Oh have I been slacking

Well on Saturday after Finnian had a seizure and threw up we took James and Marie downtown to see some of the sights. It was raining after we got off the train but it didn't really matter hey a bit of rain never harmed us growing up in Ireland so a bit of rain sightseeing wouldn't harm us either. Finnian was in his buggy with the rain plastic over him so he was as snug as a bug in a rug. He was really in fine form and he did enjoy himself.

Sunday we went to my brothers house for a party celebration. Well it was the Mammy's Birthday, our 12th Wedding Anniversary and we had a cake for James and Marie for their engagement.

The kids are off from school and Joe took a weeks holiday from work. Finnian being Finnian he has been having seizures that he hasn't had in a long time along with the usual ones. Don't really know whats up with him. We saw his seizure doc and she wants him to come in for an EEG so it would be really cool if he had something when he would be in .

He scared the dickens out of his nurse on Wednesday. Yup he had an oldie type of seizure that she has never seen him have only on video. She was on her own as I had popped around the corner to my Mom's so she called and said "come home NOW". The first time he had that type of seizure I took him to the ER to be treated but now we have suction machine and O2 along with rescue meds. He is at high aspiration risk with that seizure and if we cannot stop it we have to take him to the ER that also has happened.

Next week Finnian goes in to have his hardware removed so we are hoping it will just be over night but we will see.

Of course as soon as I called about Finnian's pulse ox it started working again. Its the story of my life or so it seems. We have got a great unit now and I can even hang it up on his I.V. pole so it is out of the way. The only thing now is the probes are different as it is a different make. So the ones I have hoarded away are no good as they don't fit. So if any one has a Nellcor pulse ox machine drop me a line as I have N-25 probes to give away.

I guess I better sign off as I need to get some shut eye as we have a busy day of sightseeing ahead of us and I need my energy for hauling Finny up and down the subway stairs.

Took the Visitors to NYC

James and Marie at Rockefeller Center
Across the street from Saint Patrick's Cathedral
And again
Saint Patrick's Cathedral
Times Square 42nd St
Times Square
Look even Farmville has a poster on 42nd St.

Took the visitors down to see some of the city. We started at Rockefeller Center and worked our way down to Times Square. They even picked up some knick knacks to take home with them.I gave them the real New York experience you know the dirty water dogs from a cart on the street. Come on its the one thing everyone wants to try. We were home again just after 2:30pm. Well I don't like leaving Finny too long yes I know he is in very capable hands with his nurse Bonnie but with the last 2 weeks you never know with him. The other 2 got to hang out with Nanny and of course they got to eat lunch out. Maurs got McDonalds and Eoghan got Subway.

Tomorrow Dee is coming down to spend the day with them. Then on Saturday we are going back down to the city to see the Sea port, China town, Little Italy. We will have my side kick in tow with us and Nanny will have the other 2 again. So it will be fun, fun, fun. Hopefully the weather will be nice

I haven't slept for 7.5 hours straight in over 2 weeks what a night sleep I had. Joe didn't have to go in on his day off so he took the night shift. Other than taking a run to Costco for my neighbour and stopping off to pick up Irish Easter Eggs for my Mammy that's really all I did. The laundry still has to be done but that can wait until tomorrow.

The kids are off now for Easter break from school so there will be total havoc going on in the house tomorrow. You know the constant picking on each other he did it no she did it etc.

Finnian didn't do too bad today only 1 bad tonic seizure and the poor lad boy did he scream when it happened.

Well put another call in to the supply company about our pulse ox now we are on batteries for power. We figured out what is wrong with the machine. Where you plug in the power adapter in to the machine thats loose. So any little movement the machine will shut off. Thankfully it can work on AA batteries but you know they only last like 12 hours and when you have to put 6 batteries in at a time soon I will have to take out stocks in Duracell.

The latest ...........

You know its so easy to say why doesn't the doctor try a different medication on him something has to work. What about if we try all the meds and nothing works. Its so easy to say but you are not the one that sees what my child goes through. Yes there are other parents out there who really and truly understand. You know there is no wonder pill that will make him normal. Wow we all could wish for something that easy.

The pulse Ox is acting a bit weird we have it plugged in but it keeps telling us that the battries are low?????? Well I hope we can get it figured out soon cause we have been waiting almost a month for a new extension cable.

Congrats James and Marie

Congrats are in order for James and Marie. They just got engaged while here in the Bronx on their holidays.

I loved his status he put on his FB page James "is offically of the shelf. Marie said YES"

Marie was more lady like with her status "Yoo Hoo I just got engaged to James in America"

Well hey its a trip they will always remember.

Congrats James and Marie

Guess what he did today?

Yup thats right he threw up. We had just gotten his weight back up again. I hope it was just from him lying on his tummy while he was eating. His heart rate was whopping out over 200 at times today and he also had to be put on O2 for a little while.

He has been fine since so hopefully it was just a little pressure on his tummy that made him throw up. He has had a few small seizures but that's the norm.

He is back on the O2 but that's better than the constant throwing up right?