Sunday, April 16, 2017

God showed up...

I'm a huge movie buff. To the point that I often converse in lines from different movies. One of my favorite lines is from Forest Gump. Remember when Lt. Dan goes to help Forest work his shrimp boat and they can't seem to catch a break (or any shrimp for that matter) and Lt. Dan asks Forest, "Where the hell is this God of yours?", and Forest responds, "It's funny Lt. Dan said that, 'cause right then, God showed up."

I just love that last line. And it seems appropriate to share on Easter Sunday the information we found out, on Good Friday as it happens, that we've waited Tess's whole life to hear; what makes Tess, Tess.

But before I get to that I want to remind you of a blog post that I wrote way back when I first started writing the Travels with Tessie Toodles blog. It's the one called, Are you there God, it's me, Joanna?. (click here to read that post).

Basically I wrote about God showing up.

In that post I wrote about some very scary genetic testing that Tess was having done when she was around two years old. How I was basically sobbing hysterically while praying, praying, praying to God, but this time, instead of asking God to "fix" Tessie and make her healthy, I prayed for strength and courage and God's grace to lead me thru whatever may come.

And God showed up. Those big scary tests? They led to nothing. I had nothing to fear from them. They were not the reason why Tess was like she was. They got repeated several times because Tess seemed like such a candidate for a few of the diseases and the testing was done by some of the best doctors at one of the absolute best hospitals in the world, Boston Children's Hospital. But nope, negative on repeat.

You can only imagine my relief.  All of those scary and horrible things I had read about, I could now let go of and move on to hope instead of despair. The only down side was now we had run out of testing options available to us at that time and had to make some sort of peace with the not knowing. To me, it was a fair trade off. Not know, or know and be absolutely frozen with terror? I'll take option one please and thank you.

Fast forward to this past Friday. Because I am a firm believer in God's timing, I found it no coincidence that we found out Tess's genetic results on Good Friday. The day God gave his only begotten son out of his love for the world.

I was nervous when Dr. Craig called and she cleared her throat and said, "I never know how to approach parents with news like this so I'm just going to put it out there."

Then she told us and my very first thought was "God is good."

We talked about what it meant for Tess and us as a family and plans that would need to be made at some point as well as more meetings with palliative care and then we hung up.  I promptly burst into the big ugly cry because my brain went back to that space I was in twelve years ago when I was praying for strength and courage should one of those very scary tests come back positive. I felt as if no time had passed and I was THAT Joanna again, not the one I've become since. I was scared and sad until Charlie looked at me with tears in his eyes and said, "But what's changed? Nothing. Nothing has changed for us or Tess. We've been living this for almost fourteen years. We already live the scary, the terrible, the horrifying and we're still all okay. But now we know why. And that can only be a good thing."

And he was so right that my brain snapped right back to the present and I even laughed at how stupid my overreaction was. Although I have to say in my defense, I honestly think it was a type of PTSD response. Like a flashback in time that I just couldn't handle for a minute until Charlie brought me out of it with that one simple question.

What's changed?

Now you may be wondering how my initial reaction to hearing the news was, "God is good.", when my reaction/mini breakdown was so seemingly the opposite.  It's because Tess does in fact have one of those very scary diseases that she tested negative for all those many years ago. And God is good because I was given the GIFT of not knowing until I was strong enough to handle it. I was shown God's love and mercy because I got all of those years of living with hope instead of waiting in dread for losses. Blake, Ellie and Tessie got the mother they needed and deserved instead of a shell of a mom who was in a state of total devastation.

Because I was so sick myself at the time, fighting cancer and living with chronic pain, I was already scared. Add a child with a rare and progressive neurological disease into that mix, and I know in my heart, I would have not handled it well. At all.

God showed up way back then when those tests kept coming back negative and God showed up again on Friday when we did get them and I was in a place where I was strong enough to handle it.

Tess has Rett Syndrome. (click on it to learn more if you're so inclined)

Rett Syndrome is a progressive neurodevelopmental disorder that almost exclusively affects girls and is considered to be a rare disease. Because Tess can't just do things normally, not even in the rare disease category, one of the genetic mutations she has for this has never been reported before. We will meet with a geneticist in July to go over everything in more detail but from everything I've read, Tess is on the severe side. By a lot. But (thank you Charlie) I say again, "What's changed?" It's almost laughable to me now, to think back to the me then and how absolutely terrified I was of the words, "gtube, apraxia, loss of skills, breathing problems, heart problems, scoliosis, seizures, aspiration, etc etc". You know, all the words that are a part of our NORMAL daily lives now and have been for years.

Besides the peace of finally knowing, and already starting to find our "tribe" so to speak, in Facebook groups and online sites, I also got a gift I didn't even know I still needed; I did absolutely nothing to cause this and
could have done nothing to stop if from happening. I thought I had made my peace with this a while ago and I basically sort of, kind of, had until Dr. Craig told me that. I literally felt a weight slip off of my heart. I didn't cause this. I didn't hurt my baby. Tess's genetic coding is considered a "spontaneous mutation" and it most likely had already set itself up before I even knew I was pregnant.

In other words:

Tess was, in every single way, always meant to be Tess. She is imperfectly perfectly made. And to quote Ellie, "I get a lot of satisfaction from that."

This also means that Blake and Ellie are not at any higher risk for having a child born with a genetic defect than anyone else. It was just the 1 in 10,0000 luck of the draw.

I say again, God is good.

And God showed up and just keeps showing up. And we are blessed. I can't think of a better day than Easter to share Tess's, and our, big news.

Happy Easter, everyone!




















Sunday, March 26, 2017

Just another day...

I have a confession to make.

Today was Epilepsy Awareness Day and I didn't even acknowledge it. Some people also refer to it as Purple Day since that is the color for Epilepsy Awareness. They dress in purple and encourage others to as well. Many memes and statistics are posted on social media sites about epilepsy to raise awareness.

I literally did none of those things. Not one.

The only real excuse that I have as to why I blew if off is because every day is Epilepsy Awareness Day in my house. And to be honest, I'm sort of over it. I'm tired of it consuming my thoughts. I don't want to wear purple or post information because I already know too much and it's pretty scary. Granted, the posts are to educate those less familiar with it than I am but I just don't want to give it any more of my attention than it already demands from me.

Tess has had three seizures this week and the shortest one was close to five minutes long which meant rescue meds had to be given during each seizure and her heart rate and oxygen monitored. And bonus, she started a new fun game I like to call Scaring The Ever Loving Crap Out Of Mama.  This involves her not taking any breaths during some of the time that she is seizing.  As in, not breathing. At all. There was a moment during one of the seizures where I literally shook her by the upper body to try to make her take a breath. And I'm not super proud to admit this but at one point I was saying to her, "You need to breathe Tessie! You're scaring mama!". Because, you know, she was totally in control of what was happening and me saying that would snap her out of it. *snort*

So yeah, as I was saying, I'm over the whole Epilepsy Awareness thing. God Bless those who are totally into it and show their support but this girl is out. At least for this year. Maybe something will change and I'll have a fresh new attitude for next year like I have in the past.

Maybe not.

And let me also defend my sour puss attitude by saying that it seems like every day is an "Awareness Day" for Tess somehow.

For example:

Today is Epilepsy Awareness Day.
Yesterday was National Cerebral Palsy Awareness Day.
There is a Feeding Tube Awareness Week.
There is Rare Disease Day.
There is Undiagnosed Day.
There is Scoliosis Awareness Month.

You can see where I'm going with this, right? I mean, my little Tessie fits all those categories. That averages out to a disease or syndrome every other month, and I'm willing to bet I could find even more for her. (I literally just googled quickly and already found another.  Rare Chromosome Disorder Awareness Week. No joke.)

To all this I'm saying, Enough. I've had enough. How can anyone possibly keep up?

We are currently waiting on genetic testing that was done on Tess at the end of December. It's the "Cadillac" of genetic testing at this point in time and the neurologist who ordered it is very hopeful that we can finally, after almost fourteen years, get a real diagnosis for Tess. Or at the very least, the testing may reveal something that could point us in a better direction to try to treat her seizures. I have to admit to being excited, and a little scared since sometimes ignorance is bliss,  to get the results.

I'm willing to bet if we do get an "official" diagnosis I will be all over whatever "Awareness Day" is associated with it.

But for now I'm going to stick with the only "Awareness Day" that totally covers all of the "Awareness Days" mentioned above.

Her Birthday.

Lastly, I do want to give a shoutout to all the Epilepsy Warriors (and their families) out there. Not because it's Epilepsy Awareness Day but simply because this journey is unbelievably hard and we deserve a great big pat on the back for getting up every day to face it all again and again.

And to everyone else all I can say is, if you're lucky enough to never have had to experience seeing a loved one have a seizure, then, as the saying goes, you're lucky enough.







Friday, February 24, 2017

The cost of denial...

Last week's surgery was supposed to be simple. So simple in fact, it wasn't even technically considered a surgery; more a procedure.  And the only reason her doctor admitted Tess into the hospital following the surgery was because he was worried about all of the things that could go wrong for her post-op due to her many health challenges, not because of the surgery itself. So worried, in fact, that he admitted her into the intensive care unit because, as he put it, "If something starts to go wrong for her, it's going to be a situation that will require a one to one nurse and she just can't get that same attention on the regular floor.".

Personally, I thought he was being a bit overdramatic considering how minor the surgery was.

Once again I was right, and I was wrong.

Tess did superbly after surgery. Sore and tired but otherwise fine. We spent the night in the intensive care unit and by nine the next morning were prepping for her to be discharged with a clean bill of health.

Then, around eleven, literally an hour before we were walking out of there, Oreo started pacing around Tess's hospital bed and whimpering. She wouldn't stop until I relented and let her up on the bed to check on Tess. And at first that's all I thought she needed to do because she hadn't been able to get close to Tess since prior to surgery and Oreo starts to stress some when she doesn't get regular access and is able to get up close and personal with her girl. Then I really started to watch Oreo interact with Tess and a warning flare went off. Oreo went right up to Tess's mouth, licked at it, paused to stare at Tess, then flopped right on top of her with a heavy sigh. The type of sigh she tends to heave when Tess is in trouble.

Here's the other thing. As the morning had progressed I thought Tess was starting to look worse rather than better or even the same. But her vitals were good, better than good even. In the words of Tony the Tiger, they were "Great!" No fever, good respirations, normal heart rate. She was smiling and taking her food without any trouble. All the things that I use to determine how she is doing.

Still, she looked, "off".  And then there was the Oreo thing. I very briefly considered telling all the docs that came by on rounds that I was a little worried, but I had nothing concrete to back up my worry with. I couldn't very well say to them, "Oh, by the way, I know she is doing great and all but I think she looks a little off and her dog alerted on her in that special way she has when the shit's about to hit the fan with Tess."

Can you imagine how that would have gone over? I could, and preferring to be able to actually leave the hospital rather than be personally escorted to, say, the Psych Ward, I stowed my worry and we left the hospital.

Cut to us literally being on the ferry and almost home when Tess starts in with a really junky sounding cough. Oh crap. We ended up having to hook up our portable suction in our car to help her clear the junk from her mouth. By six that night Tess was going into full on coughing/retching jags and starting to truly vomit with them.

This is a bigger deal with Tess than with most kids for two reasons:

1: Tess had something called a Nissen Fundoplication surgery done on her when she was four that literally prevents her from being able to throw up, thereby preventing even more aspiration pneumonias. The fact that she was vomiting indicated that the Nissen had let go and now Tess's risk for aspirating and developing an aspiration pneumonia was a lot higher

2:Tess only gets nutrition thru her gtube . It's very regimented and she has very, very little room for error because she would get dehydrated very quickly not to mention she needs the calories and general nutrition. With her vomiting we had to stop feeding her which meant no fluids going in.

Because of this I immediately called her pediatrician. He thought it was probably post op nausea and agreed to keep her food/fluids off for the night and restart them in the morning but to call him if she developed any other symptoms in the night.

After we gave her an anti-nausea med, she seemed a lot better. By the next morning she still looked a little off but her vitals were good and she was smiling and "talking". All really good signs so I put her on Pedialyte for a while then switched her back to her regular food later that afternoon. Cut to around six and she was back to vomiting and looking terrible. We had to stop her fluids again. I spoke with "Dr. Jen" (our island doc) and she agreed Tess should be seen the next day so the next morning she stopped by and, naturally, Tess was looking okay. Once again, good vitals, smiling some, and back on her fluids. Jen and I came up with a plan and we felt pretty good about the fact that Tess seemed like she was maybe turning the corner and feeling better.

By that night we were back to her puking and no fluids. I did the math and realized she had only had in three days, less than the amount of fluids that she normally has in one. Not good. Her heart and oxygen alarm blared all night and by the next morning she was good and truly sick. Scary sick. I got in touch with "Dr. Jen" and told Charlie to expect to be told we had to go to the hospital with her.  Jen came by later in the morning and by that point, I was quite scared. Tess was barely able to keep her eyes open and when they were, they would roll up into the back of her head. Her breathing was super shallow, hitched sounding, and too fast. Super high heart rate as well but no fever. Jen had tried to reach the surgeon who had done Tess's surgery but he wasn't on call. So, for only the second time in the four years or so since Dr. Stephenson gave me his personal cell phone number, I asked Jen to call it. Didn't matter that it was Sunday and I knew for a fact he wasn't the pedi on call. Next to Jen, he knows Tess better than anyone else and I needed him to know what was going on. God love him, he called her back (after she had told us we had to go and had sent us on the boat to take Tess to the hospital) and he agreed 100% with her that Tess needed to be seen asap. His big worry besides dehydration? Sepsis.

Oh. My. God. I hadn't even thought of that and so now it was added to my already super long list of fears for her.

There were several moments on the ride across the bay that Charlie or I would quickly turn around to check on Tess because we thought she had stopped breathing. I am not even close to exaggerating when I tell you that her breathing was so hitched and shallow that there were times we couldn't even hear it. Jen had given us the option of going by ambulance but we thought Tess would be okay in our car. I need to remember how fast Tess crashes, and once again, I will not make the same choice next time.

We even looked at each other and said aloud, "We may have waited too long this time." I cannot begin to explain to you what that feels like but I wouldn't wish it on my worst enemy.

We were scared to death for her. And the guilt for me was so bad because I *knew* even before Jen saw her that she needed to get to the hospital and that we should have taken her on the first boat after the horrible night that she had had. But I wanted her to be okay so badly and to not have to go to the hospital again that I ignored my own gut instincts. So stupid. So so so stupid. Like not enough stupids in the world to tell you how stupid that was of me.

Long story (very long-sorry about that) short, Tess did in fact get diagnosed with sepsis, pretty severe dehydration, and a lower left lobe pneumonia. She was a very sick girl.  She was so sick in fact, that I didn't take even a single picture of her like I normally do when I post on FB that she is in the hospital because I was afraid that her sisters and grandparents would see how very bad she looked and, basically, be as scared as Charlie and I were. (It wasn't until late the next day that I took one with her Superlove and though she is weakly smiling at her sister, all I can see in that pic is how sick she looks. And that was her looking much better than the day before).

There was talk of transporting her to Maine Med but our local hospital felt like things were still under control and that they would move her quickly if she became any more unstable. They were very comforting and reassured us that everything had been caught early and her prognosis was really good.

Thankfully, Dr. Stephenson came in on all of his days off to look at "his girlfriend" himself. And even more thankfully, she responded quickly to the IV antibiotics and fluids they were quickly putting into her.

She stayed in Special Care for four days and got released under the condition that we would call immediately if she developed any symptoms at all, no matter how minor.

She's still not herself, but she is slowly getting better.

As for me, my guard is way up and I won't be ignoring my instincts where the Toodle Bug is concerned again.

And I won't ignore Oreo's either.




Saturday, January 14, 2017

Mr. Good Daddy....

There is one little story from Tess's most recent stay at the hospital that I haven't really told a lot of people yet. It's one that makes me feel both indignant and ready to burst into laughter in equal amounts, mood depending.

Have a seat and enjoy my little tale.  I know Charlie did.

As we were sitting there one morning, I believe it was day nine, the woman who had been cleaning Tess's room came in to do her daily routine. It had been Charlie's night to stay at the hospital but we were both sitting in what had become our regular chairs and we exchanged the polite "good morning and thank you for cleaning the room.", pleasantries when she decided that this was the perfect time to give us her opinion on our parenting. Or rather, on Charlie's and in a subtle, passive aggressive way, mine.

And I quote:

"You (she pointed at Charlie with a wide smile) always right there. I come in, you always there in that chair. She (pointed at me and instantly loses her smile), she come and go, but you always right there. You (points and smiles at him again) good daddy." She even nodded in affirmation to complete the point she was making then she mopped her way into the bathroom as I swung around in total disbelief at what she had just said to look at the "good daddy" and get his reaction. 

He went right back to reading whatever he had been reading when she came in.

What the what?!  

Me (whisper shrieking at him): "Did you hear what she just said?!" 

Him: "Yeah, she said I'm a good daddy."

Me: "Did you understand all of what she just said besides that?!"

Him: "Not really."

Because she had a pretty thick accent, Charlie hadn't picked up on everything she had said.  It was only after I had picked my jaw up off of the floor and told  him verbatim what she had just said and that basically, I, the clearly not so good mother, come and go at my leisure as he,  the "good daddy", sits constant vigil by his sick daughter's bedside, did he fully appreciate it. 

And boy oh boy, the man lapped it up like a kitten with cream.

I'm here to tell you, "good daddy" fluffed up and preened like a peacock while enjoying a pretty hearty laugh at my expense.

Meanwhile I was stuttering and stammering and still whisper shrieking at him, "How DARE she come in here and imply that I am hardly here and that I just come and go whenever the mood strikes as if I don't have a care in the world when I'm here every bit as much as you and we split our time here at night?! Plus you were gone for FIVE HOURS during the day yesterday! Where the hell was she then?! Maybe I should just tell your new girlfriend that! What nerve!" 

Charlie just looked at me and let me go on for a few minutes before chiming back in with this little gem:

"What can I say? You come and go. I'm always here. I'm a good daddy." 

And trust me when I tell you, he is going to make damn sure I am reminded of that on a regular basis. And if he should somehow forget, I know a cleaning lady at Maine Medical who will apparently be only to happy to tell me so herself. 


Friday, December 30, 2016

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.

Saturday, December 17, 2016

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.

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.