You know what tickles Mammy the wrong way ????

Come here and I'll tell you. She doesn't like it when people call me " The Baby ". I know I am the youngest but you really have to remember that I am 6 years old so I really am a little boy or as my Nanny says "little man" or as others call me " the little lad". I know I wear nappies, I know I like to chew on a pacifier, I know I suck my thumb, I know I don't walk, talk, sit or see but I am not a baby I am Finnian.

Mammy has gotten to the point now that she just either ignores when people call me "the Baby" or she will just say "you mean Finnian ". To Mammy I have always been Finnian never the baby even when I was a baby. She says they spent a lot of time picking out the right name for me and she might be friendlier to people if they used it and not call me "the Baby".

So remember I am Finnian not ................ Its Finnian

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No answers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well all of the test but 2 of them were back and everything they tested me for was negative. Yup I am normal hahahah. They are nearly sure that the other 2 test results will come back normal too. So where does that leave me? Undiagnosed with a load of symptoms.

This morning I had an episode that we cannot say was a seizure of if it was a mini stroke. Yes kids can have strokes I am already a stroke survivor but we don't know what caused my first one. May be that's where we will find the answer for all my issues but then again may be not.

I have to get a new MRI done to check out to see if it shows new stroke damage. Mammy also had to see if she can get any of these seizures/episodes on film to show the doctor. You know they just happen no warning. This morning my alarm went off and it showed my O2 was only 82 and my heart rate was 168 it has been higher. They only other thing that you could see was I was drooling and couldn't seem to move the left side of my face. So what do you think mini stroke or seizure?

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Tuesday

Well today was a normal day for me nothing too exciting........ well besides nearly giving my teacher a bit of a heart attack. I really pulled a fast one my heart rate dropped down enough for the alarm to go off. So now at least some one else knows what can happen to me as quick as you can snap your fingers.

I would like if you could think about one of my Warrior friends Heather Riley got rushed to the hospital today because of her seizures.

Big appointment tomorrow lets see if they have figured out what is wrong with me

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Monday

Well I was "Rocking da Bronx" last night and I didn't go to sleep until the wee hours of the morning. You know what happened during the day? Yup thats right it was lights out after my shower and I didn't wake up until around 1pm.

Mammy is caught between a rock and hard place right now over the surgery on my belly. 2 doctors want me to have it done and the man who would be doing the cutting, tucking and wrapping cannot find enough wrong with me to have it done. So my GI doc is going to talk with the surgeon to see if he will change his mind. Mammy know if its something that my brain is causing the surgery will not work so why put me through it.

Remember a few weeks ago I had a load of tests and biopsies done? Well Mammy will find out on Wednedsay what the results are. Place your bets 1 they found something? 2 They didn't find anything.

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Sunday

Sunday was a sleepy day for me I really couldn't stay awake for very long. Now I am in fine form listening to my music and singing along too. I guess Mammy is lucky she had that nap earlier on today cause I think we will be singing all night long heheheehe.

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Saturday Purple Day and a trip to the Gardens

See I had purple on
Eoghan and Maura without their glasses on
The 3 of us
Can you believe we are still in the Bronx not in a rain forest?

The sun is bright and I don't have my shades
Happy but cold



See I had my purple on for Epilepsy Awareness Day so did Maura and Mammy. We went to the Botanical Gardens here in the Bronx to see the Orchid Show. Mammy took loads of pictures of the flowers but she only put a few up here. It was a nice day but cold. I even had a pair of Maura's purple leggings on under my jeans to keep me warm. We took the tram around the gardens and it was fun it was a first for me on the tram. I had a few small seizures and Mammy had to put me on oxygen. I was all bundled up and in the bag and I had the rain plastic over me so I wasn't cold but everyone else was and couldn't wait to get home. After we got home I was in fine form singing and talking up a storm. Its good to get out and about.

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Purple Day for Epilepsy Awareness

Come on everyone and show your support for Purple Day for Epilepsy Awareness. Put something purple on and show your support for the warriors who battle Epilepsy. I am wearing purple are you?

They got me tickets

I'm going , I'm going, I'm going to my first concert but its not until September but I have tickets. Can you believe it? I'm going to see Celtic Thunder at the Beacon Theater. They got me tickets right up front not only will I be able to hear the music I will be able to feel it too. The only thing is Nanny will not be sitting with us. We were not able to get 3 tickets together well the reason is cause of my wheelchair. I am sitting in a wheelchair spot the lad on the phone wanted to know if I could use a transfer seat then he would have been able to get all of us to sit together but I need my chair to sit up otherwise Mammy would end up holding me on her lap . Nanny doesn't mind but it would have been nice for all of us to sit together.

I love, love, love, love music. So you can just imagine how its going to sound and feel to be that close to the stage. Mammy said she will try to keep me healthy and happy for the big day.

Bonnie wanted to know if there was any way that I could meet them but unless they would sing to me I wouldn't know who they were cause I cannot see them I only know their voices when they sing. Mammy said that there would be enough womens throwing themselves at them that I wouldn't be able to get near them for any pictures. It doesn't matter I am going just for the music.

Can't wait roll on September

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Precious Child by Karen Taylor Good with Lyrics

Remembering Jordan

December 30 2005 to March 23 2009

Tuesday

Well today was ok I guess I know Mammy probably wouldn't say that. I was having a lot of little seizures some were very short and there was 2 that lasted a bit longer. It was funny when we went to get Maura from school I was fine one minute and then the next my alarm was beeping like mad. My oxygen was dropping but staying around 90% not a big deal. The next thing all I know is Mammy is shoving the tube up my nose and turning on the oxygen. Yup my oxygen had dropped down to 82%. The other 2 ladies were getting nervous and wanted to know if they should call for an ambulance. Mammy said "not at all its in the 80's with a bit of juice it will come back up if not we will go to plan B". You could only imagine what the ladies were thinking probably that plan "B" ment calling 911 well its not that's plan "C". But you know what is the best news I am not throwing up so I am back of full feeds. Mammy said she needs to fatten me up again I have lost about 4 lbs. Now I know you might not think that' s a lot but for me it is. May be we shouldn't have John fix my legs the other day now they are wide on my legs again. Not to worry I will be back in fine form again.

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Sunday

I'm one cool looking dude!
Ready to go to the parade
Snazzy dresser right!!!!!!
Ranger

Sunday was Maura's 8th birthday and as always we were in Pearl River. They have a big St. Patrick's Day Parade there every year and since Mike lives there we always go to the parade and we celebrate Maura's birthday. Nanny always brings the bacon and cabbage so they can have a big Irish dinner. Cannot tell you much about the bacon and cabbage dinner as I don't eat it remember I am a tubie but everyone enjoys it.

It was a really nice day but I wasn't having a great day. Yup seizures and from the pictures you can see I even had to go on oxygen for a while. Its been a few weeks since I have been on oxygen but guess what? I stopped throwing up.

Ranger is Dee's and Rick's dog. Dee is my auntie and they came for the party, parade and the dinner.

I have my cough back again so Mammy is watching me like a hawk so it doesn't go down in to my chestine. Nanny said I might have gotten coldeen at the parade. THe sun was out and it was nice but we have to remember it still is only March. You can see I was all decked out with my aran cardie and hat and I also had my Irish rugby shirt on. Maura and Nanny also got me an Irish flag to put on my chair to jazzy it up a bit for the day.

Not feeling great today (Monday) maybe its from all they fun yesterday.

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Happy Saint Patrick's Day

Happy Saint Patrick's Day. Sorry its a day late but Mammy didn't up date my blog. I wouldn't mind but she was up most of the night watching QVC they always have the special show of all the Irish stuff for St. Patrick's day.

I had a great day I had to go and see Dr.C he is my pulmo doc. He kinda agreed with Mammy that it is some kind of seizures that is making my oxygen go crazy. We got new orders for the oxygen and Mammy nearly had a kitten. I can be given up to 4 liters of oxygen when needed but if I need it for more than a half an hour she has to give me diastat and if that doesn't reset me then I have to go to the emergency. I have been good the past nearly 3 weeks I haven't had to use the oxygen but instead I am throwing up at least 1 time a day. BUt you know in all fairness I have a cold still coughing a bit, puke at least once a day but I am in great form. Mammy said she will take all of the above as long as I am happy. Well she is the one that has to clean up after me.

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I'm sick

I have a terrible cold and I'll tell you the cough its bad. Mammy keeps thumping me on my back telling me to "cough out that fur ball" she must think I am a cat. Then she gets the vaccume after me well its the sucko machine and it does the same thing sucks the gunk out of my nose and throat.

Now everyone is sneezing and hacking all around me. Bonnie is coughing, sneezing and blowing her nose like nobodies business. Yesterday between the 2 of us we filled a plastic shopping bag with tissues and baby wipes from our noses. Well I also threw up a bit well every time they gave me formula. So they got smart and gave me ginger ale instead.

Today I fell better and my nose isn't running all that much. My cough has gotten a bit softer and I am not setting off my alarm nor am I turning beet red when I cough.

Tomorrow is St. Patrick's Day so remember to wear green.

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I have a stuffy nose and a bit of a cough

Today I woke up with a stuffy nose and a bit of a cough. Its the first time this year I have had a cold. Hopefully it stays a cold and not become something worse.

On Friday I saw Dr. H and I have to have the pins removed from my legs and hip so Mammy has to call Aida to find out when it will be done. The Doc said May but we will have to work around Maura's First Communion.

Saturday was a pretty good day for me the weather was really nice. The one thing was Mammy was using the sucko machine on me because I was drooling up a storm. We haven't had to use it that much but now again its something we cannot leave home with out it.

Today I was gagging a bit and the usual run my heart rate starts to climb and then the next thing out everything comes.

Mammy also has to call Dr. C and see what the results of my tests were and if he thinks that the nissen would be something that would help me.

Mammy said as long as my chestine stays clear I will not have to go the peds but if it doesn't O guess I will have to be on more meds.

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Up to my usual tricks again

On Monday while I was asleep my heart started racing and unknown to me I threw up while asleep. This is very dangerous as I can swallow all that gunk back into my lungs. Mammy was there and rolled me on to my side and then she got the sucko machine and that was when I woke up. I tell you I was not a happy camper well neither would you be if some one came after you with a baby vacuum machine and stuck a tube into the back of your mouth to vacuum all the gunk out.

Later on I had the opposite thing happen my heart rate dropped down low. That happened a few more times so Mammy called my teacher to tell her not to come to see me. You know I slept a whole lot and then she was telling me I better go or I would be getting a tube put up my you know what if I didn't pee. Not to worry I let the water run free all over her couch again.

Tuesday was all right I only threw up once the same thing happened like on Monday but I was awake. I was fine later on so Ms. Tasha my teacher came and we had a good time.

Today was all right I am a bit off. I threw up and I am very tired. I am not having any seizures that you can see but you never know.

Maura was at home again today she is sick and Mammy keeps telling her to stay away from me as I don't' need to get what every she has. If she doesn't stop coughing Mammy is going to take her to the doctors so she can get something for the cough.

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Days and nights are a bit mixed up

When ever the weather changes I get my day's and night's mixed up. Yup I sleep all day and then want to party at night. Mammy is fun as she lets me listen to my music and every now and again she will tell me to keep it down and go night night and she will laugh. Hey, I like to sing along too but may be singing at the top of my lungs at 3-4 am is not the best.

It was raining all day on Sunday and of course Mammy went out and got soaked. She had to go to the chemist shop to get 1 of my meds. You know I haven't thrown up in a few days now even with the change in the weather.

I go on Friday to the ortho doc they have to make arrangments for me to get the pins out of my hip and legs. You know they will have to adjust my braces for my legs as I have gotten a bit chunky monkey there. We might get to see Walter of John and see what they can do if not we will just get an appointment and go another day.

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Lordy, lordy Mammy is.............................

Happy Birthday Mammy. I was going to tell every one that you are 40. Oooops I just did.

Happy Birthday Mammy

Love Finnian

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Happy Birthday to my big brother Eoghan

Eoghan and Mr.Magoo (me)
Eoghan helping me on the swing
Me and E
Me and E
Me and my brother
Fun in the snow with Eoghan

Eoghan its the first time in like 3 years that I have not been in the hospital on your birthday. I think turning 11 is a big deal and I hope you like the game we got you today in Target.

Happy Birthday E

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The test.

Well we got to the hospital and they wanted to know if I would eat egg or oatmeal? Hello I am a tubie and everything goes in there. Then they wanted to know if I would drink their formula Mammy said no all they could use was my formula or the diet ginger ale she had. They went off and came back and said they would use my formula. Then they wanted to know how much formula they could give me in a bolus. Mammy said only 60cc's as I have been throwing up and she didn't want that to happen. They took me in and gave me the bolus and then tied me down on the bed as I couldn't move while I was in the machine. I was in the machine for an hour then I had to wait for an hour then they scanned me again then they had me go out and come back in a hour to get scanned again. It didn't bother me as I had fallen asleep cause I was up all night. Then when it was almost all over the man said I had to come back tomorrow to get scanned again.

On the way home in the van I scared Bonnie hehehe it was funny. Mammy always has music on when she is driving so she had a CD in and then I heard my song and started to sing along. Bonnie didn't know what I was doing but Mammy did and all she kept telling me "sing for me Finny" and I did sing.

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We all know its a good day for Finnian when he sings. It was such a joy to hear him "sing" along in the van. These are the days that we live for the good ones. You know there is nothing better to hear than a child who is classified non verbal make sounds in time with music with his favourite voices. Paul Byrom and Reba McEntire were the voices that made him sing today.

Going to the hospital tomorrow

I am going to the hospital tomorrow for another test on my belly. They are going to do a gastric emptying scan. Its great I don't have to drink any nasty stuff they just hook my tube on and fill my belly up and then watch as the stuff goes out of my belly. Yes I will probably glow from the stuff and the x-rays but that will be alright.

Nanny rang and asked Mammy if she had my bag packed. Mammy is always running around like a chicken with out a head on making sure we have everything that I need at the last minute. Nanny is the best cause she will take Eoghan and Maurs to school and pick them up if we are not back when school is over.

Yesterday was a sleepy day for me cause it was raining but by the evening I was back to my cheerfull self and had a great time with my teacher. Mammy took Eoghan and Maurs to school yesterday and came back all wet. Bonnie said "I told you it was raining" Mammy laughed and said it was like being at home. I don't know why but Mammy loves to walk in the rain. It doesn't bother me as I am always in my buggy with the rain cover over me so I don't get wet but Mammy doesn't mind getting wet.

Will let you know how everything goes tomorrow.

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