Merry Christmas

Hope Santa was good to everyone? Well he came to our house and Eoghan came creeping out just around 5:30am Then Maura showed up around 6:20am. Finnian was the one to sleep in and he didn't wake up until about 9ish I think. I got very little sleep that night as Finny's alarm was going off it seemed like every 15-20 mins all night with low heart rates.
Maura got a puppy but its not a real puppy. Its a cute little thing he came with a bed, a brush and his chest moves up and down like he is breathing. He is a golden retreiver puppy and Max is his name.She also got a watch and a basketball.
Eoghan got some games for his x-box and gift cards to get more. He wanted West Side Story DVD couldn't find it anywhere so I got it on itunes for him but having issues getting it to go on to a disk for him to play it in the DVD player so I guess he will just have to watch it on the computer until I get it sorted out.
Finnian got an Uggly doll, a sock monkey, a puppy blanket and a razzberry teether. He really likes his sock monkey. They also got clothes.
Dinner was over at Mam's and there were more prezzies to open. Deirdre got me oven mits well on Thanksgiving she was taking something out of the oven with mine and I forgot to tell her about the hole and she got a blister so she said she would get me ones for Christmas and she did. Maurs got a nice jacket and boots from Nanny and the boy got some clothes. We still have to do some shopping for them.
We had great plans for last Friday but we had issues with our van and were out of commission. So I dropped the van off at the garage to get fixed its supposed to be ready later today. We just have to get a hose replaced as we are leaking coolant. We were lucky as we could have really messed up the van good job I noticed that the temp was higher than what it normally is and I added coolant. Can't wait to get the van back in running order as we had planned on going to the beach to the basketball courts and the park over there. We are also going to go to the gardens as the Holiday Train show is on. We haven't been there much this past year we had so much going on with Finnian and his surgries and the change in his seizures we were sticking close to home with him.

Christmas Pictures

Eoghan decorating the tree

Putting the decorations on the tree

Happy boy Finny

At least they are all looking in the same direction

Finny is hiding in his santy hat

Eoghan and Maurs

Eoghan and Finny

Maurs and Finny

Let me think about that

Fake smile

Strike a pose

Smilie boy

See I am looking at you and smiling

Playing shy

Cheeky Finny

Hang on getting comfy

Relaxing with my leg up

Update finally

We have been plodding along basically the same ole same ole going on. Took Finnian to the wheelchair clinic to see about getting him a gait trainer (soup to nuts walker) and to see about getting him a real wheelchair. Right now he has a stroller/wheelchair and its time for an upgrade. You know these thing cost a fortune thankfully we do have insurance. So we go back in January to get him fitted for both items.
Eoghan and Maurs got their progress reports and both are doing very good.
Took pictures of the kids in front of our Christmas tree for the Christmas cards what a laugh. Finnian the pup wouldn't look towards me at all. So I uploaded the pics and ordered the cards. So me and little man were hanging out and he was in fine form so I started taking pics of him at 1:30am in front of the tree and you know I got some great shots of him. Yes he is a bit of a night owl but its our time together.
This past weekend he was having some issues with low heart rates the weekend before he had a high HR and a high temperature. Now for the past few nights his O2 keeps dropping but only when he is asleep.
He did great with his PT today and was even moving his leg to take steps. This is a huge development for him.

On another note I have been diagnosed with the same digestive disorder that Eoghan has. Had the food allergy tests done and I have allergies to soy, nuts, peas and buckwheat. Some others were itchy but didn't swell like the other 4. I am a genetic carrier for cealic disorder so have been advised to go gluten free. Have you ever read the labels on the packaged foods? Soy is like nearly in everything. Had some regular pasta the other night and its so not worth it. Will have to start buying gluten free products

The part came in for my computer and thanks to Rick and Dee its not going to cost an arm and a leg to fix.

computer is down will have to give an update later when I go to my Mom's cannot write updates from my nook

Halloween pictures of the kids and Joe

Every year the local photo studio has a special a 4x6 picture for $2 so every year they have been in business we get the special and love it.
My happy vampire
My gangster
My bat girl
Here's a full picture of my vampire
Oh yeah here's the Italian Leprechaun Joe

A New Blogging Mom

On of my friends has just started blogging so if you would be so nice and pop over and check her blog out that would be great. If you would like to leave her a comment I think she would like that but please remember BE KIND.

http://www.marrerofamilymakingthemostoflife.blogspot.com/

Notes From a Dragon Mom

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

Ronan is fading, but our day-to-day experience with him is often peaceful, even blissful: cuddling, feedings, books, walks, naps. We brush his teeth to keep them from rotting even though he will never use them to chew solid food. It doesn’t always feel like enough. I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Ronan and his Dragon Mom

Its been a while since I posted. Nothing strange or exciting has really been going on. Eoghan started back at Irish classes on Saturdays. Maurs tried out for the basketball team at school and was picked for the team. So she goes to practice on Tuesdays and Saturday so she cannot go to Irish class as they are on at the same time on Saturday.

Finnian is Finnian and having good days and some great days and then of course a few crappy days. Right now he is sucking back O2. His alarm was ringing just after 2am letting us know he needed a little help in the breathing department and at 4:35am he had a big tonic seizure and his O2 dropped even more so we had to crank the O2 up to 4 liters. His heart rate went up to 179 which wasn't too bad well not for him anyway his heart rate has been higher at times. I used the magnet and even then his seizure was 6 mins long I was getting the diastat out when he came out of it.

You know he had a great day yesterday and the day before and even on Saturday he was in fine form so I was waiting for the shit to hit the fan. I know so many tell me I shouldn't think like that but its what always happens so I never get too comfortable.

I wasn't on the computer much over the weekend so I was doing all my catching up in the wee hours this morning. I was heart broken to read that Noah King one of Finnian's buddies from Down Under had gotten his Angle Wings at the age of 10 years old.

I hope Finnian behaves himself today as Mammy is working on very little sleep

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.

Alarms beeping.........

This morning at 5:03am Finnian's alarm went off. I hadn't even gone to bed I was in the bathroom so I ran and when I got in to the room Joe was trying to get the O2 hooked up on Finnian. Joe was in a bit of a panic as he could see Finny's O2 drop lower and lower and his heart rate go up,up. So as usual I snapped "move I'll do it" then my own heart did a flip as I looked at the pulse ox O2 was only 62 and going down so I cranked on the oxygen and had to put it to 4 liters just to get him up in to the high 80's. Normally 2-3 liters work on him but he was in a seizure. So between watching his machine and the time then second guessing should I have given him diastat right away. But at the 5 minute mark his seizure stopped and everything went back to normal so I started to wean him off the 4 liters of O2.

He is still not himself and he was lip smacking, rubbing his nose and gagging like he was going to throw up we gave him a diastat. He is just lying there now not even able to suck his thumb we even have tried to get him to suck a soother but he cannot. He is just so wiped out seizures SUCK, SUCK, SUCK big time. We all wish it was as easy as "take these pills and don't worry". We are shoving so much into him to give him his normal and its not enough. It just breaks my heart to see him loose functions as simple as sucking his thumb. If he looses that what else has he lost ability to do?????? I don't even want to think about it right now I just want my Finny to get over this hump hopefully at home

Can I get it undone?????????

6 weeks ago Finnian had the nissen fundo done and also had a hernia repaired. Well guess what? he is starting to throw up again. I am so pissed its not fair that he has to go through this crap. At least before when he would puke it would just come flying out of his mouth and nose and it would be over and done with. Now....... we watch him gag and heave, his heart rate goes through the roof and his O2 drops. you should see his poor tummy every muscle pops and you can see the ripples/waves as he tries his best to get the crap out. Yes I do vent his g-tube when he is throwing up but all we usually get out is air sometime his gastric juice's will come out but not always.

So now I feel like taking him back to the surgeon and having him undo the nissen fundo on his tummy so he can go back to throwing up the old way. My only fear now is he seems to gagging and heaving much more strongly now than before I hope he doesn't undo the hernia repair.

I just feel so helpless

Packing

Eoghan came out at like 7am this morning with 2 shirts on hangers and presented them to me. I want to take these with me. OK . So I sent him in to try on his jeans. He has grown a bit and also put some weight on so out of the 5 pairs of jeans he had only one that fits. Well guess what I am not going shopping for jeans the one pair will just have to do him along with the 2 pairs of wind pants. I know the weather is cooler in Ireland but anything is better than the last few days we have had. So he said he will be fine with his shorts and a sweatshirt if its cool.

Next thing he comes out with his socks and boxers and says "here's more to put in my case". He is so excited and every now and again he is asking "should I bring this with me?" I guess if I let him he would bring everything he has with him. I keep telling him "look they have washing machines in Ireland you don't have to take everything you have with you cause I know some of it you will never wear". You know we all do it when we pack we pack extra's that never leave the case. I don't want to over pack because he is the one that will be hauling the suitcase around.

Oh well I better get back to packing. You should see Maurs just came out with 2 shirts saying "you know he has to bring these with him" Yup she has his Galway jersey and his Mayo jersey in her hands.

Tuesday update

Well I started out the day by doing laundry,laundry, laundry and more laundry. That will teach me to do it more than once a week. Yeah right until next week I will be saying the same thing.

Finnian's PT was in today and he was working with him and asked did they change any of him meds? Why? we asked " His tone is different he is not as tight" They increased his Dystonia meds and while we have only gone up 1mg he could see the difference. I have seen a change in his hand movements and he isn't sticking his foot out to trip people either. The PT also go him to sit up on his own for over 30 seconds. Now to most that might not sound like a huge time but if you saw our Finnian last week as soon as you would sit him up he would arch and tip himself backwards. So 30 pulse seconds is huge for him.

Eoghan is getting on really good at summer school. He did very well on his tests with fractions. He even go 100 on one test. He now is so excited about going to Ireland with my Mom on Sunday. He was even saying to her today. Monday we won't have to worry about the heat cause we will be in Ireland. It will be his first trip with out me going with him but he is in great hands he is with Nanny.

Hopefully the last Doctors appointment for a while

Well we finished our marathon of doctors appointments today. Hopefully Finnian will behave himself and we can avoid doctors for at least 2-3 weeks.Well wishful thinking anyway. So we went back to see his neuro to touch base on what had been going on with all the appointments. Well his seizures have been running on a kinda normal schedule of little ones and big ones. The one thing everyone questions is his drop in O2 and his high and low heart rates. Well the doctor is now thinking that may be he is having seizures from deep in his brain that is affection his heart rate and O2 function. The bummer about these is they don't show up on an EEG as they never seem to make it to the brain surface where the EEG electrodes would pick them up. We cannot relate them to medications as we were not monitering him 24/7. Now we are but we cannot wean him off meds just to find out if its a medication that is doing it. We used to only moniter him with the pulse ox during a bad seizure.

We go back to the neuro 2 weeks after we get the VNS put in so they can turn it on. Hopefully we don't have any emergencies until then.

Finally an update

You know we have had a lot going on with Finnian well we had basically a week of appointments for him. Eoghan also had a big appointment as well. So I will just start with Finny. On the 8th we went to see the doctor about the VNS for him. He is a good candidate for the surgery and it basically came down to "did we want him to go for it". Well you know it is a surgery but if it will help his seizures and his quality of life we are going for it. Don't have the date yet but it will be in the next few weeks. Tuesday we went to the ENT and he said he looked good but to watch his right ear and if he started showing signs of having an ear infection to just start back on the drops and come back in a few months. Well on Wednesday morning there was blood pouring out of his left ear yup his ear drum popped. We had to take Finny down to the hospital for an MRI so I explained the ear drum problem cause I wasn't sure if they would do the MRI but they did and when it was all over we went back to see the ENT and he couldn't believe that his left ear drum had popped so the next time Finny is having anything done under anesthesia he is going to put a new tube in his right ear as he doesn't want him popping another ear drum. Thursday we went to the school district for Finnian's IEP what a mess they are basically starting from scratch again this year since his kindergarten year was totally messed up as there were papers missing from his file important ones that with out them there was basically nothing we could do so he didn't go to kindergarten. We have to go back for another meeting to see what is going to happen well at least if they say he has to go to school I hope they put him into an English speaking class cause we aren't bilingual they way they think we are. Friday we went to see the movement disorder doctor for Finnian and at the same time Eoghan was having his GI scope with biopsy done to check out his autoimmune disorder. Well since I couldn't split myself Nanny came to the rescue and stayed with Eoghan so I could go to Finny's appointment. Well we know his Dystonia has gotten worse and knew his meds for it would have to be increased so it was a new doctor we saw and she gave him a good check up and agreed that his meds needed to be tweaked. So we came away with a new script for his meds and another appointment in October.

Eoghan did good but because of his weight and height he is now getting adult doses of anesthesia so he wasn't feeling the best as he was tired and his tummy was a bit upset.

Monday we have another appointment for Finnian and then hopefully we will get a break for a few weeks. Its just a follow up appointment with the Neuro to touch base after all the important ones we just had. Hopefully the MRI report will be there if not I guess we will have to go back.

Eoghan will be finished with Summer school on Friday he is doing really well he has a 91% average in his math in summer school. Then on Sunday he gets on a plane to Ireland. He is getting so excited about his trip with Nanny.

Happy 4th of July

Well I went and did the 10k. Oh boy was it tough. It was a cross country trail. So you can just imagine mucky, slippy track. Oh boy were the worms out at one stage the ground was moving with all the worms. But so sorry by the time I passed there were a few less wriggling. The first few uphills were ok but there was part of the route all I was thinking not another ********* hill. I was never so glad to see the flat stretch to the finish line. My time all considerate was not too bad for my first cross country 10k was 2 hours and 1 min. There is a huge difference between pavement pounding and cross country trail. I am tired and my knee and ankle are letting me know that I did push my self. Once I put my clogs on the ankle was feeling better but I will have to figure out how to tape my knee cap. The taping on my ankle worked great so I will have to invest in more rock tape.

We went to City Island for a late lunch early dinner and everyone came back with some colour on them including Finnian. Johnny's Reef is a great place to go to eat. Maura loved the fried clams and yes she is my picky eater.

When we got back Joe decided to take the kids to the park as the new playground is opened. Finny and myself stayed at home which turned out good as he had a tonic seizure his heart rate went over 200 and his O2 dropped down to 79 and he screamed the whole time he was having it. You know 1 and 1/2 mins seems like forever when he is screaming and it stopped like the plug got pulled. Then after he was scrubbing his poor little nose and was a bit out of it for another minute or so. We both had a nap I am still a bit stiff but if all goes well I will do the next 10k on Labor Day at least I will know what I am in for.

The latest gossip from us

Well on Saturday I took the kids to the beach all by myself. Eoghan and Maura had a blast and spent most of the time in the water. Finnian spent his time in his jogger under the beach brolly. He did end up on O2 but otherwise he was in fine form. I got major colour I guess I should have been a bit better at putting the sun screen on me.

Sunday was a not so nice day. It started out with thunder and rain in the morning and the rain kinda lingered on through out the day. I did see a few small seizures from our little lad but nothing that required rescue meds.

Later today I am going to be doing a 10k. My goal is to walk it in 1 hour 30 mins. No I do not run or jog I just walk. Well lets put it like this I have to lose a few more pounds before I would attempt to run a 10k and there is no way I would jog I can walk faster than jog. Will be very honest with my time. Let you know later how I do.

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First anniversary in Heaven Dad

All we have are memories but they will never fade. Happy First Anniversary in Heaven Dad.

We little knew that morning that God was going to call your name. In life we loved you dearly, in death we do the same. It broke our hearts to lose you, you did not go alone; for part of us went with you the day God called you home. You left us peaceful memories, your love is still our guide, and though we cannot see you, you are always by our side. Our family chain is broken and nothing seems the same, but as God calls us one by one, the chain will link again.

miss you

Father's Day

Happy Father's Day to all the Dad's out there.

Last few days

Well I don't know what the hell is going on with Finnian. One minute he is fine chatting, interacting next thing he is in a bloody seizure. Or when he is sleeping his heart rate is low enough to set the alarm off on his pulse ox. Top it off he is getting fed every 2 hours so there seems to be something beeping all the time. I guess I am just a bit sleep deprived.

The kids had their Spring Concert at school on Wednesday and it was really nice. Today they had an early day as the 8th Grade are Graduating. So Congrats to the 2011 Graduating Class at St. Brendan School in the Bronx.

Next week the kids have early dismissal so I will be picking them up at 12 noon all week except on Friday they get out at 10 am and then they are done for the summer hopefully. Eoghan might have to go to summer school we haven't heard yet so fingers crossed he doesn't have to go.

I hope its just the thunder storms that have been setting Finny off well you know I do like to blame the weather. So hears hoping for blue skies and warm days.

Appointments, appointments, appointments

Wow my calender is filling up with Finnian's appointments. There is already 1 week in July that he has an appointment a day with different doctors. We finally got an appointment to see the Neuro Surgeon to discuss the VNS for Finny.

It has been said to me that I seem to be pushing Finnian for every surgey going. Well thats not true. Every surgery that Finnian has had has been for his good. We did his cataract surgery in hopes that he would be able to see. But we have since found out its not his eyes that is the issue but the optic nerves and the part of the brain that tells you what you see. He has had 3 rounds of ear tubes put in to prevent ear infections and the main thing to preserve his hearing. He has had his anenoids removed and also his tonsils. Having the tonsils removed has made a huge difference for the better. He had his G-tube and honestly that has saved his lungs as well as we have been able to feed him and get fluids in to him when he has been sick and would not have been able to eat or drink. He had his hips fixed and what a difference no more screaming/crying. So it just shows how much discomfort it caused him. He had a muscle biopsy done to see if would tell us what might be wrong with him but it didn't give us any answers. The last surgery was the nissen and found he had a hernia that had not shown up on any scans so that was repaired while they did the nissen. So far so good he has not thrown up and he has been in great form since that was done. So every thing we have done has been for his good so if the VNS will help his seizures then I am for it. The kid is on so much medication and no one knows what the long term affects the drugs will have on his body so if by giving him a VNS will help may be to cut down on meds that I have to shove in to him well then I am for it. Most people will never know how hard it is to walk away and leave your child in the care of the OR team but we do

Hospital stay

Well our Finnian had his surgery on Monday. They found a hernia and repaired it as well as doing the nissen fundolipication on his tummy. The idea of th nissen is to hopefully stop the reflux and may be the throwing up. Well so far so good.

We didn't do the usual pain meds and it has been so much better for him. He is not sick so I guess we will stay away from the morphine and the oxycodine. The Toradol agreed much better with him. So we are now home on just Tylenol for pain.

When we got to our room after the surgery there was a really nice family sharing with us. Their English wasn't the greatest but we had such a great time. Their little guy had fallen off the monkey bars at the park and broke his arm and they had to have it repaired with surgery. It was Finnian's ortho doc that did the surgery so we had a chat with Dr. H. I was sad to see our room mates leave. The father is a minister in a Korean Church and he said some prayers over Finnian. As the father said "I feel bad my son break arm and have surgery but your Feenan can no do the same fall and break arm on monkey bar" with tears in his eyes.

Then we got new room mates. Oh wow. you wouldn't think any child had seizures like their child. You know he didn't have any while we were there and poor Finnian he had 5. They were small ones but seizures at the same time. You should have heard how the kid talked to his mother. Well just let me say I was glad we got to go home when we did. If anyone had an issue it should have been me as Finny got a medication mixed with D-5 which is a no no on the keto diet even though we had stressed no sugars. But you know what he was fine and he had had some of his seizures before the mix up. I asked for them to check his Ketones and discovered we has some dip sticks in our bag so I just checked them and he was fine.

He is home on feeds 24/7 for now but they said we will be able to bump him up in about a week or so. So we just have go with the flow. The most important thing is Finnian and his belly.

Andrea Bocelli & Laura Pausini - Dare To Live (Vivere)

The latest gossip

Well today I had a fight with the medical supply company over Finnian's pulse ox. A brand new machine didn't work on battery power but it was I that was doing something wrong. Yeah right. In the end a respiratory therapist came and Finnian got a machine that works right. So now we can take him out and enjoy the nice weather.

The other fight I had was with good old UPS. The driver rang my bell but didn't say who he was and I did ask 4 times "Who is it?" and the answer he kept giving me was "I told you already" Well tough if you cannot say who you are I am not letting you in to the building. So I ran down stairs and as I got to the front door I saw the UPS truck pull away. So I called and told them that the driver wouldn't identify himself and I didn't let him in but I was waiting for Finnian's meds which get sent next day air and are supposed to be delivered by 10 am. So some one from the local depot called and wanted to know if I wanted to pick it up at the depot. Well hello my van is in the shop and I have know idea how to get there on the bus but I wouldn't be able to pick it up until 8 pm. No way was I going to be jaunting around the Bronx on buses when I had paid for a service. Then he called back and asked if I could meet the driver somewhere yeah right I would show up and he wouldn't be there. So in the end after about 5 phone calls they said it would be delivered later in the evening. The pharmacy called and they were wondering why Finnian's meds had not been delivered so I told them the story he had a good chuckle and said he would also call UPS and complain. Our regular UPS guy showed up with it this evening. He just shook his head over the whole thing and he apologized and he was wondering why they just hadn't given it to him to deliver. Its over and done with for now so I guess I will just have to wait until next month to see if I am going to have problems again.

Got the time for Finnian's tummy tuck on Monday. He is the last surgery so we don't have to be there until 1 pm. He will be kept in about 2 days he is having the nissen fundo done I know I was just joking when I said a tummy tuck.He had a horrible seizure yesterday so the neuro's office called and said to give him an extra .125mg of Klonopin in the afternoon. Got the word to call the neuro surgoen to go and talk about the VNS for Finnian. So I will be calling on Monday to make that appointment. Have to call the movement Doc she is back after having her baby to make an appointment with her on Monday as well.I called and made his eye doc appointment oh crap I forgot to make his ortho follow up appointment so that goes on my to do list on Monday.

So thats it for now

Its been awhile

Well today didn't start out too good. At 6:22am the laundry card machine swallowed my $10 bill and didn't give me the credit on the laundry card. So I didn't get all of my laundry done this morning. But at least I got the towels, socks and knickers done so now at least they have clean towels and clean drawers to wear.

The van went to the garage today for the big repair water pump and timing belt. We got the brakes and the inspection done like 2 weeks ago. So its cost us a bit this last month but at the same time we would be lost with out the van.

You know the new pulse ox machine Finnian got well we discovered it doesn't work on battery power. That really sucks so the most outing we do is around the corner for a quick walk. The heat is getting to poor Finny so it looks like I will have to put the AC on.

We have really had a time with him throwing up and he has lost weight.He was throwing up so much one night I was worried that he would get dehydrated as he wasn't even keeping down ginger ale. The same night he also threw up his meds so you know I didn't sleep at all that night. So when his nurse came in she checked him out and said if he didn't keep his meds down we would be taking a trip to the ER. Thankfully he did keep them down and we didn't have to go. He has had a few bad seizures. The throwing up has finally stopped but now he is sucking back O2. Its seems like if its not one thing its another with him. Over the weekend he had a few low dips in his heart rate they all happened while he was asleep but thankfully the alarm went off to let us know.

Next week he will be going in for his nissen fundo surgery and this will hopefully stop him from throwing up. They might have to change the position of his g-tube but we will have to wait and see. We will have to wait and see if we can get different pain meds for him this time around as it was after he had the hardware taken out of his legs and was taking oxycodine for the pain he started to throw up. not sure if it was the oxy but I would like to try something different for his pain. We go the following week and find out what the neuro surgeons had to say about Finnian getting a VNS or possible Corpus Callosum to help with his seizures.

You know he might be sucking back O2 but he is happy and so responsive to us. He is blowing everyone's minds by answering "Yes" and "No" questions. Today he even signed "eat" so when I asked him " are you hungry?" he signed "yes" back. These are the days we live for the good ones. He even "sang" for me when I played his favourite song. I must get him on video "singing" his way its really cute.

Must go and get the dinner started.

The Blue Rose

Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.

"People will forget what you said, People will forget what you did, but people will never forget how you made them feel!" ANON.

If this story blesses you today Please consider sharing it with others.

The throwing up continues

On Thursday evening Finnian started to throw up again. Normally he will keep his meds down but he was throwing them up too. Thursday night he was throwing up so much the poor lad had the dry heaves. You know its bad enough when you have them but its horrible to watch you child have them and there is nothing you can do to stop them.

Friday morning he threw up his meds again and we watched and waited for the seizures to start once we saw the first one we got the diastat ready. We had to give him some chest therapy as we could hear some congestion in his left lung. So after some chest PT and a neb treatment he was doing better. He finally stopped throwing up and he was taking some ginger ale. We have him on a low pump rate and it seems to be working.

Its sad to see he has gotten so skinny. He has lost weight again and I haven't weight him but I would say he is now close to 33lbs. Just think a few weeks ago he was almost 40lbs he was just a few ounces off it. Well hopefully that is the end of it and we can get the weight back on him fast.

You know it was bad when we even though about taking him to the ER for some IV fluids. I know some would say just take him but when you deal with Finnian on a daily bases you get to know him and know when its time to take him to the ER. We were almost at that point yesterday.

Here's hoping that today will be a better day.

Finally an update

Was supposed to bring Finny to the peds on Saturday to get medical clearance for his surgery on Tuesday but he was throwing up so I decided to wait until Monday.Fingers were crossed that he would have stopped throwing up my then.Sunday night I didn't sleep at all as he was crying in his sleep all night. You know the way they will be all settled down and you think OK this time he will stay asleep and as soon as you close your eyes the crying would start again. Monday was a mad house in the peds office and we were there for nearly 4 hours but walked out with the papers signed and given the all clear. By this stage I was tired and cranky but I still had things to do to get ready for his hospital stay. Got everything done that I needed to so I crawled in to bed for a nap and when I got up I was still very tired but I just had to push through it. I was lucky my Mammy took the other 2 kids for a sleep over on Monday so at least I didn't have to worry about them at 5 am on Tuesday morning.

We had an early start as we had to be at the hospital at 6:30am. I love early morning surgery as its nice and quiet. We signed all the papers and Finnian got checked and got approved again for his surgery. At about 8:10 am I carried him back to the OR and waited until he was asleep and then went out to call and say the surgery was starting and they would get an update later when I would know when it was over. It was great as this time they didn't send him to the PICU like they have in the past. Well may be because I stressed that they were not to give him Morphine. I didn't like the way his body reacted to it last year. Then later we were shipped up to the regular ward and once he had his IV antibiotics gotten and the Oxycontin was helping with his pain they let us out of the joint early on Wednesday.I got his scripts so he can go back to his therapy and the instruction that his dressings are not to get wet and if we see any issues to take him back to see the nurse in the office. We have to follow up next week to get his dressings off.

I was so glad that the PT came in today and he got his legs straightened out. Finny was keeping them in a froggy position and you know I didn't want to pull them the wrong way and hurt him so we let Sy take care of that. He is much more comfortable now and he has better movement in his legs already. His pain is being controlled with the lower dose of the pain med which is really great but we give him the higher dose at night so he will be more relaxed and sleep better. We have only seen his usual seizures which is great considering he had a surgery.

I know I will have a few more sleepless nights so I am just going to have to start napping during the day when the nurse is here. Its not something that I normally would do but you know when your body needs sleep you will sleep regardless if its day or night.

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.