December 9th 2013

My Dear Son Finnian, Its December 9th again. Oh how our world got turned upside down 9 years ago on this day. It was the day that I was told that something had happened to you. Your right ventricle in you brain was 4 times the size it should be and it looked like there was a blockage and it was possible that it was caused by a stroke. That was a shock a baby can have a stroke!!!! We went to so many doctors I had scans and even an MRI and it looked like you would need surgery right after you were born if you survived birth. You were only given a 40% chance at being born alive and if you were born alive you could have issues. They asked if we wanted a DNR written on your papers but I couldn't sign them I wanted you to have a chance and honestly it was going to be your choice. I was so happy to hear you cry and then shocked to hear you were being sent to the regular nursery and not the NICU where they said you would probably be sent. It was a whirl wind of doctors coming to check you out. It seemed you were forever being rushed back to the nursery to be checked out by doctors. You got discharged form the hospital the same day I did it was unbelievable but as the doctor said you were doing good and holding your own you could go home. You got sent home with a list of thing to watch out for. The neurosurgeon gave us a list of things to watch out for because of the large ventricle it was possible that you could still need surgery to put a shunt in. We have had some rough times over the years even had a few close calls. You have had surgeries you take a crap load of medications but you are still here. This year was huge for you, you made your First Communion. It was something I never thought would be possible but we got the go ahead from the Priest and yes we did have to go to Religious Instructions every Sunday morning it was worth the sacrifice of missing my morning to sleep in. We were so proud of you that day. December 9th 2013 is a day of memories but its also a day of new beginnings and new memories. This evening you are making your Confirmation. I knew you were going to make your Confirmation as we were back in Religious Instruction class but it was Father Stewart that decided on the date. You are a special circumstance because of your medical issues so he decided to Confirm you now and not wait until you would be older. Yes son I had to do your homework and wrote your report on the Saint's name I chose for you. I chose an Irish saints name for you. There have been more than 300 Saint Colman's in Irish history but the two that stood out were St.Colman MacDuagh and St.Colman of Lindisfarne. St. Colman MacDuagh is from near where your Nanny is from in Co/Galway Ireland. Like you he survived against the odds and lived a simple life. St.Colman of Lindinsfarne became the Abbot Bishop of Lindindfarne after the death of St.Finian and he born in Connacht and he founded the Abby and the Dioceses of Mayo that is where your Granddad was from. So you will be Confirmed Colman this evening. So lovey here is to new memories on December 9th. Mammy

Hotel CHONY

I went on my holidays for a few days. Yup I was in the hospital. I take a lot of medications for my seizures and after awhile they stop working so every now and again we take one away and try a new one. So I went in on Monday and I was so happy had my own room well I had to share with Mammy.

Then they came in and gave me a cool ponytail. Yup they stuck things on to my head so they could see what my brain was doing.

I also got an I.V. put in see

Tuesday we had a bit of fun up she gave me a mustache

Yup I kinda look like Mario from Mario Brothers. Tuesday night was rough I was having a lot of seizures. It happens when start to take away a medication especially when I have been taking it for 8 years. Not to worry they gave me meds in my I.V. to stop them but I was very loopy after

Wednesday I was still having some seizures but I was feeling better so we took a fun picture again this time I look like Luigi

Thursday I was feeling much better I guess the new medication was kicking in so I got to wear the hospital top Mammy made for me and of course we had to take another funny mustache picture

Friday they came in and said I could go home so bye bye ponytail

I think I need some clothes so I can go home

Saying bye bye CHONY of course with a funny mustache picture

Ahhh Home Sweet Home Teach Cataldo

Here is a collage Mammy made with my silly pictures

Sín é

She remembered

Boy oh boy what are we going to do to my Mammy? She has been very slack with her updates here. Well for Halloween I was an Army man Mammy made my costume she made all of it from my uniform to the piece that went over my wheelchair.

Here I am with Sheldon( Eoghan) and Dorothy (Maura) in my truck

We had a great time up and down Bainbridge Ave and 204th Street. So many people wanted to get a picture of me I was famous!!!! THe Botanical Gardens had a pumpkin thingy on and we went over to have a look. Mammy got some nice pictures of all the Pumpkins and of course nice ones of us too.

Here is the 3 of us with Daddy

We had a grand day out in the Gardens Got my Botox shots done and I now have no more wrinkles just joking!!!!!!!!! I get Botox in my left arm and leg it helps to loosen out the tightness from my CP. I was taking them shots like a trooper until she jabbed the one in my thumb. All is fine and I don't have to go back for another 6 months. We went on a bit of a road trip and of course Mammy got lost she always gets lost in New Jersey. But we found or way and you will never guess who I met? Can you believe it I met Jay Hartman. Now you might not know who he is but a while back Mammy signed me up with a group on Facebook called I Run 4 Michael and what they do is match a person like me up with someone who likes to run. Well I got matched up with Jay and at the time he was overseas but he is now back in the USA. He was competing in the Worlds Toughest Mudder and we went to see him. It was a big surprise for him. I got to meet a lot of really nice people that day and got my picture taken with a few of them. Me and Jay

Do you see what he has on his compression sleeves yup I Run 4 Finnian

Here are some more people I met that day

Since Jay has come back to the USA he has also ran a half Marathon and a Full Marathon and can you believe it he gave me his medals he got for running in them. He also gave me his flag that he ran with at the WTM Next week I am going in to the hospital for a few days my seizures are changing again so they are going to change one of my medications but because they are going to take me off it fast and put me on the new one fast they are going to do it in the hospital. Not to worry I think Mammy has my Facebook page up and running so she will be keeping you up to date there. Its Finnian's Rainbow on FB you will have to see we will have a funny picture up everyday so you better tune in to see what we will get up too. Sín é

October

Well its October and we have been busy. I have a lot of doctors appointments this month. Went to the ortho doc to get a look at my back as I have some scoliosis but good news it hasn't gotten any worse so come back in a year unless I need to see him about any other bone issues. Oh I am getting a brace for my left hand since I have out grown the other ones I have. Its cool its going to be neon green and what it will do is keep me from tucking my thumb in on the palm of my hand. So we get it in a week or so and we will see how its going to work out. Got a sad phone call from Ireland my Grand Uncle John Fahy passed away in Kinvara, Co. Galway on October 4th 2013. Nanny, Uncle Mike and Aunt Dee went over for the funeral. R.I.P. John Fahy

Went to the cardiologist and that appointment went really good. I don't have to go back to see her for 2 years. I have heart rate issues that is caused by my brain and they were keeping a close eye on things to make sure it wasn't causing damage to my heart. Thankfully that is not the case but I will just have to live with my brain sending out the signal to speed my heart up or to slow it down. It was funny Mammy went out to go and get Eoghan and Maurs from school as the appointment was taking a long time. When she went out the van wouldn't start the battery was dead. A nice man gave her a jump start and she made it in time to get them from school. Looks like we will have to get a new battery for my van. I am back at Religious Instructions on Sunday morning and we go to Mass after class. Ms. Doris is my teacher again and we have more students in my class this year. Halloween is coming up soon and Mammy is working on my costumes. Yup I get 2 costumes one for my wheelchair and one for me. I'm not going to tell you what I am going to be its a secret you will just have to wait and see the pictures on Halloween. I can tell you what Eoghan and Maurs are going to be hehehe. Eoghan is going to be dressed up like Seldon from the Big Bang Theory and Maurs is going to be dressed up as Dorothy from the Wizard of Oz. I have 2 doctors appointments this week coming up so we will see what happens at them. Sín é

Hmmmm glasses or new contact lenses????????????

Mammy posted a picture of me when I was a baby wearing my glasses and she was wondering if I should go back wearing glasses or if she should get me new contact lenses. You see the reason I wear contact lenses is I was born with cataracts and if they are not taken care of I would have lost the vision in my eyes. When I was 7 months old I had my first cataract surgery and they removed the cataract in my left eye. I was 8 months old when I had the right cataract removed and when I went back the doctor said that he wanted me to wear contact lenses. Mammy thought he was mad a baby with contact lenses yeah right. You see when big people have cataract surgery they take out the bad lens and put a new one in their eye. I couldn't have the new lens put in because my eyes were too small so the only choice for me was contact lenses or very thick glasses. Well he talked Mammy in to using contact lenses. Mind you they are not the normal run of the mill contact lens they are called SilSoft and they are used by adults and children who do not have a new lens implanted. Rigid gas permeable (GP) contact lenses (hard lenses) can also be used. They are the first kind I had but I was able to pop the right lens out and Mammy would have to look for it hehehe. So we tried the soft lenses they are expensive but fit so much better but Mammy doesn't like taking them out cause she has to hold me down keep my eye opened and pinch the lens to get it out. The hard lenses come with a baby plunger so all she has to do is stick it on the lens and presto its out. For awhile I was not seeing anything so both Mammy and Dr.K decided to give my eyes a rest and not put the lenses in but I have to wear sunglasses to protect my eyes when I go out. Yup that's why I wear sunglasses. I seem to be able to see lights and colours again so we are going back to get either new lenses or may be try glasses we will probably end up using hard lenses again as Mammy says they are lighter on the pocket if I lose one. The reason I don't always see is not because my eyes are bad but the part of the brain that tells my eyes what they see doesn't always work because of seizures and because of the stroke I had when I was in Mammy's tummy. My first pair of glasses

My first cataract surgery

My second cataract surgery

BUMBLEance Launch

What a great idea a child friendly ambulance "The BUMBLEance" well done Tony and the "Saoirse Foundation" for making this possible. Hopefully there will be one in every county in Ireland

Who Do You Run 4?

A few weeks ago Mammy signed up with a group on Facebook called I Run for Michael. The group is able body people who like to run get matched up with kids like me. So we get a buddy and inspire them to run for us. A few of my buddies have signed up and they also have been paired up with a running buddy. So on Tuesday August 27th I got my buddy. Jay Hartman is now my running buddy. Right now Jay is overseas serving our country in Afghanistan. So can you all give a big HELLO to Jay for both serving our contry and for being my running buddy.

So if you like to run and would like your miles to count for someone who cannot run for themselves pop over and join I Run for Michael on facebook or you can go to the website www.whoirun4.com and just follow the instructions and get matched up with a special person. Also if you are interested in getting your special little one matched up with a runner just go to the pages and sign them up. WHO DO YOU RUN 4? JAY HARTMAN RUNS 4 ME Sín é

Well she is finally catching up on posts

Mammy is finally up dating my blog and she finally posted some from June and July that were sitting in the box. Well Nanny and Eoghan went to Ireland for a short visit. They were only gone for 2 weeks. here is a picture of them leaving for the airport

The BIG SECRET was we went on holidays. Yup me and Mammy haven't been on holidays since we were in Myrtle Beach 4 years ago. This year we went to Hilton Head SC. It was a long drive but Mammy and Daddy took turns driving. When we left the Bronx it was night time so we were able to sleep on the drive down. The drive back was VERY long as it was day time and we hit some nasty rain and there was a lot of accidents and a lot of traffic. So here are picturs of my holidays

Pool time with Daddy

Me Eoghan and Maurs

Not happy they took me out of the pool

Working on my tan

Family pool time

Hello big spider

On the beach at night time to see the fireworks

Rough surf after the rain

Me and Mammy

Having toast with Nanny

Me and Nanny

pool time again

Sín é

July

Well you have to see the lovely outfit Mammy made for me for the 4th of July here is a picture of me wearing the shorts

Here is the whole outfit

Here I am on the 4th of July

Summer school is on and Maurs is going to swim lessons so 2 days a week I get to have school outside. Yup my teacher meets us at the pool so while Maurs is having fun swimming I have to do school. Thats not fair but I should be going to swimming lessons too. Mammy said not to worry that she will take me to the pool and will teach me how to swim. I have a BIG SECRET and I'm not telling you will all just have to wait and see what it is Sín é