Yabba Dabba yell a lot at everyone to get this thing made!

Another Halloween has come and gone.

Phew!

In the words of Ellie, "Tessie's costume is probably the most awesome one any of us ever had!"

My response? "Yes, Ellie, it's only too bad that you all couldn't have had wheelchairs so you could have had such awesome costumes too."

Score one for mom. Or not. You know, because Ellie wasn't being whiny about it, she just loved Tessie's costume. I can't help it though, it is in my nature to be a wise a$$.

Ellie was right however. This costume ROCKED. Well, Bedrocked. You see, this year my Toodle Bug was dressed as Pebbles Flintstone! "What's so great about that?", you might be wondering. Why, I'm glad you asked.  The great part was that we made Tessie's wheelchair into one of the Flintstone's cars.

Of course, in typical Reidy, aka Griswold,  fashion, we had a few bumps in the getting-ready-for-Halloween road.

Tessie and I had gotten out of Dodge when Hurricane Sandy blew through and were waiting out the storm safe and snug on the mainland. I really wasn't sure if we would even get home for Halloween but I knew if we did, this is what I wanted for Tessie to dress up as. I did already have the costume and, in a fit of unusual preparedness, had even already purchased the materials needed for the canvas roof and granite looking tires. However, they were all sitting in a pile in Tessie's bedroom.

So Halloween morning I called to check in with the hubby and to let him know that yes, in fact I will brave the ferry boat and come home and oh by the way, did I mention that you need to make Tessie a Flintstone's car for her wheelchair? Oh, I didn't? My bad. But we really will need it done when we get off the ferry because we'll only have about an hour to pull it all together. Did I leave you directions? Well...no. It only needs a wood frame, you're a carpenter, you've got wood everywhere! But make sure it looks Flinstone-y and good, and fits her chair and....

When we got home I'll be honest. I may have become a tad bit hysterical and possibly been yelling at everyone in my path to GET BUSY! The house was a wreck, Tessie needed to be dressed in her costume, and the car, while framed up, still wasn't totally finished.

Poor Charlie, Ellie and Bina. They were looking at me like I had just sprouted three heads. "Stop standing around! Come on! Pick up! Bina, start making wheels for the car! Ellie, sweep the entry floor! Charlie this car needs to be fixed! You made this part too long! String?!! Do I have any string?!?! No, I do not have string, WHY would I have string?! Bina, cover the steering wheel in duct tape! Oh really, Charlie?! So you don't think duct tape is very Flintstone-y. Well it is if it is CHEETAH print duct tape so HA! Yes, this has a hole in the back of the canvas! The Flintstones had a hole in the back of THEIR canvas roof! Ellie, why are you just standing around?! DO something!! Well, how about help me with this wig! TESSIE!!!! You have GOT to stop throwing your head to the side!"

And on and on it went. At one point Bina actually grabbed me by the shoulders and said, "JoJo, you have got to calm down!", or something along those lines. It's really all a blur.

But when all was said and done, and my blood pressure had dropped back down to somewhere near normal, we had managed to pull together the best costume of HALLOWEEN ever!

Charlie, Ellie, Bina and I proudly present......

PEBBLES FLINTSTONE!

But wait, here's a video...and in typical diva fashion, Tess is clearly not nearly as impressed as we all were...Yabba Dabba Doo!

I am a special needs mom

I am a special needs mom. A mom who knows about:

Watching the weather closer than most weathermen and then trying to make the decision of whether or not it is safe to keep your child home when the weather turns nasty because you live on an island and the closest hospital is over an hour away by ferry. If it's running.

Having your child be on that ferry, in the middle of the bay, and stop breathing because she is having seizure after seizure after seizure.

Racing up to the local medical center only to leave by ambulance and be taken to the airport and flown off the island because your child is too sick to wait for the ferry.

Alarms screaming in the dead of night to wake you from a not so sound sleep because let's face it, there hasn't been a good night's sleep in so long you don't even remember what it feels like to wake up really rested.

Immediately having your heart racing as you check the video monitor to look at your child. The alarm continues to blare as you try to see, from your bed, is it just that there isn't a good connection because she is wiggling, or is she not breathing well? Is she having a seizure?

Dragging yourself out of bed for the third or fourth time and standing beside your child as they look at you with eyes begging to "help" them yet they can't tell you what's wrong. Their breathing is jagged and their motions are jerky but try as hard as you can, you just can't figure out the problem. Stroking them and telling them you love them with tears in your eyes because you feel so helpless and a parent's number one job is to help their child.

Some days not being able to shower because you don't dare to leave her alone long enough to have one.

Not being able to go out of the house whenever you want or need to because you can't manage you child on your own because they have gotten too big and oh, yeah, your back is in constant pain.

Fighting for all the things the law says your child is entitled to but the people in power don't want to give her because it costs money. From schools to insurance companies to the State you live; all fighting you because of a dollar.

Having to explain every detail of your life to a stranger on the phone to justify why your child deserves to continue to receive certain benefits. Like home health care. Or a wheelchair.

Changing diapers on a little girl who isn't so little anymore. Who will soon be going through puberty and all that that entails.

Always having to be sure you never run out of life saving medications. And oh my God, there are so, so many medications to keep track of.

Mixing up those meds three times a day.

Carrying a "jump bag" everywhere you go that is filled with emergency meds and oxygen and actually being more concerned about that at any given time then where your pocketbook might be.

Thinking you're going to an appointment only to end up in an ER and then more often than not, end up admitted for at least a few days into the hospital.

Being able to work the hospital monitors that your child is hooked up to so you don't have to call for the nurse, again, to do it for you when the alarms sound.

Speaking with primary care doctors so often that they give you their pager and home phone numbers to keep "just in case" something should come up and they're not on call.

Having to pick out wheelchairs, lifts, tub chairs, and handicapped vans.

The "friends" you see the most often are your child's nurses, therapists and special ed teachers.

Becoming close enough with the people at the companies who provide all their equipment and feeding needs to joke and laugh with them on the phone and just chat for fifteen minutes or so to "catch up".

Trying to juggle the needs of your other kids with that if your special needs one. Always knowing you could be doing better at it.

Leaving your child in Special Care without you (but with someone they are close to so they won't feel alone) because another one of your kids has a big part in the school play and if you miss it, that's it. You won't get to see it again.

Worrying about the very real possibility that you could miss seeing your daughter's graduation from high school because your special needs child might get sick/have a seizure/be too loud to stay in the auditorium or any one of a hundred little reasons that could come up.

Having a nurse come into your home one day because your child has finally gotten "sick enough" that even the State realized that a normal parent cannot be expected to do this alone and then coming to think of that nurse as a family member. A sister. A fellow soldier in the fight to keep your child alive. A security blanket. A life line. Someone who makes it possible for you to not only stay for your daughter's high school graduation and not miss a minute of it but actually be able to relax and enjoy it.

And above all, the constant fear of, is this it? Is this the time the seizure/infection/disease wins and you will lose her for good. And then the realization that all of the above amounts to diddly squat when you think of what it means if you never have to do any of it again.

So, yes, I am a special needs mom. And grateful to be one.

The sniff test

About two weeks ago the hubby was giving Tessie a bath when I noticed that the little piece of gauze that we put around her Gtube button looked, well, gross. Now I know you're probably thinking that something that goes around a Gtube button and into a stoma in the belly would probably look gross normally, but you would be wrong. As a general rule of thumb, those little gauze pieces come off just as white as they went on with maybe a formula dribble on them if anything.

I was looking at blood. And something a tad greenish. Um, yeah....

I immediately thought, "Oh, no...it's an infection in her Gtube site", which can be very yucky if left untreated and make my little Toodle Bug quite the sick girl. She has had only one Gtube infection in nearly five years and that was almost right after the surgery to put it in so really, we had done an awesome job of keeping the site infection free and, all of her doctors, from Rockland to Boston would always comment on how great her stoma looked, making me beam with maternal pride and just a bit of smugness that I was so adept at Gtube maintenance.

It's the little things, people. Don't judge me.

Alas, it seemed as though my perfect record was over. But how to know for sure? I mean, the evidence thus far was purely circumstantial. A piece of gauze with just a little bit of dried blood on it and something with a greenish hue. Pretty convincing stuff but still it left room for doubt.

When it comes to Tessie, I do not leave room for doubt whenever possible.

So I did something that in hindsight, I can see, might seem a bit beyond the pale. Might disgust some. Might even make the more sensitive types (Hello Charlie) want to vomit.

I sniffed it.

Oh yeah. I grabbed that nasty, bloody gauze, lifted it to my nose and inhaled.

Behind me I was hearing, "Oh my God! That is frickin' disgusting! OH MY GOD!" *insert fake puking sounds here*  from the hubby.

When my vision cleared and I could think past the overwhelming, putrid stench emanating from that little piece of material, I marched right up to him and lifting that gauze like a woman on a mission said, "SMELL IT!"

Now many people won't admit this but the reality is, when you find a smell as heinous as the one I held in  my hands, your natural, almost primal, response is to want to share it. It's almost like you need someone else to validate how unbelievably gross it is. In a weird way, there is a certain thrill to bringing the putrid object to another person and watching as they back away in horror while shaking their heads and shrieking, "Get that thing the hell away from me!"   This was just like that but with vile, infected, bodily fluids.

I know.  Disgusting. But you need to understand how very, very nasty the situation was while at the same time the extreme pleasure I took in absolutely freaking Charlie out by taunting him with it. "SMELL IT, SMELL IT!"

Like I said, it's the little things.

At any rate, I deduced that her Gtube was most definitely infected and was not at all sure how to handle it on a Sunday night. So I slapped some triple antibiotic ointment on it, a fresh piece of gauze (the better to taunt you with, my dear) and called Sheila.

She agreed with my diagnosis based on my sniff test and suggested I get The Toots an appointment with her pediatrician when the office opened in the morning. So of course, by the next morning Tess was good and sick, Fever of 102 which I believe was from the infection but she had also come down with a bad respiratory virus so really, it could have just been a combination of everything.

I got Tessie to the mainland and when asked by her doc why did I think her Gtube was infected, I'll confess, I was quite hesitant to tell him what had actually transpired to lead me to that conclusion.

After a minute or so of babbling some nonsense about bloody gauze strips I just stopped, looked him dead in the eye and said, "I'm really embarrassed to tell you this because I'm sure you'll be as grossed out as Charlie was but the reason I know it is infected is because I smelled the gauze and then her stoma and only something that is infected can smell like that."

He never even batted an eye as he replied, "Well, how else would you be able to tell?"

Reason number one million and one why I love Tessie's pediatrician.

How do you spell Stress? IEP.

I haven't blogged in a while. Nothing like stating the obvious, is there?

I have been in a sort of funk where Tessie is concerned. Nothing seems all that funny or blog worthy.

The biggest reason for my blah state has a lot to do with stress. Some days I feel like all I am is Tessie's personal secretary. The kid could really use one. I have spoken with Children's Hospital 3 times in the last two days, taken her to see her pediatrician, called in prescriptions to get refilled, gotten a new wheelchair in the works, finally gotten her weaned off the Keteogenic Diet after nearly 7 weeks of beating myself up over whether or not I was making a huge mistake in even doing it, talked to more doctor's receptionists, spoken with the awesome lady who makes sure Tess eats every month at New England Life Care, talked with our home health agency about Tessie's next medical review which is already due again to see if the State will see fit to continue to provide home health care for her, then of course there are the seizures that refuse to just go away, and last, but not least by any stretch, emailed the school about the upcoming school year for Tess....and subsequently called a lawyer.

Sigh.

I won't go into all the gory and depressing details since I am not sure even now where things stand with the school.  I do know they broke the law as far as providing Tess with what she was supposed to be receiving under the guidelines of her IEP (Individualized Education Plan as mandated by Federal Law) and when I tried to approach the school administration to help fix it, I was lied to about certain aspects of the law, given very questionable excuses as to why her IEP was out of compliance and basically told they had gone above and beyond what they were legally required to do for her.

Thank God I took a Special Education Law course a couple of years ago. I know my rights and I know Tessie's and I am here to tell you they picked the wrong girl to try to bully.

But even so, it is very depressing to be fighting with the school district that you grew up going to. To realize that the people in your own community elected to serve on the school board, whom, most, you have known your whole life, won't return a phone call or email so that you can tell them the reasons why you're upset even though the Superintendent had told me he had asked them not to.  Don't get me wrong, I understand that as soon as the word "lawyer" comes into play it is a whole different game and certainly would not expect anyone to say anything that could jeopardize the school's position, but I will admit, I thought they would at least want to know why it had reached such a level. That they would have enough empathy and quite frankly, sense of loyalty to another islander to at least call me and ask me what was going on?!

The silence from them was deafening. And saddening. After about two weeks I did get one quick response from a member who had enough compassion to let me know why they weren't talking with me.

So now, here we are. Tess hasn't been going to school since the first day when I sent her just to prove how they actually were not providing her even the most basic requirements, forget "above and beyond".  I cried like a baby when she went that morning because I knew they weren't ready for her but had to let her go so they could see it for themselves. She has since been receiving some home instruction from the school and the new elementary Special Ed teacher has been a god send.

I am not sure how things will unfold.  I am just hopeful for a good resolution. One in that we can all work together to do what is best for Tess. Without lawyers needing to be involved. Right now, I am not sure. It's pretty much all that is on my mind though.

Did I mention the stress? Yeah, this has been a nightmare.  And it is one of the only times I have ever felt like an outsider in my own town.

And that sucks.

A Frugal Girls Fail

This is a pre-Tessie post. Pre-Blake and Ellie. Hell, even pre-being a grown up in a way.

I was married and had moved into the house that my hubby had built with his own two hands, which, as fate would have it, was right next door to my best friend and her husband.

We thought were so grown up. So married. So ready to have kids. So going to have the perfect houses, cars and lives. So everything that comes with twenty-one year olds getting married.

In other words, so delusional.

But I digress. When my best friend struggled to conceive a baby which eventually led to adoption, I was there cheering her on. And when the day finally came that she brought her daughter home, I was so thrilled for her.

I also may have made a few "prank" phone calls to her house that summer when the breeze was just right and I could hear her baby crying through the open windows. Something along the lines of, "Can't you shut that kid up" then hanging up the phone and laughing at my own hilarity comes to mind but who really remembers the minutia from so many years ago?

It was also around this time that my bestie and I concocted the brilliant plan of becoming the best housewives, and for her, mother, in the world because we had decided together, without the hubbies even being made privy to it, that we needed to tighten the old purse straps. Stop trying to keep up with the Joneses (which was really each other), live within our means, become the frugal girls we knew in our hearts we were destined to be. How happy we would make our hubbies! How proud would they be to tell other men of their frugal little wives when other's cried out in distress at their wive's frivolous spending habits. The plan had no downside! What could go wrong?

The day the bubblegum pink stroller arrived it was as if the angels had descended from Heaven and were singing especially for us. There even seemed to be a special glow surrounding that fabulous pink stroller. It was probably God smiling down in all His infinite Glory and letting us know how awesome that  stroller was and how awesome my friend was for not falling into the trap of buying a quality expensive item like the Emmaljunga carriages all the other women were wasting their money on for their babies. No sir. She was a good wife. A frugal wife. And her little baby would do just fine in a stroller that cost three hundred dollars less than those fancy schmancy ones.

This isn't the exact one but imagine some swivel wheels on it and it's pretty dang close


We decided to take the little bundle of joy in the bubblegum pink stroller out for a nice walk. It was a gorgeous spring day and we were in high spirits as we set off from the driveway of my house.

We got about fifteen feet when something seemed a bit amiss with the stroller. It wasn't going straight.  It kept wanting to veer off to the left. We reasoned that it was because those cheesy small, plastic wheels could not get good traction on the bumpy, gravelly road.

We went about another ten feet when I realized the problem was not the tires. Well it was, but one that could be very easily and quickly remedied. You just had to push down on the tire lock so they would stay straight and not swivel all around thus making pushing the stroller an act of total frustration and anguish.

I did not tell the bestie of my discovery. No...I let her struggle with that stroller for about another fifty feet before I became alarmed that she might actually flip the baby out of it. By this point she had the stroller facing in the opposite direction of the wheels so that it was sort of crab walking sideways as she tried with all her strength not to let it slip off into the ditch. And she might have been swearing. And sweating. Profusely on both counts.

For my part, I was laughing like a loon. We are talking hysterical, bend-over-hold-your-knees-and-cry kind of laughter. Until one wheel started to lurch off into said ditch and I thought for a split second, "I may have let this go on a little too long for my own amusement."

I quickly grabbed the stroller and bent down and locked in the wheels. She was overjoyed and I was pretty much her hero until I confessed that I had discovered that little secret trick a ways back. To her credit, she let me continue walking with them and even laughed herself once she stopped being mad at me.

She stuck with that piece of shit longer than any person could reasonably be expected. The stroller too. *badumbum*

The pretty, forest green Emmaljunga carriage arrived about a month later.

The hubbies were none the wiser at our failed attempts at being frugal.

TV Connoisseur

I love television.

 Love. It.

I love the distraction it provides, the entertainment, heck, sometimes I have it on simply for background noise as I read a book. It runs constantly in my house. Silence is definitely not considered golden around here.

Except for the hubby. He dislikes the TV. Really dislikes it in fact. He would very happily live without a TV in the house and has even gone so far as to hint at getting rid of it. And by hint, I mean loudly state how sick he is of it and if it were up to him, it would be gone.

It's like he is speaking in tongues. I just don't understand him.

I mean, NOT watch reruns of Friends, Will& Grace, The King of Queens, Wings or my beloved Little House on the Prairie?!?!?

No Real Housewives of....(pick a city; for me it's New Jersey and New York), no The Voice, Glee, Barefoot Contessa, or Dance Moms?!?!?

No movies that you have seen a hundred times already but are much more exciting and special because they are airing on television?!?!?

You're talking crazy!

I cannot even begin to fathom a world without my "precious", um, I mean TV.

Then there is the fact that I am literally stuck home when I am alone with Tessie. Which, let's face it, is often and while you may be thinking, "There are plenty of things she can do at home other than watch TV.", hear me out.

I am not a crafty girl. I can knit a scarf as long as you don't want any semblance of a design in it or I can whip out a mighty fine dishrag, though again, it is literally a knitted square with no hint of  style. And holes, you must overlook the inevitable holes that will end up somewhere in there. I cannot sew. I do own a sewing machine because I had really great intentions of learning how to sew but alas, not for me. I don't paint, scrapbook or take amazing photographs. I do buy all the necessary equipment to be able to do all of these things because in my heart I am an awesome crafter just bursting with creativity but the reality is, the money would have been better spent on, oh, I don't know, food or bills or something not very fun or crafty such as that.

And thanks to chronic back pain, I don't tend to go all crazy with the house cleaning as it only ends up leaving me in miserable pain. Besides, that's why I have Blake and Ellie. *snicker*

I'm a pretty good cook, that is when I can get to the store to buy the groceries, but it is hard to go into the kitchen and leave Tess is in the other room where I can't see her. Tess must be watched constantly. "CONSTANT VIGILANCE!" (see, a handy dandy quote from a little movie called Harry Potter which was on TV all weekend). As in, barely able to leave her to go to the bathroom. And showers? If I am home alone with Tessie, forget it. Too big a risk to leave her alone so I wait for someone else to be in the house to sit with her. Sometimes I am forced to risk it and leave her alone in order to shower but as a general rule, the anxiety this gives me just isn't worth it.

Also, I need the distraction that these shows provide in order to get out of my head and the constant worries over all things Tessie related. And trust me when I tell you, in the dead quiet is when those worries start to really take root. Nobody benefits if that happens.

So that leaves reading and television. In truth I tend to prefer a good book but don't always have one on hand so TV it is.

Plus, when you watch a lot of TV, you are always ready with a kick ass comeback line for any situation that may befall you. Like the line I used above from Harry Potter. But wait, there's more...

Ran out of gas on the freeway? Perfect response might be from Oh Brother Where Art Thou: "Damn, we're in a tight spot!"

                                                  damn, they're in a tight spot!

Dropping in on friends for the night but don't want to appear to be too needy? You could always come up with that winning line from Christmas Vacation: "We didn't come to impose."

                                               They didn't come to impose.....


Sick of someone always butting into your business with their unsolicited advice? "Get a hobby!" spoken to Jill by Bethenny on Real Housewives of New York would shut them up in a hurry.

                                                  She needs to get a hobby!


Or when something unexpected happens you can whip out, "Oh for Heaven's sakes!" in the same voice as Harriet Olson on Little House on the Prairie. (You totally just did that in her voice, didn't you?)

                                                       Oh for Heaven's sakes!



So, really, TV is helpful on many levels.

Yes, I could be called a couch potato. I prefer to call it a TV Connoisseur.

Rescue 911

It was the Sunday that we left Rangeley. We had appointments at Boston Children's Hospital scheduled for Tessie over a three day span so we decided to book a room on rt1 in Saugus so that we could be close to the hospital. So much more convenient and all that.

It was around 11:30pm and in my dream there was this weird snorting noise. You know how, when real life noises pervade our dreams, we can make them just be a part of that dream? Well, that was and wasn't happening. I can remember that I kept trying to make that sound fit into my dream but I just couldn't.

Something was wrong. Even in my dream, I knew that.                                                          

So I woke up and still could hear that odd snorting noise. I lay there for maybe thirty seconds before it hit me that I did know what that noise was. Tessie made that noise sometimes during a seizure.

I sat up and looked at the heart/O2 monitor and her heart rate was 172.

Shit.

"Charlie! Wake up!', I yelled as I ran to get the oxygen to give to Tessie.

We did the usual but it was really hard to decide when to give the emergency meds. After all, we had no idea when the seizure actually started. How long had my poor Toodle Bug laid there, all alone, thrashing in her bed, before her parents realized what was happening? Ugh, that question really, really haunts me.

At any rate, we did the best we could and after our timing of nine minutes she stopped. I knew right then that we had missed at least three to five minutes of the seizure because she almost always seizes for  twelve minutes or more.

I comforted myself with the knowledge that at least I had woken up in time to help her and that it was over now and she was okay.

Or so I thought.

After about a minute and a half, she started seizing again. Hard. I gave more meds, the most I could safely give her without compromising her breathing, and waited.

She finally stopped again after about another nine minutes.

Charlie and I breathed a very shaky sigh of relief.

Then, after about forty seconds, she started seizing again.

What the hell was happening?

I knew we still had a small window of time before we had to get really scared so I waited. And it felt like I waited forever.

When we were nearing the twenty-five minute mark I told Charlie, "I'm scared. I'm calling Sheila. I know she is asleep and I don't care. I'm waking her up."

So I called Sheila, quickly brought her up to speed and told her Tess had had probably seven or more seizures in the past twenty-five minutes and was still continuing to go in and out of them. She promptly told me to either call 911 or get on the phone to the Complex Care physician at Children's. She was really pushing for me to call 911 though.

So naturally I opted to call Children's. It seemed so overly dramatic to call 911. Or perhaps I was just in total denial of how bad off Tess really was.

The doc very quickly told me to hang up and call 911 and tell them to take her to Children's (I know, hadn't a certain home health care nurse just told me that very thing?). They would be ready for her in the ER.

So I did the thing that I have managed to avoid for nine years. I called 911. It was a surreal experience. I felt like I was on a TV show. I made myself speak slowly and calmly, remembering from watching shows where people did call 911, how imperative it was to be in control so that they could quickly get the information needed to dispatch out the ambulance. (God, sometimes I really impress myself...or maybe I just watch way too much television. Whatever.) The operator asked me if I needed him to stay on the line until paramedics arrived. I said no, I could handle it until they got there. Plus, let's be honest, I was in my PJ's for pity sake and no way was I going to the hospital like that! I need to change, comb my hair and brush my teeth. Priorities people!!

The paramedics arrived very promptly complete with fire trucks. Lights were flashing and sirens were wailing and it was the middle of the damn night in a hotel full of people. And people do love to stare, don't they?

We had the door open so the paramedics could come right in and you know what?

Tess had finally stopped seizing. Naturally.

I apologized to the paramedics for causing such a fuss but they very quickly reassured me that they were extremely happy Tess had stopped but she was still going to the hospital because she had seized for about thirty minutes and if she started again, I couldn't help her. She would need drugs that would very likely compromise her breathing and thus needed to be in a place that could help her breathe if it came down to it.

Okey dokey then. Let's roll.

I climbed in the back of the ambulance while Charlie hopped in the van to meet us there. They got Tessie all settled and did her vitals then we hit the road. They turned on the lights and even whooped the siren a few times. And I must confess, that part was sort of cool.

I know, I know....pathetic.

At any rate, they were waiting for us in the ER and she had chest xrays and belly xrays and was diagnosed with pneumonia and, after six hours in the ER, she was taken to the Complex Care floor and admitted into a room where she stayed for two days and then released.

This isn't actually a photo from this past adventure. Just think of it as a replay.


She has had may med changes in the hopes of getting some control over those stupid seizures. It has been about 11 days since that night and since she has had a seizure. Are the meds working? Maybe. God knows I hope so.

                                         
   Tessie feels my pain. Or at least pretends to. Or maybe she is lamenting the fact she got stuck with such a crazy mom. It's anyone's guess really.
                                

But I have to say, I am scared to be out here on this island, and most likely home alone when she does have another seizure. The what if's are bouncing around my brain like ping pong balls. Plus, let's face it, another winter is coming and I can't help feeling like we are tempting fate by trying to keep a medically fragile child on this godforsaken island when bad weather does strike. Our options are few and the potential problems are many.

Oh well, no one ever said it would be easy. Worth it, for sure. But definitely not easy.

Well isn't that Pinteresting

This isn't a real post. Just some random snatches of things I found, mostly on Pinterest, when I typed in "special needs."

Some days I really need the reminder that other people are going through it too.

Mostly, I just need to remind myself that I am doing the best I can.

And what can I say, some days I do better than others.

This one is from a special needs blogger. Her blog is Love that Max and can be found at www.lovethatmax.com

And now I'm bringing sexy back to special needs (was it ever there to begin with?).  Well, with a little help from some awesome special needs Ryan Gosling memes.

You. are. welcome.

Hello seizures my old friend

If you haven't already guessed from the title of this post, the Toodle Bug's seizures are back with a vengeance.

Or at least, that is what it feels like.

Not that they ever were gone mind you. Oh no. THAT would be just to easy. No, she has had them all along but they have been semi-controlled through her Ketogenic diet and anti-convulsion meds. By "semi-controlled" I mean that she had a seizure at least once a day on average but I didn't really count it unless I needed to intervene with emergency meds which meant the seizure needed to last at least five minutes. The ones I don't count, in fact I will actually call them "fake seizures" even though they are very, very real, last probably a minute and a half to three minutes at most. Her "bad ones" were happening about once every two and a half to three weeks. Now to some people this may seem like not  a long period of time but trust me, this was considered "controlled" in Tessie's world.

Those ones always last a minimum of eleven minutes with about a minute break, then she will seize again for about a minute and a half then have a break of a minute or two, then seize again for a minute or so before finally stopping because the meds have kicked in which means, added all together, she will have seized for around 15 minutes. And no, I don't wait for eleven minutes to administer rescue meds. At five minutes Tessie get 7.5 mg of Diastat (valium) and at ten minutes she gets a 1 mg does of clonazepam. Trust me when I tell you, this is enough medicine to put you and I under the table for about a week but right now, it barely is controlling her seizures when she is having them. I also give her oxygen as soon as she starts having a seizure to keep her O2 stats up. There have been a few times when she has stopped breathing during a seizure, but luckily, this is not the norm for Tessie.

I take my silver linings where I can find them.

The Toodle Bug takes 22 pills a day to help control her seizures. You did not read that wrong. TWENTY TWO per day. And that is NOT counting when she needs the rescue meds. Sigh.

Anyway, as I was saying, she was doing quite well for a while, but the last couple of months things have started to change. I don't know why, which is extremely frustrating.

And then, about a week ago, she had a seizure where I swear to God, I though she was dying in front of my eyes. This is not an exaggeration. I had never seen her do some of the things she was doing during that seizure. It scared about 10 years off of my life and poor Ellie Belle was right there trying to help me which meant I had to at least pretend not to think she was dying.

I am not that good of an actress. I did tell Ellie that Tess was scaring me and then basically lost my composure completely.

I freaked out to the point where I called her pediatrician, in the middle of the seizure, got his receptionist on the phone and pretty much screeched at her to get Dr. Stephenson on the phone NOW because I was so scared.

He promptly picked up and in an extra calm voice, in what I am pretty sure now was an attempt to try to calm me down, got me to tell him what I was seeing. Thankfully he did not join me in my own little hysteria party and asked some basic questions starting with, "Is she blue anywhere? Is she breathing?",
at which point it donned on me that, why yes, yes she was. Okay then.  Deep (and very shaky) breath for me.

Dr. Stephenson stayed on the phone with me for the remainder of the seizure to make sure she came out of it all the while going over plan B to me should she not.

She seized non-stop for eighteen minutes.

Ellie sat with Tess the whole time and when Tess finally stopped, Ellie stayed right there with her until Tess wore out and fell asleep from all the meds and the toll the seizure had taken on her poor little body.

That was not a good day.

Nor were the next couple of days after that, at least for Tess, because the seizures and meds are so hard on her that it takes days to recover and right now at least, she no more than gets a day or two of feeling good again when she gets hit by another one. It is awful to watch my giggly, happy girl want to sleep all the time and when she actually is awake, is so spaced out that she could care less what is going on around her. We all will practically dance on our heads just to get a smile out of her.

And the reality is, I am scared.  Scared of what this change could mean for her. Without a diagnosis we have nothing to hold on to, nowhere to look for guidance or to help us predict what comes next. We are flying blind and making up the rules as we go along and as her pediatrician likes to say, "Tessie does not like to play by the rules."

 Ain't it the truth?

We are taking her to Boston Children's Hospital next week for some appointments, one of which is with her epilepsy doctor. Charlie and I have decided it is time to stop the Ketogenic diet (which is overseen by this doctor) because it is just not working anymore and we are tired of never being able to give Tessie tastes of anything like ice cream, or popsicles or lollipops, etc not to mention having to be careful about what lotions we use on her, what wet wipes, even the sunblock and toothpaste have to be approved for the diet and when she needs antibiotics, which is frequently, they also had to be approved before she could get them. This diet requires CONSTANT VIGILANCE (as Mad Eye Moody would say...Harry Potter fans will totally get this reference). She will always need her feeding tube to provide her nutrition but will go back to regular formula instead of this specialized one we mix for her every day in the desperate attempt to help with her seizures.

As far as the seizures go, I am hoping that they can increase a med here or there to help get them back under some semblance of control.

In the meantime, life goes on and we are in Rangeley on vacation.

Of course no day goes by without at least one viewing of Toy Story 2 which, if I am being honest, can induce a seizure because she gets so excited. But just look at how happy it makes her. At some point, quality of life has to take priority. Plus, who could resist this face?

Tess had a small seizure this morning but stopped after three minutes. She slept the rest of the morning but had a pretty good afternoon and even dipped her feet into the lake and, yesterday, we took her bowling with all of us plus The Bean (natch), Jeff, Kris, Drey and Becca and my dad and Ann. She had fun and even managed to beat one of her big sisters.

Of course, what with being an Olympic Champion at bowling, are you surprised?

Me neither.

Some days are really Fleeting

Today has been one such day. But perhaps not for the reason you may be thinking.

I had to give Tessie an enema today. You read that correctly. A Fleet's enema.

Oh. My. God.

The Toot's hasn't been feeling too hot lately and I think the culprit is her little belly. Of course, faced with a myriad of possibilities, and a child who can't talk,  you may wonder how I so skillfully managed to figure out the mystery.

Simple.

 I called  Nurse Sheila. (If I were an analogy word problem on the SAT's I would be written as such: Sheila is to Joanna as a security blanket is to Linus. Charlie tells me to stop bugging her at work. Whatever. Linus is never without his security blanket. Just sayin'.)

We discussed all of her symptoms; increased heart rate, increased seizures, sleeping a lot, and oh, yeah, not really, ahem, pooping all that much. Gross, I know.

We pulled out the usual bag of tricks but to no avail. Things were becoming desperate. It was at this point that Sheila and I decided that Tess needed an enema. Sheila has given her an enema before. She is a nurse, and while not her favorite thing to do, it really isn't a big deal to her. I was more than happy to let her deal with that situation at the time but here we were again and my faithful Sheila was an ocean away.

Sigh.

I very heroically did my duty as a mother. And Tess did her doodie too. Duty and doodie. Say them together. They sound very similar, don't they? Well I'm here to tell you, they aren't.

Sounds that should never be heard coming from a small child were reverberating out of The Toot's like buckshot. Noises that made the hubby and I stop and stare at each other in a near panicked state. He very unceremoniously dumped her on her bed and left me to deal with the outcome. Literally. Round one goes to Tess and Charlie.

 I don't even know why I am blogging about this of all things. My only excuse for even exposing you to this unbelievably disgusting event is that I think I am in shock from dealing with the aftermath that even now, two diapers for Tess and a pair of shorts change for Charlie later (he was holding her when round two hit which was extremely funny to me; him, not so much. Round two goes to Tess and Joanna), I fear is not over.

I will be approaching her tomorrow very much like a member of a bomb squad would when faced with an unknown package that could blow at any minute. Very delicately and with precision like movements.

For her part, The Toots is now very happy. The old saying, "happy as a pig in shit" instantly comes to mind (I know, lame. It was just too perfect to pass up though). And bonus, her heart rate is down.

I am hoping tomorrow will be a good day for us here at Casa de Reidy.

And God willing, it will not be FLEETing.

Let them (NOT) eat cake!

Yesterday was the Toodle Bug's 9th birthday. Typically her birthday can be a hard day for me but for many reasons, this year for the first time ever, it really wasn't.

Probably because I almost forgot it was her birthday. I know, right? Loser mom here.

In my defense, this month has been a whirlwind of one thing after another. Between Charlie's birthday (that was also nearly forgotten), Knowledge Quest at school, Baccalaureate, Senior Farewell, Graduation/Grand March and then, the day after graduation attending Blake's college orientation (this was also on Father's Day) and getting her off to Paris on her French Club trip, Tessie's birthday just sort of got away from me this year.

It was on Wednesday that it hit me that Tessie's birthday was the next day. I mean, it's not like I hadn't known it was coming. I had thought about it several times but never really did anything to prepare because I was busy trying to get through graduation and making sure everything was ready for that. But, when you live on an island, you need to be prepared. There is no place to get party goods at the last minute.

Whoopsies.

And to top off my loser mom status, I had no present ready or even thought of to give her. You are totally shaking your head in disgust right now, aren't you? It's okay, I am too.

Still, like any good magician, I managed to pull the rabbit out of the hat and give her a family party complete with balloons and things I had left around the house from the ghosts of birthdays past that looked festive as well as a token present from a local store that she actually really likes.

All in all it looked like I hadn't really forgotten. It wasn't up to my usual standard because I am a girl who likes parties to look coordinated and well thought out but at least you could tell it was a birthday party.

Okay, okay, this was a train wreck as far as giving a nine year old a party goes BUT there is one thing I very intentionally did this year that I have no regrets about. Zero. Nada. None.

I refused to make a birthday cake for her.

Now this may seem cruel and uncaring but hear me out. Tess cannot eat the cake. She cannot even lick the frosting (remember she is on a very specialized diet for her seizures that allows for NO sugar at all, plus the risk of her aspirating anything we might allow her to taste by mouth even if she wasn't on this diet). She would be forced to have the cake shoved in her face while we all sing to her and help her blow out the candles that she cannot actually blow out. Then we would whisk the cake away from her, all eat it in front of her, and not let her have any. Now to me, that is just cruel and unusual punishment.

So, no way, Jose'. Not this year. We all sang her Happy Birthday after she opened her presents and very quietly had brownies that she never even had to see.

And that is why, despite all the things I did wrong for her birthday, I can still feel okay about it in the end...

 because I did not let them eat cake!