Nothing really new

Well everyone is doing good thought Finnian was getting Joe's cold but thankfullyhe didn't get it. Eoghan and Maura are taking their allergy meds and their cough has gone away. I was sure Maura was comming down with croup again she is a bit prone to it when the weather changes or if she gets a cold but thankfully the allergy meds shifted her cough too.
As for me I haven't lost anymore weight but still holding the 17lbs off. I have to get back walking again I had told myself that I would be doing about 5 miles a day by now but alas I am lucky if I get a half a mile a day done. I have no excuse the kids are all in school so when Finny gets on the bus I should just go and do it.
Since we have increased his Banzel he is more alert and is sleeping a bit better even at night but getting him to sleep is a bit harder. I have made up my mind we will not increase any more meds without reducing one of the others he is on. He is on 4 medications for his seizures and the Keto diet, 2 supplements, vitamin drops and an allergy med. We go back to the pulmologist on Thursday and he will probably want him back on his asthma meds via nebulizer. Its too much crap he is on. Don't know if its the increase in theBanzel or a change in the weather but Finnian is drooling alot again so much that he needs his bibs on again. Well I will just wait and see for a few more days the last thing we need is for him to start aspirating his own spit.
Oh well....................

Some fun pictures from the weekend

He was smiling but you couldn't see

My boys

My little kitty cats

Rainy Sunday

Well today is a day for the ducks. Its raining off and on and kind of damp makes it feel more like Fall now.
Well our boy was a bit funny all day yesterday but thankfully no major seizures that we could see anyway. He spent most of his day lounging on the couch hooked up to his contraptions.
The othe two had a blast at the street fair with Joe and came home with some goodies they were very happy.
Well today my Mammy is giving us our Christmas present early a new TV as the one we had in the bedroom kicked the bucket. Oh long gone are the days when there would be only one telly in a house and I remember only having one tv channel RTE1 and then later came RTE2. But now we all cannot live without cable tv, moblile phones, computers, Wii system etc.
Must go as I have major tidying up to do, to be honest it looks like the four walls ran into each other.

What a morning

Well at 6.07 am this morning our Finnian had a big screeming seizure. I just ran in and grabed him out of his bed and and basically dropped him on the couch. He was still in his seizure I slapped on the pulse ox and his little heart was beating at 189 beats per minute and his oxygen levels were only 78% . The oxygen got taken out and put on him and he got his diastat up his butt. Thankfully his O2 levels came up in to the 90% range but his poor heart was still beating fast. That too came down thankfully. He is sleeping since and all of his levels have stablized out.
Yesterday he did have a seizure no shouting but he did go blue so the oxygen got taken out and we did chest stimulating to make him breath. His nurse said thank God he was not at school when that happened. I just told her "hey we have done this so many times now>" She said "I know but we would have been on the bus when that would have happened." Then people always wonder why my little guy has such a big back pack he needs it to carry all of his gear. I told her not to worry just get the bus driver to pull over until she gets him out of the seat and on to the floor and all she can do is the same thing that we do at home.
Well Joe went and took Eoghan and Maura out there is a street fair on not that far from the house so its just me and my side kick here at home. Maybe when he wakes up we might go and have a gander around at the fair then may be we might just hang out at home all day.
Will update later and let you know how his day went.

Just lay it all out don't hold back

The one thing I hate is some one to sugar coat or dance around the subject. That happened to day at the doctors office and I am a little P.O. about it. Look I might not have any letters after my name and I dropped out of college but I am well learned ( had no choice) in medical stuff anything that concerns my kids.I have spent hours reading and researching on both of my boys but more time spent on our Finnian. Look I know that our Finnian is not a "normal" epilepsy case and yes I do believe that he does have some underlying condition that has not been pin pointed yet. He is not a kid that "normal" lines of medical therapy works on he is kind of out of the box. He takes mega doses of meds but yet he has enough electrical activity in his brain that would probably run the household appliances every day.
I have seen my child have many different types of seizures and I have pumped more meds into him to stop them. I have seen him turn blue during a seizure and so have others. I have sat and waited to hear that gasp of air rushing back into his body with the phone at the ready just incase. So there is no reason to sugar coat or dance around the subject I prefer to know the good , the bad and the ugly. I might not like what I hear but at least I would know. So doc just lay it all out and don't hold anything back.

Well our boy has been having good days and has been doing very good at school. He is even behaving himself in speech therapy. He usually does not like to particapte and often pretends to be sleeping of else he will not do anything just point blank refusal.
He is even back sleeping all night which for me is great. No more hour here 2 hours there now I guess my body has to get used to getting 6 hours straight sleep. May be its because my natural highlights are really showing. I cannot understand why people are surprised that I have gray hair I am no spring chicken.
Got a call from the doctors office telling me that Finnians appointment has been changed from 9.30am to 10.30 am which is fine. Now I have fifty million questions flying around in my head and also wondering what changes if any they are going to make to his meds. Must remember to get new perscriptions for nearly everything he is on I also need to get a script for more diastat. With any changes will probably need it. Oh well will update tomorrow when I have more news

Happy 1st Birthday Ronan

Happy 1st Birthday

Ronan

Love your cousins in the Bronx, New York

My little daddy long legs meds for a day

This is Finnians pill holder for one day only and there is one medication missing Miralax.

This is what he gets at night

Here is my little daddy long legs with Daddy last year in Ireland sitting on the small tractor.

Nothing new

Nothing new to report which is a good thing. Had the school meet the teacher night and go over the school rules last night. Maura has Miss. Quinn who is a great transition teacher from kindergarten to first grade. Eoghan had her and loved her and so does Maura. Eoghan has Mrs. Mangafreida (spelling) so we will just have to wait and see how 4th grade will play out.
During the night Finnian chewed his blister that he had given himself yesterday. Its a big nasty mess. We will have to think of a way to stop his chewing its a big joke to him when we tell him no he still does it anyway. Will have to look into getting "No no's" for his left arm so he won't be able to get the hand into his mouth. He was supposed to wear his hand brace today but with him having a huge boo bo now on his finger we cannot put it on. So instead he just wore his thumb splint. It hoefully will be on for at least an hour before it will have to be taken off of him becasue he loves to chew on it. I have even wrappd a bandana around his hand he will chew on it and after about a half an hour that has to get changed too.
Friday is getting closer and there are loads of questions flying around in my head but I am writing them down so I will have plenty to ask when we see his doctor. He is still having some seizures but they are nothing like what he was having. I do know the weather does play a huge factor with his seizures there is more rain comming in so we will have to keep an eye on him. I have my own personal weather boy well at least we know when it will rain. He went off to school dressed up very preppy. He is wearing his Crocs and thanks to Nanny he even has them in different colours. His nurse makes sure his shoes cordinates with his outfits. Must make an appointment with the orthoic people for both Eoghan and Finnian. Eoghan's shoe inserts are getting small and Finnian's toes are starting to pole out over the top of his "legs" and they are getting short on out little Daddy long legs.

Spoke too soon

Well the little ham woke up this morning happy. So in to the shower he went but just before he was all done there was that tell tale twitch. I had gone to drop the other two at school so Bonnie had him and as soon as I walked in all I hear" he's twitching for the last 3mins and not responding to any stumilation" So we just watch and wait. Next thing he is out of it and not fully himself. Not even 3 minutes later he is having another one. So I just go and get the diastat and give it to him and we wait and watch again. He came out of it but still not 100%. So Bonnie said she would take him to school so off they went. The bus driver was probably bitching because we sent in the rolls royce not the convertiable. Finnians school bus is not a wheelchair bus so they usually put him in a carseat and fold his wheels. So I told the bus driver look it goes to school on Monday and comes home on Friday because I need it for the weekends. I love the Kimba full support, fully adjustable and for Finnian its the right chair for him to be in when he is not 100%.
Got a call from Bonnie telling me that he had another seizure at school but came out of it on his own which was great because he would have to get Klonopin as he had his max amount of Diastat for the day.
He is home now and yet again is totally himself. Having a blast on the floor. I keep telling my kids when you are finiched with something put it away but of course it falls on deaf ears. But my dear Eoghan just learned that Finnian on the floor can cause problems Yup Finnian just kicked over the Wii and now Eoghan is mad and telling Finnian that he was not to go near there but my sweet boy just laughed at his big brother.

Guess what?

Yup he's back to himself again. He is there on the sofa laughing, kicking and having a ball of a time. Just have to be careful he doesn't do an oop's and fall of the sofa. Well it wouldn't be the first time he did and oop's off the sofa.
It's hard to believe its the same child. Yesterday he couldn't even roll on to his side on his own but yet now he is flipping all over the place. Its sad to think what these bloody seizures do to our children.
You know I would take an oop;s and a bloody nose from doing it any day over what he has been through the last few days. Well we cannot dwell on yesterday we can only hope that tomorrow will be an even better day than today.
Had to take Maura out to get new sneakers 4 stores later we finally had a choice of 2 pairs. I refuse to buy velcro sneakers yeah they would be soo much easier but no. She is now wearing a 1.5 no wonder her other ones were bothering her they are only 13. She only wears them one day a week for gym at school and maybe on the weekends. So I was not about to pay $70 for a pair. We got her a nice pair of New Balance at Modells on sale for $20 and they are pink and gray. Now mind you I did pay sweet for her school shoes but thats something she wears every day going to school and mostly on the weekends. She is a girly girl and likes to wear dresses, skirts etc. Only last year did she start to wear pants and when they went on a school trip they were told they could wear jeans. Maura didn't have any jeans so I just went in the closet and pulled out a pair belonging to her big brother and she wore them.
Well I must go I have to get the uniforms pressed for school tomorrow.

Colic???

Who ever heard of an almost 5 year old with colic? I just had a laugh about that.These are things that I hear form people who only mean well but colic in a 5 year old now thats a new one. Some children who are diagnosed with Infantile Spasms are often given a colic diagnoses in the beginning and we all believe that's whats wrong with our kids. Our Finnian is having colic like symptoms but for him its seizures that the root of the problem. Its hard when you hear your child cry and nothing you do helps in any way.
Called the doctors office again today and got told "Geraldine there is only one doctor here and its packed please unless your really have to please can you wait until Monday and I will write him in for 9:15 am appointment?" I told them fine because deep in my gut I know its seizures and not anything else. Checked his ear again to day and there is nothing in there its not even red. his Ketone stick was a little high so I just gave him some apple juice and when I checked it again it was back in better ranges.His sugars were normal low kids on Keto diets have lower normal sugar levels so even when I gave him the apple juice his sugars were only 86 so that was fine.His peeing issues seem to have resolved again I guess the seizure is not hopping off that part of his brain which is great. I don't have a problem cathing him but I would prefer if he could go naturally. May be it wouldn't be any harm going back to the water works doctor again and getting a new ultra sound of his water works department. Well I would like kidney stones to be ruled out. Kids on the keto diet have a higher chance of getting kidney stones.
When we were out today we met Grandad and he could see that Finnian was not "normal" Finnian. Well we go on Friday to see his seizure doc and we will see what she wants to do as far as his medications are concerned We seem to be at that crossroads dammed if we do and dammed if we don't.

Finally asleep

Well its now like 2 am on Saaturday morning and I finally got the little bugger to sleep. That after 3 dirty nappies and being rocked in many positions and finally just as I thought it would be a sleepless night he finally decided it was time to sleep.
We know its seizure related alot of what is going on with him. You all probably wonder why I say this well his puking was seizure related and not a bug of any kind I was told that he could have alot of bowel movements it just depends where the seizure is hopping off of. He is also having peeing issues and this in the past has alst been related to seizures. We hadn't seen this in a few months but he didn't have a wet diaper early to day and we were pushing fluids in hoping he would go on his own. So he hadn't gone so got out out all of his supplies to cath him and low and behold he peed.I am watching him again as the last 3 diapers I have changed have only been dirty but no pee. IF symptoms continue will bring the kit with me to the docs tomorrow and get a urine sample off him there and have them check it out just incase comething is cooking in that department. ...... and so the saga continues

and the saga continues

Well this morning after changing 8 + dirty nappies I called the school bus driver and told him that Finnian would not be going to school. Then at about 8:30am I called the school to let thm know about or lad and that I was keeping him at home just incase it was viral and I didn't want to contaminate any other kids if it was true.
Wouldn't you know he was fine. No crying, no carrying on no nothing. But then at about 2:30 pm he started again even his nurse couldn't believe how quickly he changed. It seemed like his pains would come in waves and he wasn't comfortable no matter what you did with him. Had called the doctor but they would only see him if he was running a tempature which he wasn't so they said just keep giving him the low dose of antibotics and if he was the same just bring him in tomorrow morning early. So again its a wait and see approach.
Joe got home early today so I just went into bed and yes I did I had very nice 4 hour nap and that should keep me going just incase its a long night.

We can add dirty nappies to his list of symptoms. The poor lad will have a scalded little arse if these keep up. I know I hate all the washing I have to do when he pukes but for him having a scalded bum from the dirty nappies that is worse. The big jar of sudocream came out of the press and now he is happy in his nappy. All I can say is thank God of disposable diapers because I really would hate to be washing the cloth ones with what he is putting out. You often wonder where in the hell is it inside him. Because he is on the keto diet I still have to push some of his formula into him the last thing I need now is for his ketones to go out of whack. I don't want to think what would happen to his seizures.

And it starts again

Well the shit hit the fan and our boy is back to being miserable again. So tomorrow we will probably be going to the doctors office with him probably to be told can't find anything wrong with him. I just hope is a bloody ear infection because if it is he will be getting new ear tubes put in. I will insist its not fair to the poor child its bad enough he has uncontrollable seizures, blind and cannot eat like a normal person but there is nothing worst than having a pain in your ear. You put him in his wheelchair and recline him ever so slightly and walk with him he is very happy. Well tonight I will be on duty and if it keep him happy and sleeping I will be pounding the pavement with him in his jogger. Its easier to take the jogger out as I just bounce him down the steps (which he loves) in the wee hours of the morning. Right now he is whining and crying and being miserable. I checked his ear again its a little red so hopefully thats the problem. Called the docs office and got an emergency supply of anitbotics to tie us over for tonight. hopefully it works.

Of course it never happens when you wait.

Well I waited last night for the Freddy Crugger sceram but it never happened. Instead he was crying because his belly was bothering him. So at around 3.30am this morning I vented him and you should have seen the crap that came out of his belly and the smell compleatly sour no wonder he was crying.
Today at school he was very good but about a half an hour before he finished for the day he started being very clingy and whining. Even after he came home the same is going on. Now he is running a bit of a tempature he is not sick well at least I don't think he is but he could be having seizures in the part of his brain that controls his tempature. The weather has been funny today it looked like it could pour at any minute and that always afects him and his seizures. He is pulling on his ear but Icannot see anything in it and his ear drum looks good. I gave his a good dose of calpoland if that doesn't change his tempature then we know its seizures. His poor head probably is sore so the calpol won't harm him. At the rate we are shoving the calpol and the panadol in to him we will have a good dent put into our supply ah but all it means is making a phone call and I will get more. Will see if Daddy will do the night shift tonight Mammy is a bit tired and could do with at least 5 hours of straight sleep well Daddy is off from work tomorrow so he can sleep during the day.

well last night Finnian got a treat the Firemen came to our building just after 12am. It was nice to see him laughing you see he loves the sirens on the fire trucks, ambulances, cop cars etc. Of course I am the nosey one and I had to go out and see whats going on so I take my side kick with me. We had just opened the door and the firemen came down the stairs and when they see Finny they asked if I had called for the fire trucks did I need help. I said no but we were comming out to see what was going on. So out we went and I just wished I had my camera with me because you should have seen the expression on Finnians face when he got outside and heard the truck. One of the firemen asked if he was ok and I said oh yes he loves the sirens. So as they leave they put the sirens on he nearly jumped out of my arms with excitment and as the the second truck passes they also blast out the siren for him.
Now just after 4am this morning I was nearly wishing that there was some siren going off some where as my boy has another screaming seizure. Nothing could console him and every time I touched him he jumped like every nerve in his body was on fire. Well tonight I will be ready with my camera but watch he won't have one. I just hope the puking won't start again. I think I have finally gotten the smell out of my house. But with our lad you never know.

I hope I don't put my foot in it!!!!

Since we were in the hospital Finnian has not puked. We don't see the mad chewing motions he did look like he had a big wad of Hubba Bubba and was chewing like a mad man. But now he is very jumpy jerky at times and he does this gasping noise and he also will start crying out of the blue. His nurse started laughing to day at me she said it was so funny to hear me curse. Now mind you I do at times have a very potty mouth and today with the "new " things Finnian is showing I was not a happy camper. I know you all want to know what I said well here it is " those basterin seizures must be feckin hopping off some other part of your poor head Finnian" Now I was not cursing at my child I was cursing at the f... seizures. I guess I am a little sleep deprived I am kind ow getting up and checking on him to make sure he is not puking.

Friends and Family

Isn't the internet and social pages associated with it great and some times we think it is a curse because we cannot live with out our e-mail, Facebook, Twitter etc. But I have some amazing friends that I have met through some support groups, people who understand and are living a life like ours. I have also been contacted by people who I went to school with. Its true we always wonder where they are and what they are doing. More over for me as I don't even live in the same country I went to school in or where I grew up.
Then there is family, we are seperated by that huge body of water called the Atlantic Ocean but through email and Facebook that gap is nothing more than turning on the computer. I have made connections with family I haven't seen or spoken to in years. Some of us were only little nippers the last time we saw each other face to face. So thanks to the internet and social pages we no longer have to get news via the parents all we have to to is turn the computer on and we are connected.No longer do we hear " You know your uncle ...... well its one of his" or "you know so and so well thats one of them".
So family, our friends and our internet friends lets all keep in touch.

Why me???

There are many of us that always ask that question. We always wonder why? We get told that God only gives to those who he knows that can bear the burden. But why me? What was I missing in life? or what did I have too much of ?that I got chosen.
Even family say " I was the right one who got a child like my Finnian because they know others wouldn't have been able to handle it". But there is that little question again "why me?" What do they see in me that I don' t see? I know I always get told I just roll along in life and have a carefree attitude and it takes a lot to ruffle my feathers. My Mam always says things don't effect me the way it effects others I have the "water of a ducks back" approach in life.
I get told I have an inner strength that makes me handle things sometimes I wonder where it is? especially when I get told bad news. My heart and belly does one of those flips but yet in the back of my mind there is something telling me ""stop take a breath you can handle it" and yet I do.
We get told special people get special things I don't know whats so special about me I'm just an average person who could do with losing a few pounds(a lot). But then again we don't see what other people see, we don't see the smile on our face, we don't feel the positive energy that other people feel coming from us, we don't see the look on our face or how our eyes light up when our special child does something, we don't see the love that we show when we just simply caress our child face. In alot of aspects we are blind to what others see in us and thats what makes us the parents we are we see with out the rose coloured glasses. We see that our life is not on the straight line ours has many dips and cruves in it but its our life. Its not a life we would have chosen but it was one that was chosen for us.

Photo's of Finnian

Just look at that face

Being a silly billy

I don't like this on my head

Mammy still puts me in a baby crib in the hospital

We are home

Well we are home after a short visit to the hospital. They did get the events on tape and he even threw up at almost midnight last night. I was so happy that he did everything that we have been seeing at home. Now for the good news and the bad news. Well the good news is he is having ALOT of electrical activity but nothing spiking in to a true seizure. Now the bad news they say he is having seizures in around the base of the brain these cannot be picked up on a regular EEG as that only covers the brain surface.
Seizures in this area of the brain would cause the vomitting, the increase in heart rate and the breathing issues. These are harder to treat. So it now looks like we will be decreasing his meds and hopefully his other seizures won't go off the wall. So again its a wait and see approach.
Have some pics of his stay will post later.

Got the call

Well today I got the call from the insurance telling me that Finnian is go to go for his EMU admission. This was the first time that I got a call but then again its the first time they have pushed to get him in.So the nurse just called to let me know that it was a go and I would get the letter in about 5-7 days letting me know that it has been approved. She was so nice she gave me her number where if I need any questions answered about his admission just to call her. She is Finnians nurse for hospital admissions and any services he receives as an in patient or out patient. This is a good number and a good contact to have.
So I am packing our bags mine and Finnian's for the hospital stay and Eoghan's and Maura's for Nanny's house. Wouldn't you know that today he didn't puke but he did sleep alot in school todaay and he went to sleep around 8 pm and is now awake and ready to play and its almost 12.30 am. He will hopefully go back to sleep in about an hour because mammy needs her beauty sleep
night

Frist day of school for my gang

Finnian on the school bus

Waiting for the bus

Finnian and his nurse waithing for the bus

Eoghan and Maura ready to go to school

Eoghan and Maurs

Today was the first day of school. Eoghan is now in 4th grade, Maura is now in 1st grade and Finnian is now in 2nd year of pre-K. Here are some pics.

Doctor's appointment changed again

Yes his appointment has been changed yet again but at least its for after his EMU admission. Yup that's right he will be going in to the hospital to get his brain waves checked and hopefully he will do all the crap that he does at home, chewing, puking,screaming , galloping heart rate etc.
Hopefully they will be able to figure out what's going on with him.
The washing machine company must love me well I should also say Costco's because I am going through quarters for the machines and laundry detergent like no body's business. The super of the building is very nice to us letting me go down to the laundry room even after hours. Well I think he got a whiff of Finnian's puky sheets and decided it would be better to let me down because if I had to wait I think the smell off the sheets would knock a horse. Now I don't just put the sheets and pads into the machine with all the gunk on them that crap gets cleaned off first his clothes too. They also get sprayed with spray and wash with resolve its the only thing that will get the stains out. You he puked today again all I can say is thankfully I had picked up a pack of the disposable pads and put them on the rug under his tumbleform chair or I would have been scrubbing the crap out of the rug. Well as I now say a day in our house would cure anyone of being squeamish of puke.

This is the chewing that he does then usally later he will vomit

Glad to be there to listen

Sometimes we need to unload and its not onto our immediate partner/spouse, family or friends we want to unload on. Some times just talking out loud or typing on a key board to someone makes us see things in a different light. Its not everyone we want to do that especially knowing that the one we just unloaded on has enough crap giong on in their lives that could float a boat but hey I was there to listen.
You know you made me feel very important I don't know if I helped in any way but hey you really made my day. It was nice to think of other things and not my own life.
So you know how to reach me here, yahoo, facebook and my email.
So thanks glad I was there to listen

Getting ready for going back to school

Well today we went out and picked up the last few bits and bobs that Eoghan and Maura needed for going back to school. We must thank Nanny for picking up the tab don't know what we would do with out you.
It was funny Maura wanted to know why she wasn't getting a new backpack. I told her she has the one from last year her answer" but its old". It might be old but there is nothing wrong with it so it will do. i wouldn't mind but they both got LLbean backpacks last year and they are made to last.
It will be sad they all start school on the same day. Finnian will be going to the doctor on Friday and we will see what they will do something is not working and today not only wsa he puking but he was aspirating so the go old sucko machein had to come out and sucked out alot of crap. That is my one biggest fear is that it will settle in his chest and he will get pnemonia again like the last time that is somthing I don't want to think about 4 days on a vent because his lung collapsed.
Well everyone have a Happy and safe Labor day

Happy Birthday Katie

Its a proud day for Katie's parents Gary and Mekila their little girl Katie celabrated her 2nd birthday. Its been a hard struggle for Katie she has been fighting for her life since the day she was born. This little girl got sent home from the hospital basically to die as the doctors in Ireland couldn't do any more for her seizure condition. She came to the USA and see she has done pretty good. So

Happy 2nd Birthday Katie

Just don't know any more

Since the end of May our little lad has been off. Everytime we could put it down to someting like ears, tempature, puking etc. Then we added a new medication Banzel and the symptoms continued. Got chewed out by Susan over not letting them know he was puking so they reduced his Banzel but his symptoms continued. We had changed his Keto diet receipy and thought maybe he just wasn't handling the incerase so we put him back on the other receipy but still the symptoms continue. Nothing shows in his blood work only the stuff that is normally a little off so the peds doesn't know what to tell me.
Then the other night he woke up screaming in pure terror like as if Freddy Cruger was after him but within 2 minutes it stopped abruptly and he went back to sleep. He did the same thing the following night at nearly the same time. So last night I sat armed with the camera so I could show the docs what he was doing but wouldn't you know he didn't do it. But guess what he did today yup you guess it he is puking again. So now the thing is is this puking seizure related which I think so but I am not a medical professional and do I think his screaming was seizure related and not a night terror yes I do but how do I get the docs to listen to me as a mother of a child with problems and not a parnoid idiot. Well I will see about getting him in for an overnight stay hooked up to an EEG and I will also push for a new MRI to see if there are changes in his brain. From the amount of seizures he has been having it has bound to have caused more damage.
I have said it before SEIZURES SUCK but I feel so bad for Finnian he cannot tell me what he is feeling but at the same time I don't know if I want to know how it affects him when he is having them its bad enough to watch him going throuhg the motions. It is trully heart breaking to watch and always in the back of your mind you are praying its not going to take him.
My job is to make him as comfortable as possible, to make him enjoy the life he has, to make him take the horrible meds with all the side effects to hopefully keep thoese nasty seizures at bay, To mke him fight as much as possible because als long as he fights we will fight. But the main thing is we love him for who he is our son Finnian..

Good News

The FDA has approved Sabril(Vigabatrine). THe only catch is its only available through SHARE. So you have to get your doctor to register with SHARE once they do they can write the scripts and you have to sign papers for SHARE to allow your child to get the meds. You have to get the Sabril from a SHARE pharmacy. So everyone knows what I will be doing tomorrow morning? Yup finding out from my insurance if they will cover the cost of the drug well besides my copay. but now if the cost of the drug is more than what it costs to get my 2 mth supply from Canada I might think twice about it and see if I can still get it from Canada. It due for distribution mid to end of September. I will have time to find out before Finnian goes through the last shipment we just got from Canada.
There are alot of rules to follow but I do wonder if Finnian will be exempt from getting his Retinas checked out. We do get them checked 1 time a year but since Finnian is basically blind the extent of his vision is not known and sometimes he does not react to light its not anything to do with his eyes its the part of the brain that process what he sees doesn't work.
Will update when I find out more.

Here she is the new arrival

Here is new addidtion the the family. Isn't she just so cute!

This is Doireann O'Neill and she weighed 9lbs and 7oz.

All are doing great both Mammy and Doireann.

Happy Birthday Jude

Today is a very special day its Jude's 1st birthday So


Happy 1st Birthday

Jude.

Wishing you the very best day little Jude. Happy Birthday