Monday, April 29, 2013
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
Monday, April 15, 2013
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.
Wednesday, April 10, 2013
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.
Tuesday, March 26, 2013
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
Thursday, March 14, 2013
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
Sunday, March 10, 2013
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