Control????????

It was said that we are lucky that we have good control of Finnian's seizures and that is why we are able to do all the fun things with him well I am sorry to tell you we don't have control of his seizures. During his awake cycle we have decent control but when he clusters or has a Tonic Clonic we have had to use his VNS and 2 rescue meds and still we were pushing to the last minute before we have to take him to the ER because he is in convulsive status seizures. His Doctor has changed his protocall and has added a 3rd rescue medication. I just hope I don't have to use all 3 as I know what 2 loads of benzodiazpines does to his breathing and his swallow control if I have to use all 3 he will end up in hospital.
We have no control over his seizures during his sleep cycle and on a good night he will have anything from 4-10 and hour every hour while he is asleep and on a bad night he has had as many as 28 an hour.  He also has seizures when he naps.We have tired medications and increased his night time dose of Klonopin to try and calm them down but it doesn't work. We even tried adding a dose of valium along with his regular dose of Klonopin and his other seizure meds to see if it would make a difference on his seizures. It didn't but what it did was make him sleep more so he had more seizures. Because of his high rate of seizures during his sleep cycle he is at higher risk of SUDEP. He is on a pulse oximeter when he sleeps and on the not so good days and bad days he is always on the pulse ox to monitor his oxygen levels and his heart rate. We have seen his heart rate dip so low in to the 30's that we have to do chest compression's to bring his heart rate up. We have seen his heart rate hit a high of 256 and we prayed it would come down so he wouldn't have another stroke. We have seen his oxygen dip down to the high 40's and we have had to give him mouth to mouth and get him on oxygen and watch and pray that it will come back up to normal ranges. We have seen him seize and nearly drown on his own secretions nearly every time he has had a seizure like that he has ended up with aspiration pneumonia.
I never leave the house with out his rescue meds, oxygen, pulse oximeter and CPR mask even just to go around the corner. We never know when he will cluster or have a Grand Mal but we are prepared. We cannot and will not let his seizures control our lives. Yes sometimes its not easy to get out with him but we still do.So every chance we get we are out and about. He is very social friendly and has a smile for most people. I made a huge breakthrough with him about 3 years ago with signing yes and no but its in the last year he really uses it on a daily bases. He also has a few other signs he uses but he doesn't use them as good as yes and no.
Finnian might have Epilepsy/ Dystonia/CP and other issues but we try not to let them control our lives

Why do we do the things we do with Finnian?

Some people are amazed and some are shocked. Yes shocked. We know some people talk about us that we are great and then we hear from other via the grapevine that we need out heads examined we shouldn't be doing those things with our disabled child. 

There was a time I had Finnian so bundled up and protected but it was affecting what I was able to do with my other 2 children. So who was suffering more that's right my other 2 kids were losing out on being normal kids being able to do normal child hood things all be cause of their brother. I didn't want them to resent him so one snowy day as they watched big fat snow flakes fall out side and school was cancelled, My oldest son said to me "I wish Finnian was like me and Maurs and we could go sledding" Man what a punch to my gut. So I took a few deep breaths and then then next thing everyone was pulling on snow gear. Finnian got bundled up and I put him in the jogging buggy and off we went to the hill to go sledding. So the 2 are having a great time and Finnian is sitting in his buggy and they ask can Finnian have a turn. The first thing was "no way" he might get hurt or get sick but the more I thought about it I realized I was holding Finnian back it was me that had him so wrapped up to protect him that may be I was doing the wrong thing. I just remembered what the head of the neurology department said to me " take him home and treat him like your other kids and if something pops up take care of it" I was protecting my child because of his issues but at the same time I was not letting him experience life like another child. So I put him on the sled and told my oldest son to push him off when I got down to the bottom. So I had just gotten to the bottom and I turned around and I see Eoghan pushing Finnian off. There I was thinking what the hell what if he falls off ? What if he is scared? cause I sure as hell was. Next thing we hear Finnian squealing in delight and he did stay on the sled. So when he got down to the bottom there was a huge grin on his face and he was signing "more", He went down the hill a few more times that day. I was so proud of him so since then unless he is sick he goes sledding like everyone else on snow days. Yes we get looks and people come and ask questions but the one thing you have to remember Finnian is a little boy and even with his disabilities he does enjoy doing regular little boy things. We just have to adapt and modify to his needs.

Finnian swims, he goes down the big slide at the park, he loves going on the trails the bumpier the ground the better he likes it that is why a jogger buggy is a great investment. He goes to the beach and loves to sit in the water that is where he first sat on his own for more than 30 seconds. We take him on public transportation yup he goes on the bus and the subway. He has even participated in a kids Spartan Race (Obstacle Course Race) all right it was the special needs race and he did get help but he did it. 

I guess back in September of 2008 when the doctors were asking me for a second time to sign a DNR  as he was in a coma and on a ventilator because his lung had collapsed because of all the medication they had to pump in to him to stop his seizures I realized how much he didn't get to experience so since then we live for the good days and do things. On the bad days we promise him we will do something fun on his good days. Yes I do know that he may go to sleep and never wake up, yes I do know that the next round of pneumonia he may end up ventilator dependent and we know the next bad seizure he gets even with all the medications could be his last. But at least we will have memories of what he did on his good days and what we did on his not so good days and the promises we made to him on his bad days. He is a gift that came packaged a little differently than my other two gifts but we have to remember to look past the wheelchair and his other inabilities and see the little boy that is in there and live life every day like its our last day because we don't want to have regrets. So that is why we do the things we do with Finnian.

Sunday June 8th 2014

Finnian's buddy Steve talked me in to doing a Spartan race so I was asking around to see if anyone wanted to do it with me and my sister in law Siobhan was on board with me so we registered. So Sunday came and off we went to attempt our first Spartan race. Siobhan wanted us to have shirts and we had to have the number 8 on the back. What is the reason for the number 8 is if you know your bingo calls you all know the call for number 88 yup thats right the 2 fat ladies. Yes we are both on the larger size but it didn't make a difference we were going to try and do this. The biggest work out I get is lifting and carrying Finn-man oh and putting his wheelchair in and out of the back of the van
So we get there take care of getting our number and race packet. Off to the start line and there is a wall you have to get across. Siobhan was funny and said there is no way she was getting over the wall with help so she went around it. A guy gave me a boost and over it I went dam was I proud of myself. Oh man the hills were "FUN" but we pushed through and yes Siobhan even got over walls with a bit of help yes I was the step stool. We even did the monkey bars and the volunteers and the crowd were brilliant coaching us through it. Siobhan even climbed the cargo net up one side and down the other all thanks to the volunteer gal that was there. Now what you don't know is Siobhan is afraid of heights so for her to that was huge. After that we did more hills climbed over rocks through the woods. Came to obstacles and thought "Oh Crap". Crawled under barbed wire and then had to get in to water and get up and climb a wall and down the other side. Siobhan tried but didn't quite make it then it was my turn. I was laughing but you know what with a boost from the volunteer I got up that sucker and down the other side. The monkey bar cargo net there was no way we were doing it so it was burpees oh man. Rope pull did it then came to a wall and said no way so it was burpees again oh man my hips were feeling them. Then we had the barbed wire crawl/roll/scoot and got hosed down in the middle of it. Oh by the way don't wear a cotton tee shirt that sucker was water logged. On to the next of course I didn't get the spear anywhere near it so it was more burpees. More hills and through the trees over rocks at this stage we had picked up to coaches Steve and Natasha. Only for them we wouldn't have gotten through it. Sand bag hill was brutal I was nearly tempted to slide down on my arse but I probably wouldn't have much of the arse of my pants left so I slipped and slid my way down. We were the last 2 on the course but when we got to the finish we had done more than we ever expected and it felt bloody good to cross that finish line. Thanks to all who were at the finish line and cheered for us and thanks to Steve and Natasha who encouraged us and really pushed us to finish.
So we now have bragging rights to being Spartans we have the black and blue marks, the achy muscles, the cuts and bumps but we also have the finishers medals

 So you know if we did it you can do it. Our time from start to finish was 5:37:16 for me and 5:37:14 for Siobhan not too bad for "88". So Tuxedo you will more than likely see "88" back on the course again and hopefully we won't be doing as many burpees.
Steve-o thanks for the push and we did have fun and we did say some colourful words as we were going up and down the hills but we did it

June 2014

Wow time seems to be going by so fast. School is almost over for the kids Eoghan will have his Graduation on June 13th and then its off to High school in September. He had his 8th Grade dance on Thursday night and he looked very handsome It seems just like yesterday he was putting on his St. Brendan uniform for the first time and heading off to kindergarten.

We have added a new rescue med to Finnian's list of medications. Midazolam (Versed) nasal spray which works fast but it doesn't stay in their system very long 2-3 hours. His seizure clusters have been lasting long even with swiping his VNS, giving a dose of Klonopin and sometimes well nearly all the time giving a dose of rectal Diastat. He usually ends up on oxygen for a while as the Benzodiazepines affect his respiratory system especially when he gets 2 doses of them in a short time. So keep your fingers crossed that one dose of this new benzo with stop his seizure clusters.
We took a trip up to Tuxedo, New York to a Spartan Race. The kids ran at the Spartan Race in Citi Field and Maurs wanted to do one where she would get wet and dirty so off on a road trip we went. She had a great time and said it was much tougher than the one at Citi Field. Here are some pictures of Maurs in action

While Maurs was on the kids course myself and Finnian were checking out the big boys and gals course and I happened to see Steve-o. We met Steve at the Spartan Race in Citi Field and he carried Finnian in the kids race. Steve also is the reason that Finn-man has his new special needs jogger if not for him and his fine bunch of guys and gals we would be still squishing Finny in to the baby jogger. I also cannot forget to thank my family and friends who helped too. Well the next thing I know I agreed to let Steve and his crew go off with Finnian I know can you believe it? I had to get Maurs as she was on her second lap of her race so off I went to get her and then we went off  to meet Finnian. They took Finnian on part of the kids course and thanks to Josh Gibney and Spartan we have these brilliant pictures

Thanks to Melinda for these pictures too

Then they came around to where Maurs and I were and they took him on the real Spartan course with them. Wow! They even had Finnian do some of the obstacles with a lot of help but between them they did it. I think the pictures will say so much more that I could so here are some pictures

Everyone crosses the finish line as a team. Thanks everyone for giving Finn-man the adventure of a life time. Thanks Steve-o, Earl, Greg, Henry, Terence, Kayla, Melandie, Laura and the Spartan crew and volunteers.
I know people want to know why I let Finnian do things like this but take away the wheelchair and his disabilities he is still a 9 year old boy and boys and girls like to do stuff like this so why can't he when you get a group of people like these who are willing to help a little boy be just like any other little boy.

OH WOW!!!!!!!!!!!!

What began as a dream (a special needs jogger) is now going to happen. All thanks to Steve-o and to everyone who gave to our Finnian's "gofundme" page.We passed our goal amount in just over 24 hours. You know we cannot thank everyone enough for making this happen it really is unbelievable so everyone THANK YOU SO MUCH!!!!!
I know Finnian will be so much more comfortable in his new wheels. I think this little boy is happy as so many people came together and made this happen for him.
A special Thank You to all who organized the Spartan Special Needs Race it was because of you this came about for our Finnian.
Thank you all !!!!

Its been awhile

I have really neglected my blog its been an outlet for me and its time to get back in the swing of things.Of course I fried my computer again but not to worry working on getting a new one. So much has happened since my last blog update. The kids went back to school in September its hard to believe Eoghan is in 8th grade we know he will be attending All Hallows High School in September. Maurs is in 5th grade and doing great. Finnian is still on home medical and he will be staying on home medical school its safer for him. Not to worry even with all his issues he is a very social friendly child and he gets to experience basically everything maybe even more than some kids. December was a busy month for us Finnian was in the hospital getting a medication change for his seizures and then he made his Confirmation. We are still in Religious Instruction class and yes I did have to his home work and you know picking a Saints name was just as hard if not harder than giving a new baby a name. We picked well I should say I picked St. Colman. There are over 300 Irish Saint's named St.Colman's but 2 stood out as they have connections to where my parents are from in Ireland. So on December 9th 2013 Finnian received his Confirmation. Then Christmas came and of course Santa Clause came and paid us a visit. Eoghan got a laptop so that is what I have been using since my lovely PC decided I worked it too hard.Seizure wise it was a bit rough for Finnian as we were still weaning one of his meds and slowly going up on the new one. January came around and Finnian's birthday he turned 9 years old. We have had a lot of snow this winter and of course the sleds got dusted off and we spent a few days out on the hill and of course Finnian had his turn. We had to get him a bigger sled as he is finally too big for the circular one he lost his wellies coming down the hill and ended up with cold feet. February was good Finnian wise he was behaving seizure wise. The month of March we saw the seizure monster come back never fails stop one type and another pops up but you know we are used to it as it happens all the time. As a parent of a child with special needs the one thing I try is to give him a normal child hood. Now I know most think I am off my rocker but what you have to remember is he is still a child and in a way he needs to try normal childhood things. Yeah we have to adapt to his need but you would be surprised at the joy he gets. He goes on the swing (special needs) in the park, he goes down the twisty slide on his own in the park I need someone with me to put him down the slide but he loves it. He goes sledding I get him ready at the top and get someone to push him off and I will get him at the bottom and carry him back to the top and we will keep going until I have had enough running up and down with him. I take him on the NYC buses and subways I am really learning all the wheelchair accessible stops if we have his wheelchair but if we have the jogger it doesn't really matter he loves being bounced up and down the steps. Will have to invest in a new special needs jogger as his legs have gotten too long for the regular jogging stroller. Its expensive but will be worth it as we use it a good bit in the summer at the beach and on the trails and its what I use in the snow. We had the best day out this past weekend. We went to Citi Field to a Spartan Race no, no I didn't do the race but 2 of the kids did the race. Yup Maurs and Finnian competed and honestly what an experience for both of them. What an amazing group of people honestly they are all great individuals but as a group words cannot express how truly amazing they are. Well you are probably tired after reading this so I won't bore you with anymore of my ramblings so instea.d you can look at some pictures Confirmation picture

a collage of his hospital stay we have to have fun

Sledding

Finnian's new sled

flying past me

not too impressed with the snow on his face

Some Christmas pictures

The Birthday Boy

St.Patrick's Day yup she put a skirt on me

Citi Field Spartan Race

Finnian and his HERO Steve-o

See the cheeky grin on him he is having fun

Me and the 2 kids

That's it for now