Purple Day March 26th 2013 Supporting Epilepsy Around the World

Purple Day is something near and dear to our hearts in our house. My 8 year old has Epilepsy and has had it basically all his life. Its something we live with but we try and not let Epilepsy control our lives. There are many different types of seizures and different types of Epilepsy syndromes. I think at some time or another we have nearly seen all the different types of seizures. My son was diagnosed at 8 mths old with Generalized Epilepsy when he had 3 Grand Mal seizures but with what we know now about seizures he probably had been having them since before he was born. At 11 months old he was diagnosed with Infantile Spasms a horrible form of epilepsy. We saw first hand what this type of Epilepsy can do to a child. Finnian has brain damage from a stroke but was developing slower than a normal baby but when Infantile Spasms hit him he was like a new born baby all over again. Sabril was a drug that helped calm his Infantile Spasms and at the time it was not FDA approved so we had to get it shipped in from Canada. Thankfully now it is available in the USA through SHARE. So now we had decent control over his Infantile Spasms but then his other seizures were all over the place so we started adding and changing his medications to try and get control of his seizures. By the time Finnian was 19 mths old he was showing another type of Epilepsy Syndrome Lennox-Gastaut Syndrome. Its a type of Epilepsy that is hard to treat as the seizures become resistant to the medications. For Finnian to give him his daily normal life he takes a lot of medications some of them he has to take 3 times a day, he is also on a special high fat diet and we cannot even go around the corner with out his rescue meds because you never know when you will need them. Even with all of that he still has seizures. Finnian is at high risk for SUDEP which is Sudden Unexplained Death in Epilepsy. Its not something that is normally discussed but it should be explained if and when you, your child, grandchild, spouse,or whom ever is diagnosed with Epilepsy. Finnian's brainwaves Getting brain waves read He has his head wrapped up This is one round of medications that Finnian has to take he takes meds 3 times daily Finnian's daily meds he takes This was when we couldn't stop his seizures and he had to be put into a medically induced coma and put on a ventilator to stop his seizures Here he is with his big brother and sister

How do I do it?

Many think I am "Super Mom" but honestly I'm not. In my vision of a "Super Mom" the house is spotless, everything is where its supposed to be, everything runs in order and on schedule. Honestly that's not me. I have to tell myself that an appointment is the least a half an hour earlier than it really is. Laundry get done when the basket is full. My house is well lived in and it certainly not spotless. Yes I am up all hours of the day and night and I have been doing this for a good many years I now cannot sleep more than 2-4 hours at a time so I guess that makes me the Queen of power naps. The computer is a both a blessing and a curse. Its a blessing during the night as I can chat to people. I guess in a way its a bit of a sanity saver. Its a curse in another way cause its always on and you know you just can't pass it by with out give a little wiggle to the mouse so the screen will come back on and something will grab you attention and of course you will plank yourself back down in front of the screen and what you were going to do gets put on the back burner. I guess I am the Queen of starting many project and really only finishing them when I need them. The shamrock shirts are a prime example I am finally getting around to make them the reason is the kids need them for school tomorrow and I don't want to be making them like I did Maurs Valentine's Day shirt right before she went to school. I know people wonder why I am so up beat and I always seem to have a smile plastered on my face. Some have asked if its my mask that I always seem so happy. Its not a mask its just me yup its just the way I am. Yes I do get pissed off and mad but that just being human. For awhile I blamed myself for the issues that Finnian has but blaming myself won't make him normal I can't turn back the clock and undo what has happened to him as they cannot really tell us what exactly is wrong with him. He has a whole lot of diagnoses but no name for what he has. I do know that life is precious and we should never take things for granted. Hey come and live in my house and we can go from being fine and dandy one minute and the next be saying a few prayers that the meds I just gave Finny will stop the seizure or if not is he stable enough to bring him to his hospital or do we just call 911. You know no parent wants to hear the doc come and discuss DNR (Do Not Resuscitate) papers we have been approached twice about them but I haven't had to make that choice yet. I know there is a possibility where we have to make that choice and that is not going to be easy one but I have to think about what is right for Finny. So how do I do it I don't really know. I just take it one day at a time and live for the good days and pray we get through the bad ones.So what if I didn't do the load of laundry or wash the floors or put every thing back where it belongs its not the end of the world and it can always be done tomorrow. So live for today and worry about tomorrow when tomorrow comes

March 2013 so far

We are having such crazy weather one day its a beautiful spring day and the next its snowing.This is what we woke up to on Friday morning Saturday what a change nearly all the snow gone and the temps in the mid 40's so off to the beach we went Did you see in one of the pictures he had his foot on the front wheel? Couldn't figure out why it was hard to push him but when I went to take his picture there he has his foot on the wheel and the little bugger laughed had to watch him after that cause he kept doing it. It was really nice at Orchard today and Finny even got to go on the swing. Have a short video of him will see if I can upload it here later. The tide had only gone out so it was a bit boggy in parts. I'll tell you my poor legs got a workout today and the trainers got full of wet sand.I don't often post pictures of myself but its not a bad one

Happy Birthday in Heaven Dad

Happy Birthday Dad love you and miss you. Dancing with my Daddy Dad and his number 1 Lady The 5 of us 2009 Hanging out with some of the Grand kids Favourite hobby in the summer besides cutting turf

Slacking I know

It always seems to be a feast or a famine with up dates here. Well you are getting the feast right now so you will just have to put up with me I guess. Everyone had that wonderful bug that was going around all except me I don't know how it skipped me. Poor Eoghan got it twice and the Finn-man I think he got it the worst and we even ended up taking him to the ER during his bout with it. You know how I will avoid the ER at all cost with him but the little bugger scared the crap out of me. He kept getting nose bleeds and when I saw the blood coming out of his nose and mouth I popped him in the buggy and landed him up to the ER. When we got to the ER the nurse got a bit flustered as Finny's heart rate was in the 160's so we got taken back really fast. They were wondering about why it was so high but when I told them that wasn't high they just looked at me like I had 2 heads. Yes I know for a normal 8 year old with no issues it is a high heart rate but come on for Finny its not. Once they listened to Finny's history they were more comfortable. We got discharged after they checked his nose out and of course we ended up with another script for more medication. After everyone was over the bug I came down with bronchitis and laryngitis and of course I didn't go about it when it first started so it lasted a bit longer even with getting medication. The voice is finally back to normal. We finally are getting the van taken care of. My poor van got hit while parked on our street in January we were lucky the guy that hit it called and reported it to the police. March is birthday month for us Eoghan turned 13 on the 3rd, my birthday was on the 4th and no I'm not telling my age and Aidan turned 18 on the 5th. Dad would have been 74 on the 8th and then Ms Maurs will be closing out the month with her 10th birthday on the 20th. The next big day is St. Patrick's Day so will hopefully have some fun pictures of the day to post. The kids will be sporting the tee shirts I am making for them so we will see how they come out. Thats it for now

Happy 18th Birthday Aidan

To my wonderful nephew Happy 18th Birthday

Happy 13th Birthday Eoghan

Wow its hard to believe I have a teenager I still remember like it was yesterday that I brought you home from the hospital. You are really coming into yourself but not to worry young lad I will keep you in check. This year you are doing really great at school keep up the great work. Love you loads P.S. Of course I had to take a bit of trip down memory lane with some pictures Eoghan 2 mths old Mammy and Eoghan First trip Home Ireland Feb 2001 Daddy and Eoghan Eoghan and Maurs Second trip Ireland 2003 Eoghan and Finnian Daddy and his boys Eoghan and Finnian \ Eoghan with Maurs and Finny one of favourites Your first day of school Having fun in the snow with your brother