A busy week and and even busier one next week

For a change it wasn't Finnian that had all the doctors appointments this week he only had 1 it was his ENT follow up from his surgery and everything looks great. Maura had a 'Tea Party' birthday party on Wednesday down in the city which was great fun. It was also nice just to spend time with just Maura. It made her feel so special.
I was the one that had the 2 doctors appointments. First I had to go to the cardiologist well I have a little issue with my HDL being very low and they don't know why so my doctor just wanted me to get my heart checked. Everything seems to be greatand you know I still have my heart murmer. It cannot be heard with a stetascope but it showed up on an echocardiogram. ITs teeny weeny and on the left side of my heart so its not something that I have to worry about. Next week I have to get a 24 hour moniter put on and also do a walking stress test to see if anything will show. On Thursday I had my GI follow up and everything is good with my belly so now they are just waiting to see if anything will show up on the ultrasound. They are looking for gallstones. I haven't had any more attacks which is great but they just want to see if there are any more stones. I have that appointment next week too.So we got throuhg this week with appointments 4 in total counting Maura's birthday party and next week we have 1 for Eoghan, 2 for Finnian and 3 for me but who is counting. I have to go back to the blood doctor again as my red blood cells are whacky again. Never a dull moment in my house

SUDEP Aware www.sudepaware.org

SUDEP Aware www.sudepaware.org: "Unmasking Silent Killer in Epilepsy"

SUDEP

This is a hot topic coursing through many sites but it is something that might never be mentioned to a parent, caregiver of a child or adult with Epilepsy. SUDEP is sudden unexplained death in epilepsy. Here is a link to an article in the New York Times http//:www.nytimes.com/2010/07/27/health/27epil.html

Sunday and Monday

On Sunday we went up to my sisters house there was a 4 H fair at the Veterans Memorial grounds. It wasn't huge but the kids had a good time looking at the animals and of course the cotton candy. I think we are all suckers for that one. Took some pictures but they are still in my camera. We left early as there was what looked like a huge storm coming but we only got some rain. It was a little different story in the Bronx it looked like a tornado came through there were trees down everywhere and everyone said how it was bright out one minute and the next like darkness. I was happy were weren't home when that happened.
This morning I took the kids to register for the swimming lessons and stood for 4 hours only to be told that it was closed all the classes were full. Well thats what happens when you go for the free things. THe kids didn't care as long as I take them to the pool during the week. Its free, no membership required, no fees its just a public pool. A clean one at that.
Tomorrow I go to the doctor to be checked out as they are a little worried about my cholesteral the good stuff is very low and the total is good they just want to check me out. What fun that is going to be. I aslo have to go back to the blood doc as my red cell are climbing again this time I will have to get the total iron levels checked.
Oh well always something.

We got the script for the new med

Got the new med script in the mail today for Finnian. Went to the pharmacy and filled it so we started him on it tonight. Its going to take 3 weeks to get up to the full daily dose so eventually he will be on 1mg TID. We will just have to wait and see how it goes.

An invitation for 1

My hubby gets a lot of invitations just for himself but he nearly always turns them down. I think the only ones he accepts are the firehouse invite and lunch with some of the guys from work. The rest of them he just blows them off because he feels that they should be for all of us not just him. Take for example today he gets a call from a family member that they are in town and they would like to see him. He was kind of excited at first but then he realized that the invitation was just for him to stop over on his way home for work he changed his mind.
You know I won't push him into going he is an adult and he can make his own decisions. I know I will be blamed for him not going over but you know I don't care. Let them think it was me. Some of them only live about 15-20 minutes away from us but they never come to us in the Bronx. But yet my family can come from overseas and they don't always stay with us but they always come and visit and they always want to see everyone the same with friends.
The thing is we have a differently abled child and they don't know how to accept him but you know that's their loss. It was a different story when I gave Joe the ultimatum either he put his big boy knickers on and accept Finnian as his son or get the hell out. He put his big boy knickers on and said he was scared but you know so was I. Things changed for us that day and in a way I think it made us a better family.

Well we got the word

he will be getting his script and wean on schedule for the medication for the movements in the mail. We have to report any unusual movements and side effects that it might cause him. You know it doesent bother me that I now have to shove more meds into him because it is not another benzo med. I am not fond of benzo's because of the side effects and the addictive nature of the drug. Of all the meds our Finnian is on the one I hate the most is the Klonopin (benzo) it does work but I think we are coming to the end of the working phase and we cannot increase it as his body cannot handle it.