Holidays

Well the summer is passing by so fast well look its basically the end of July. What have we done his summer so far????????? Well Maurs was in swim classes and she got put on the wait list for the second session. So when the second session rolled around I took her over and guess what she got on the swim team. GO MAURS. Eoghan and Nanny are living it up in Ireland they left on Tuesday.

here they are off to the airport. So question as to why Maura doesn't go with them? Well Eoghan was 11 years old when he went with my Mother the first time so Maurs will just have to wait until she is 11 years old to go to Ireland with Nanny. Its a huge responsibility taking someones child with you anywhere and taking a child with you on a transatlantic flight to a different country is massive. Its not like I could hop in the car and drive and pick them up if they weren't happy so we wait until we figured out they were old enough to go solo with Nanny. My Mammy is no spring chicken either so you don't want to send the rowdy one with her and have her stressing out on her holiday. What are we going to do for a holiday??????? Its hared to plan anything when you have a child with medical issues and we all know in a snap of your fingers we can go from cruising along at 40 to end up going at 90 and feeling like we are going around hairpin turns. We cannot live in the fear what if so we take it easy and just do day trips here and there. We had the best time last year when we took the kids on the subway out to Coney Island for the day. A day at the beach is the next on the agenda. Had planned on going later today but have to wait in for the FED-EX man he is supposed to be bringing the rest of Finnian's monthly medical supplies. I have started back walking again and on boy do I feel great. Its a great way to clean out the head. I am also doing a water aerobics class at the local public pool. So I walk there and back every evening. The class is on Monday to Friday so I am clocking up just a little over 4 miles a day and then on Tuesdays and Thursdays while Maurs is having her swim class I have been adding an extra 3+ miles. Finnian and his teacher have been joining me too. Finnian gets to have his class outside and he loves it. Don't know yet what we will be doing in August haven't planned that far ahead. Joe will be off on holidays from work so maybe we might do a few day trips. Finnian loves the subway but not all the stations are wheelchair accessible so its not something I can do on my own with the Finn-man so when Joe is off I will have the extra muscle to help me up and down the stairs with Finnian.

Communication is key for everything

I just love how some people think that just because they are older than me can make plans and decisions for me and for my kids. Well guess again you cannot and you will not make any plans or decisions for me or mine with out discussing it with me before hand. Being sneaky about things doesn't sit well in my book especially when it involves just some of my kids. Oh and by the way they last time I counted I did have 3 kids. I love how you think you can just waltz in to our home and lives when it suits you and we are supposed to bow and jump and do your bidding well guess again. My kids aren't playthings that you can take down off a shelf when you feel like it. You want to make plans you have to talk to both of us not just one of us because sometimes one of us forgets what the kids do on a day to day bases. Like what days swim class is on and when it finishes. When some little person has Doctor's appointments. Communication is the key to a good relationship making demands just because is something I will and have no problem saying NO to. I have heard things that have been said about me and you know what everyone is entitled to their own opinion of me but I draw the line at the lies. I know you have made you own opinion of me and that is fine but in all honesty you don't know me and you have never made the attempt to get to know the real me so just watch what you say about me because it does get told back to me. So right now the answer is NO and its not up for any further discussion

Haven't posted in awhile

June has come and gone but the biggest news from the month of June was our Eoghan made his Confirmation.

Here is one of Eoghan and Nanny

We went and visited Dad in the graveyard for Father's Day. Its hard to believe but Finnian loves to go and visit Granddad. It is really something you have to see because I can try and explain it but words really doesn't do justice to how alive Finnian becomes. He gets really excited when you tell him we are going to see Granddad. Mayo had a big win and of course the Finn-man had his Mayo jersey on and we had the flag with us and we got some unbelievable pictures of Finny both sitting up and lying down on Dad's grave.

June 24th was Dad's 3rd Anniversary its hard to believe its been 3 years its still seems like yesterday. Finnian was all excited as he got to go and visit Granddad again.

School finished for all the kids and Eoghan got a great report card so we have to wait for his passport to come back so they can book their tickets for home. Nanny brings him with her as her helper. Maurs got a great report card too. She had to wait until she is 11 years old to go to Ireland with Nanny well that is how old Eoghan was when he went with Nanny the first time.

May

May seems to have gotten away from me with out a post. There was great excitement on May 11 our Finn-man made his First Holy Communion. I know most will think isn't that all apart of being Catholic. Yes it is but its something we never thought our Finny would be around to do. Having a child who is Medically fragile you just never know and the odds were stacked against him even reaching the age he now is.

One of Finny's little Warrior buddies lost his battle. Its so sad but at least now Jay Jay is not suffering. Rest in Peace little buddy. Both Eoghan and myself have a digestive disorder called Eosinophilic Eosphagitis. Its an autoimmune disorder where we eat certain foods our bodies see this food as germ in a way and to fight it our bodies produce huge amounts of eosinophilic cell to fight this germ. In turn this make us sick. Terrible pains, vomiting, diarrhea, very tired, no energy, and the list goes on. We are lucky we still can eat food some can not and have to drink a special formula. Eoghan seems to being doing good with just his top allergy foods removed form his diet but lately I don't seem to be doing good.Foods that I could eat are starting to bother me. I am just after getting over a really bad week where all I could eat was Rice Chex cereal. There is no cure for this disease. My psoriasis also went crazy which is another autoimmune disorder and I also have Celiac sensitivity. I am a genetic carrier of the H.L.A DQ8 gene but the other blood test has come back negative but at the time of the test I had removed all gluten and the other foods I was reacting to so its possible that I have Celiac disease and not just sensitivity to gluten. One of my high triggers is soy and soy seems to be in everything. Next time you are in the supermarket have a look on the label of the foods you are buying you will probably see soy listed. Its also one of the reasons I don't like to eat out because you just don't know if you will get something that has one of my no-no foods in it. Oh well I seem to be on the mend and the next big day will be Eoghan's Confirmation

Busy 2 weeks ahead for me

Well today starts with school for the kiddie's and then appointments for the Finn-man.Then come home and try to put a bit of a shape on the house. I am a great one for starting something and never finishing it. There is always laundry to be done that is always a never ending battle. Tuesday Finny has another appointment as well as school and therapies.So hopefully I will get more sorting done. You know I always keep clothes from Eoghan. Maurs often wears them but it seems by the time they fit Finnian its the wrong season also Finnian has much longer legs at his age than Eoghan had. I think its time to clean house of everything that is not needed. My new mantra is going to be "Less is More".But one thing you can never have too much of is photos. But I will have to come up with a better storage solution than boxes. I am forever taking pictures. Yes I know I share a lot on Facebook but I have loads more that you never get to see. I took down most of my pictures when I painted and I never put them back up so must to that. Some thing else for the "to do list". Food is ordered for Finnian's Communion party. Its nothing big just some family in the house. Finnian has a job to do at the Communion he will be bringing up one of the Offertory gifts well I will be carrying it up in one hand and pushing him with the other hand. Went shopping and got Maurs a dress to wear for Finnian's Communion also pick up a pants and shirt for Eoghan to wear. Tried on a dress it was nice but I wasn't feeling it was me. Anyway I would have had to go and get a pair of dressy shoes and when would I wear them again oh yeah to Eoghan's Confirmation but then I would need another outfit and what if the shoes didn't work. I know I am just making up excuses but I don't do dressy anymore. A nice pair of capri's and a nice shirt and my clogs and I am all set. I will do the same for Eoghan's Confirmation but maybe with sandals as his is in June. My Mom got a nice classy dress but when you are thin you can really wear anything even though she is always saying they don't make nice stuff for older people in her size. She always seems to get a piece that she can wear anytime to anything. Have to take a trip to the fabric store to get some material to make covers for Finny's chair for his Communion thinking of just doing plain white and will see if I can get some iron on crosses to jazz it up a bit. Will also look to see what nice summer fabric then have will have to something for the end of the month for Memorial Day some thing with the flag on it or stars. Oh well that's all for now do have a bit of a rant but will wait and see what happens before I stick my foot into it. Don't mess with Mamma Bear and her little cub is all I am saying for now

A nice end to a horrible week and a half

Over a week ago I got a phone call telling me that our insurance claim on our van wasn't cut and dry and it would be better if I claimed on my own insurance. So early on Friday morning I had to take it a drive in center to be checked out. End result no problem and finally our van was going to get the dents fixed. Friday evening got a call that the specialty pharmacy would not be able to ship Finnian's medication. A bit of panic set in as he wouldn't have any for Monday morning. Back and forth on the phone trying to get things straightened out on Monday so now no night dose of the med. Finally on Tuesday we got confirmation that everything was fixed and his meds were being shipped out and I would be able to pick them up on Wednesday. Seizures had been increasing but they were manageable with a bit of help from one of his rescue meds. I was so happy to get that UPS box with his meds in it. Dropped off the van at the shop to get fixed and they said they would do a check up on it too. So we were only with out the van for a few days and wow does my van look great and now she runs great too. The power steering pump/motor had to be replace which I knew and they put a new bulb in the break light on the back window and they also fixed the spring in the back door release clip. Friday I finally got the taxes done and then rushed to get to Eoghan's Confirmation class but found out that the parents meeting had been cancelled which was fine. Saturday morning had a basketball game where the Mammies played against Maura's team. We had a great time but I hurt now. Not used to all that running even my arms hurt. It was all for fun and we gave the kids a good game. Saturday afternoon we had Finnian's Communion rehearsal and he did his First Confession. Its funny Finnian was Baptized on Maura's 2nd birthday and he made his First Confession on the same date that she was Baptized on. So I have no excuse not to remember the dates. The next big day is May 11th when he will receive his First Holy Communion. He has his suit and all the bits and bobs gotten already for his big day. Eoghan's Confirmation is not until June so we still have to get his outfit but we have time yet. Sunday morning was a bit rough boy did I hurt but sucked it up and took Finnian off to his Religious instruction class and then on to Church which we had to go out in to the vestibule again because of stupid seizures. He had a bit of a cat nap and woke up fine like nothing happened. The rest of the the day he was fine. Went in there a short time ago and yet again he had taken his nappy off. Will have to make sure he wears some kind of pants, shorts or jammie bottoms over these nappies as he has no problem opening them.

At this time 14 years ago we were figuring out the seating for our reception and writing up the placement cards.Making all the final payments and sorting out all the last minute things. Count down was starting for our big day. Fast forward to today we have 3 lovely kids and even though we have had our ups and down and honestly some major shit thrown at us we are still standing together strong maybe even stronger than we were all those years ago. In March 2000 we had our first child a son and we chose to name him after his Grandfathers so we had Eoghan Joseph. Oh did we get some slack over the spelling of his name but if he was to have an Italian last name he was having an Irish first name. Sorry son but your name gets butchered all the time and its fun to see people scratch their heads when we say " Eoghan". Its priceless to see their faces in puzzlement over how your name is written and then how it is said. In 2003 we added to our family a little girl who we named Maura Rose. She was named after my Grandmothers and my twin sisters. I know some of you are scratching your heads there aren't twins in my family but yes there was they passed away shortly after they were born. So Maurs your were named after two strong, proud women I just hope you turn out just like them. Then in 2005 we added another child to the mix. We had found out in December 2004 that yes it was a boy and also on the same day we were told what we knew as parents to 2 other children we would probably have a new normal if he survived birth. Well he proved the doctors wrong and Finnian James got added to family. Daddy picked out your name and in keeping with the fashion we had started you got an Irish first name. Little did we know that your name suits you as every day you are teaching us something new. What we knew as normal isn't our normal. You don't walk, talk, see but you have a smile that warms the hardest heart. We did hit a rough patch after Finnian was born guilt on both our parts each of us blaming ourselves for what happened to you. But I put my big girl knickers on one day and made your Daddy face the facts that you were different and we had to stop blaming ourselves you are who you are supposed to be and if he couldn't accept it then maybe we should go our separate ways. That was a wake up call for your Daddy that day the choice was his to be with all of us together as a family. Since Finnian was born we have seen family and friends drift off but that is their choice and I am not going to try and make you see it our way you are all adults and you can make your own decisions. Other family members have our backs and for that we are thankful they have been our rock on this sometimes thunderous journey. We have made new friends ones that can see past the chair that our child sits in. For the friends that have stuck with us thank you I know it hasn't been easy its been a learning experience for all of us. We have also reconnected with people from our past all thanks to social networking sites on the computer. Yes our lives are different and our normal is not every ones normal but its our normal daily life. Yes most everything gets planned around Finnian and there are things we cannot do together as a normal family but we make choices hopefully they are the right ones for us. So love heres to another year under our belt and hopefully many more.

Purple Day March 26th 2013 Supporting Epilepsy Around the World

Purple Day is something near and dear to our hearts in our house. My 8 year old has Epilepsy and has had it basically all his life. Its something we live with but we try and not let Epilepsy control our lives. There are many different types of seizures and different types of Epilepsy syndromes. I think at some time or another we have nearly seen all the different types of seizures. My son was diagnosed at 8 mths old with Generalized Epilepsy when he had 3 Grand Mal seizures but with what we know now about seizures he probably had been having them since before he was born. At 11 months old he was diagnosed with Infantile Spasms a horrible form of epilepsy. We saw first hand what this type of Epilepsy can do to a child. Finnian has brain damage from a stroke but was developing slower than a normal baby but when Infantile Spasms hit him he was like a new born baby all over again. Sabril was a drug that helped calm his Infantile Spasms and at the time it was not FDA approved so we had to get it shipped in from Canada. Thankfully now it is available in the USA through SHARE. So now we had decent control over his Infantile Spasms but then his other seizures were all over the place so we started adding and changing his medications to try and get control of his seizures. By the time Finnian was 19 mths old he was showing another type of Epilepsy Syndrome Lennox-Gastaut Syndrome. Its a type of Epilepsy that is hard to treat as the seizures become resistant to the medications. For Finnian to give him his daily normal life he takes a lot of medications some of them he has to take 3 times a day, he is also on a special high fat diet and we cannot even go around the corner with out his rescue meds because you never know when you will need them. Even with all of that he still has seizures. Finnian is at high risk for SUDEP which is Sudden Unexplained Death in Epilepsy. Its not something that is normally discussed but it should be explained if and when you, your child, grandchild, spouse,or whom ever is diagnosed with Epilepsy. Finnian's brainwaves Getting brain waves read He has his head wrapped up This is one round of medications that Finnian has to take he takes meds 3 times daily Finnian's daily meds he takes This was when we couldn't stop his seizures and he had to be put into a medically induced coma and put on a ventilator to stop his seizures Here he is with his big brother and sister

How do I do it?

Many think I am "Super Mom" but honestly I'm not. In my vision of a "Super Mom" the house is spotless, everything is where its supposed to be, everything runs in order and on schedule. Honestly that's not me. I have to tell myself that an appointment is the least a half an hour earlier than it really is. Laundry get done when the basket is full. My house is well lived in and it certainly not spotless. Yes I am up all hours of the day and night and I have been doing this for a good many years I now cannot sleep more than 2-4 hours at a time so I guess that makes me the Queen of power naps. The computer is a both a blessing and a curse. Its a blessing during the night as I can chat to people. I guess in a way its a bit of a sanity saver. Its a curse in another way cause its always on and you know you just can't pass it by with out give a little wiggle to the mouse so the screen will come back on and something will grab you attention and of course you will plank yourself back down in front of the screen and what you were going to do gets put on the back burner. I guess I am the Queen of starting many project and really only finishing them when I need them. The shamrock shirts are a prime example I am finally getting around to make them the reason is the kids need them for school tomorrow and I don't want to be making them like I did Maurs Valentine's Day shirt right before she went to school. I know people wonder why I am so up beat and I always seem to have a smile plastered on my face. Some have asked if its my mask that I always seem so happy. Its not a mask its just me yup its just the way I am. Yes I do get pissed off and mad but that just being human. For awhile I blamed myself for the issues that Finnian has but blaming myself won't make him normal I can't turn back the clock and undo what has happened to him as they cannot really tell us what exactly is wrong with him. He has a whole lot of diagnoses but no name for what he has. I do know that life is precious and we should never take things for granted. Hey come and live in my house and we can go from being fine and dandy one minute and the next be saying a few prayers that the meds I just gave Finny will stop the seizure or if not is he stable enough to bring him to his hospital or do we just call 911. You know no parent wants to hear the doc come and discuss DNR (Do Not Resuscitate) papers we have been approached twice about them but I haven't had to make that choice yet. I know there is a possibility where we have to make that choice and that is not going to be easy one but I have to think about what is right for Finny. So how do I do it I don't really know. I just take it one day at a time and live for the good days and pray we get through the bad ones.So what if I didn't do the load of laundry or wash the floors or put every thing back where it belongs its not the end of the world and it can always be done tomorrow. So live for today and worry about tomorrow when tomorrow comes

March 2013 so far

We are having such crazy weather one day its a beautiful spring day and the next its snowing.This is what we woke up to on Friday morning Saturday what a change nearly all the snow gone and the temps in the mid 40's so off to the beach we went Did you see in one of the pictures he had his foot on the front wheel? Couldn't figure out why it was hard to push him but when I went to take his picture there he has his foot on the wheel and the little bugger laughed had to watch him after that cause he kept doing it. It was really nice at Orchard today and Finny even got to go on the swing. Have a short video of him will see if I can upload it here later. The tide had only gone out so it was a bit boggy in parts. I'll tell you my poor legs got a workout today and the trainers got full of wet sand.I don't often post pictures of myself but its not a bad one

Happy Birthday in Heaven Dad

Happy Birthday Dad love you and miss you. Dancing with my Daddy Dad and his number 1 Lady The 5 of us 2009 Hanging out with some of the Grand kids Favourite hobby in the summer besides cutting turf

Slacking I know

It always seems to be a feast or a famine with up dates here. Well you are getting the feast right now so you will just have to put up with me I guess. Everyone had that wonderful bug that was going around all except me I don't know how it skipped me. Poor Eoghan got it twice and the Finn-man I think he got it the worst and we even ended up taking him to the ER during his bout with it. You know how I will avoid the ER at all cost with him but the little bugger scared the crap out of me. He kept getting nose bleeds and when I saw the blood coming out of his nose and mouth I popped him in the buggy and landed him up to the ER. When we got to the ER the nurse got a bit flustered as Finny's heart rate was in the 160's so we got taken back really fast. They were wondering about why it was so high but when I told them that wasn't high they just looked at me like I had 2 heads. Yes I know for a normal 8 year old with no issues it is a high heart rate but come on for Finny its not. Once they listened to Finny's history they were more comfortable. We got discharged after they checked his nose out and of course we ended up with another script for more medication. After everyone was over the bug I came down with bronchitis and laryngitis and of course I didn't go about it when it first started so it lasted a bit longer even with getting medication. The voice is finally back to normal. We finally are getting the van taken care of. My poor van got hit while parked on our street in January we were lucky the guy that hit it called and reported it to the police. March is birthday month for us Eoghan turned 13 on the 3rd, my birthday was on the 4th and no I'm not telling my age and Aidan turned 18 on the 5th. Dad would have been 74 on the 8th and then Ms Maurs will be closing out the month with her 10th birthday on the 20th. The next big day is St. Patrick's Day so will hopefully have some fun pictures of the day to post. The kids will be sporting the tee shirts I am making for them so we will see how they come out. Thats it for now

Happy 18th Birthday Aidan

To my wonderful nephew Happy 18th Birthday

Happy 13th Birthday Eoghan

Wow its hard to believe I have a teenager I still remember like it was yesterday that I brought you home from the hospital. You are really coming into yourself but not to worry young lad I will keep you in check. This year you are doing really great at school keep up the great work. Love you loads P.S. Of course I had to take a bit of trip down memory lane with some pictures Eoghan 2 mths old Mammy and Eoghan First trip Home Ireland Feb 2001 Daddy and Eoghan Eoghan and Maurs Second trip Ireland 2003 Eoghan and Finnian Daddy and his boys Eoghan and Finnian \ Eoghan with Maurs and Finny one of favourites Your first day of school Having fun in the snow with your brother