Toodle Bug Update...

For those that read my blog and are not my FB friends, I'll give a quick recap:

Around the beginning of December Tess came down with a respiratory infection. We treated her at home with antibiotics and she appeared to be getting better. Then, about eight to ten days into that particular course of antibiotics, she started to become symptomatic again so we switched her to a different antibiotic and once again, she seemed to be getting much better. After that ten day course of antibiotics, she seemed good until about three days after they were finished. She woke up this past Monday morning with all of her symptoms only they were worse, and by Tuesday was running a fever. I called out the on call island doc who came to the house and agreed she needed a shot of antibiotic. He said he would be back the next day to listen to her lungs again and decide where to go from there. After a couple of pretty rough nights with lots of suctioning and the need to put her on oxygen support, the island doc came back, listened to her and said he really felt like she needed to go to the hospital and at the very least, get blood work done and a chest xray. Me being me and really hoping to buy some extra time to pack, actually asked if he thought we had time to wait for a later ferry rather than the next one that was due to leave. Long story short, I got packing and we got on that next ferry.

We went thru the ER at the local hospital that her pediatrician works out of on the mainland and they did the blood work and got her right in for the chest xray.

It wasn't ten minutes later that the ER doc came back into Tess's room and told us her xray was not good and that her whole left lung appeared full of pneumonia. He then said he wanted her transferred to a bigger hospital, especially since there was a storm coming the next day. So they loaded Tess up in the ambulance and I managed to talk the hubby into riding in it with her (because I absolutely hate riding in the back of those things) and they were off with me following behind in our van.

Tess was brought into the ER at Maine Medical Center and it was confirmed that she had a nasty pneumonia and would need to be admitted. They were also worried about a plural effusion because there was just no breath sounds in that left side. Luckily, that was negative so Tess was moved to the regular children's floor in the Barbara Bush Wing rather than the PICU.

Per usual, Tess has done what Tess does best. Which is to say she takes three steps forward then two steps back. She will seem like she is rallying, then all of a sudden it's like the pneumonia is starting to gain a little bit of ground, then she fights back and seems a teensy bit better again.

Needless to say, my nerves are shot.

But, as I type right this minute, she seems a little better and her doctor is hopeful that by Monday she will have really gotten ahead of this and may even be able to be released. Of course, because it's Tess, he also has a plan B. If she isn't markedly better by then, he is going to perform a procedure on her called a bronchoscopy and literally go into her lung and pull that gunk out himself as well as take a small camera to look at the lung to be sure there's nothing else going on in there that would be making it harder for her to heal up from this. He will also get a sample of the mucus to send off and see what particular bugs might be growing in it (again, only if she isn't better by Monday).

This morning I was able to take the oxygen off of Tess for a little bit and when I asked her if she was feeling a little bit better, she stuck her tongue out (which is one of the ways she "says" yes).

Then she proceeded to destat, requiring oxygen again, and then have a nice big seizure during her breathing treatments.

See? Three steps forward. Two steps back.

But it's the forward that I'm holding on to.

And now I will leave you with a few little extra insights into our hospital stay:

Yesterday, about 2:00 pm.
Me to the nurse after looking at how high Tess's heart rate and respirations were: Are you giving her Tylenol or Motrin preventatively for her fever?
Nurse: No, but we can.
Me: Well, I think we need to take her temperature now. She's very hot and her heart rate and respirations are really high.
Nurse: Sure. (She then proceeds to take it under Tess's armpit which is COMPLETELY INEFFECTUAL and I've told them this repeatedly)
Nurse: 99.4 No fever.
Me: That's not accurate. I know she has a fever. You need to do a rectal temp.
Nurse: Well, we'll just give her the Tylenol.
Me thru gritted teeth and fake smile while really wanting to shred this nurse into little pieces because with a sick child, we NEED to know how high the fever is and not just treat it without knowing: Sure.
The nurse leaves to go get the Tylenol and I rush to my bag and grab Tess's rectal thermometer, pop it into her little bum and get the reading.
The nurse walks back into the room.
Me: It's 101.7 NOT 99.4 I took her temp.
Nurse didn't even bat an eye at the total screw up of trying to tell me that Tess didn't have a fever only minutes before. ARGH!

Last night: Respiratory therapist for the nightshift comes in to do breathing treatments. I swear to God, she looked like she had just stepped right out of an 80's music video. Seriously guys, bangs for DAYS totally teased and hair sprayed into awe-inspiring heights complete with heavy purple eye shadow and a take no shit attitude.

I loved her.

And then Tess's nurse today was one who took such good care of her a couple of years ago when we were here with another nasty pneumonia. She's an older lady;full of piss and vinegar and always laughing.  I was so happy to see her come in today and she remembered us as well and was all excited to have "her island family" to take care of. She's a gem.

So as usual, the hospital stay is full of highs and lows and Tess is being her little warrior self. Honestly, the stuff that this kid has to have done to her would break an adult but she just takes it and keeps on going. She even got giggling at one of the CNA's who came in to help change her bed and started singing Let It Go to her.

Man, that kid is something.

A contrary case...

So I figured I'd give a little update as far as the Toodle Bug, her seizures, and the cannabis trial is going.

It's not.

There! All caught up!

Okay, okay, there may be a little more to the story than that.

Back near the end of September, you may recall we started a trial of cannabis to help get control of Tess's seizures. We started her out on a teeny tiny dose three times per day plus a rescue med to use immediately when a seizure hit (she was still on all of her regular daily seizure meds and rescue meds as well).

At the beginning we thought maybe it was working. Huzzah! Tess's seizures weren't lasting as long and it seemed like there was a longer period of time between the big ones. Instead of every four to seven days, it was every eight to ten and once, almost two weeks.

Needless to say, we were cautiously optimistic.

Then she started to go backwards and the seizures were lasting for a longer time and the rescue med seemed to not help at all.  After discussing with the doc in charge of the cannabis treatment, we were told to increase the dose of the daily cannabis by 100% every two weeks until we saw a change. By 50% every two weeks if we saw some change but not a lot.

Welp, we saw a change; just not the one we were hoping for.

For those who aren't super familiar with Tess, she is a constant study in contraries. For example, Tess used to be treated with Ativan as a rescue med for her seizures but her reaction was the opposite of what most people's are when they take ativan. Instead of calming her down, it would jack her up. Another example would be that most people who have a seizure disorder have a spike in seizure activity when they are sick. Not Miss Contrary. Her seizures disappear when she is sick (something we are super thankful for since she struggles so much when she is ill without throwing seizures into the mix).  Another contrary Tessie trait is that she isn't bothered by her enteral (gtube) feeding when she is sick or even has the flu. You know, like most people would be. I can't even use it as a guide to how crappy she is feeling because she just does fine with it when most of us can barely stomach a popsicle.

See what I mean? A case of contraries.

But I digress. Back to the cannabis trial.

We had been warned by her Epileptologist in Boston (who is not in charge of the cannabis but of everything else seizure related) that some kids react badly to cannabis. It can actually increase their seizures and she was adamant that we needed to be on the lookout for that because it could cause Tess to go into Status Epilepticus , which is very dangerous.

Guess what Miss Contrary did once we started to increase the dosage? Yup, you guessed it. Her seizures got WORSE. They were more frequent, lasting longer, and were more violent. Plus, I had started feeling bad about giving her the cannabis about a month prior but was determined to keep trying so I just pushed that feeling aside. I can't really explain why except to say that desperation is a tricky master. But I know that whenever I get that feeling, I need to trust it. My instinct with Tess is pretty finely tuned in at this point and I just knew I was giving her something that not only wasn't helping, it was actually hurting her. A bad combination. The doc in charge of the cannabis trial wanted me to try going up again on the dose but I finally outright refused and said I was pulling her off until we could get to the mainland to buy a different strain to try. They agreed since I was so adamant about it (plus her Boston doc had been supportive of this trial on one condition; that we would be honest with ourselves if we saw signs that Tess wasn't reacting well to it and pull her off of it). We made a plan with the cannabis doc to try a different strain of cannabis as well as the rescue one, but for now she's not on any since we haven't had the time to go to the place on the mainland to buy it.

So that's where we are still at and, interestingly enough, she hasn't had a bad seizure since we pulled her off of it.  Of course, she also has been fighting a respiratory illness for a couple of weeks so that could explain the lack of seizure activity but still...too much of a coincidence for us to ignore. Plus she just seems more "with it" since we've taken her off the cannabis (even though the strain she was on wasn't supposed to have any mind altering affects, it would seem that it did).

Miss Contrary.

As her pediatrician likes to say, "My girlfriend plays by her own rules and makes them up as she goes along and just when you think you've figured them out, she changes them and you're back to trying to figure them all out again."

Preach, Doc S. Preach.

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.

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....

TEACH!

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. 

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!

Seizures and Sass....

Sigh.

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. ;)

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,

WHATEVER! 

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? 

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, just...no. 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.

Dream a little dream of me...

Last night when I put Tessie to bed and I, ahem, PUT THE OXYGEN ON HER, I looked at her alarms like I always do before leaving her room and noticed that her heart rate was quite elevated. Tessie usually has a higher heart rate than most people but this was high even for her.

"Great, she's coming down with something.", I thought to myself, because for Tess, a higher heart rate is one of the first symptoms something is happening to her.

I stayed up another couple of hours to watch the Democratic debate then checked in on Tess again before going to bed. Heart rate was still too high. And she was sleeping which meant that it should definitely have been lower. A lot lower. Like at least 30 beats per minute lower.

Sigh.

I fell asleep but woke up a few times and made sure I didn't hear any alarms. I knew that if things were getting worse for her, the oxygen alarm wouldn't go off unless she was in big, bad trouble because I had actually PUT THE OXYGEN ON HER like a good mother, but that her heart alarm would go off once it hit 140. It was 130 when I went to bed so I had legit reason to be a little more vigilant.

No alarms.

Well, good. I went back to sleep and then dreamt that Tessie was getting quite sick and that I should have known it was coming because the night before last, Oreo was freaking out over Tessie and trying to get my attention and do something by whimpering and prancing in front of Tess, looking hard at her, then almost stamping her paw at me as if to say, "Come ON, lady! Something's not right with my girl! Do something!" (this part of the dream had actually happened in real life the night before last).

Then, in my dream, Tess had a big seizure. Like the kind of big seizure she used to have a few years ago. Scary big. In my dream I remember thinking, "Oh no! Not you again!", and just being really upset.

Just as I was explaining to Charlie (still in my dream here) about the whole Oreo thing and why I should have known a something was coming, I woke up. I was so relieved to realize the seizure had been a dream but then immediately remembered that her heart rate had been elevated when I went to bed and that she actually could be sick.

I got right up and went to Tess to check on her and her heart rate. It was totally back to normal.

Phew!

But wait. Now I had to puzzle out why it had been so high last night for a while. And why had Oreo acted so bizarrely the night before.

It came to me soon enough.

I assumed that Tess must have been having some type of seizure as she slept. That would explain Oreo and the high heart rate and maybe even my dream of her seizing, because subconsciously I might have had that in the back of my brain all along when I went to bed last night.

But it gets a little more odd here. This morning, as Tess started to watch her movie and I was wasting time on FB, it dawned on me that her breathing sounded weird. Almost like panting. You know, like it would sound if she were having a seizure.

Sure enough, I looked over and my stomach did that old familiar flop it does when Tess is in trouble. I jumped up and took the two steps over to her wheelchair to try to get her attention. No dice. Rigid mouth, clenched fists, dilated pupils, stiffened legs with curled toes, breathing change...all meant one thing.

She was in the middle of a seizure.

And it was the kind of seizure that I hadn't seen in a long time. Like a few years. Like I had dreamt about last night.

Luckily it didn't last as long as the old ones used to but my 'Tessie Radar' is way up and on the lookout. And luckily for me, I know that Oreo's is as well.

As far as the dream goes, I don't know what to make of it but I do know that it is really a weird coincidence.

And hoping I don't have another one like it for a while.

"But in your dreams
whatever they be
dream a little dream of me"
-Ella Fitzgerald 

PS Tess is currently just fine and happily watching Frozen. :)

Every breath you take...

...and every move you make
Every bond you break, every step you take, I'll be watching you.

-The Police

Such a good song and one that has been stuck in my head (and now yours, you're welcome)  pretty much since Tessie came home from her spinal fusion surgery in November. 

You see, since that surgery, when Tess sleeps at night, her breathing is...weird. Loud. Alarming (literally). 

When we first noticed it, we had the most awesome "Dr. Jen" come check her over because this was something we had just never seen, or heard before, not to mention the oxygen alarms that were blaring about every fifteen minutes all. night. long. I even managed to get it on video so Jen could see and hear for herself the symphony of noises that Tess was making as she slept. 

It was like listening to the worlds most annoying tight rubber band being rubbed one minute then would switch over to what I could only assume was the spirit of a departed truck driver who hadn't slept in days and was using Tess's little body to get some much needed rest. Because there was no way the noises that were coming out of her little mouth could be those of a twelve year old girl.

I mean, people, she was giving her dad a run for the money in what was the worst contest ever created: Who can snore the loudest for the longest period of time. 

Well I am here to tell you that Daddy won the 'longest time event' but my Toodle Bug for sure won the 'loudest and squeakiest' event. 

At any rate, Jen thought all those noises were just as odd as I did and called Tess's pulmonologist in Portland. Since she was still on higher rates of pain meds at the time from her surgery, that was thought to be the culprit because she takes so many meds anyway, that more on top of that was simply depressing her breathing too much. He also suggested we put her on oxygen at night to help her breathe easier.

Well, we did pull her off of the pain meds and she went back to her normal pre-surgery med routine and seemed to be doing better so I didn't bother with the oxygen because she absolutely hates it and I figured it wasn't worth the battle for the smaller amount of snoring and alarms.

Cut to the past two weeks and we are right back to square one. The loud, rumbly, wake herself up with a snort, snore. Then the tight, squeaky rubber band noise kicks in. Then, God help me, the alarms start blaring. For hours. All. night. long. 

Now one would assume that her mother would haul herself up out of bed and go put oxygen on her child.

One would assume wrong.

What this awesome mom does instead is sigh heavily, very martyr like, look in the monitor to see if Tess 'looks' okay, and waits for the alarms to stop which they always do very quickly. Then mommy rolls over and goes back to sleep and starts the process all over again about thirty minutes later. 

Good times. Good times.

I finally have gotten sick enough of the alarms, as well as concerned enough as to why this is all happening again, that I myself called the doc which totally seemed to surprise his receptionist.

Her: "You want to speak with Dr. W?!" 

Me: "Yes, please. Or I can leave a message with you and you can have him call me when he has a free minute."

Her (still not sure how to handle the clearly odd request): "Can I pass you along to the nurse?"

Me: "Only if by nurse you mean the doctor. I need to speak with the doctor myself. Not his nurse."

Her: "Okay, I'll give him the message." (still confused that a parent had the gall to ask to speak directly to the doctor)

Anyhoo, he very nicely called me back the following afternoon and chatted with me at length about what he suspected was going on. He told me that due to Tess's pretty profound scoliosis prior to surgery, muscles that wouldn't normally be needed to help a person breathe had had to step in because the muscles that she should have been using were compromised and not able to work due to the scoliosis and now that she was straight, the breathing muscles had, in a sense, atrophied and needed to build their strength back up and the other muscles were now in different positions and weren't doing the same jobs anymore. So basically, Tess is having to work really, really hard while she sleeps just to breathe. He also made the very good point that our bodies repair and rejuvenate themselves during sleep and she wasn't getting to do that because she was almost working harder during her sleep. Poor kid. 

So he gave me a plan and can you guess what it starts with? 

Anyone? Anyone? Bueller?

Yup. Oxygen! Imagine that!

Plus he is ordering another sleep study for her and he strongly suspects she will test positive for obstructive sleep apnea and will be put on a little bit of bipap at night to help her. 

So that's the latest with the Toodle Bug. 

Oh, and she's getting the oxygen put on now. ;) 

Cheers to a (hopefully, please God) good and restful night's sleep for all of us! 

Her Person..

Ellie left the island today and flies to London tomorrow.

For almost five whole months.

I had all I could do all morning to not burst into tears in front of her so instead I joked and trounced her and Hunter in one last game of dummy rummy, which I must confess that since I do love to win, was really the best way she could have left me. But then, at the ferry as we said goodbye, I could feel the tears coming so I jokingly grabbed her in one last big hug and said, "I'll never let go, Jack!", which is a Titanic reference and one that we always joke about because let's face it people, there was room for two on that damn door and Rose basically killed Jack out of selfishness. But I digress. I just didn't want to leave her with my tears so I left her with a laugh instead then cried in the van on the ride home. What can I say? I'm not as strong as I pretend and I'm going to miss her.

And then there is Tessie. Last night, Ellie was explaining to her that she was going back to college but that she would be further away and so wouldn't be able to come home at all for quite a long time.

I literally watched Tess's face change from happy to unhappy with furrowed brow and frown as if she were going to cry at any minute, as Ellie was talking.  We finally realized this morning, as Ellie snuggled in with Tessie one last time before she left, that Tess didn't think Ellie was ever coming home. As she and Ellie were laying there, Tess just refused to smile until Ellie hollered to me that she couldn't make Tess happy which is so unusual that I went in to make sure Tess wasn't sick. I then started talking to Tess and said, "Yes, Tessie, Ellie is going away for a while but she IS coming home again!". When I said that Tessie gave out a huge, shaky, sigh and got all happy again. We just have to keep reinforcing to her that Ellie is coming home again. In the meantime,  my heart now hurts not only for myself, but for Tessie as well. Because Ellie is her person. And I am clearly codependent. Anyway, for any Grey's Anatomy fans, you'll get "her person" reference, but for those of you who aren't quite as, well, we'll just say, into, TV as much as I am, here's a few memes that should help explain what I'm talking about:

Replace Cristina with Tess and Meredith with Ellie 

Or if she needed a slumby buddy-you know, something a tad less dramatic but just as important

I'm sure Tessie told this to Ellie today...at least with her heart if not her words

See what I mean?  Perhaps a tad dramatic but that is how having a person feels and Ellie is Tess's person. I'm mama and yes, Tess loves, wants and needs me, especially when her life is scary or she is in pain, but Ellie is her person. There's just no other way to put it. And her person will be gone for five months and she will miss her so so much that my mama's heart breaks for her even as it leaps in joy and happiness for the experiences that Ellie is going to get the chance to have. Because it is going to be such an amazing time in Ellie's life. Of that, I have absolutely no doubt.

Ellie will have her semester abroad with one of her very best friends, Kaitlyn, and another really good friend from Wagner and will get to study at the University of Westminster (which I believe is located near Parliament and Buckingham Palace-eek! Exciting!) in one of the most amazing cities in the world. They are hoping to be able to travel around Europe some during their Spring break while they are there as well. Maybe Ireland, Italy, & France or even just one of those countries would be incredible. It will be an experience she'll never forget and her dad and I are just thrilled she's taken this opportunity and running with it.

And Tessie will get thru it. With facetime and letters, along with a calendar marking off the days until Ellie returns, Tessie will get thru it.

At the end of May, Ellie will come home and Tess will have her person back and all will be right in Tess's world again.

yup.

Her person. 

My world too...