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