Thursday

Well we got good news today.......... I am going to be getting therapies at home. Now Mammy has to get cracking on the Board of Ed to see if I can keep getting home instruction. She called the other day and the lady told her to hold on and she hung up on Mammy. That's not the first time that has happened. You know the board of Ed placed me in a bilingual class room for kindergarten I don't know Spanish I am Irish and Italian so where do they think I would know Spanish? Mammy only speaks English to me as she said I had enough problems with out confusing me by teaching me another language. Daddy only speaks English even though he is the Italian half. Oh well thats a fight for another day.

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The week so far

Well I haven't had any "bad" seizures since Sunday. Now the ones we say are "bad" they are the ones that I have to get the up the butt for. I have had a few tonic seizures and they hurt and afterwards I don't like any one touching me for a while. I threw up the other day its been a while since that has happened but thankfully it hasn't happened again.

Otherwise I am doing okay a bit sleepy but as Mammy would say "its the weather"

Eoghan and Maurs get their holidays on Wednesday so it will be a bit noisy in the house during the day. Got the call that my tummy surgery has been all cleared by the insurance company. Mammy is still waiting for the papers for my surgery that is coming up in 2 weeks the one where I get my hard ware removed.

Oh well

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I am the Disabled Child
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 to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor 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 around 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 ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.


I am the child who cannot walk.The world sometimes 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 top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you 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 the simple things.I am not burdened as you are with the strife's and conflicts or 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 give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious 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

Author Unknown

Thanks Debbie

Saturday morning started off with me not being able to swallow my own spit and Mammy had to use the sucko machine. At the same time she's telling me not to worry I'd be all right. She gave me an up the butt to stop the seizure. I haven't had one like this in a long time and I mean a long time. Mammy took me to the peds to get checked out and yup I still have the ear infection in my right ear but the drops will take care of it but I now have an ear infection in my left ear. So the peds gave me some antibiotics to take to get rid of it. I know some people wouldn't agree with me getting antibiotics for my ear but I really need to keep my hearing. IF I lose that ........... well we just won't go there.

Other than having high heart rates the rest of the day was okay. We had some thunder storms roll through and I did fine no seizures.

Got to hang out with my Godfather a bit today he is over here on holidays from Ireland.

Hopefully I won't have any more bad seizures for the rest of the weekend.

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Thursday

Oh well lets see where I will start. OK well we went to the ENT doc today and I didn't feel right and Mammy said I looked a bit jumpy. Get to the docs office and we were waiting for our turn and the next thing my machine started beeping. My heart rate went over 230 well Bonnie took me out and started walking up and down the hallway. The nurse put us into a room as we were next and then thats when all hell broke loose. I had a bad seizure and they had to give me an up the butt to stop it. The doc came in and all he wanted to know if we needed to go down stairs to the ER. But Mammy kept saying I was all right and he wasn't to worry. Well lets just say I was out of it when he checked my ears out. I have a slight outer ear infection but that wouldn't cause the seizures that I am having. So I have to have the drops put in my ear again for a few days.

I get home and I am fine, I am chatting up a storm and I even talked to Nanny on the phone. Other than having stinky nappies I am doing great.

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Oh Maddy called and my belly surgery has been changed to June 6th.

The last few days

The last few days haven't been too bad. I have had a few little seizures but thankfully even with the thunder and lightning the other night I haven't had any more bad ones. May be my body is finally adjusting to the weather changes.

Mammy was a sleepy head today but in all fairness I have been keeping her up at night. She can only go so far on little sleep so she had a long nap today. She did wake up in a better mood but she was still tired. So she went back to bed for another nap now she is up and ready for the night.

Later today I go back to the ENT doc to get my ears checked out. We will just have to see what he says later.

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Seizures, phone calls, surgery

On Saturday evening I had a crying fit. Yup I woke up screaming and I don't know why? It took along time for me to calm down in the end it was Mammy's arms wrapped tight around me and my music that calmed me down.

Sunday was a sleepy day well after the crying session on Saturday any one would be tired. Sunday night I had another seizure but thankfully she didn't have to give me an up the butt. My leg was sore after the seizure. Well you can just imagine having the mother of all mothers of a cramp but to have it all on one side of your body that thing hurt.

Monday morning bright and early Maddy called and said that they are going ahead with my surgery on my belly. But the date didn't work as I am having surgery to remove the pins from my legs so the belly surgery was rescheduled for the 16th of May. So now thats all set up Mammy was still waiting for a call form the neuro's office to see what they thought of my weekend.

Got the call back and Mammy was hoping that they weren't going to mess with my meds. Well they didn't thankfully but they did suggest that we come in and talk about getting the VNS. So it looks like I might have another surgery on the books if we go through with it.

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Some pictures of me and Maurs

Hahahaha its funny
Me and Maurs
Mammy likes this one of us
I wonder who is that cool looking dude?

We haven't seen this one in a while

This is what happened to me last night. Mammy was hoping that it only happened on one side I wouldn't have to go to the emergency. Well Mammy was able to get it stopped with an up the butt. That I didn't like but the seizure was worse I wasn't able to stop my leg and hand twitching and then my breathing was funny too. The last few time I have had this seizure Mammy hasn't been able to get it to stop at home but then both of my legs and arms were twitching and I have ended up in the emergency. One time even in the emergency they were not able to stop it and I ended up in special care on a machine that helped me to breath.So of all the seizures and episodes that I have this is the bad one.

Maura made her First Confession today and we went to the Church with her. I was all dressed up in my shirt and tie, jacket, jeans and you know what happened? As soon as we sat down in church my heart rate dropped. Maura kept pointing at my machine to let Mammy know well. So Mammy just laid me across her knees and started to rub my chest to make my heart rate go up but it wasn't working so she pressed down a few time hard and that did the job. So my heart rate went from 48, to 56,to 74,to 111,to 156,to 193. It went back down to normal after about a minute. Everything has been fine since. The weather is really nice outside and Mammy is blaming the change in the temperatures for the episodes may be she is right.

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Tuesday sucks

You don't have to watch if you don't want to. You can hear Mammy and Bonnie talking about what was happening to me. I had a few other smaller episodes so they gave me an up the butt to stop them. They called the Dr.A to let her know about this one.

The weather is crappy and it really makes me weird and stuff happens to me.

Rain rain go away

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The Weekend

Well lets start on Friday, I was sucking back oxygen and sleeping a good bit but doing OK. On Saturday we were busy went on the bus well we had to take Eoghan and Maura to Scoil Gaeilge. While there the batteries died in my pulse ox machine no big deal Mammy went to the shop and got more. Came home and I got to hang out in my Man Chair. Maura likes to hang out with me on it and we have fun. Mammy got to have a good nights sleep as Daddy stayed up with me.

Sunday was a very lazy day my machine was beeping a bit but it would stop on its own. I slept a good bit too so Mammy has me listening to my music now.

It was funny Mammy went to Costco to do the shopping and we knew when she got back. She pulled in to the yard down stairs to unload the shopping and we could hear the music. She had Celtic Thunder blasting in the van. I guess that was the biggest excitement of the day.

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