Friday, January 28, 2011

Ellie Belle...

You have heard lots about Tessie, some about the hubby, and even a story about Blake when she was little. Am I missing anyone? Oh yeah....

Ellie Belle.

Ellie was five years old when she decided to inform her kindergarten teacher that she wanted a baby brother or sister. It even made the wall outside the classroom of the kids wishes. I laughed about it but little did she, or anyone besides the hubby and myself know that she would soon get her wish.

Several months later I did get pregnant. We waited until I was three months along before telling the girls in case something bad happened. It was a riot. By this time Blake was eight and Ellie was six. Ellie acted really excited while Blake came up with the dreaded question.

How did you and daddy make that baby?

I answered truthfully while not being overly descriptive. She got the point enough to run from the room in horror with her hands over her ears while yelling "Gross! Gross! Gross!" and then, when she regained control over herself came back to me and said, "So mama, if the baby in this picture is three months old (she was holding a picture of my twelve week sonogram), then that means that was the last time that you and daddy did that, right?

Absolutely.

As I got further along in my pregnancy I noticed that Ellie became terrified that she was going to die, I mean terrified. It really worried me. She was in an agony of fear and anything she came across would fire it up. I couldn't understand where this was all
coming from and was afraid that she may be developing some type of lifelong anxiety disorder. Luckily, I was wrong.

It all came to a head on New Year's Eve. I had spasmed my back and was laid up literally on the floor of the living room and was in misery. Blake and Ellie were spending the night at my mom's house and around midnight we got a call from her.

"Ellie is very upset and wants to go home."

Charlie immediately went to pick her up and she came home and was crying and scared of dying and I was frantic to help her feel better. I asked her if she wanted to lay next to me on the floor and she did. We cuddled for a bit and when she was calmer I began to gently question her about all of her fears. I came up with every possible scenario from movies that she had seen to other kids telling her stuff but none of it was right.

Then I hit the jackpot. "Is it about the baby?"

"Yes."

"Are you afraid I won't love you as much and you won't be as special when there is a baby around?"

"Yes"

I felt so bad for her because that was what was causing all of her stress plus she felt guilty for feeling like that (and I wondered if the guilt somehow manifested itself into her dying) so she didn't dare to tell anyone. We talked for a long time about it and I assured her that babies only added love, they never took it away and that she would always be special, that there could never be anyone who could take her place.

From that day on she was genuinely excited to be a big sister and what a big sister she has been.

When Ellie enters the room and talks to Tessie, you would swear that for Tess, there could be no higher thrill in life. Ellie always, always, always makes time for Tess and I very rarely have to ask her to do something with her. Tess giggles and laughs and shakes in pure delight at Ellie. And the icing on the love cake, Ellie can repeat, verbatim, all the lines with the correct inflection, to the Spongebob Squarepants Movie.

When Tess is in the hospital, Ellie will take a day and come to see her and crawl right in to the hospital bed beside Tessie and just lay for hours with her because it makes Tess happy. She has all the patience in the world with Tess. She is proud of Tess and accepts her for who she is. She went to Special Olympics with us and helped her bowl and we had a blast. She sings to Tessie, and muck like Tessie, Ellie is a snuggle bunny so the two are a perfect fit.

One time Ellie was keeping an eye on Tess so I could have a shower and when I got out, Tess was in the throes of a seizure while Ellie was gently stroking her and talking to her and timing the seizure. When I asked her why she didn't yell for me to get out of the shower she simply said, "I knew what to do," And she wasn't lying. She was all over it.


Like any mom, I could go on and on but will suffice it to say, Ellie is kind, smart, funny, gorgeous, and in general just a great girl and I am so proud of her,

Not only because she is an awesome big sister to Tess, because she is awesome. Period....

Friday, January 21, 2011

48 HRS...

Tuesday 8:51 a.m.
Seizure.
8:56 a.m.
administered Diastat
continued seizing.
9:01 a.m.
gave 2mg of Ativan via G-tube
continued seizing
9:09 a.m.
seizure broke
9:10 a.m.
another seizure
9:11 a.m.
seizure broke
9:12 a.m.
another seizure
9:14 a.m
seizure broke

By this point Tessie had all the meds that I could give her so hopefully she was finally done seizing. The reality is, if we lived on the mainland, this would have been a trip to either her pediatrician or the E.R.

I called Sheila.

The rest of the day Tessie was not a happy girl. She looked awful, she smelled awful because of how bad she sweats during seizures, and she felt awful. I personally do not think that the Ativan reacts well to her and that it makes her feel sick and jittery. If Tess is capable of having anxiety, it would be the word that I would use to describe her after she has had Ativan. Anxious.

Ironic, isn't it? A drug intended to calm the system makes her's go into hyper drive.

She looked like she had a few petite mal seizures a few times throughout the morning but I really wasn't sure so I never called the doctor. I felt very uneasy however. And by bed time I decided that Tessie needed to sleep with me so that I could keep an eye on her during the night.

And what a long night.

11:00 p.m.
Tess is awake and unhappy.
12:00 a.m.
Awake and unhappy.
1:00-4:00 a.m.
sort of sleeping between bouts of whimpering.
4:00-5:00 a.m.
fully awake and crying.

Due to the Ativan, she couldn't sleep and her belly was upset and she just felt crappy so she was very fidgety and restless all night. Even crying at one point. That is a heartbreaker. Tessie almost never cries so when she does you know something is wrong. But what? That is always the mystery. I did what I could and she finally fell into a good sleep around five a.m.

Wednesday
All day Tess watch. Is she tensing up? Is she getting ready to seize again? Is she sick? Should she see Jen? Should I call Boston? Am I imagining half of this? The watching and waiting are exquisitely intense for me. I feel like every decision that I make is literally life or death and that leaves zero margin for error. Exhausting does not begin to describe how it feels some days.

Even Charlie was worried by Wednesday night because she was still not acting right. And he hardly ever outwardly expresses his worries about Tessie. That did not help my anxiety level, let me tell you. But we put her in her own bed after hooking up her alarm and hoped she would be better by morning.

Thursday 8:36 a.m.
Tessie's alarm is going off but I could see her in the monitor and she looked okay. I figured the probe had slipped off of her toe. But it kept alarming. Hmmm...
8:37 a.m.
I go in to see Tessie expecting to find that the alarm is misreading only to find that the alarm is accurate and her oxygen level is in the low 80's. I quickly grabbed her jump bag to get the oxygen started on her and when she went into a full blown seizure. A bad one. I start timing.
8:40 a.m
Sheila arrived from ferry and I yelled "She's seizing!" Sheila ran in and immediately noted that Tess had her jaw locked shut which is why, even with the oxygen on her, I could not get her stats above 92. She shoved her knuckle into the side of Tessie's mouth and her stats immediately improved. Holy Scare Batman!
8:42 a.m.
Diastat administered
continued to seize
8:47 a.m.
2mg of Ativan given via Gtube
8:51 a.m.
Seizure broke and I promptly burst into tears.

Poor Sheila. Dealing with a sick kid and now,a hysterical mother. I think I knew it was going to be a rough day but I had no idea how rough it was about to get.

Tess began having petite mal seizures and wasn't stopping. About every fifteen minutes or so they were coming. We had given all the meds so Sheila paged out the pediatrician, Dr. Stephenson. He got the lowdown on what had been going on and told her to give her another 2mg of Ativan.

I burst into tears. Again. Sheila told him that hearing that scared me enough to make me cry (remember, I do not think she reacts well to that drug, plus it depresses breathing and how much more could she take before she stopped breathing?) so he, being the kind soul that he is, told Sheila to give another dose of Diastat instead in then call him back in a half hour. If she was still seizing we would be flown off the island or transported by ambulance on the ferry.

Sheila gave Tess the med and told me I had about twenty minutes to shower and pack. I got busy.

10:20 a.m.
the second dose of Diastat seemed to calm her down but, after discussing everything with doc Stephenson, he decided he needed to see her and we thought she was done seizing finally so we figured we could take her on the ferry in my van.

During the ferry ride we thought we saw a couple more petite mal seizures but nothing too scary although we were glad we were heading to the mainland.

12:38 p.m.
as we are getting Tessie back into her car seat to go to Sheila's to wait for our appointment with doc Stephenson, Tessie had another scary seizure. "What do we do?" I asked Sheila. "Either E.R. or Dr. Stephenson's now!" She got the oxygen on Tessie and I sped out of the Rockland ferry terminal and hit every single rotten, sucky, horrible, red light on the way.

We went screaming into Dr. Stephenson's office and I told Sheila to just get her in there and I would get the car parked and locked in be right behind her. She ran in and they whisked Tess to a room.

12:46 p.m.
Seizure broke
Dr. Stpehenson came right in and did an exam while singing to Tessie, "Tessie's my girlfriend, don't tell my wife!", and, after not finding anything immediately wrong, asked us to stay in his office for a while if we didn't mind so he could keep a close eye on her and call her doc in Boston to collaborate. No problem!


2:45 p.m.
We leave Dr. Stephenson's office with a plan of attack for the night/weekend and an appointment for Tessie in Boston on Monday. He and her Boston doc decided that since we were staying with Sheila, Tess did not need to go into the hospital unless she seized again or unless I would prefer her to be there. I said no, I was fine at Sheila's. We did have to go get bloodwork done and they made some med changes and then we went to Sheila's and got settled in for the night.

Tessie had another day of feeling crappy from everything and Sheila and I were both fried. But so far so good. Tessie made it through the rest of the day and last night without any real trouble, other than fussing from feeling terrible however, I am worried about tomorrow morning because 48 hrs seem to be the magic time between seizures and that will be at 8:36 in the a.m.

I am still at Sheila's as I write this because it is storming out and I have been told by the doc to be off the island with Tessie during bad weather (and it's only January. It's going to be a long winter I am afraid), and because of the potential for another seizure in the morning. Plus, he asked me to call him before I took her back to the island.

I am really hoping that we can go home in the morning. I have two other girls who need me too, and I need them not to mention my hubby. Plus, Blake and Ellie have a basketball game that I really hope to make it to in the morning.

Hope. That is the key word. I hope...for lots of things...

Saturday, January 15, 2011

Here comes Peter Cottontail...

Lately most of my posts have been more serious and let's face it, there is a very good reason for that at the moment. I mean, I am in a forever state of Flight or Fight as far as The Toots is concerned and I never know, minute to minute, what is coming next and that makes for a more serious state of mind. Thus the more serious tone to the recent posts.

But I am sick of it and in general I am a girl who likes to laugh and although here and there Tessie has done some funny things recently, after all, she is funny kid, there hasn't been any really 'funny story' type things to write about, and since I don't want one more serious post without a bit of humor spread around, I am going to tell you a story that has nothing at all to do with Tessie. She wasn't even born yet. Not even a twinkle in her daddy's eye. So forgive me for straying away from this Blog's intended topic. I just needed a laugh. I hope you laugh too.

It was Easter. Literally Easter Eve if you will. It was the first real Holiday with Blake in an upstairs bedroom (all of ours were downstairs at the time) because she thought she was too old to share with her 'baby' sister, Ellie, and lucky for her, her dad is a carpenter so voila, an upstairs bedroom was banged out.

The kids were in bed and I, ahem, excuse me, I mean the Easter Bunny was getting their Easter baskets all ready. And I must confess, I do way too much for Easter. I'm talking clothes, shoes, games, toys and candy all bundled into the cutest Easter baskets I can find and topped off with some type of stuffed animal, generally a bunny.

The hubby and I went down to bed around nine-thirty or so. Right after I had finished hiding jelly beans around the house for the kids to find in the morning. About midnight or so I heard Blake's voice float down to my bedroom.

"Easter Bunny, I need to go to the bathroom so I am coming out!", she called.

The next thing we hear are her little feet running just as fast as they could go to the bathroom. Then...

"Easter Bunny, I am all done and am going back to my bedroom."

I started cracking up. What the heck was she calling out her exact locations to the Easter Bunny for? I was about to find out.

A few minutes after she had, like a marathon sprinter, raced from the bathroom back to her bedroom I heard her call out.....

"Easter Bunny, I am going downstairs."

Then a frantic race to our room where she cried out, "I think that the Easter Bunny is going to shoot me!"

Huh???

She was really quite upset about it and we could not figure out where this all came from but luckily her sister's bedroom still had bunk beds in it so we told her to sleep in there with Ellie. She thought that was a marvelous idea so we got her all tucked in and the hubby and I went back to bed.

Charlie and I were talking and trying to figure out why she was so scared of that damn bunny when we heard her whimper, "Daddy, I think that the Easter Bunny is hopping up the ladder with a gun!" I lost it. I knew that I shouldn't have been laughing but come on, It was just too funny.

So Charlie got up and went in and made a big show of checking out the bunk bed ladder, and the rest of the room for that matter and reassured her that the Easter Bunny was not in the house anywhere and even if it was, that the Easter Bunny loved her and would never hurt her, then got back into bed.

A few minutes later, this time rather hysterically and completely panic stricken, we heard, "Daddy, I think it's out on the deck looking in my window!" Even Charlie was cracking up now. But he pulled himself together to go in and pretend to check the window and once again reassure Blake that the Easter Bunny was not trying to shoot her.

Back into bed, thankfully for the night this time. But Charlie and I laid there and laughed 'til tears ran down our cheeks. We talked about how she was going to really hate us someday when she learned the truth, that in fact there really was no Easter Bunny and how her therapy bills would be astronomical. We laughed and laughed and laughed picturing a friendly looking yet deranged, big eyed, big eared bunny rabbit hopping up Blake's bunk bed ladder with an AK47 to take her out muttering, "Happy Easter you little brat." What can I say? My sick sense of humor didn't just come along after I had The Toots. It has always been there.

We never did figure out why she thought that the Easter Bunny had it in for her. I sometimes wonder if it freaked her out when she came out of her bedroom and in the darkness saw the shadow of a rather large stuffed bunny that was propped up on top of the basket which was on the coffee table and thought that she had really seen the Easter Bunny and thus must die. Who knows? Kids minds are strange little places at times.

But it still makes me laugh whenever I think about it. The terrifying tale of a little girl and the rabbit that was out to get her.

Here comes Peter Cottontail, hopping down the bunny trail...

Sunday, January 9, 2011

Oh baby, baby it's a wild world...

...it's hard to get by just upon a smile.

Ain't it the truth? Say what you will about Cat Stevens, but the man wrote some good music. And this was the song that came to mind while laying in bed with The Toots the other night.

It all began when Tessie had a seizure on Christmas day. It had only been a few days since her previous seizure and I was kind of surprised to see another rear it's ugly head so soon. Since our eight day stay at Childrens in November and more medicine increases, the seizures were happening about every 10-14 days. Quite a nice reprieve, let me tell you. But it had only been four days. Hmmmmm....

Then, four days after that, another one. It was kind of freaking me out but I chalked it up to an antibiotic that she was on. My thought that either the antibiotic didn't agree with her or that it was messing with her highly specialized diet.

Two days later another seizure. This one was bad indeed. Not that any of them are good, but this was a whole new monster. One that I hadn't dealt with before. The seizure that wouldn't quit.

I dumped a whole slew of meds into her little body and administered the oxygen and basically prayed. Then, after about 19 minutes it stopped. Or so I thought. Hold on, she was back into another one-hard. What was going on?

We were in trouble and I knew it. I called Sheila and told her what was up. Sheila, my own personal security blanket told me to hang up and call Jen. I called the medical center and irony of ironies, everybody was out on an emergency call. Got that? There was no one to help. Not the best feeling that I have ever had I can tell you.

So I hung up and called her pediatrician, Dr. Stephenson. The receptionist answered and I said, "Get Dr. Stephenson for me please."
"He is with a patient..."
"Get him NOW. Tell him this is Joanna Reidy and that I cannot get Tess to stop seizing."
"Hold on."
"Mama Reidy, what is going on with my girlfriend?"

So I launched into my saga, probably a bit hysterically because by this time it had been thirty minutes. He had me check her oxygen and she was maintaining it so he felt a teensy bit better. I explained that all the island docs and the ambulance were already out on an emergency and asked what I should do.

Of course, while I was on the phone with him, Tessie finally stopped seizing for good. Thank God. He told me to keep her monitors on her and watch her closely and call him back in an hour. If she seized again, we would be flying over either by plane or lifeflight depending on her status. Great.

As soon as I hung up with him the fill-in doc at the medical center called. He was very concerned but pleased with how I handled everything (which made me feel good) and agreed with Doc Stephenson. We would wait and see how she did. And, I would like to point out, that while it seemed I had no help, the ladies behind the desk at the medical center made sure I got called as soon as the doc returned and I appreciated that very much. I also knew, that if need be, I could page out Jen myself but then what? Make her decide who needed her more I guess. What a fun position to put her in.

Anyway, Tessie put in a crappy day but no more seizures and all docs called back before leaving their offices for the day, which is always a nice thing when you are a scared mom, and of course, Sheila was on stand by via telephone.

We stopped the antibiotic and about a week went by without any big seizures although I think she had a couple of very small ones, so I thought things were sort of, kinda, back to normal. Well, our normal anyway.

Then I went to the basketball games Friday night. The Hubby stayed home with Tessie because one of her seizures the week before occurred at a basketball game. How thrilling for us. The game was great but I kept thinking about The Toots. That little knot in my stomach was starting to talk to me again. Enough so that by the third quarter of the boys game I got up and left to go home.

When I got home everything was fine. Hubby was getting Tessie ready for bed and had everything under control. Huh, must be getting paranoid I guess. Then, as I was setting up her feeding pump, I heard him say to me, "she's going into it."

This was another doozy. I called Sheila after sixteen minutes and she called Jen. this seizure lasted for about 22 minutes of her going in and out of seizing. Jen called me and we discussed strategy for the night. Obviously Tessie would be sleeping with me but, and here is where things get really fun, we had just given her her night time meds and then had to give valium and ativan on top of all of that. Would this suppress her breathing? We did not know, which meant I was on high alert for the night.

Tess handled it all like the trooper she is but I was a wreck all night. I would doze off to sleep and then jerk awake to check her oxygen monitor. Every time I woke up she was wide awake. I felt so bad for her. Ativan for most people knocks them out. Naturally, Tessie reacts as only Tessie would and it makes her twitchy and restless. I would try to stay awake to talk to her and hold her hand but then would doze off and repeat the scenario all over again.

So, right now I do not know what is causing her seizures to be so bad. I would bet that we will be making a trip back to Boston sooner rather than later. And I don't know what they will, or can, do for her. I have done a lot of research and know there are things still left to try, albeit not many and not what I would like.

I thought of all this and more and of all the questions still left unanswered as I lay next to my baby and wondered why her? Why us? Why, why, why?

And then I thought, why not?

Oh baby, baby it's a wild world....

Thursday, January 6, 2011

I am the Child...

A couple of years ago I made a photobook for my mom, Ann, and Charlie's mom for Mother's Day and had Blake and Ellie write poems for it. For Tess, I searched the web.

I was looking for poems about children with special needs. And by the way, I hate that stupid label because ALL kids have special needs and there is nothing wrong with saying, 'I have a child with disabilities'. You are not saying that the child has no abilities at all, just saying what is, they cannot do every thing that most able-bodied people can do.

Wow, got off on a tangent there! Anyway, I found several of the cliched ones you would expect to find which always make me want to puke over their sappy, sugary, 'life is perfect even though it isn't' crap, and a few really good ones that made me say, "These people get it".

And then I got it. I'm not sure I truly did before reading this. I'm not sure I ever really got past my own feelings about Tessie to wonder about hers. I mean, sure, I wondered what she thought about or if she felt left out or was hurt. But I never really wondered about whether or not she could feel my frustrations about her situation or my lack of patience with certain things.

And I am so thankful that I stumbled across this poem because every time I feel that frustration and impatience creeping up on me, I look at Tessie and think, "Why am I getting so upset about this? Imagine how she feels." And it usually dials that attitude right back down.

I guess what I am trying to say is that what this particular little piece really did was to give a "voice" ,so to speak, to Tessie. And I really do believe that if she could, my little Toots would tell you all of this herself.

So please read the following carefully. I did not write it but I wish that I had...

I AM THE CHILD

(Author Unknown)

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.