Happy 11th Birthday Finnian!!!!!!!!!

Its hard to believe that you are 11 years old today lovey. I still remember like it was yesterday. Honestly we weren't given much hope for you to be even born alive. When you were born you cried they said you wouldn't. Oh I can still hear the little sounds you made. Gasúr you were born fighting and you are still fighting.
I have no idea how many times were have been told you won't but yet you still throw them for a loop and show them you can. Yes you have issues, big issues but when you smile we don't see them and they don't define who you are. I won't paint it like its easy because its not but honestly you are worth it. We have had some rocky and scary times with you lovey but its made us who we are. Different, compassionate, humbled and you have made us see outside the box and not to look at everything as black and white.
Yes you are a medically fragile child and we know that your life could end at any time but we are not sitting back and waiting for that to happen. You are not someone to be left out just because you are different. I have been asked why I do the things with you that I do and all I can say is that trapped inside is a little boy who needs to experience what every little boy likes to do.
You are not the typical little brother and yes Eoghan and Maurs love you. Even though you can cause major upheaval in their lives they are better kids because of you. I think you have made me a better parent to them too. Even though its been said to me that you rule the roost and we do things around you and how your day is going, but that is not true. At one time yes that was true but then when your brother pointed out how we weren't doing those normal things I realized you weren't getting to experience normal things too. So everyone was losing out but not anymore.
I am sorry you had to spend some of your birthday in the emergency room but without a fully functioning g-tube you wouldn't be a happy boy. So lovey HAPPY 11th BIRTHDAY!!!!!!!!!!!!!

Not my happy self

For the past week or so my seizures have not behaving. They happen when I wake up and are usually less than a minute and they can well usually happen when I am going to sleep but are less than a minute. Well this week I have been having more of them. Thursday was a really bad day a really, really bad day. Mammy even had packed my "Go Bag". She had even called and talked to the Nurse Practitioner to let her know that I was having a bad day. I had already gotten 2 rescue meds and they were only slowing down my seizures not stopping them. So they came up with a plan I got my afternoon meds about and hour before I usually get them. If I wasn't any better I should go down to the ER and she would get them to admit me upstairs. Well I finally went to sleep and stayed asleep for about 5 hours. When I woke up I had a little seizure and it stopped on its own.
Friday I was very sleepy and Mammy was happy that my teacher called to say he wouldn't be able to make it so Mammy let me sleep. So I slept the day away but when I woke up I had seizures again but I got my rescue med and the rest of the day wasn't so bad.
I got washed and dressed today and stayed asleep and as soon as Mammy put me in the van and put my music on I woke up and started singing. Guess what?? NO SEIZURES!!!!!!!!!!!!! Today has been a good day a really really good day. I only had 1 seizure and that was when I woke up from my nap.

I have a few appointments coming up my PET Scan has been scheduled, my Botox shots have been scheduled but we might have to change that appointment. Still waiting to see when I will be going in on my holidays and also waiting for my MRI appointment. Then once all that is done then they will have a meeting with all the big wigs and see if they can do surgery to help stop some of my seizures.

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Happy New Year 2016!!!!

Happy New Year everyone!!!! Well we will see if Mammy will keep up on my page this year,
Highlights of last year
Some really, really, really nice people got me my tricycle. Thank you very much. I love going out riding my bike.

Look no hands!!!


This summer my Daddy was diagnosed with Non Hodgkins Lymphoma. He had to have his spleen and part of his pancrease removed because there were tumors. Then he came home from the hospital and then he started his chemo treatments. Then he had to get a special tube put in his arm so they could give him his chemo. Mammy had to take care of that and once a week Karl would come in and change the dressing.

So Mammy had a busy summer between my appointments and Daddy's appointments.Then Maurs fell off her scooter and broke her arm so Mammy had to go to the emergency room with her. Maurs was in the Youth Police Academy with the broken arm so she had to drop her off and pick her up. Eoghan and Nanny didn't get to go to Ireland with everything that was going on.

I had one of my seizure medications changed and it seems to be working. I had a hospital stay the end of September and they saw the usual stuff with my seizures. Shortly after I started doing something Mammy was wondering about if it was seizures or not so I got to go on my holidays again in December. Yup Mammy was right. It is seizures but the new medication seems to be working on some of my seizures. Now I have one spot that is shooting seizures all the time so they are going to look in to see if maybe they can do surgery. Nobody panic there is a lot they have to check out before we would meet with the surgery people and even with all the tests they still might say "No".
They are also doing a gene study and we got asked if we would like to be part of it. Of course Mammy said yes. This test is really expensive and they might be able to find out what is wrong with me. Now its going to take months before we will hear anything. Any tests I have had in the past have all been normal but this test might just might give us answers but then again might leave us with bigger questions. Time will let us know if they find anything.

I got to see Santa and oh was I so excited even Eoghan and Maurs got their picture taken with me and Santa.

I might have to have surgery on my hip its a bit dodgy but so far so good it hasn't given me a lot of problems. I am also getting real food no more formula and since Mammy started me on food I have grown and put some weight on. I get so excited when I hear the blender going that is the bell to tell me its food time. Mammy uses a syringe and puts the food in to my belly with the feeding tube.

So let's see what 2016 has in store for me this year!!!!!
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