December 9th 2018

Hi my lovey,
It's 14 years since we were told you were going to be different and have challenges before you were born but it never changed how I felt about you. You are mine, you are loved.
You have been a fighter since before you were born and we have weathered many a storm with you. We won't stop fighting for you as long as you fight. I know there will come a day when you don't want to fight any more and it will break my heart but we will have memories of the good days, memories of the not so good days and memories of even the bad days but we will have memories.
The changes we have seen in you this past year are unreal. Your personality has really bloomed and yeah I know you still don't talk but your facial expressions say so much. You have gained weight and have grown so much that you need all new shirts, pants and shoes. Oh shucks soon we won't be able to fib and get you in for child's rate as your face is changing from that little boy look in to the young man look. You are physically getting stronger. I guess all that floor time is really helping you tone up all your muscles and making you stronger. We discovered you love to go shopping and you don't really care where we go even if its just food shopping.
We went on holidays this year to Hilton Head and you had so much fun in the swimming pool.

We discovered that you don't really fit in the kiddy bicycle cart anymore so you didn't get to enjoy going bike riding in Hilton Head this year. I think we will have to invest in The Wike Large Special Needs Bicycle Trailer for you so you can enjoy bike riding with us on holiday.
You started 8th grade this year and you have a new teacher for home instruction. We had fun at Halloween and you were a fireman and we made your wheelchair in to a fire truck.You were Junior Engine 79 the Bronx.

You were a big hit and even the Firemen from Engine 79 came to visit you. The reason we chose Engine 79 is because its our local engine company. You even had lights and sirens on your truck. Here you are with your sister coming back from going trick or treat on the Avenue

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So tomorrow is picture with Santa Claus we even talked Maurs and Eoghan into going with you for the picture.
We haven't made any plans yet for next year for our holidays but it doesn't make a difference as we will always have an adventure no matter where we go.

Sín é, mo ghrá
Love Mammy

Its hard to believe

Today my lovey you are 13 years old. You really proved them wrong. Happy 13th Birthday Finnian

Look who is a teenager!!!! Yup its me

Today is a big birthday for me. Today I am 13 years old. Happy 13th Birthday to me!!!!!!!

Well now I have a diagnoses

For years the doctors have been saying everything wrong with me is just all part of a jigsaw puzzle and today we got the final piece of that puzzle. Back in December I had genetic testing done as part of research to see if they could figure out why I have a long list of things wrong with me. In April Mammy got a phone call saying they had found something but they would need a new sample to send to another lab to confirm what they found. Well the results are back and what I have is very rare. I have protein disorder on Chromosome 13 called COL4A1. What makes mine rare is the variant G755R I have on this gene as mine in not something I got from my Mammy or Daddy its just something that happened to me. They call it a De Novo. Now there are De Novo findings on COL4A1 but not on the variant I have.
So this COL4A1 (G755R) is what caused the stroke, the seizures, the cataracts, the reason I am small and the list goes on and on. Now there is no cure for what I have I just have to follow up with all the special doctors I now see so they can keep an eye on things.

Wait until I tell you where I am going. I am going to Lourdes,France on a pilgrimage trip with other special kids. So give a big shout out to The Knights of Columbus Our Lady of Lourdes Council in Washingtonville, New York for sponsoring this trip for us. You can also help by giving a tax deductable donation to OUR LADY OF LOURDES BENEVOLENT ASSOCIATION INC.
You can mail it to Knights of Columbus
Attention Lourdes Program
18 Hallock Dr,
Washingtonville, NY 10992

This year they are bringing 7 children and a parent/guardian for each child on this wonderful pilgrimage trip. So we are flying out on Sunday June 26th and returning on July 5th. Grandma is coming with us but she had to pay for her trip. It will be her first time in Europe. So Mammy is starting to put my list of supplies together and pack them in our suitcases for our trip.

Daddy got good news from his last scan he had he is still in remission from his stage 3 Diffused Large B Cell Lymophoma.

School is almost over and soon Eoghan and Maurs will be on vacation. I will be off for a few weeks and then I start back with my summer program. I will let you all know we are going to Ireland or as Mammy says we are going home for a holiday the end of July. I have only been there once and that was a long time ago almost 8 years ago. Only Eoghan has gone back to Ireland with Nanny for a holiday since we were there last.
Well Sin e

Guess what I did?????????

You all know I have brain damage from a stroke that I had before I was born.Then I had Infantile Spasms which is a seizure disorder that can cause more damage if the seizures are not controlled. Some babies and children are lucky and treatment works on them but I was almost 3 years old when we finally got these seizures to stop so it caused more damage to my brain. So I have to work so much harder to do some of the things we take for granted that all babies/kids can do. There is a part of your brain that controls movement and another part that controls balance well those parts don't work all that great for me. That is why I cannot sit up on my own. I have worked really hard that sometimes I can sit on my own but if I lean a little too much I will just fall over. The same with getting my arms and legs to do what I want them. Sometimes I can get them to do what I want and then there are other times I wish they would stop moving but I cannot control all my movements.
I was probably 4 1/2 years old when I first stayed sitting up on my own. It was at the beach and I was sitting in the sand by the waters edge. The tide was rolling in and for some reason I was able to stay sitting up on my own. They think the position i was sitting in, the sensory input I was getting from the sand and the water made some triggers for me to stay sitting. Hey what ever did it I sat up on my own. Most babies have sitting mastered by 6-7 months it only took me 4 1/2 years to do it.
Standing has been hard because for the longest time I didn't know what my legs were for. When I was little Mammy used to put me in a contraption and I hated it. I would cry and scream but she knew I wasn't hurt or in pain I just bloody didn't want to do it. All I wanted was to lie down and suck my thumb. Why should I stand I wasn't comfortable and I didn't like it. My Mammy made me do it she often said it broke her heart to hear me cry but she was only doing it for my own good. She would put my music on and she would tell me that once I stopped screaming I would be able to hear my Andrea Bocelli. You know she was right.
Then my seizures kicked up again and for a while I wasn't able to use my stander or there were times I wasn't even able to wear my leg braces. The ortho thought Mammy was crazy when she asked about braces and pushed for my surgeries on my legs. Mammy doesn't believe in putting a patch on things she believes on fixing the problem. I have had 5 surgeries so far on my legs and I will be having another one some time this year.
I have been able to hold a standing position holding on or leaning against someone or some thing for awhile.Mammy said it was a goal she set for me once they said that I would probably be very tall when I grow up. All she could thing was how in the hell would she be able to move me from the van to my wheelchair or even from my bed to my wheelchair. So getting me to hold a standing position was the goal. I can do it and believe me I do hold on tight so I don't go down with a bang. .
Because my legs don't always get the signal from my brain to move walking or even taking steps has been a long work in progress. They won't approve a gait trainer that is just a fancy walker with all the bells and whistles on it because I don't take steps. I am getting bigger so its not like you are taking your 10-11 month old baby by the arms and telling them to step. I am 4 foot tall and weight 42lbs so I am a bit taller and heavier than a little baby so its not as easy on the person who is helping me. There is a device that a Mom invented but I am too big for the largest size that they make. Its called The Upsee you can check it out here http://www.fireflyfriends.com/upsee So if your child is too big for the traditional baby walker this might work for you.
Last year some amazing people bought me a special needs tricycle. The goal with using the tricycle was to build up my legs and believe it or not but I can make the trike move all by myself. So with my legs being stronger and being able to hold me up the next goal was to start me stepping. That is usually a 2 man job as someone has to hold me upright and someone else has to make me move my legs. All the time spent on my trike is paying off as I just took my first steps last night with Mammy. I really surprised her when I did it I think I surprised myself too as I could not stop laughing. Then my tooth fell out and I swallowed it. Guess the tooth fairy won't be paying me a visit
My Mammy has put a lot of time,effort, sweat and tears in to me. People have told her she is crazy and she shouldn't be pushing me some have even said she is a bully for making me do these things. You know if she let me do what I wanted to do I wouldn't be able to do half the things I can do. Oh yes I didn't like to do them and I was very vocal about it but you know she was right all the hard work does pay off in the end. My Mammy didn't give up on me and she made me do things like a Spartan race and I have a lot of people to thank for getting me to the finish line. Oh I can also swim and I learned all on my own with Mammys help

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.

Sín é