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?

Sunday, Sunday

You know I am really hating these seizures or episodes that he is having. This morning just after 4am his O2 dropped down to 78% and he looked like he was having a stroke his heart rate was in the high 180's. Thankfully I didn't have to shove any crappy meds in to him to stop it. That one lasted about 2.5 mins. So that was over I got back to my book. Yeah, yeah I read trashy novels. Well its either that or looking up stuff on the computer to keep me awake.

At 4:56am he had another seizure this time a tonic one. The poor lad screamed and you know it had to hurt. His poor legs were a straight as a boards and his toes pointed his arms were contracted. It was about a minute long but seemed longer.

The rest of the day was a sleepy one for him and at times he was having O2 dips but they wouldn't last very long.

You know at first when he was just having the seizures at home you kind of get antsy as you wonder is it something in his home environment that is causing them but when he has them other places then you know you are not crazy. You know if they brought us in to the EMU and hooked him up he would more than likely not have any.

Oh well another thunder storm just rolled through lets see what the rest of the night brings.

Oh what a Saturday morning

Most people who really know me know that I don't sleep much any more. The reason is when I go to sleep I don't hear Finnian's alarm. So I do most of my sleeping between 4-7am and then I sometimes have a nap in the evening between 8-10pm. Sometimes my hubby is really nice to me and gets Finnian ready for the night by giving him his meds and feed and I can get an extra hour or so of sleep.

This morning I went off to sleep just before 4am and I don't know why but I woke up at 5:03am and something told me to check on Finnian. Normally I would just close my eyes and go back to sleep. Thank God I did because my little man was in a bad seizure. Next thing as I go to get his suction machine and the diastat his alarm went off. His heart rate was 197 but his O2 was holding great at 96%. I started to suction all the saliva as it was pooling in his mouth and you could hear him sucking down in to his lungs. I gave him the diastat and had to suction him a bit more. It took about 20mins for him to be back to normal.

By 7am I had a raging headache I guess form lack of sleep or lack of coffee so I popped some panadol and laid down but didn't go to sleep. My Mammy called and said she would take the 2 to Irish class and she would show the visitors around at the same time. So I took Finny to the peds to have him checked out now that I didn't have to worry about the other 2. Got to the peds and I was surprised that it wasn't busy. Normally I avoid the peds office on a Saturday at all costs. We were a walk in so we had to wait but I didn't care. He checked him out and the only thing he could see was the ear infection that the ENT had confirmed on Thursday and that his other ear was red. So he gave him some oral antibiotics to stop the infection in the left ear and we were to continue with the drops in the right ear. Other wise he was fine and his chest was clear. We also got some scripts for some of his supplies.

The rest of the day was ok his heart rate was a bit on the high side. The kids came back with the visitors and Maurs went to a birthday party. When Joe came home I got the scripts filled and picked up a few bits and bobs in the shop. Joe cooked dinner well they had chili dogs and chili cheese fries. I went in to bed to see if I could get rid of my head ache.

The head ache is finally gone and I am back to my normal schedule blogging at 2am.

ENT follow up and another bad seizure

Today started out to be a good day. The weather was really nice and the kids got to school in plenty of time. On the way back I moved the van and put Finny's disability tag in the window, well I didn't want to get boxed in as we had an appointment down at the hospital.

Get everyone loaded in and off we went to see the ENT. Got there and we were in the waiting room and the next thing Finny''s alarm was beeping up a storm. Bonnie got up and left the room with him. Just then the nurse called us as we were next and showed us in to a room. Thats when the crap hit the fan. Yup there was our Finny in a full blown seizure and his heart rate was over 200. So we just closed the door as we knew that there was no way he was going to come out of it on his own. So we went to put him on the little kiddy table that was in the room only to relize that we didn't have any pads to put on it so I just used my jacket. So we had to give him an up the butt (rectal diastat). When the doc came in he just looked and knew there was something up so we just said "Oh he just had a seizure" all he wanted to know if he should call down to the ER and let them know we were on the way. Both of us were like " Oh don't worry he's fine" but he really wasn't. SO he got his ears checked out and of course he has a little ear infection but its not something that would cause the seizures he has been having. So with a script for more ear drops we were ready to leave. Bonnie had taken Finny out and I was getting my book ready to make another appointment when I got asked if Finny was really ok. At that stage he was really starting to come out of it so I told him not to worry that we could handle it and we didn't need to go to the ER. SO we went off on out merry way with a script and a follow up appointment.

Popped by to see Danny as he is in the adult part of the hosptial to say hello and then we were on our way home. Finny slept and when we got home he woke up and was in the best of form.He was chatting up a storm and even chatted to Nanny on the phone. Even now he is in great form other than having the stinky smelly diastat poopy nappies.

Lesson learned today make sure that there are disposable pads in all bags including the stroller bag and to make sure we bring 2 diastats with us.

If we had not given him the diastat we would have ended up in the ER with him. Normally we don't give diastat much at all but when we see a certain type of seizure we now know that if we don't get the meds in to him right away it will turn serious really fast and that's not fair to Finnian. I guess I have gotten used to his "bad" seizures and thankfully I don't freak out any more but I have gotten to know the ones that have to be treated right away and the ones we can wait and see if they will stop on their own. Must call the doctors office tomorrow and get them to send me out a script for more Diastat so we can have it on hand. You know he has gotten 3 shots of the up the butt and also a few extra doses of Klonopin in the past week. It really hurts to know that I have to shove that crap in to him but I do because we have to stop some of them right away before it causes other issues.

Got a call this afternoon that they had to change the date for his surgery on his belly so now he will be having it in June.

Sunday and Monday morning

Oh I am tired, my poor body doesn't bounce back like it used. I still get told sleep when he sleeps but you know it never fails as soon as I close my eyes his alarm goes off. So that goes out the window.

Our poor lad had another seizure in the wee hours of the morning. Yet again it was only on the right side of his body. This bothers me a bit as the left side of his brain is his good side and I know he has a few hot spots that seizures come out of but the last few have come from his good side (left side). It wasn't very long but at the same time it was a tonic and they can hurt. He had a few dips in his O2 so I didn't go to sleep until I heard Joe's alarm go off.

Called the neuro's office to let them know about the episodes over the weekend so now waiting for the nurse to call me back. I just hope we don't have to change his meds. I just like to blame the weather as today its very warm. We already had to strip him off and wipe him down he was scarlet red.

So now waiting to hear back from the doctors office

I don't know whats up with our Finnian

He had been great all afternoon laughing, and chatting away and then he fell asleep. Well he woke up screaming, I mean screaming with tears running down his face. The neighbours must have been wondering what the hell was going on. Of course I went through the 50 questions, do you have an owie here, do you have an owie here etc and he screamed every time I asked him. We ended up with everything hurting and him still screaming. The only way to keep him from screaming the house down was for me to hold him tight and play his music. First of all the CD player is on the blink so that was out then his ipod wasn't charged so that was out, the rest of them didn't want me to play his music on the computer as they were on it so in the end I just told Eoghan to pop the DVD into the xbox or what ever it is. By the time the 4th or 5th song came on he had stopped screaming. They always say that music calms the savage beast well it sure did.

We cannot say if it was seizures even though he did seem to be having some tonic extensions but at the same time he had his head tipped back like he does with his dystonia and he was also having some arm movements but only in his left arm. What ever it was it seemed like he was in pain. Maybe all he wanted was some snuggle time and music with Mammy I don't know. Now he is asleep and getting a feed hopefully we won't have a repeat of last night.

Pictures of Maura and Finnian

See my snazzy little man
I love this one of him he is soooo grown up looking
Finnian and Maura
This one is really nice of the 2 of them

First Confession

Today was Maura's First Confession. Eoghan did his First Confession while at school but now they have a mass and then the kids go to confession. It was a bit unusual for me to be a the front of the Church but Maura was in the second seat and only the parents were supposed to be sitting with them but I had my side kick with me. I took him out of his chair and left it over on the side out of the way. Of course we were only sitting down when I looked down at his pulse ox and it was blinking (I had to turn off the alarm while in Church) thankfully I had or it would have been beeping up a storm. His heart rate had dropped to 48 and yes he was sitting up. First I tried just rubbing his chest to see if it would bring his heart rate up. I didn't work so I just laid him across my legs and gave him a few little compressions, that didn't work. So you can imagine what was going through my head at that stage? Crap I have to get up and leave Maura all alone sitting in the seat to take care of her brother. Instead I just gave him a few more taps on his chest a little harder this time and thankfully his numbers started to rise. They rose a little to high his heart rate went up to 193 but at least that was better than 48. So with that episode diverted we did enjoy the rest of our time at Church. Will post some pics of the kids later.

Oh Mother Nature make your mind up

You know I always say Finnian is affected by the changes in the weather and some in the medical community think I am off my rocker to think that but its the truth. You know as I say I might speak with an accent but I ain't stupid. I am the one that is with my child 24/7 I am the one that knows whats normal and whats not but I know I don't have any letters following my name stating medical professional so sometimes what I say is only taken like a grain of salt.

Like tonight I was having a nap as I was tired and Joe came in and said "Finnian's having a seizure" so when I got out to him there he was in a seizure. His heart rate was only in the 50's but his O2 was great. So we do the usual wait and watch so when the time was up he got his up the butt (diastat aka rectal valium). In one way the seizure wasn't too bad because it only affected one side of his body but at the same time it was on the right side of his body which is his good side so it means that the seizure came from the left side of his brain which is not great. Thankfully it did not affect both sides if it did we would have probably ended up in the ER. Sometimes we cannot stop that seizure with the meds we have at home. Thankfully it stopped and as the usual he had his crying fit afterwards. He finally fell asleep so hopefully when he wakes up again he will be back to his normal self.

2011 Academy of Country Music Awards - Darius Rucker - Music from the Heart

What a morning

You know I just knew that today would be a weird day. It started out with Finnian have a bit of paralysis in his left arm. This is something that we have noticed in the past where he doesn't move his left arm and when you pick him up his arm would just hang like a wet noodle. Later on he was all set up nice in his "man" chair when his nurse said "he is having a seizure". It was one we haven't seen in a while but its a bit scary as his O2 really drops fast. I know I am a bit of a terrible Mother but I did indeed video tape it. We were asked by his neuro to tape all of his events if possible. I know they cannot say for sure by looking at a video tape that "yes" its a seizure they also need the EEG to tell them but at least they can see what "events" he is having.

Got his surgery scheduled for May 3rd to get his hard ware removed from his hip and legs.

Maura is making her First Penance on Saturday. Finny and myself will be going with her. Daddy has to work and Nanny will take Eoghan to Scoil Gaeilge. So its a busy Saturday for everyone.