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.

last night

Well last night me and my side kick had a camp out on the sofa. He just wasn't himself he was whining and crying nearly every hour. You all know the poor pity full whine. But with the weather today it now makes total sense as to why he had a bad night. The rain always does it to him. He did go to school today but I know he will spend most of it sleeping and his nurse will have him on her lap cuddling him.He love it when she does this I say hes wise beyond his years because he likes it when he has his head on her "pillows"..
will let you know how the rest of his day went later

I guess I spoke too soon

He is not himself and the jitteryness ( if thats a word) is getting more noticable. As usual he is a bit cranky his ketones are in a good range so its not that he is covering the right side of his head with his hand looked in his ear but I cannot see anything checked his throat but cannot see anything only two huge pink tonsils. Is it seizures or does he have a headache? How do I get a child who is non verbal and with the mental capacity of a 18mth old to tell me? At times times you would wish that Sookie Stackhouse was your neighbour so she could pop in and listen to his thoughts when he wasn't feeling good and let you know whats going on inside he head.
The other lad checked his sugars almost 2 hours after his dinner and the thingy said 50 so I told him go get a ricekrispy snack and I will check you again it was better it came up to 72 not great but better. Just wished I could figure out whats going on with him.Last week his numbers were high and now this week they are low but they still say he is not diabetic and just watch him but something is making his sugars go whacky.
Oh well lets wait and see what tomorrow will bring

Monday, Monday.........

Well it started with screaming at Oh wow I cannot remember the time, but it was early probably about 6ish. THen he stopped. Then he started crying and man did I know why it was a gas mask I needed and it was everywhere. SO cleaned him up and not even 10 minutes later he was crying again and I ended up I had to strip the bed. No this time there was a big wet ring in the bed. So got him up and showered and dressed and then took the other to school. He was very stiff almost spastic like. Came home and gave him his meds and hooked him up to a feed and he went off to sleep. He slept for 4.5 hours he is in better form now but still not 100%. Of course I didn't think to video him this morning when he was screeming. So we will see what tonight will bring and no he is not sick.

My day out

Well I was up bright and early and on the subway going down to the city around 7:15 am. Its the first time in along time that I have done that on my own I usually have my side kick with me. It was nice to walk in the city early in the morning the streets were quiet and not the usual mass of traffic and yellow cabs flying up and down the streets.
Got to the confrence and signed in.Got to cruise around the information tables and pick up some information.The one main topics were Generic VS brand name which was very interesting. Anyone with a child on any drug not just seizure meds this is always a hot topic. I even know it myself as one brand of generic Keppra doesn't work all that well on Finnian as the others or the brand name. Then it was broken down in to breakout sessions where they were covering various topics in different lecture halls. I went to Managment in Pediatrics, Cognitive Issues,Education Entitlements (which was very intresting), The parents Forum and then everyone was at the last lecture Where are we going.
All in all it was a great day and I did pick up some information.
I got the meet the ladies from the LGS Foundation and you can visit them at their website
www.lgsfoundation.org They have an event coming up " Helmets for Hope".
Another bit of info I got was there is a site on line that is free they say easy to use for seizure tracking and graphing. You can visit it www.seizuretracker.com . I must look in to it so this way I might be able to keep track of whats going on with him and then I can email it to the docs office.
Got to meet Will for lunch and we went Halloween shopping for the kids costumes. Eoghan is going to be some Star Wars thingy, Maura is going to be a get this a "princess witch" and my little side kick is going to be a little clown. Having a child that has Micro at times like Halloween it gets hard because they need one size costume and then the mask or hood, or hat is too big so we have to get creative. I know Finnys hat is big but it was the easiest to adjust to fit him.
Cannot wait for the next Epilepsy Conferance at Columbia on Nov 7th.
They said that the confrence that they had at NYU today will be available on their website in about 2 weeks

FACES

By the title your are probably thinking pictures but alas no. What it means Finding A Cure Against Epilepisy and Seizures. Is a confrence at NYU in the city. This will be the first time I am going to one at NYU. Every year Yvonne forwards the info for the confrence but I always make an excusse as to why I can't or won't go but this year I want to check it out
So Mammy gets to go to the city all on her own wow I haven't done that in a very long time. I am even going out to lunch with Will I havent done that since we worked together and I have been a stay at home Mom for almost 6.5 years.
I don't know which I am more excited about the whole day on my own ( ie no kids), going to the confrence and might learn something new or going out to lunch.

I am also going to a confrence at Columbia on Nov 7th that is all about epilepsy.

Congratulations are in order

Congratulations to Martin and Anne-Margaret.
They got married today
So congrats to the New Mr.and Mrs Cosgrove



Pic's to follow

Seizures, seizures, seizures

Well our Finnian pulled them for a loop at school yesterday. Yup he had not 1 but 3 of his screaming seizures at school.His nurse gave him diastat and had to hook him up in the oxygen. So the usual called the doctors office and spoke to the nurse. She called me back after talking with his doctor and we have to go up on his Banzel at night and see what happens. Its a bummer I hate increasing his meds. You know he has been having these seizures for almost 2 years and the longest we have gone with out one has been 9 weeks. Now they are happening ever 3-4 weeks again. Since they have never gotten one of them on the EEG they really don't know what type of seizure it really is. He did have one once but it was only a small one and the Neuro on call told me " Oh its just a breath holding spell" Breath hold spell my ass I have never see a child wake up and hold its breath or be praticapiting in class and give a blood curling scream and go all stiff and then the ass falls out of his stats. Look I am a mother of 3 kids and yes my Maurs would go into a temper tantrum and have a breath holding spell but she never did a blood curling scream and go all stiff there is a huge difference. I may speak with an accent and not have any letters after my name indacating a medical professsion but I do know my child better than a doctor.

What's normal?

Well my life sure as hell isn't. But you know I have gotten to a stage that everything that gets thrown at me is just another test in my life's journey. You always wonder why is it me? Why couldn't it be some one else? But then again I wouldn't wish my problems and troubles on anyone. I am not that kind of person even though I might think it at times when I am ready to pull my hair out.
So if anyone says "oh we have a normal life" they lie. Because no one is that perfect we all have our little quirks. To be honest I am way off normal I am just me and I am happy to be just me.
Like the other day when I was in a bit of a panic with Eoghans sugars being high today when I look back I think its a bit funny because most people think I am in a sense Wonder Woman. I am proud to say "No I am not, I just me". I panic just like anyone it was probably funny to see me pacing and basically chain smoking waiting for a doctor to call me back.
So you see Iam not normal I am just me.

The results are in

Well his A1C's are in the normal levels so it means he is not diabetic. We just have to watch him and if he presents with more symptoms we have to bring him back and tested again. His cholesteral is on the high side so we have to work on that to bring it down. So good news for now and just watch him.

Sorry about the language

I just want to say sorry about my potty mouth. When I get flustered it comes out and of course I just type it down. I think anyone that would see blood sugars 372 it would happen to. Well we are off to the peds tomorrow to get him checked out and I do have a number for a doctor if it is really what I am thinking. Thanks to the the lovely nurses in Finnys Neuro's office. Such a wave of relief washed over me after talking to them. I was nearly eating the cigarettes while waiting for someone to call me back becasue I was in a bit of a panic should I run to the ER with him or what. So now I have to wake him up during the night and make sure he wakes up every time. Now thats going to be fun because Eoghan is not the nicest person when you wake him up from his beauty sleep.
Maurs was funny all she said " Well here it goes again the both boys off to the doctors". "Mammy aren't you lucky I am not like them boys" Oh she doesn't know how true that was.
Well we will see what happens

When it rains, it ......... pours

well our Finnian, knock on wood has been doing good. The increase in the Banzel seems to have stopped any out show of seizures. So this post is not about our Finnian but about our Eoghan.
Last week he didn't do well in his test at school. I couldn't understand why as we had gone over everything and he knew the work. I am not the parent that expects the child to bring 100% on every test he does. I am happy with 80% and up. So I thought I might have been putting to much pressure on him. On Saturday he was at a birthday party and he got told no cake, no ice cream etc.. The usual go because of his food allergies. He complained of a headache and he was tired. Hey a room full of 9-10 year olds would make anyones head spin.
Today again he didn't do good on a class test and I knew he had studied and was able to answer all the questions. I didn't know what to say to the teacher because she knows he is a good kid and she is also puzzled. So when we get home he begins to tell me he was so, so thirsty at school today. Then it hits me not doing good on tests, being very tired, headache, getting up at night to go to the bathroom and now being very thirsty. I checked his sugars the machien showed a number that made me gasp. It read blood glucose level 374. I am a bit flustered even Joe's sugars have never been this high and he is a Diabetic. So now I am waiting for the doctor to call me back. I was told to make him drink plenty and told a list of symtoms to watch out for. Now not only does Eoghan have allergies and Eosinophilic Esophagitis he now might have diabetis. But like the allergies it can be controlled and thats what we will aim for is control. So its off to the doctors office we go tomorrow and start all the necessary testing to see.
So shit when it rains it fucking pours

Moms in Common

There is a new site on the web called Moms in common. Its a connecting place where we get to see we are not alone. So if you have time pop over and check it out.

www.momsincommon.org

Vigabatrin

Well I just got a call from the Share Pharmacy that they are processing Finnian's Vigabatrin. So now he will be getting his Vigabatrin here in the USA instead of getting it from Canada. I will miss talking to the the wonderful people in British Columbia who for the past 4 years have been sending Finnian his Vigabatrin.
Vigabatrin is now available in the USA but only through a Share pharmacy. The doctor must sign up with Share and then you get the paper work which you fill out. The doctor then fills out their part and then it get sent to the Share pharmacy. Vigabatrine for now cannot be picked up at your local pharmacy. Bummer.
The usual ERG is still required but for us Finnian's vision is basically non existing. Not from the Vigabatrin. His retina's still react to light but the part of the brain that proccess what he sees is basically gone due to his stroke and seizures on the right side and his left side of his brain is also now a hot spot for seizures.
I remember the day the doctor came in and said" Yes it is Infantile Spasms and we have 3 options of treatment. First choice is ACTH, second choice is Vigabatrin and third choice is a combination of drugs." He recomemded that we first try Vigabatrin and we did. We were lucky that Vigabatrin worked on his IS but we have had to add other drugs to his daily meds as not only does he have IS he has many other types of seizures.

Flu shots

Well we went today to get Finnian and Maura their flu shot. So get to the doc's office and sign in and wait about 10 minutes and get called to the front desk. THe normal "What are you here for today?" Flu shots and a check up for Finnian. "Oh sorry we don't have any of the flu shot left we only have the mist for the flu and the mist for the H1N1". I was a bit pissed because at the hospital they would have given Finny a flu shot before we left. All I could say was put us on the list and call us as soon as it comes in. SO Maura was dissapointed that she wasn't getting her shot. So went inside to see the doctor and the nurse wanted to know why we were there so I said" we came for the flu shot for Finny and Maura and he also needs to be checked out as he was in the hospital and has his normal hospital cough." Guess what Finny did get his flu shot but Maura has to wait until they get in the next batch. They have a very limited supply left and are only giving it to the high risk patients. So Finny falls into that group. Well his cough is really nothing but I got asked if he snores. Well he does sometimes but is much better snce he got his adneoids out. I was a bit curious as to why he asked and got told "well he has very big tonsils they are a great colour normal but big balls of tonsils that are touching and that is probably why he is coughing his saliva is pooling in the back of his mouth and then only so much can squees by hence the cough. Next time he goes to the ENT talk to him about removing his tonsils when they do his next round of ear tubes. The next time he gets an ear infection he will be going back getting the tubes and they will take the tonsils out I don't know why they didn't take them out the last time I did ask.
Oh well someting else we have to think about. I wonder if when he has the surgery on his hip if I could have everyone set up to do everything on him in one swoop. Get the hip done, tonsils out and tubes put in, muscle biopsy and the eye doc to give a good chek on his eyes wouldn't that be great? I suppose I can only hope

He are some pictures of what Finnians brain activity looks like

This is waht his waves look like during the day as he goes to sleep

This is what it looks like when he woke up

This is what his poor brain is like at night

This one is from sleeping at night. Alot of activity

We are home

Well we got home yesterday evening and the results are they didn't get the episodes he was having at home but they did get 2 seizures when he was sleeping. This we haven't seen in a while. The seizures did not have any physical involvment so no thrashing or moving or twitches. He did something that we have seen him do at home where his eyes will cross and then dart over to the left and basically will stay there and then they start bobing up and down. So for now there are no changes in his meds.
Because he was very hypersinsitive to the touch during his seizure he had at home and the only other time we had see that was when he ended up with aspitarion pneumonia they did a chest x-ray there was good news there it was clear. They did blood work on him too and we had to cath him because he had not peed they also wanted a urine sample. Boy when the nurse catherized him she got a load of pee out of him but then again he had not peed in over 6 hours. We usually have this happen before he does one of his shout seizures but of course he didn't have one of thoes ones.
So now we are home with instructions that we are to video him when he has one of the crying spells and we have to hook him up on to the pulse ox to see what his heart rate and O2 rates are like during one of them. So now we wait.

Well the answer is..........

They want him to go into the hospital to see if the "new" episodes are seizures or to see if they can figure out what they are. They have never heard of anyone have a total body spasm or full body cramp so they want to see it on video while they are monetering his brain waves.

So please everyone keep your fingers and anything else you can cross that he will have one of these" cramps/spasms" tonight while he is in the hospital. I sure do want to know what they are.

Wish us luck that he will have one.

Something new with Finnian

With the last increase in Banzel all of Finnian's symptoms of the puking,pooping and breathing issues have gone. Which is really great he is more "with it" too. I must get him on video he is doing great pushing up on his arms much like waht a 4-5 mth old would do . I know he is nearly 5 but this is an improvment in the right direction.
Now the "new" thing that has popped up is at night when he is sleeping he will start crying and when you try to pick him up he is like his whole body is frozen and when you touch him it like he nearly jumps out of his skin and he just screams louder. It is really hard to explain is it that his whole body is in a huge muscle spasm or id it like his whole body cramps up???? I don't know.
The one thing I do know is his contractions start releasing from this head down through his body but his poor legs are the last part of him to come back to normal. Last night he had another one and I pick him up and he stayed in the same position that he was in lying on his side. When the "wave" was over and he opened up his hand you could see the mark of his finger nails deeply embeded in his palm. I did put a call into his doctor and they are stumped at to what it is so now watch I will sit and wait tonight to get it on video and it won't happen. They also want me to put his pulse ox on to see if his oxygen goes down during one of these episodes.
So now we wait.

Eoghan's new glasses

Old glasses

New glasses

All we can say is Thank You Nanny and Grandad for Eoghans new glasses. When Nanny goes getting glasses she only gets the best and her boy got Ray-Ban frames. Now if I was getting them lets put it like this he would have gotten the no name glasses.

So "Thanks" again Nanny and Grandad

This is what we discovered in Finnians bed this morning

I had left a pack of the chuck pads at the bottom of his bed and he decided that it was a toy. Well there is fluff all over the place. I learned my lesson only Finnian and some toys are allowed in his bed from now on. I will have to move the nappy caddy or I will find them all over his bed too.

Sad news

A cousin of ours lost his battle with cancer at the young age of 37.He leaves behind his wife Donna and 4 children, Jack, Patrick, Mia and Jon-Jo.
Our thoughts and prayers are with his family at this time.


RIP
Johnny Niland

Eoghan

We are very proud of our Eoghan as he got student of the week. So today he gets to wear regular clothes to school today. He had been working hard all last week at school to get student of the week. The only area he relly needs work in as far a school goes is hand writing its horrible but he can read it. I keep on him about it but all he says is "" but Mam when I get bigger I will be able to use the computer to type my homework so my writing is fine I can read it". Isn't that a nice answer?

Eye doctor and new glasses

Well todays post is about our Maura. She got to hang out with me today as she had an eye dotors appointment. It was for 10am but it was almost 12 noon when we got out of there. I don't mind as she gets a really great eye exam. She didn't even flinch when the nurse put in the dilating drops in her eyes. I was so proud of her. Best news her eye perscription has not changed.

So when we left the eye doctor's office we decided to stop in and check out Lens Crafters to see their selection of kids frames. Well we didn't have to go anywhere else she had a choice of about 8 frames that really suited her. It was the best place for selection the last place she only had a choice of 2 thank God they had a pink pair. Her new glasses are really nice and even better Lens Crafters had a sale 50% off total purchase of glasses for kids 12 and younger. So instead of paying over $300 for a pair of glasses for a 6 year old they came out to $149.98 which I loved. Must bring Eoghan in and get him new glasses