What a morning

Well Joe took the train to work this morning as I needed the van to get Eoghan to the lab to get the glucose test done. So at about 7:50am I hear Eoghan scream "its snowing!!" Sure enough it was and comming down well. So I called my mammy to see if she would keep Maura and at the same time to let her know its snowing. So Maura got to hang out at Nanny's while we went to the lab.
We couldn't believe how bad it was outside it was very slippery. So we dropped Maurs off at Nannys and then went to get the van. So got the boys all strapped in and then had to clean the van off. As fast as I was cleaning off the van there was more snow building up on it.Next thing I know the cars are sliding all over the street. All I am thinking is "dam its bad" So as the van is warming up I hop out again to clean off the snow. There is a guy in a car and all he was doing was spinning his wheels and you could smell burning rubber. Of course I knock on his window and tell him to down shift and then I get out my traction melt and sprinkle some under the wheels and he went up the small hill fine. Next thing a cabbie is trying to get up so I tell him the same thing and use my magic melt and help him . His passenger in the back was so thankful that I helped them. Then the bus came along and he was having trouble so I helped him too. He was funny because all he wanted to know what was the stuff I was putting down as it was working great for every kind of vehicle. I nearly fell flat on my ass getting back in to the van. Next thing we heard thump all i was thinking well I know I wasn't hit. there was a bit of fender bender at the traffic light.
So I just pull out and go on my merry way. It took me over an hour to get to the lab normally it only takes about 15 minutes so that will tell you just how bad the roads were. That was when the plows were only coming out . You see it wasn't supposed to be this bad early.
We got to the lab and eoghan had his test done and we left there almost 3.5 hours later.
I was supposed to drop off stuff at Big Brother Big Sister today but with the weather it didn't get done. But the most important thing as Eoghan got his blood tests done so now we just have to wait and see what the results show. Diabetic or not.

Time managment

Some people will understand espeically anyone that goes to doctors offices. You know you have an appointment and about 30- 45 mins after your appointment you get seen by the doctor.
Well to day is an example of that. Eoghan has to get a glocose tolerence test done to rule out diabetes. So we werre supposed to go yesterday to see the doc to get the paper work but Maura was not feeling too good and since Joe had the car to work we would have had to either take the bus or call a cab. But it was too cold and to be waiting for the bus and I hate taking cabs we skipped the docs office for this morning. Saw the doctor and got the paper work and set out to the lab. Well when we got there they said they couldn't do the test on Eoghan. They only do the test between 8 am and 10am. It was almost 11am when we got there.
So now Joe is alittle pissed as now he has to take the train to work tomorrow instead of driving but hey I have to take the 3 kids with me to the lab and be there for 3 hours. I didn't know there was a time for when the test is to be done the doctor diddn't tell me.
So then I get a lecture in time managment. Well lets put it like this I felt like the bull and someone was waving the red cape in front of me. Yeah maybe it was my fault that she can down with a bug but I couldn't see taking the sick child out in 4 degree weather when I could go in the van the next morning and leave her at home.
Oh how sometimes I wish everything would go according to schedule but its life.
What fun tomorrow morning will be at a lab for 3 hours with the kids and it being New Years eve. I know I had other plans but now my schedule has to be rearranged but that doesn't mean anything.
So I guess I just have to say "Its my fault"

Happy Birthday in heaven.

Happy Birthday in Heaven Jordan.

Under the weather

Poor Maura is under the weather. She is running a slight temperature and is all congested in her head and has a bit of the pukes. So she is getting panadol and her allergy meds. It will be fine as long as it doesn't do the rounds in the house.
She probably got cold the other day as she decided to dress like Mammy. I mostly wear a fleece and a vest even when its very cold. Everyone just looks at me but I like the cold. I don't wear gloves or a hat either. I some respect Finnian is alot like me he loves the cold and we get the evil eye when we put a hat on and forget about gloves.
I have to take Eoghan to the docs tomorrow to get the 3 hour glucose test paper so we will see how she is doing if she isn't much better she will probably be going too.

New tricks

Our Finnian can let you know when he has a wet diaper he has a hand signal. He can let you know if he has a yucky diaper the same hand signal and then he will make a funny noise with his nose like as if sniffing. But the best is you cannot leave him now with out some kind of bottoms on that will cover his diaper because he will open it and then scoot away from the diaper. So I wonder if he knows when he is going to pee if so we might be able to toilet train him but at the same time still have him in diapers just incase of accidents.
He will always have to be in either diapers or some kind of pull ups because of his seizures if one of thoese puppies popped up we wight have a dirty flood going on and I would hate to have to clean that up.
Oh well we will see what happens

Second round of Christmas pictures

Maura taking out the presents

Siobhan helping Finnian

Maura showing off what she got

Aidan's back

Very happy

Christmas day

Well the exctiment continued over at Nanny and Grandad's house. They could hardly wait to start ripping into the packages. They had to wait for Michael, Siobhan and Aidan to come. Rebekah was working but she had her order put in to at least send her home some of Nannys stuffing.
So they started opening up the prezzies and the next thing we hear Maura squeal " Wii fit , Wii Fit look we got a Wii fit , we got a Wii fit. She is there with a an expression of " I cannot believe it" on her face.
Nanny is always prepared as she had a Christmas large bag for everyone so they could put their prezzies in once opened. So we had to take Nannys shopping cart home with us . We only live around the corner it was bring the shopping cart or make a few trips.
Deirdre was collecing the tissue paper from the boxes so she went home with a bag of tissue paper too. She is moving into her house on Sunday and she wanted the paper for wrapping up some of her breakables. Her poor cats won't know what happened to them when they will have so much room to wander around in. Well the house is over 2000 square feet so there will be plenty of hiding places for them..
Will post pictures later of the gang in Nannys house

Well here are the first pictures of Christmas day

oops the white patch on the wall is where the wall got fixed from the leak

Eoghan

Why open it when I can just eat it

White gogo boots with fur (fake)

fun opening my prezzies

thanks for your help Dad

new DVD palyer

hey I'm hungry

modeling my new boots

my 3 again

Happy Christmas

Happy Christmas everyone. I hope Santy was good to all. I know he stopped by our house and dropped off a nice load of prezzies. there will be fun in the morning when we will hear squeals of happiness.

Doctor's visit today

Well today we went back to the peds office to get Finnian's ears checked out it was just a follow up. So while there I asked if I needed to see the doctor to get a new script for my inhaler well I did because its been over 4 mths since Iwas there. Not to bad I just sibned my name on the adults page.
I happened to ask if they had the flu shot and they said yes we have both. Oh great as Maura never got her regular flu shot as they had run out before so her name got put down on the peds sign in sheet along with Finnian's.
Well Maura got her flu shot and hardly cried which I am so proud of. Finnian still had fluid in his left ear but it looked good so he got the second part of his H1N1 shot.
I told him that I would bring Eoghan back next week so we could move forward on the "sugar" highs and lows. It was funny the first thing he said well you will have to take him to the lab to get the 3 hour fasting gloucose tolerance test done. Not a problem it will be done.
So on the way home we took a detour and stopped in the Irish stores and picked up our rashers, sausages, black and white pudding Oh are we going to have a feast tomorrow morning.

To day is the last day of school until next year

Well today is the last day of school until next year. I will have to get into the holiday mode again. So there goes my quite days for over a week. In one way it will be good but I will probably be counting down the days until they go back to school.

News My sister and her other half Rick just bought their first house so congrats to them. May be now that they have lots of room I will be able to pawn off my crew on them. We will see.

Genetic testing and surgery

On Monday we went to see the genetic doctor.They are going ahead to check his gene's to see if anything shows up. Got the blood work done today so now we wait to see if anything shows up. They only thing she did make comment on is that Finnian's hands and feet are smaller than a child his age. What does that mean? we don't know yet.
Today we went to the ENT and with a bit of pushing on my part he is going to get new ear tubes, his adenoids rechecked and if any new tissue it will be removed and he is going to get his tonsils out. He wanted to do a sleep apnea study to see if his tonsils were causing an obstruction before he would remove them but we check him at home to see if he does have O2 destats during the night and at times he does but once you reposition him they will pick back up again. We have to get clearance from neuro and pulmo before the surgery and we also have to get an anesthesia consult. He will also be kept over night for observation which will be a first for us . He has had two prior tube placement surgries the last one they did remove the anenoids and he came home the same day. But his appointment for the surgery isn't until April 23rd 2010 so I have 4 more months of ear infections to deal with. I am not looking forward to that. The doctor only does surgery on Fridays and he is booked until then. They said they might be able to do the surgery if the doctor is availabe and its ok with ortho if he will have his hip surgery done before then. I am not going to hold my breath on that. He checked out his ears and he still has fluid in his left ear so when we go back to the peds on Christmas Eve we will see if he will get a clean bill of health on the ears if not it looks like we will be doing another course of antibotics.

Eoghans sugars have been bouncing all over the place again so when I am at the peds I willsee if I can get the papers to do the 3 hour gulcose test to see if he does have a "sugar" problem. It is never a dull moment in my house.

Christmas Card

Santa Clause

Well we went to see Santa Clause on Saturday. So we bundled up good just to go down the street. We just got outside the door and next thing Maura screams "Its snowing". It was just starting to make a few flurries. So we went off and down to the pharmacy to see jolly St.Nick. We got there and there was a long line so we just waited our turn.

So the kids got really nice gifts and it didn't cost anything. So I had my camera with me and got to take a picture of my gang with him. We had to open Finnian up so he wouldn't over heat thats why he is the only one with his jacket off. His suggle bag was also opened and tucked under him.

Prayers for Hudson

Please keep a little lad named Hudson in your prayers. He got rushed to hospital this morning via ambulance with breathing problems.

Christmas School Picture with Santa

Maura and Eoghan with Santa at school.

THe up coming appointments

I am getting a bit antsy with the up coming appointments and I don't know why. Its not like me to be like this. I have of course been looking up Finnian's symptoms and have come across a few things to ask at our next appointment the genetic appointment. For a while they were putting all of Finnian's issues on his stroke but they could never explain why he had cataracts. Every test that would say the reason he had cataracts came back normal. So that was always a mystery but his other issues were always said to be from the stroke. But over time one of his doctors said there is something else going on with him and then that's when we started looking for the answers to Finnian. May be we will get an answer and get told yes your son has .......... But you know it won't change Finnian it will just give us a better understanding of his condition. People have asked do you know what his life expectancy is? Well the answer is since we don't have a diagnoses on what his true "syndrome" is we don't know but because he is a bad epileptic he is at higher risk of SUDEP. So ever day we have with him even the bad ones is more time we get to spent with him. So maybe not having "name" for whats wrong with him is a blessing in disguise.

The vampire doctor

Well today I am off to see the vampire doctor. I have to go to the heamotologist and get my bloods checked again. I have alot of red blood cells so they are just keeping an eye on things. Its great at least now I only have to go every 6 months.
Eoghans bloods sugars were on the low side again this morning I think I should just bring him to the endocrinologist and see what they think. While looking up stuff I saw that A1C levels cannot say if someone is diabetic. But once diabetis is confirmed it is a good way of seeing how the blood sugars levels are. Joe is a type 2 diabetic and his A1C's levels are really great. Even his doctor has made a comment on how good they are.
Oh well until later

Yes he does have ear infections

Well since daddy was off today he got to go to the peds office with Finnian and Bonnie. I stayed a home and took the Christmas tree out of the box and set it up at the ssame time I did laundry.
Well it was over 3 hours later when they got home and the result was yes he does have 2 very nasty ears. So now he is on an antibotic to blast the bugger out. Oh just roll on the 22 of December so we can see about getting new tubes put in. As a child I suffered horrible with my ears, nose and throat until I got my tonsils out and Iwasn't sick for almost 6 years other than getting a head cold. You know its been two years since fFinnian got the g-tube and they have been the best winters so far other than the ears. Its been almost 2 years since his last tube placement and we have had a total 7 ear infections we had 3 since july.
Such a change in him already sice he got the antibotic in his system well at least he is not whining and crying. He is more back to his usual nature.
So if it is a good night tonight he will go to school tomorrow. I am looking to get more than 2 hours of sleep tonight. Since Friday I think I have gotten may be a total of 9.5 hours.

A rough day

Most kids can tell you when their ear hurts or any part of them but my poor lad cannot so we have to play 20 questions." Finnian does your head have an owie? does your ear have an owie? does your nose have an owie?" and the list goes on. So you are probably wondering how he communicates back well on a good day he will say "ya" or shake his head no but on a bad day when you hit on the problem spot he cries harder.
Well his ears are bothering him again and he keeps letting us know that his nose is bothering him too but even with making him comfortable he would still cry. Eoghan said "I bet he is wet that sounds like a wet nappy cry" Well he wasn't he was bone dry so alarm bells went off. We had finally hit upon the problem he couldn't pee. This has happened before so we have to push 20cc of water every 15 mins until he pees bit we relizaed he had not peed since early and his poor system couldn't hate any more fluids so I had to do the dirty deed and cath him. So as I am setting up to do the deed i am praying that he will pee but he doesn't. Just as Iam about ready to put the cath in Joe pipes up and says "have you done his before?" Yes once so I cath him and next thing there is urine flying all over the place. Well at least I got a good sample to take to the peds office. Final tally on the amount of urine 21oz . No wonder the child was uncomfortable he settled down after that. Can you blame him over 2.5 cups of urine.
He is still not himself we just have to get the tubes put back in again its not fair that he is so uncomfortable

Slippery little suckers

When it comes to using soft contact lenses you cannot be all thumbs. It wasn't too bad getting them out I thought for sure it would be a night mare but I was able to get the first one out on the 3rd try and the second lenses out on the first try.
Now getting them in without the sides curling up now that was another story. They also seem to dissappear in your hand when you put the solloution on them. I guess I just have to get used to them his hard lenses were blue so it was alot easier to see them in your hand.
THe best is they stay on his eye balls the right way i guess its because they cover more of his eye than the hard lenses which only covered the pupil. No more do we see the blue dot drifting on to the white part of his eye.
So the new lenses are slippery little suckers when trying to get them in and at the same time you are trying to hold him down and keep his eye opened and praying you dont drop it because if you do its invisable and not as easily found as the hard lenses

New eyes

Well today he got his new eyes well his new contact lenses. The reason he wears contact lenses is he had bilateral catracts removed and they coul not implant artifical lenses. We got soft lenses this time so they are a little bit tricky to get out. He had hard lenses before and we had a little plunger thingy that would pluck the lense out. They are expensive little buggers $200 bucks each so he better not lose these suckers. He doesn't think glasses would be good for him as they would be very thick lenses and its only now his nose bridge is starting to fill in and his prescription would be even higher in glasses.
Lets put it like this Maura's script is +1.75, Eoghans is + 3.75 in glasses and Finnian's contact script is +23.00 so if he had glasses it would be even higher.
The poor lad his ear are causeing problems and it looks like I will have to take him to the doc;s tomorrow to get something a little stronger than the amoxiciallian that I have. His ENT appointment was changed so we have to wait another week to see him. Congrats Doctor W. on the new arrival.

Eoghan's biopsy results

Well I got the call after playing a bit of phone tag with Dr.K. All he wanted to know whats been going on between biopsy #2 and #3. When you here that you know its either great news or it's not. So I said "why" he told me never mind why just answer the question. So being my usual self told him about the fights to get Eoghan to take his meds and that he he has been cheating a bit. So he said" well that makes sense now". So the result is first biopsy was bad the second one great and the third not as bad as the first one but nowhere like the second one. So we have 6 mths until the next one so we have to pull up the socks and tighten the belt over the things he eats. So it is back to being very strict with every morsel of food that goes past his lips.
You know I cannot blame Eoghan for it he is after all a child I just have to be more watchful and go back to keeping a food log and I will make him take his meds in front of me to make sure that they have gone down. I sure hope the next biposy gives us better results.

Dear Finnian

Today it is the 9th of December 2009 and it was on the 9th of December 2004 that we were told you would be different. How much we have grown and how much we have come to accept since that dreaded day 5 years ago.

Last night love you were not youself you were having alot of little seizures but everytime I figured it was time to put a stop to those buggers they would stop and you would give me a beautiful smile. How i love the time we spent together at night alone just you and me my little man.This morning it was rough and when I looked at you all i was having were flashbacks from September of last year when you ended up in the ICU on a vent and in a medically induced coma. Boy did I spring into action and thankfully we got the blasted seizure shut down. So I called the bus driver and told him you wouldn't be going to school. So you got to hang out on the couch in your jammies today. i know it was the nasty weather we got that brought out the seizures. It always happens when the weather changes and it rains very heavy in a short time.

You have been a true little warrior this year fighting against the seizure monster. We have had a few (5) hospital stays this year which isn't too bad. We have been going to a genetic doctor she is determined to figure you out and she has run alot of tests which have all come back normal.She keeps saying that you have an underlying condition but we haven't found it yet. Having a name for whats wrong with you will not change who you are my little man. You will always be my Finnian the teacher and sharer just like what your name means.
We even went on vacation this year to Myrtle Beach it was a lovely week. Granted you didn't get to do all the cool things that Eoghan and Maura did but it was nice to walk along the beach with you after I dragged you backwards in your chair through the soft sand. But at the same time you loved it.
People always wonder how we cope with having a child with diasbilites to be honest some times its rough but all you have to do is give us that beautiful smile and we forget. We love you for who you are Our Finnian.
Love Mammy

Happy Birthday Tony

Well Happy Birthday to Tony Cosgrove. Here he is with my crew.

Maura

Well I finally took the Christmas pictures

Finnian

Maura

Eoghan

Eoghan, Maura & Finnian

School pictures

Well the kids got their school pictures. Maura's is really nice and Eoghans well lets just say they gave him the wrong background and the picture is horrible. Do you think I would chose a purple background for my son and a blue one for his sister. So I called up and complained so he can get it retaken at school next week. They would have been able to change the colour on the background if I was happy with the picture. Well I am not.
Will post Maur's picture later

Today was a busy day

Well Joe went to the urologist and Finnian had his eye exam. Well he is getting new contact lenses and the litle buggers are pretty pricey. $200 buck a pop and yes he need one for each eye. The new thing is we have to pay for the little buggers first and then wait for the insurance to pay us back. Bummer. He also has to have another ERG done on his eyes not looking forward to that.
Then on the way home Finnian had a seizure one I haven't seen in almost 2 years. Bonnie was shocked because she has never seen one like that before. I was driving when it happened and when we stopped at a red light Bonnie reached back and tipped his head forward because it was starting to choke on his saliva. We got home and he was still in it so I just parked the car adn tipped the seat back and gave him a diastat and he came out of it. So when I got upstairs I called the neuro's office to ask about his MRI report. Got told then cannot give out any resutls over the phone. So I told her all I wanted to know if there was fluid present in his ears thats all I needed to know because he was just after having a bad seizure that I haven't seen in along time that usually went hand in hand with his ears.So the nurse called back and I told her about the seizure and I haven't seen them since he went on the dredded klonopin but they usuall ran with his ears. I wanted to know if fluid was present so I would be able to go to the ENT and get new tube put in. He has fluid present in both ears and his sinuses showed thickened fluid. So now we have an appointment with the ENT and he will need to get new tubes put in his ears and I am gong to request that his tonsils be removed as they massive and he has been drooling like a tap running. The peds fear is he will lose his swallowing ability.
So its never a dull moment in my house

Joe

Well he went to the urologist with my mother in tow well more at my asking because I couldn't go with him as Finny had to go to the eye doc. I knew my mom would ask all the questions and find out everything. Joe is a typical man and would come home and say " oh yeah everything is ok". Well the good new is that his stons are small and he should pass them all with some minor pain but not need any other medical intervention. He had to go and get a KUB x-ray taken he also signed the relase so the doc could get the CT report and he just has to go back to him the end of January. Guess what I won't be able to go with him either on that day as FInny has to go for x-rays and see the ortho doc nearly at the same time. So it looks like my mom will be going with him again.

Another kidney stone attack and a phone call

Well Joe called me this norning at about 9:15am saying he was coming home from work that he had the pain again but it was now on his left side. So when he came home you just knew by looking at him he was in pain. Of course he comes and complains to me about the pain and all I could say it wasn't really nice but " Just take your pain med and drink plenty I cannot piss it out for you" of course he just laughed. All summer I had been harping at Joe that he wasn't drinking enough water while out delivering the mail. Now he said he knows the difference.
Well the phone call was about Eoghans GI scope with biopsy and of course I wasn't at home. So all Joe said what time does he have to be there at and he is allergic to eggs. But not to worry I would be able to answer any other questions tomorrow. So we have an early start as Eoghan has to be down there at 7:30 am. I am glad we have an early appointment. I also have to swing by the nutritionist's office and pick up the new formula recipy for Finnian. THey have to increase his formula in order to incease his calories. He has a nice gut but skinny arms and legs and he has been the same weight for about 9 mths . I am not to worried as he is growing and his blood work is coming back good. But I guess being that he is almost 5 years and only 31lbs they want to fatten him up a bit. Will update tomorrow after the scope

Update on Joe,Finnian and Eoghan oh yeah on Maura too

Let's start first with Miss Maurs well her tooth on the top is finally wiggling to come out. I just hope it doesn't come out at school tomorrow.
Joe went back to his regular doc today and everything from his blood work was great. His A1C's were bloody fantastic and so was his cholesterol. She said she has people who are not diabetic have higher A1C's than his. Then she pulled up his CAT scan on the computer and all she was able to tell him that he would become great friends with the urologist with all the stones he has. But if he can tweak his diet like he has been able to help control his diabetes he shouldn't have any problems.
Finnian got his "short legs" as we call them his AFO's today. They fit really nice but now you can see the difference in his legs. He has a really skinny leg and more normal leg but hey if there was a nobby knees contest he would win it hands down. We got ones with designs on them this time they are blue with construction thingy's on them. Only one more appointment for him this week his eye check up.That will be fun.
Now Eoghan, well he has to go for another GI scope with biopsy to check his EE. The lady called and asked if the 1oth was good for us. I just told her you just let me know when to be there and we will. So the next thing she said was " well I have a cancellation on the 3rd do you want to take it? " I told her fine we will be there. So now we just have to wait for them to call to confirm the time of his endoscope. That's alway's the fun part.
So thats all for today

Sometimes you just wonder

Its funny I am not Irish enough to belong, I am not American enough to be taken serious and there isn't a scrap of Italian in me to make Joes family happy.

Whats a holiday in our house with out someone being sick

Well this morning Joe went to the ER with my Dad in tow. I don't know how come men always want someone with him. Well my dad has been giving me updates and the results Joe has kidney stones in both kidneys. Well it looks like his diet will have to change.


So Happy Thanksgiving everyone

Eoghan's GI appointment

Well Eoghan had to go back and see the GI doc today. He was very happy with his weight and his height. Upon checking out (feeling ) around his tummy he said " Someone isn't take his meds all the time" Eoghan got that sly look in his face and didn't say anything. He has to go for another GI scope with biopsy to check to see how is Eosinophilic levels are in his tummy. So Deb will call and let us know when .

He was saying that there are so many children being diagnosed with EE. He now has a few patients with it and even had a patient coming in for a second opinion about the diagnoses. He was saying its harder on the older kids and it also effects them emotionally. Well hey if you have been eating bread for 9 years and all of a sudden you are told all you can have is the special formula and basically lettuce, cucumbers, carrots and ice its hard. He said depending on the how high the levels of the eosinophillic cells are is how he bases his form of therapy. With Eoghan we got the food allergy tests done once he tested positive and started him on prevacid and flovent. Once we got the results of the food allergies we had to take away anything higher than a 2 and that was alot. BUt just by doing that it made a huge improvment. Believe me you learn very quickly to scan through the ingredients on all foods. It is really an eye opener as to how many things have soy in them nearly everything.But we are doing it and for us it is working.

Some children aren't as lucky and can only take the formula and have dum dum

Finnian's Rainbow

For along time I have been saying I am going to do just a Finnian blog well I finally started it. Its starts from the beginning the day I found out that God had chosen a different path for our Finnian to follow. Here is the link www.finniansrainbow.blogspot.com I have also added it under Finnnian's friends to the side. Its going to take time to get it all caught up well I basically have 5 years of catching up to do. But I will. Not to worry you can always catch updates here too but the main focus here on this blog will be the whole family not just Finnian.
So if you want to see how our journey began please visit Finnian's Rainbow

New mantra

As a parent with a child with many issues the hardest one being his uncontrolled seizures. We all spent hours pouring over any bit or scrap of information we can get on understanding this disorder. We learn how to figure out the meds, the doses, the side effects that our child shows not just the ones on every bit of litature on the drug. Do we get so wrappped up in all of this medical jargon? Hell yes we do but we do it for our child. We all get to a point where we wonder are we doing the right thing pushing our child full of crap that years form now they don't know if it will have other effects on them. We try to figure out if we change them from one benzo drug to another will it be the right thing. Or should see about removing half of the crap he is on and see about starting from the begining all over again. We get questioned because we are only the parents and not medical professionals and what do we know. We know what our child was like before we added that we know what he/she was like before the bloody seizure monster hit.

Through all of this people want to know how are we handling it? I will be honest some days its not easy and you question yourself. Am I doing the right thing , may be I should try the other drug or may be they are right and I should increase but I know this, that and the other will appear and right now I am not ready to handle that.But in all of it there are a few lines of a prayer that helps me keep my sanity now mind you I am not the holy Catholic even though I am Irish. But here it is

God grant me the Serenity to accept the things I cannot change ( I cannot change Finnian you decided that this was the life he was ment to have)
Courage to change the things I can ( to make people to understand that inability to accept him for who he is , is the biggest disability not the disabilities he has)
and the Wisdom to know the difference ( I cannot make some one accept him just maybe make them understand)

We are home

Well we came home after another stay in the hospital. The nasty seizures we keep trying to get on EEG don't happen when hooked up but of course happen when not. We did get an MRI done while we were in the hospital after a bit of arm twisting on my part. They had put him in for an MRI the guy from anesthesia came and then the next morning no word of it.They decided that he didn't need one but we would have to wait until Feb to get one done as an out patient. I was a bit peeved. They said when we were at the doc office in September they would order one but found out that the order wasn't put in until the end of October. So the Lioness came out in me and everyone was very surprised. I just said you want to wait until he is more stable the kid hasn't been stable since April and now you want to wait until Feb to do one and oh yeah I'm not agreeing to put him on the new med, my kid has brain issues and its not important well I will have to see about that. Not only did he get the MRI which would usually run about 45 mins to 1 hour he was in the MRI for about 2 hours there were additional test added.I am still holding out on putting him on the medication because I cannot see changing one benzo for another one and still keeping him on all the crap he is on. I gave the doc the link to some of his seizure videos and I asked if she had seen them. She said " Oh yeah the ones on seizure tracker" I said yes thats what Klonopin gave him but at least I know how to treat them. Lets put it like this she didn't know what to say.
On data I was able to find on the wonderful net I got them to agree to reduce his keppra down to see if we could get more control well now we wait and see if it will work.The one thing I did get was for them to finally say "Yes he does have Lennox-Gasteaut syndrome" Its not a great diagnoses its a very hard to treat form of epilepsy and some times medication resistance. I have always known that we would always be chasing after his bloody seizures. Talk about a child keeping you on your toes.

I don't know..............................

You know I did cave in and I did increase his meds just a little not to what they wanted I just went 1/2 way. Did it help not, it brought out even more of those little monsters. They are showing up in different ways and at first you don't , well I didn't, think seizure, not until you keep seeing them and then it hits you like a slap in the face. Then you start to think back to when you saw this first was it before or after then you start to think of the other little things, little twitches, the stiffing of an arm or leg or both. Then you wonder oh well I did give him his meds a little off schedule may be that's what but when you keep seeing them then you know.

I do know that our Finnian will always be fighting the seizure monster but I guess I am like everyone that a pill might cure him. The thing is I think he is on too much stuff yeah I do know it all works for a while and then stops. I feel like I am making my child a junkie because I am always shoving some kink of med down his tube or up his butt to deal with the monsters and I hate doing it but I have to.
With the latest increase in the monsters they are talking about bringing him in and weaning him off something. Normally I would wean on and off but this time they want to wean him off in the hospital I guess they are going to do it quick and they want to be prepared just in case of status. I don' know I am torn am I doing the right thing? I guess we will find out because something has to change.
He woke up screaming at 4:02 am this morning and had another dirty nappy. Its something that has been happening the past few days that he loses his bowel control with the nasty buggers. Watch they will bring him into the hospital and he won't have of do the crap he has been doing at home. It never fails. I am not a paranoid idiot I am just a Mother with her child's best interests at heart.

First report cards of the 2009/2010 school year.

Well Miss Maurs got first honors and she also got an A in conduct. That is very impressive as anyone passing in the yard probably always hears me say "Maura" , "Maura will you stop" , " Maura stop jumping on the bed" its always Maura's name that is getting yelled in the house.
Eoghan got second honors he also got an A in conduct but he always does he is the quite one. Only for that one bad science test when his sugars were whacky and his handwriting he too would have gotten first honors. But I am so happy that he got second honors. He told me he will try harder so the next time he will get first honors. I told him just do your best but we do have to improve the handwriting.
So I am so proud of them

Sleepy Satruday

Well today was just one of thoes days that we didn't even get dressed and hung out on our jammies all day. Well it was raining in the morning and it felt cold so we just deciced to hang out and not do anything at all. Other than feeding the kids and changing Finny thats all I did. No tiding up , no cleaning, no nothing.
I think we all need a day like that every now and again just a day to unwind.But for tomorrow I already have plans. Got to do laundry, go to Costco's and get the kids uniforms ready for Monday morning.
So today was a sleepy Saturday

What does your name mean?

Your name is something that identifies you as a person. We all have poured over the baby name books trying to figure out what we will name our bundle of joy when we figure out the sex of the unborn child or we might have a few on a list and wait to see the child and figure out what name will suit them the best.
Well my hubby has an Italian last name so I wanted Irish first names for my kids he didn't mind. Eoghan was called after his grandfathers, Maura was names for my grandmothers and my twin sisters and then when it was time for our Finnian we didn't know for a long time if he was a boy or girl so we had a list. Boys names Declan Thomas, Finnian James and Rory Michael. For a girl Aoife Marie, Dervla Ann and Rory Michelle. Well Aoife and Rory got taken off the list because others in the family named their children thoes names. So if it was a girl it would be Dervla so for a boy it would be either Declan or Finnian. Well we found out that he was all boy so the girls name got sent to the cutting room floor. So Joe got to decide what name our little man would be called Finnian James.
There really isn't any translation for Finnian but its know as the "fair one" but the best is that Saint Finnian of Clonard who is an Irish saint is the patron saint of Teaching/Sharing.
So I do think our son was well named he is teaching us so much and through him we are able to share our journey of having a child with medical issues.
So what does your name mean?

My wonderful leak

Well its just been a week since wednesday sice I told the super about the leak and finally today they are doing something about it. The best is its a bloody hot water leak again. It was funny I went upstairs to see if anyone had come to check it out and I said to them just tell him its a hot water leak. They were amazed because he had just told them the same thing. How I knew is I have a towel down on the floor in the bathroom by the sink where the water is dripping and when I went to ring it out it was warm.
Thanksgiving is just next week and its my turn to cook and I hope everything will be fixed and put back to normal by then. I sure as hell don't want people comming in and a hole in my ceiling or that then need an umbrella to go to the bathroom. All that was bothering him is that I have colours on the walls adn he can only paint them the off white I told him not to worry I have plenty of paint in the closet for him to put up. Note I said for him to paint I will be damed if I am going to paint again. If he had gone and found the leak last week when I told him it would have only been just a scrape and slap up a bit of paint but not no way he's going to fix it and I will not sign the papers for him untill its finished the right way and he won't get paid. I know I am being a bit bitchy about it but I am allergic to mold and so is Eoghan but its my small man I am really worried about the last thing I need is for crap to get into his chest.

Today I said NO

Can you believe it I told the doctor today NO. They wanted to increase his Banzel again don't get me wrong its is a good drug but its not the answer for Finnian. IF it was we wouldn't have the night time screaming episodes and his "shouting" seizures would not be comming every 18days instead of every 6-8 weeks.
When we started Banzel we were supposed to wean him down or even off one of the other meds he is on but that hasn't happened. Instead all I hear is increase, increas, increase no decrease ever mentioned.
Like my God he is not even 5 years old and he is on 4 yes 4 seizure meds the keto diet and we have trouble getting him to gain weight and he is also on 2 supplememts along with the other crap the singulair, pulimcort xopenex when needed diastat when needed and sometimes we have to give him extra klonopin depending on the type of seizure we have to shut down. What he is on is not the right ones but what do we change. I am opened to revisit Topomax now we have the feeding tube. I do not want to revisit phenobarbital that was a night mare I would prefer to forget.The klonopin is a love hate thing but I would like to see it gone from his daily regime I just hope the withdrawl will be easier than pheno. THe Keppra is a med I never had problems increasing but I think its comming to the end of the working stage. Oh I don't know.
We are going back to the genetic doc in December and if she cannot think of anything else to test him for I think we will go ahead with the muscle biopsy and get things either figured out or ruled out.
Fingers crossed that we can get in for the MRI soon and maybe that will show something new or maybe answers.
Oh today we went and got Finnian casted for new AFO's they should be ready in 2 weeks we went back with the solid ones again so we will see.

Early morning

Well I have been up since just after 4am. Yup he had another screaming/cyring session that lasted for about 2 minutes+. Joe picked him up and he nearly jumped out of Joes's arms. He was compleatly tonic in his legs and his arms were contracted in against his body. Joe had trouble carrying him. He is still very whiney and not himself he did have some congestion in his right lung but a blast of xopenex via the neb shifted it. He probably aspirated his own saliva when he was crying. He keeps rubbing his head like we would do when we have a headache and when I rub his head for him he totally relaxes.
So I guess today is going to be a doozy

The joys of living in an apatrment

Well we have a leak and the best part about living in an apartment is I don't have to pay for it to be repaired. But the down side is the waiting to get it repaired. Now the bloody thing has gotten bigger and I am still waiting. It was supposed to be fixed yesterday but the guys never showed so we went to the super and he said tomorrow but the lady upstairs over me has to go to the hospital for some tests so we will now have to wait until Friday. They couldn't come today because it was a holiday that was just B.S. because all the stores are opened even the home improvment stores.
For now we cannot use the light in our bathroom until the leak is fixed because the water drips down from the light fixutre. So for now all we can use is the little night light well its better than no light. So if they went and checked it out when I first told them about it they would only have to fix the wall in my living room but now they have to fix the ceiling and the wall in the living room and the ceiling and the wall in the bathroom. Not just in my apartment but also the ladies up over me and they also have to fix her hallway by the bathroom. Now I am going to make sure that they replace everything not just scrape it down and plaster over it. I do not need mold growing on the walls I know its not good for anyone but for me its horrible because I am allergic to mold and I lose my voice right away. I am a little froggy but I keep spraying a mold and mildew remover on it to prevent and growth. Never mind me the last thing I need is for Finnian to have any reactions to it

Not working ???????

This evening as Finnian was wrestling the pillow we heard the God awful shout. A fec.... seizure. So I yelled at Joe to get his bag as I watched the colour drain from my wee mans face and his lips turn blue. While waiting for his bag I start doing compressions and the next thing he takes in a deep breath. His colour tuns back to normal and he starts wrestling the pillow again.
No he did not get any rescue meds and by the time I checked his O2 was at normal levels. Well I guess the increase in the Banzel is not working on thoes seizures. Whats kinda pissing me off is now there was only 18 days between this one and the last one. Ok the one tonight was a very mild one but now we have gotten past the 3 hour mark and we haven't had another one so now we wait and see at the 6 hour mark. So tonight me and my lad are camping out on the couch until we hit the 6 hour mark. Then maybe I will put him in to bed and put all his gear in with him just to be on the safe side.
Its 1am and he is still up and all he wants to do is play so we know tomorrow all he will do at school is probably sleep. I just wish we could figure out this "seizure" and get him on the right meds. I should have known that we would probably see one of these because on Saturday he was having problems not peeing and I nearly catherized him, but then on Sunday its seemed like he couldn't stop going.
Blasted seizures

Maclaren recall

There has been a huge recall on Maclaren strollers that were made since 1999. The company will issue a statment on Tueaday. I of course could not believe it there is a problem with the hinges that children are getting their fingers hurt, smashed and even have been a few chopped off. So they are going to be giving out some kind of hinge covers to stop this from happening. I wonder if Finnians special need Maclaren will fall in to this catagory it basically has the same hinge mechanisim.
Its funny I always had the kids stand clear while I would be opening or closing the buggy because I was always afraid that they might get their fingers pinched. Its the same as the doors I even still have the bumper guards on them. I still even have the child locks on the cabinets even though they an open them. I guess its just peace of mind.
I have always loves my Maclaren buggy and for the last 10 years have used a Maclaren buggy. I got the special need buggy for Finnian because our elavator went on the blink and to be honest it was not easy bringing 3 kids and a wheelchair up and down 4 flights of stairs. Evne now he uses his buggy for going to school. He gets put into a carseat on the bus so its just someting for getting to the bus and getting off the bus. He has a chair that he uses at school so he really just needs something to nip back and forth to therapy in so it works. It would be great if they could make the special needs buggy so that it would recline back just a little it would then be the bee knees.

Too much crap

I always say I am going to go through everything and only keep what I need but it never happens and I end up with piles of crap stacked up all over the place. So today I decided to tackle our bedroom and so far I have gone though so much. I have thrown out well not thrown out but put in a bag a whole load of clothes I have no idea why I was keeping them they don't fit. Why do I have comforters stuffed in to pillow cases and put up on the top shelf in the closet? If I wanted to use them they wouldn't be in pillow cases on the top shelf I would be using them on the beds.Then I always wondered why I could never find the pillow cases duh they are on the top shelf with a comforter stuffed in it. Why do we always save the good sheet from a set when we know we will probably never uses it because its not a com pleat set.

I don't have the room to keep it so out of my house it will go. I don't need it so it is all being added to the pile to be donated. We live in a very large apartment but when you keep everything its not very large anymore. There are 5 of us living here and we all need our own space for all of our crap. Then add all of Finnian's supplies that we get delivered monthly I need place to store all of them. We have gotten told by family "you need to move into a bigger apartment or move into a house" First off we don't have the money for a down payment on a house and secondly if I moved into a bigger apartment I would just be getting another bedroom and people would still be complaining. So I am just going to weed out all the crap I don't need and we will fit just fine.
So my new motto is "don't use, don't need , recycle" and hopefully I can downsize the amount of crap I have.

Saturday

Well today myself and my side kick went to an epilepsy conference. This one was at Columbia and there were speakers form Cornell, Montifiore, another hospital in Long Island and Columbia.
It was a very nice day out and Finnian was very well behaved well he slept through alot of it or maybe prentended. At one time I gave him a toy and of course he started brushing it back and forth accross his teeth and it was making very loud squeaking noise and I told him to stop and he told me as clear as day "NO" everyone started laughing and of course he thought that was so funny and had to join in.
I didn't really learn alot because I have heard it all before. The parent to parent talk was interesting. I even got up and told Finnians story. All everyone wanted to know "how does his siblings treat him". You know its not something I would normally think of but Eoghan knows that he had a stroke and that he would be different and Maura just thinks he is supposed to be baby like because he is Finnian. She knows that her friends younger siblings are not like her brother but they are not Finnian. They also wanted to know what was their reaction when he had a seizure. Well to be honest now all they do is fight over who will get the camera and who gets to turn on the oxygen machein when he has a shout seizure. Its something that they are used to so it doesn't phase them any more. All they want to know does he have to go to the hospital so they can have a sleep over at Nannys house.
IF you get the Vigabatrine here in the US via the Share you will get a letter to let you know you have 3 weeks to get an ERG done and you have to get them done every 3 mths in order to keep getting the drug. But for us its not too bad I guess in some ways because Finnian is legally blind and most times doesn't react to light. Well from his stroke his right occipctpal lobe was basically shot and his left occipctial lobe is now a hot spot for seizures and they have done alot of damage so his vision processing center in his brain doesn't work even though his eyes are with out the lenses due to the catracts are perfect. We don't even put his contact lenses in any more because he keeps popping out the right lense we just put his sun glasses on when he goes out side.

Going to try a new type of button

Well I was right he can do with a shorter button and we are going to try an AMT mini one. IT is Mic-key extension set compatitable. The nurse said alot of people have been complaining about the ballons on the type we are using. So we will give the new one a shot and see what happens. I told her that if we were having trouble with granulation issues there wouldn't be a problem with us switching back aand the answer was no problem.
So she is putting in the order for the new button with a second one for back up and extension sets. We don't have to change his button until we either have a problem with the balloon or its time to put in a new one. These new buttons are a much flatter and they lay closer to the skin so it hopefully will be alot easier on him when he lies on his belly. They also have a longer life so it means they should not have to be changed as often. We were changing his every 2 mths but we were told with the new one it could last up to six mths.
So we will see
Hi Lori and thanks for seeing us on such short notice

Up date on the button

No the new one didn't fall out "yet". I called the NP in the surgical department and we have an appointment to see her on Friday. She will check him out to see if he needs a shorter one. She thinks its because we have to put the max of water into the balloon and they are not as stable so they pop. Yes we only put distilled water in the balloon so its not that. Well its been a year since we saw them in that department. We were there right before Laura retired. She was great so relaxed and told me "don't worry there is only one place for it to go right into his tummy" I remember the first time I changed the button I just followed the steps and one two three I had done it. THanks to Laura and her confidence. So on friday we will meet Lori for the first time.
I also called and got appointments for the boys for their orthoics thats next week and I also called and go another appointment for the genetic doc for Finny. Her first available appointmnet is Dec 21st so I took it. Don't know if she has found anything but it was the neuro department that keep asking when was my next appointment. Maybe she has some answers but thne again who knows. Finnian is one of thoes cases that he is such a puzzle and nothing fits. Haven heard anything about his MRI they said it could take up to 3 mths since they have to knock him out to do it. I hope we hear soon .
Maura came home with the papers to get the H1N1 vaccine at school well so did Eoghan but he cannot get it. So I gave permission for her to get the shot only not the internasal vaccine. I don't need her coming home slobbering all over Finnian and passing on the virus. Haven't heard yet when they will get vaccinated.
So thats it

It fell out...........

THis morning after Bonnie Finnian's nurse came in I was telling her that I think its time to change his "belly button" again. We have been having some problems with the balloon on the tube. She went in to Finnian and all I heard "I hope you have a spare because this one fell out" Of course I take off in and sure enough there it was in the bed beside him. There was basically no water in the balloon. I had called the company to see if there was an issue with the button but they are going to send me a replacement and aslo a kit so I can send the defunk one back. A very important thing is when you change a button make sure you keep the box as they want to know what the lot number of the product is so they can see if there is a problem with a certain batch of buttons.
I had a spare so Finnian is all back together again. We are going to see how long this one lasts the last one was only in for 6.5 weeks. So now we just have to wait and see what happens with his one maybe we will have to change to a different brand.

Epilepsy Awarness Month

November is Epilepsy Awareness month so please wear a purple ribbon to show your support for all the children and adults that have epilepsy.
Most people don't understand what epilepsy is and how it effects the child/person. We have to educate people.

photo studio picture

Every year they give a special for Halloween . $2 for a 4x6 picture. I know I could print it for less at home or some where else but I wouldn't have the backround.

Happy Halloween

This is a neighbour of my Moms Eric

Finny getting ready we just stuck his legs in to Eoghans old wellies

Outside looking dapper

Eoghan just wants to go and get candy thats why no smile

My 3 Kitty Cats

Princess Witch Maura with her magic broom

Well we went trick or treating and they got lots of sweets. They have already been warned they can only have what Mammy considers a few. Not what they think is a few( at least half )

The devastation on Bainbridge Ave

This used to be Dunkin Donuts

Fire tucks, ambulances, TV reporters................

A big fire happened just around the corner form us early this morning. We can still smell the smoke when we open our door and will probably smell it for a few days. 7 shops are compleatly destroyed and 4 i think have some damage from the fire and alot of water damage. Then about 4 more have smoke damage and possible water damage.

Its sad as one of the stores had a fire in it about 3 mths ago and was all ready to open on Monday now there is no roof and everything is destroyed. the fire seems to have started in the shops around the corner and spread.

My Dad was out with some of his buddies and a reporter asked them about the fire. Lets put it like this for all who know my dad he's not a man of many words with people he doesn't know so when asked about the fire he replied "Níl aon focail agam" She looked at him and then at his buddies who looked at each other and started laughing. The poor reporter not knowing what my Dad had said left. No he didn't curse or say anything bad what it means " I have nothing to say" Thats one way to get away from reporters.
So thats the news from Bainbridge Ave here in the Bronx

Halloween Eve

The kids are already planning and trying to remember where they got the "good" candy last year. I can't even remember what I had for breakfast never mind where the "good " candy was .
Maura is so funny she said" I don't know how Iam going to do it Mam, I will have my pumpkin, my witches broom but I don't have another hand to carry Finny's goodie bag" Our Maurs always makes sure that Finnian is included in trick or treating. Last year she told a man "hey hang on I need one for my brother" He asked her where is her brother and she said "do you see my Mammy over there well by little brother is with her he cannot come here because he is in a wheelchair" The man must have liked her because she came back with loads of candy.They have their plans made we leave the house at 3 p.m. and go up and down the avenue. They have to be home at 5 p.m I don't know why but thats their plans. Then at 6p.m they will go around the house they know every door that they will get candy at.
They hope the photo studio down the street will be doing the Halloween pictures again this year so do I. Last year we got a nice photo of the three of them together.
This year Eoghan is being a Stars Wars character , Maura is being a Princess Witch and our Finnian is a Clown.
So until tomorrow

Joe

My dear wonderful husband was shocked at how fast the day went by. He was at 3 yes 3 different doctors offices today. First thing this mornig he took Maura to the peds office and got out of there very quickly. Then he had lunch and pottered about on the computer for a bit and then he went to see his Endo doc. She is pleased with him over all and gave him a script to get fasting blood levels done. Well his appointment was at 1:45pm so there is no way he could have waited until then. She didn't have either flu shots neither did the peds office this morning. So I knew that where Eoghan goes to the allergy doc they had the flu shots so I told him just go and get your physical done there and they will give you your shots they also see peds and adults in that office. So he just walked in and they took him. He got all of his regular blood work done, EKG, and he only got the H1N1 flu shot they were out of the regular flu shot but will have some in again next week. He has to go back to get his PPD done on Thursday evening so they can read it on Saturday. Over all they were impressed with his health being that he is a type 2 diabetic. pending blood work results.
So Joe is the only one in our house that has gotten the H1N1 shot and Finnian is the only one that has gotten the regular flu shot.
He was shocked and amazed that the day had gone by so fast. I told him " see what you miss when you go to work every day" His reply " I will go to work every day its much easier delivering the mail than what I did today"
To to all the stay at home Mom's and Dad's my husband tips his hat to all of us and to all the Moms and Dads that work he says " lets keep bringing home thoes pay cheques"

Well the peds said she has............

Joe is off today so I told him to pop over to the docs office with her and see if they have the flu shots. But no they didn't they only have the mist spray for both. So no good for either of them they need the shots.
Well anyway they got to see Dr.Q and one look at Maura and even he said someone looks sick. He checked out her ears and throat and did a swab test to see if she has strep and right away it changes colours. The tympaney test cam back positive for fluid in the ear. So now she has been warned to stay away from Finny for another 24 hours until her meds kick in. She is still running a low grade temp but doing good over all.
Eoghan was fine this morning and went off to school. I did call the school in the morning to let them know Maura would not be in and I did call them back to ket them know she does have strep.
Joe is gone off now to see his endo doc we will see what she has to say about his sugar levels. He said he will ask her about Eoghan and see what she thinks. Over all Joes levels have been good he doesn't have the same lows that Eoghan is having and they both eat the same foods well we all do.
Thats all for now folks

2 sleepless nights and now............

Yup some bug has attached them selves on to Maura. I knew as soon as I saw her comming out of school she looked a little off. She tells me her head hurts by the time we got home around the block I was soaked but she was ok because she had her rain jacket on. Came home and dropped off the bookbags and we took off down the street to pick up Finnians meds. Came home and got her all set up and she tells me her throat hurts. took her temp and it wasn't bad 100.3 so I told her to hop into bed and maybe she might feel better.
Then she is asleep and all of a sudden Eoghan tells me "my belly hurts and every time I burp or fart I feel better" All that was going through my head shit now him too. Well he finally threw up and feels much better but I don't know will have to wait and see how he is tomorrow.
Maura will not be going to school as I took a look at her throat and her tonsils are yucky looking and also one of her ears doesn't look great either so it will be off to the peds with her and see whats cooking. I am trying to keep her away from Finnian so he doesnt' catch what ever she has. I am tired have been up the last 2 night with Finnian don't know whats going on with him but he seems to have his days and nights mixed up again I hate when that happens. Joe is off tomorrow so he can stay up with Finny I need my beauty rest.
Oh bugs , bugs , go away I don't kneed you in my house.