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