Tuesday, December 18, 2012
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
Monday, December 17, 2012
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
Monday, December 10, 2012
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
Tuesday, October 30, 2012
Thursday, October 25, 2012
Not feeling too hot
Mammy is worried as I am getting very skinny. My formula is not sitting great in my belly and I am not able to drink all of it in the day. In July when I was in the hospital they changed my formula on the keto diet and since then the pounds have been coming off. I am now only 32.5lbs compared to the 44lbs I was in July so we are going to see the Keto Doc on Monday. I cannot drink any more than 150 mls any more and I start to throw up and I am not supposed to be able to throw up because of the surgery I had on my belly. Now they get the sucko machine and suck all the junk out of the back of my throat other wise it is going back down in to my lungs. I don't like the sucko machine.
Got my blue casts off and now I only have to wear the knee braces at night. Walter put new casts back on they are green after he made the molds for my new braces. So I have another few weeks then they will be off and I will be sporting my new braces. Mammy said she will have to take me shoe shopping for new sneakers when I get my new legs.
Mammy has been pimping my new wheelchair again now I have pirate skulls on my head rest and chest harness. She went crazy in Joanne's and bought more fabric so I will have turkeys for Thanksgiving on my chair. She also bought more Halloween fabric to make me more bibs.
Mammy is back making me nappies as I have a rash around my boy parts again and since I have lost the weight I am peeing out the leg of the throw away nappies. So she is doing loads and loads of washing between me throwing up the gunk and peeing on everything. She said she doesn't mind washing my nappies but wait and see what she will think when I leave a surprise in it for her.
Oh well Sín é
P.S. I will have her post more pictures of my new bibs and covers when she runs them through the sewing machine
Saturday, October 6, 2012
Mammy was busy
Look she put some bling on my chair. She put sugar skulls on my headrest and on my chest harness on my new chair
Pictures from my latest surgery
Tuesday, September 25, 2012
She remembered
Well it's been awhile since Mammy wrote on my blog. Sorry but she can't post pictures since the computer isn't working and she doesn't know how or if she can via my iPad. The latest gossip I had my hamstrings and ankle release surgery done today and I did sooooooo well they let me home the same day. Can you believe it normally they would send me to ICU for the night and then either send me to a regular floor or home from ICU but I guess they finally know Mammy knows me best and I am much more comfortable in my own bed at home. I have blue casts on my feet and they go part of the way up my legs but the worst part is the yokes they put on my knees to keep them straight they are not comfortable at all. Mammy took some nice pictures of me so when the computer gets fixed she better put them up here. Maybe some one like Nanny better remind her.
I have a new home instruction teacher this year. I like him even though he makes me do a lot of work. He comes in for an hour a day Monday through Friday. I do miss Ms Tasha who I had for 2 years.
Mammy came home from a meeting the other night all excited that I will be making my Fist Holy Communion next year and Eoghan will be making his Confirmation.
Well that's it for now
Tuesday, July 17, 2012
Check out my little buddy James
My little buddy James has a new blog please be kind and pop over to see James's new blog. His Mammy and Daddy are also fundraising to get him a wheelchair van so if you have a few extra dollars that you can give please give it to James so he can get his new wheels. Here is the link to his blog www.fansofjames.blogspot.com sorry you will have to copy and paste it in to your web browser Mammy doesn't know how to get it linked directly. You can also go to the bottom of my page and you will find him under my friends.
Sín é
Coney Island
On Saturday we went on a trip. I got to go on the subway. Its a bit hard as the station by my house is not wheelchair friendly so Mammy and Daddy had to use their muscles to get me down the steps in my chair.
Yup there is my family with me on the subway. You will get to see a picture of Mammy later as she is usually taking all the pictures.We get to Coney Island and the station there is great very wheelchair friendly. The fist stop for our day is the New York Aquarium.
Mammy took loads of pictures of the fish, turtles and jelly fish. There was a section on the wall that I had fun touching
That was fun. Mammy also has pictures of Eoghan and Maura
After the Aquarium we went and had lunch at
We walked along the boardwalk and out on to the pier and of course Mammy took more pictures
Did you see Mammy in the last picture with me, Eoghan and Maurs? To end out the day we walked around the rides at Coney Island. Daddy and Maurs went on the wonder wheel and then Eoghan and Daddy went on the Cyclone rollercoaster. Me and Mammy were chicken and didn't go on any rides.We had a great day out and we were wearing our "Proud" tee shirts from 3ELove.com a lot of people like them. So if you would like shirts like ours pop over to www.3elove.com and say "Hi" to Stevie and the gang there.
Bye bye Coney Island had a great day out with my family there hope to do it again later on in the summer
Sín é
Wednesday, July 11, 2012
Pictures
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