Up early on a Saturday morning

There are some nights that Finnian only naps and last night was one of those nights. As long as his music is playing he is quite happy and he will amuse himself. He usually sings along, wrestles one of his many animals that are in bed with him or he will kick the side rail of his bed. I don't know how many times I have been looking for the pin that lets the side of his bed down. It gets loose from all the kicking even though I tighten them up every day.

Thursday and Friday he had an increase in seizures well really in the past 2-3 weeks they have been on a steady increase. On Thursday when we were on the highway going down to the hospital he decided to have a pretty big tonic seizure so I had to pull over as his O2 was dropping and his heart rate was climbing. His nurse got out his magnet and zapped his VNS and I got the O2 hooked up on him. I didn't even look at the nasal cannula I had put in the bag but when I went to put it on him we laughed it was a baby one thankfully there was another one in his bag. We were a wee bit late to the first appointment but everything was fine. On to our next appointment which was a bladder function scan. The final result they are putting him on flomax and then we go back and get him checked out again. They don't want him to be retaining huge amounts of fluid in his bladder cause that could cause more issues.

Friday morning started out with Finny having 5 seizures by 9:30 am. So we just loaded him up in to the van as he had another doctors appointment. So off we go at least this time he waited to have his seizure while we were on the street by the hospital and not on the highway. SO get to the doctors and told them about the new med he is on for his peeing issues. She wanted to know if this was something new with Finnian but alas its not. Even last year they were debating about putting him on something for his peeing issues. For a while we would see his inability to pee right before he would have a big tonic clonic seizure.

Saturday was another disaster day with seizures and yet again I had to pull over on the side of the road. Thats why I don't want to go anywhere by my self any more with him in the van cause you just never know when those suckers will hit. I keep my rear view mirror trained on Finnian's seat. Years of driving the postal LLV and only using the side mirrors has come in real handy.We go this week to see ortho and neuro I hope they just adjust his meds down and turn his VNS up another click and with the ortho we get to see what's going on with his thumb on his left hand and get his hips and spine checked out to make sure all is ok there. We know he has to get new long legs so we will probably be getting to see John or Walter to get them made.

September

Well the kids are back at school. I should say Eoghan and Maurs are we are still getting Finnian's school year with home instruction and therapies set up. It poured the first 2 days of school so we didn't get to take any pictures out side maybe Monday I will be on the ball and get out early to take some.

With all the rain poor Finnian was having increased seizure activity. It seemed everyday he was sucking back O2 for a while. The VNS magnet was getting a work out of so it seemed. Then Friday was a shitty day for poor Finn man. I know until we get what he was having on an EEG they won't say its a seizure. It will probably be like last year take him to cardiology, pulmo, movement etc and the answer will be like last year its neuro in origin. Then again September, October and November are always seizure months for Finny just like February, March and April seem to be the same.

Well Eoghan is in 6th grade cannot believe it and he like his teacher so thats a good sign. So the rules this year if he ends up that he has to go to summer school he will not be going to Ireland with Nanny and thats only fair to make him work for something he really wants. Maurs is in third grade and she likes her teacher its her first time having a man teacher. He is a great teacher Eoghan did well in his class when he had him. He makes learning fun for the kids and he gives them a good bit of homework.

Our Finnian slept for 15 hours after his shitty Friday. In a way I am glad he does have a feeding tube so getting his food and meds into him wasn't a problem. I was a bit nervous that he was sleeping so much. I woke him up and he was up for about an hour and then he went back to sleep again. you know he got diastat yesterday as we have a stinky poopy boy today.

Next week is kinda busy with doctor's appointments Finnian has 3 and I have to go back and see the GI well I need my medication for my belly. I know, I know I shouldn't drink as much coffee stay away from the ice cream, milk, chocolate and many many other things and I probably would be all right but hey no one is perfect.

A new post finally

I have sat down and written so many and never posted them all because I never finished writing them but I am not getting up unless Finnian pages me until I update here. Aug 5th at 5:10pm get call from billing office in hospital confirming insurance info and found out he was having his surgery on Monday Aug 8th for his VNS. Talk about notice I was in a panic as I had not gotten his bloodwork done nor his medical clearence for the surgery. Next thing the nurse for the OR called and went over all Finny's info. I told her we had nothing done and peds office was not opened on Saturday to get medical clearence. She told me not to worry if they wanted it done they could get a peds in the hospital to clear him and there was plenty of time to get the blood work done in the hospital the morning of surgery.

Sunday morning we got the devastating news that little Joseph Knight had gotten his Angel wings. This beautiful 19 mth old little boy fought his battle against the SEIZURE monster and lost.

Sunday night/Monday morning I didn't get much sleep next thing we were in the van going off to the hospital. No problems with medical clearence then I took him down to the OR and left my little man in the hands of the OR crew once he was asleep. They kept him overnight and put him in to the ICU where they could keep a better eye on him just incase of seizures. Got discharged and came home. He was a bit sore and cranky and then he decided he wouldn't pee. So Wednesday night I took him to the ER as I couldn't get any pee out with the catather at home. True to Finnian form he peed when the ER doc was checking him out. We had a repeat of non peeing and not been able to get the catather in on Friday so I decided to wait it out and if he had not peed my morning we would go back to the ER. I got up on Saturday morning no pee so hopped in to the shower when I got out I went and checked and as soon as I walked in to the room you could smell pee so we avoided a trip to the ER.

We got his VNS turned on and of course that evening our Finnian decided he need to try his VNS out. He had a tonic seizure and the first thing we tried was the VNS well it worked. I will tell you my knees were knocking as I swiped the magnet and then watched and waited. Just to be safe I had Joe get the Diastat but we didn't need the diastat. We have appointments set up next week for out Finn man to get his water works department checked out, follow up with his GI and we have to go back to the Neuro to get his VNS checked out.

Joe, Eoghan and Maurs are off to SC for a few days to see the grand parents. Eoghan just came back on Wednesday from Ireland. He loved it and is making plans that he will not have to go to summer school next year so he can spend all of his summer vacation over there in Ireland.

Our nurse changed her vacation so she will be with us to go to Finnians appointments next week she also didn't like leaving me on my own 24/7 for 5 days. My best laid plans for next week are shot with Finnian's appointments but I do hope to get in some beach time weather permitting. Tuesday is the best looking day as his appointment is an early one so may be the beach or may be a trip out to Ikea well we will see.

Sad Day

I was devastated to read that one of our Little Warriors had lost his battle and now is at home with God. Sweet little Joseph Knight passed away in the early hours of the morning at the age of 19 mths.

Please keep his Mammy, Daddy and big brother in your thoughts and prayers

Word of wisdom

An old woman once said, "There comes a time in your life, when you walk away from all the drama and people who create it. You surround yourself with people who make you laugh. Forget the bad, and focus on the good. Love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life, getting back up is living."

Eoghan's trip so far

Sorry I don't have any pictures but he is really enjoying himself. Everyone cannot believe what a good eater he is. The one thing is Eoghan is not a junk food person well most junk usually has stuff that he cannot eat because of his EE. So he is getting plenty of homestyle cooking. On Sunday they had leg of lamb. You know when he was telling me my mouth was watering for good Irish leg of lamb. Yeah here you can get it it costs a fortune and it wouldn't be my first choice of meat to buy here.

He has done a bit of touring he was at the Aillawee Caves on Sunday and today he was back around Clare he was at the Cliff of Moher and was on the Corker Hill and the Corkskrew Hill. aThey are supposed to be taking tomorrow off from touring so they can rest up to go in to Galway for a bit of shopping.

Always the *****

You know I am often called the *****. To be honest I don't really care. As the old saying goes " sticks and stones may break my bones but names will never harm me". I am the one that always spoils family functions cause unless Finnian can go I don't go. Sometimes we are all going and then the shit hits the fan with Finny and me and him don't end up going. Sometimes people are very happy that we meaning Finny and me don't show up. Just the other night there were a few jibs thrown my way but you know I don't care. My Finnian is just as much apart of the Family as everyone else. But they don't see it that way. Well you know they are the ones that are blind and if they took a real look around they would see that their perfect world isn't that perfect at all.

They all think I am the ***** that wants all the attention. Well you know they don't know me at all because I am not that type of a person. What they don't understand is I cannot leave Finnian with just anyone. He is a high risk for just any one to take on. I would not be able to go out and leave him in just any ones care he needs special care some one who understands what his seizures and other medical issues are. Even then he can put the medical professional through the hoops. He has done that even with his nurse who has been with us for nearly 4 years. He had a seizure that she had never seen him have and it did scare her. He can be asleep one minute and the next be in a full blown seizure that requires rescue meds and oxygen.

To plan to go some where takes time as we have to make sure we have everything we need for Finnian. I wish it was just throw a few things in a bag and off out the door but its not. Now its a bit harder as his pulse ox only has a battery life of 6 hours so we always have to make sure we can juice it up if we go out for the full day.

So you know jib me all you want cause I will tell you you wouldn't last an hour in my shoes.

This is a video of our Finnian having a bad seizure. I am not say you have to watch it but it might make you understand why as a parent of a very medically involved child I put my kid first.