Rare Disease Day

Please Raise Your Hand and help

The Weekend

On Saturday we took Eoghan and Maura to Irish classes and Mammy decided to go walking with me while they were in class. She was wrecked by the time we got back. She forgot that she was pushing and pulling almost 80lbs between me and my chair. She also hasn't really been walking much like she used to so I guess she is out of shape. It was really a great day for me I didn't throw up and was keeping everything down I even had fun sitting in my high chair and even had a nap in it.

Sunday morning I was still in fine form chillin on the sofa and singing along with my music when all of a sudden milk came flying out of my mouth and nose. Mammy said I looked like a clown with the milk all over my face. As soon as I stopped throwing up I was back singing again. Eoghan and Maura keep turning off my music I guess they don't like my taste in music. Its all right they will be back at school tomorrow so Mammy will be playing my music for me all day and I will have fun singing.

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Friday

Well Friday wasn't a great day for me. The weather was yucky it rained nearly all day. When it rains I usually have seizures or else my head is like its on fire and all I do is sleep. I guess today I was having a lot of little seizures but because I was sleeping Mammy couldn't see them. All I know I was told I was causing trouble as I wasn't peeing. They kept giving me ginger ale well I was throwing up yesterday and a bit last night. I was being told that I better pee soon or else there would be a tube going up my you know what to get the pee out. They didn't have to put the tube in I went all on my own. My nappy couldn't hold it all so I wet my pads on my man chair and a little bit got on my chair too. Then came the fun part they had to figure out how much I had put out so they were weighing everything. I feel great now that my bladder doesn't hurt any more. Hopefully tomorrow will be better.

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Updates

Well Mammy took me to the man in the white jacket and his name is Bob. He said that I might need the surgery on my belly but he wanted to have some tests done first. So I had the first ones done and I will be having the other one done next week. I don't know if Mammy is having second thoughts about me having this surgery done or not. All I know is she wants to see what the results of the tests will be before she makes her final decision. I know Mammy only wants what's best for me and if the tests say I need to have the surgery she will get it done for me. Now if they say it won't harm me if I has it done she will put it off until I need to have it done. The one thing that Dr. Bob did say if my throwing up is not caused by reflux having the surgery will not stop me from throwing up.

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A kinda big appointment later today

Well later today we go to see the surgeon. Mammy is going to talk to him about the surgery for my belly. I know I will have to be in the hospital for a few days but depending on what kind of surgery they do and if they have to give me a new button will depend on how long I will be in the hospital. It doesn't make a difference I will have more scars to add to my growing number. I know Mammy doesn't really want me to be put to sleep but may be making me better is worth the risk.Will up date later when we know more.

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Ooops I did it again !!!!!!!!!!!!!!!!!!!!!

I threw up all over Mammy's couch again heehee. This time I got the back of the couch so not only does she have to wash the seat covers she has to wash the the other cover too. At the rate I am throwing up she should just buy shares in the washing machine company and the laundry detergent company. By the looks of things she will have to buy a new rug for the floor too. I feel fine don't know why I throw up but Mammy says its from my seizures. Mammy was a big sleepy head today and I got to hang out with Daddy and watch the Rangers (they lost) and then we were watching the car racing.

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No I'm not!!!!!!!!!!!!!!!!!!!!!!!!

I said yesterday I was back to myself but today I'm not. So we didn't go to the gardens today bummer. Well Bonnie said that Mammy should take Eoghan and Maurs but she didn't want to leave me on my own with Bonnie cause my ticker was up to its old tricks. Twice it went down low and they were rubbing my chest to bring it back up. Mammy doesn't want to leave me when I am like that. I was also sucking back oxygen for a while. So it looks like when I have a few good days then I have a crappy one. I didn't wake up until nearly 2 pm and then I was back asleep for a nap again by 3pm. I guess I just needed a good days sleep to catch up on the 2 good days I had.

I am a bit more myself now again so no matter how I feel tomorrow we will be off to take Eoghan and Maurs to Scoil Gailge and maybe if its not too windy we might take a detour to the Gardens well if I behave you would never know.

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Back to my normal self

I guess my body is adjusting to the weather change all my numbers are back normal. Tomorrow is supposed to be very nice so Mammy is going to take us to the Botanical Gardens. Well Eoghan and Maura are off from school tomorrow and Mammy will want us to be out of the house to keep us quiet. may be she will bring her camera and take some pictures. Mammy loves the gardens all she says its like being at home walking on the country roads. I get to ride in style in my wheels but everyone else is always tired after a day in the gardens. Maybe she might take us on the tram that would be nice I have never been on that.

Heres to hoping that tomorrow is a nice day like today.

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Family Network TV

The Family Network TV is up and running and I would like if you could stop by and check it out here is the link www.familynetworktv.com

Another site to check out is www.exceptionalfamilytv.com

Just incase the links here don't work if you look to the right of the page you will find the links under Special Needs TV

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This blog

You know my Mammy writes this blog for me. I don't have the ability mentally or physically to do something as grand as this. She only wants you to see it through a child eyes what we go through. My big brother Eoghan and big sister Maura help her to see things through my eyes. She knows she does things that need to be done to help me but it doesn't mean she like doing them. She knows from my expressions on my face she is really in tune with me. She can hear me cry and let you know what kind of a cry it is. I know there have been times when she has been at her wits end because she cannot figure out whats wrong with me and I cannot tell her. She has been up days and nights with me so many times you would wonder when she sleeps or how she can even function. I know I take up alot of her time and I get more attention and Yes she does feel guilty that she doesn't give Eoghan or Maura the attention they need too. Sure we would all love if we had Mammy's full attention and no one else existed but that doesn't happen.

Well I must go as Mammy has to make adjustments to my chair.

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Monday Monday

This weather is really messing with me. Today it was in the 50's and tomorrow its going to be back in the 30's. I wasn't feeling too hot early today my tummy kept bubbling up and making me almost throw up. I saved that till Mammy thought she had all the laundry done hehehehe.

She had me listening to music today to see if its the voices or the songs I really like. Some are the songs but its mostly the voices. Today she discovered I liked Queen so I guess she will be playing more of that for me. She was playing a weird selection of music today Rod Stewart, Celtic Thunder, Sarah Brightman (my girl) Alan Jackson and The House Martins. I guess she wasn't really listening to what she was playing she was too busy doing all the laundry.

Teacher came and I tried to pretend I was asleep but she made me laugh and the game was up. I cannot pull that one on her tomorrow.

My Dystonia was acting up a good bit today and honestly it made me tired. Can you imaging your legs going crazy and nothing you do will stop them from moving the same with my right arm and I kept looking over my right shoulder too. At least I wasn't blinking like crazy that has stopped since I started on the meds for the Dystonia.

Just threw up again more laundry for Mammy to do.

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Sunday

Well after the episode this morning they won't leave me alone at all. Some one is always sitting beside me. Can anyone shut off the beep, beebeep, beebeep? Cause when eve it goes off they shove the thingy in my nose and Mammy keeps telling me she will glue it in there if I don't leave it alone. I know she won't but she keeps telling me to leave it alone or she will get the mask out and then I won't be able to suck my thumb.

I have been doing pretty good other than my oxygen dipping up and down. Got all my meds all my feeds in my new button that Mammy put in today. Then I was asleep and the next thing I am coughing and then my feed was coming out my nose and mouth. Yup I threw up and what a mess the pillow, the pad on the couch, my blanket and of course Mammies couch. She got me all cleaned up and smelling nice again so I think I will just go back to sleep again.

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I scared Mammy this morning

I have been sucking back oxygen the last few days again and the thingy still keeps beeping. Early this morning Mammy was up watching me and of course all you can hear is whoosh, whoosh, from the oxygen machine. I had a seizure and was drooling all over my pillow so she changed the cover and watched me. Then my legs start twitching so she pulls out her watch to time it. It stopped on its own so she didn't have to give me and up the butt. A little while later the thingy starts beeping again and the next thing I am on the floor and she is squishing me on my chest. All I know is the thingy is beeping up a storm and then she puts the other one on my hand and she is telling me to breath. My heart rate had dropped down to 17 and my oxygen started to fall down to the 60's and was still on the way down until she started squishing my chest.

Mammy said she needed a good stiff drink after that scare I gave her. So she went in to the kitchen and put the kettle on for coffee and she put Sarah Brightman on for me to listen to.

Mammy knows that I am at a high risk for SUDEP which stands for Sudden Unexplained Death in Epilepsy and that is why she stays up all night watching me sleep isn't she a great Mammy? I think so.

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I don't feel good

I don't feel good again. Yesterday I had a few seizures and they had to put me back on oxygen. The thingy kept beeping to let them know I wasn't getting enough oxygen. I hate when they put the cannula on me but its a lot better than the mask because at least I can still suck my thumb.

I am still on oxygen today but at least there are times that it can be turned off. Mammy is blaming the snow flurries that we have for my need for oxygen. She says it always happens. May be she is right I don't know.

My leg is doing good still a little sore but its good. The band aid can come off now but the other little tapes have to fall off on their own. It is getting itchy so it must be doing good.

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Tube feeding awareness week

I have a tubie. Its great I can eat and talk at the same time and not get in trouble. Can you do that?I can eat in places that says NO Eating, No Drinking. Can you do that? I can sleep and eat. Can you do that? NO? only us with tubies can do that.

I'm home

Mammy took me to the hospital this morning early in a taxi. She didn't want to take the van as she didn't know if I would get to come home after the surgery or if they would keep me overnight. Well I did so good they sent me home. I now have a new scar on my leg. I have some stitches but they will go away on their own. Mammy said not to worry about the scar as chicks dig scars but at the rate I am having surgeries I will look like a patch work quit.

Mammy said that we will have to wait for all the results to come in and it could take up to 8 weeks but I am not to worry that is her job.We might get some answers to whats wrong with me and then again I just might remain a mystery.

Mammy said she needs to get in shape as I am getting bigger and heavier. Since we got out of the hospital early we came home on the subway. Usually Mammy will take me on the bus but we didn't have my wheelchair we just had the SN's Maclaren buggy which is easier to put in the booth of the taxi. She carried me up and down the stairs in the subway stations. Now I do weigh almost 40lbs and my buggy is like 17lbs and then she had my backpack with soup to nuts in it just in case they kept me overnight a small O2 canister and her handbag. She was funny when we got to our stop at 205th street and the escalator wasn't working. All she kept saying was " I;m getting a fine work out today" "Oh Finnian tá tú ró trom (oh Finnian you are very heavy) and Mammy needs to get a new pair of lungs". Not to worry we got home fine and I am relaxing in my "man chair".

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GI appointment

Today Mammy and Bonnie took me and Eoghan to see the GI doctor for a follow up appointment. Eoghan has a problem with his belly too and we go to the same doctor. Well Mammy and Dr.K had a big talk about my problem and so I have to go to the surgeon. Mammy has already gotten an appointment to see Dr.C the end of this month. I know I am going to have the nissen on my tummy. Dr.K doesn't think that the j/g-tube would be a good option for me and he doesn't think I need the j-tube right now.

I think Mammy is ready for all this snow and ice to be gone. She went boom today when she went around the side of the van. yup she fell on the dirty mound of snow. Her hand is all scratched and she said a few choice words I cannot repeat them here. She was giving off because she dirtied her trousers when she fell.

Mammy will update again after my biopsy and let you all know how I am doing.

Lazy Sunday

Well Mammy isn't as cranky today Daddy hung out with me last night so I guess she got enough sleep last night. It has been a lazy day and guess what? I haven't thrown up at all today. Daddy is very happy about that because he isn't a fan of cleaning up my puke.

Tomorrow I go to the GI doctor and we will say what he has to say about the nissen fundo surgery or if he will thing about the j-tube. It doesn't make a difference I have to go and see the surgeon and he will let Mammy know when and what they are going to do. THen on Wednesday I go for my muscle/skin biopsy don't know yet if they are going to let me come home the same day or not. They will probably keep me in over night as they like to say "just in case".

Right now I am hanging out with Daddy on the couch watching the Super Bowl. I crack up laughing at Daddy he is so into the game.

Supplies

Every month Michelle calls Mammy to see what supplies I need for the month. So Mam told her that I would need a bigger size in my nappies as the ones I have are making red marks on my legs. Well you know I did put weight on so she got a new script for the next size up. Well Anthony came and dropped all of my supplies off. So Mammy and Bonnie my nurse were putting everything away when they got to the big boxes of nappies Mammy said to check to make sure they were the next size up. So Bonnie looked and when she opened the box she said "yup they are different". I got peach nappies yup they are a peachy orange colour. Before Bonnie could say anything about the colour Mammy said" who is going to see them sure he will be wearing trousers over them?" Bonnie is not impressed with peach nappies for me. I guess she had the same look on her face that Nanny did when she saw me wearing the pink shirt ( horror). Like as Mammy says "who cares what colour my arse rags are all I am going to do is pee and poop in them anyway"

Pictures from Jan 27th 2011 my Birthday

I want to have a go
Sitting pretty waiting
My sister Maura making a snowman
Eoghan getting ready to go down the hill
At the bottom now has to climb back up the hill
Come on Eoghan
Hi everyone

For Finnian's birthday he was lucky his brother and sister didn't have school because of the snow. I took them out sledding and boy did I get a work out between pushing and pulling Finnian in his jogger that he is a bit too big for over the piles of snow and over sidewalks that were not cleared. We had a small party well more like a family get together on Sunday where he got some prezzies. Our Finnian is on the Keto diet for his seizures and is tube fed so he doesn't get to eat cake or all the nice things that you get at a party. The one thing he does like is opening prezzies.

Happy Birthday to my Special Little Man keep fighting the fight and I will always be in your corner.