Thursday, April 17, 2014

OH WOW!!!!!!!!!!!!

What began as a dream (a special needs jogger) is now going to happen. All thanks to Steve-o and to everyone who gave to our Finnian's "gofundme" page.We passed our goal amount in just over 24 hours. You know we cannot thank everyone enough for making this happen it really is unbelievable so everyone THANK YOU SO MUCH!!!!!
I know Finnian will be so much more comfortable in his new wheels. I think this little boy is happy as so many people came together and made this happen for him.
A special Thank You to all who organized the Spartan Special Needs Race it was because of you this came about for our Finnian.
Thank you all !!!!


Monday, April 14, 2014

Its been awhile

I have really neglected my blog its been an outlet for me and its time to get back in the swing of things.Of course I fried my computer again but not to worry working on getting a new one. So much has happened since my last blog update. The kids went back to school in September its hard to believe Eoghan is in 8th grade we know he will be attending All Hallows High School in September. Maurs is in 5th grade and doing great. Finnian is still on home medical and he will be staying on home medical school its safer for him. Not to worry even with all his issues he is a very social friendly child and he gets to experience basically everything maybe even more than some kids. December was a busy month for us Finnian was in the hospital getting a medication change for his seizures and then he made his Confirmation. We are still in Religious Instruction class and yes I did have to his home work and you know picking a Saints name was just as hard if not harder than giving a new baby a name. We picked well I should say I picked St. Colman. There are over 300 Irish Saint's named St.Colman's but 2 stood out as they have connections to where my parents are from in Ireland. So on December 9th 2013 Finnian received his Confirmation. Then Christmas came and of course Santa Clause came and paid us a visit. Eoghan got a laptop so that is what I have been using since my lovely PC decided I worked it too hard.Seizure wise it was a bit rough for Finnian as we were still weaning one of his meds and slowly going up on the new one. January came around and Finnian's birthday he turned 9 years old. We have had a lot of snow this winter and of course the sleds got dusted off and we spent a few days out on the hill and of course Finnian had his turn. We had to get him a bigger sled as he is finally too big for the circular one he lost his wellies coming down the hill and ended up with cold feet. February was good Finnian wise he was behaving seizure wise. The month of March we saw the seizure monster come back never fails stop one type and another pops up but you know we are used to it as it happens all the time. As a parent of a child with special needs the one thing I try is to give him a normal child hood. Now I know most think I am off my rocker but what you have to remember is he is still a child and in a way he needs to try normal childhood things. Yeah we have to adapt to his need but you would be surprised at the joy he gets. He goes on the swing (special needs) in the park, he goes down the twisty slide on his own in the park I need someone with me to put him down the slide but he loves it. He goes sledding I get him ready at the top and get someone to push him off and I will get him at the bottom and carry him back to the top and we will keep going until I have had enough running up and down with him. I take him on the NYC buses and subways I am really learning all the wheelchair accessible stops if we have his wheelchair but if we have the jogger it doesn't really matter he loves being bounced up and down the steps. Will have to invest in a new special needs jogger as his legs have gotten too long for the regular jogging stroller. Its expensive but will be worth it as we use it a good bit in the summer at the beach and on the trails and its what I use in the snow. We had the best day out this past weekend. We went to Citi Field to a Spartan Race no, no I didn't do the race but 2 of the kids did the race. Yup Maurs and Finnian competed and honestly what an experience for both of them. What an amazing group of people honestly they are all great individuals but as a group words cannot express how truly amazing they are. Well you are probably tired after reading this so I won't bore you with anymore of my ramblings so instea.d you can look at some pictures Confirmation picture
a collage of his hospital stay we have to have fun
Sledding
Finnian's new sled
flying past me
not too impressed with the snow on his face
Some Christmas pictures
The Birthday Boy
St.Patrick's Day yup she put a skirt on me
Citi Field Spartan Race
Finnian and his HERO Steve-o
See the cheeky grin on him he is having fun
Me and the 2 kids
That's it for now

Saturday, July 27, 2013

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.

Sunday, July 14, 2013

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.

Saturday, June 29, 2013

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

Monday, April 29, 2013

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