is scheduled for a bronchoscopy test in a couple of weeks to see if they can find a reason for the obstruction and hoping that it will be something a minor procedure can fix. Otherwise, more breathing equipment will be coming. Ugh.

And just for fun Tess decided to totally freak me, and a few other people completely out yesterday while she was at school.

As I was dropping off Tess in the morning, I noticed Oreo alerting. Well, Oreo alerts A LOT so I told Tess's nurse just to be a little extra vigilant and off I went. A few hours later the nurse called from school concerned that Tess was very sleepy, hard to wake up, and that Oreo just wouldn't stop alerting.

Hmmm...mildly concerning but we agreed that she would just keep an eye on Tess and call me right away if anything else happened. Not thirty minutes later the phone rang again. I picked up expecting the nurse and got the Principle requesting that I come right to school because the nurse wanted me to come check on Tess.

Naturally  I wasted no time in getting there and found them in the Principles office. The nurse looked upset and the Principe seemed quite concerned. Tess looked ok. Not great but not bad. Then they told me what had happened.

They had managed to wake Tess up and were sitting in the cafeteria during lunch and Tess went from totally awake to totally asleep in the snap of a finger. When they tried to wake her, she was hard to wake up and once awake, pretty out of it. This was also apparently what she had done a little earlier in the morning.

We agreed I'd take her home and the nurse rode in the car with me so I wouldn't have to be alone with Tess. The Principle sent someone to my house to pick up the nurse once Tess got settled. And on the way home, I got to see for myself what they had been talking about and let me tell you, allllll the bad and scary thoughts went thru my mind when I saw that. SUDEP. Cardiac issue. Some type of new Seizure. Sudden drop in blood pressure. Lack of oxygen. All of the above. I just didn't know. all I  did know was that it wasn't right. And I don't know how to explain why is felt so wrong except to say a mama knows her kid and literally has a physical response in her own body when their kid is in any kind of trouble. Needless to say, my whole body responded.

We got Tess into her bed and by this point, she seemed pretty happy again and quite pleased to have gotten to come home, lay in bed, and, gasp, even get her movie! She does crack me up even while she's in the middle of giving me a heart attack.

I spoke with her pediatrician that night and told him all of my worries about her sleep apnea, seizures, and those two weird "sleep/fainting" episodes at school. He didn't like it and wanted to see her but also understood my reluctance to bring her over only to have her totally rebound and be like nothing is wrong, doc. Just my crazy mama. Because she's been known to do that to me many a time. So we compromised and agreed I'd bring her to see him on Sunday if she had a bad weekend or any more of those weird episodes.  He also told me to call her pulmonologist on Monday to tell him how bad her sleep apnea has been and to try to push up the testing if possible or at least get her some help for her ragged nighttime breathing and not to wait two more weeks for something to help her. I did make the mistake of asking him if I should be very worried and he told me I should be "concerned". And me being me, just about shrieked at him, "That's not what I wanted from you! You were supposed to tell me I was overreacting!"

I know, he's so lucky to get me as a mom to have to deal with on a regular basis. I'm sure he just counts his lucky stars every night for that.

As usual our phone call ended with us both agreeing that Tessie was pulling a Tessie and then he laughingly said, "This is what my girlfriend likes to do. She'll go along pretty good for a while and then decide she wants to shake things up and throws a bunch of issues our way just to keep us on our toes."

Truer words were never spoken.