I went and saw Santa Claus today

Today after my teacher George left I had a little nap and then I got all dolled up and went and saw Santy Claus.

Eoghan and Maurs saw Santy at their school so it was just me today

So he will be coming soon and leaving me prezzies Sín é

Hello December

You know Mammy is getting very slack here posting on my blog for me her excuse is she is still trying to figure out how things work. Mammy fried the computer back in September and we are so lucky that Auntie Dee and Rick know a lot about computers and they fixed it again. So you want to know what Mammy's excuse is? She says there is a big difference between Vista and Professional 7 what ever that means. She is having problems with the card reader in her printer not hooking up to the computer to get the pictures put on the memory. So she has to put them on my iPad then email them to herself and then add them to the computer. She is taking a short cut sometimes she will send them straight to Facebook and then forget to load them on the computer. Well enough about the computer and the problems Mammy is having with it that is the excuse she is giving me as to why she hasn't added any new pictures here. You know Nanny always said Mammy gave her the gray hair but it seems I putting Mammy's heart cross ways in her and instead of going gray she is going white. She said after the scare I gave her last night she cannot believe the colour didn't fall off her hair. I will say I was one very lucky gasúr. There around Thanksgiving I was having a lot of Myoclonic seizures they were annoying can you imagine part of your body twitching and it getting stronger and stronger. So to stop them she has to give me some medicine so since I hadn't gone up on that medicine for almost 2 years the doctor decided to increase it just a little bit. Well the little increase is working on the seizures but its causing other issues and lets put it like this its putting the heart cross ways in Mammy. When I go to sleep now I get so relaxed I forget to breath so my machine is always beeping and Mammy has to move me around well nearly wake me up so I will remember to breath. This also happens during the day when I have a nap too but at least Mammy gets a break as Bonnie comes to my rescue. Last night I was beeping a lot but usually after 2 beeps I will start breathing on my own again. But last night while I was asleep I had a seizure and I couldn't handle my saliva lucky I was lying on my tummy. My machine is beeping and Mammy came flying in she didn't put the light on at first as she thought I just needed to be readjusted but she felt my pillow all wet so she flipped me on my back so she could hook me up on to my O2. She turned on the light as she couldn't see what my oxygen machine was set at that was when she realized I was blue. Thankfully Mammy doesn't panic she just does what she has to do for me. So she VNS'ed me and cranked the O2 up. My O2 was at 83% when she came in and in about 30 seconds I had dropped in to the 50's no wonder I was blue. She knew the seizure was over because I gasped in a deep breath but it took a long while before I was staying above 92 on my own. You know I was fine all day to day I was even at my Religion Class and then went to Mass. So hopefully it won't happen tonight again but Mammy is calling the Doctors office tomorrow to let them know something has to be done about the new issues. So yeah I was one lucky gasúr so lucky that Mammy stayed up last night even though it was supposed to be her night off. Can you imagine if Daddy saw those numbers? Oh well sín é

December 9th 2012

Dear Finnian, Today is the 9th of December and 8 years ago on this date we were told that something had happened to you when I went to the doctors office for a check up. He wasn't sure other than a ventricle in your brain was almost 4 times the size it should be. I took the news like a champ but lovey the hardest thing was coming home and telling your Daddy and Nanny. At that point we didn't really know a lot. So our journey into the medical world began. From scans and MRI's they figured you had a stroke but we weren't out of the woods and only time would tell. When you were born you came out crying and wow to me that was a great sign considering they only gave you a 40%. You sure did beat the odds there. Yes you are different just like Eoghan and Maurs are different. You do put the heart cross ways in me from time to time. I have learned so much all because of you. Yeah our lives seem to go around your appointments and how your day is going but we still try to make time to normal family things. The one thing that is difficult is flying so it doesn't look like we will be taking trips that we would have to go on an airplane. All the supplies you would need for a 2 week holiday is just unbelievable we just never think as all your stuff is all over the house. Your cans of food are in the kitchen, part of the closet in the hallway holds more and then we have your bins and shelves in your part of the room. Your equipment is in the bedroom, hallway and living room.So for one small boy you sure do have a lot of crap. This year you got your big boy wheelchair you had a few holidays in the hospital, you had a few procedures, surgery and they usual Finnian things. We found out that so far nothing has shown up on any genetic tests you have had done. We may never find out what caused all of your issues but giving a name to what you have won't change how we love you. Sometimes not knowing is better but then sometimes knowing is better. I was really proud of you yesterday you stood for almost 15 mins with support all while at Maurs basketball game. She was really surprised when she saw you standing and cheering from the side line. So lovey just keep fighting and smiling. Love you Mammy