Two years ago

Two years ago our Finnian gave us a wake up call on how quickly our special children can go form being good to basically knocking on Heavens door. The morning was a rainy one and he was a bit jumpy and not himself. When his nurse came in I told her that I had called the bus and school that told them that he would not be a school as he was sick. Boy we didn't know how sick he was.

Bonnie went to change him and when she pulled the tabs to open his diaper Finnian nearly jumped out of his skin and then went smack into mad seizures. We gave him his rescue medication but it didn't work so we just grabbed him up and rushed him to the hospital. In the ER they kept pushing meds to stop his seizures then next thing his breathing is funny and they rush him to the xray. His right lung had paritally collapsed. Next thing I know they are bringing him to ICU hooking him up to EEG and putting a tube down his neck to help him breath.

This is waht he looked like for 4 days. THe biggest

scare he gave us was when he dislodged his

breathing while under sedation. I felt bad for the nurse one minute he is fine and the next all the alarmes are going off and his O2 is dropping. I walked in when they were bagging him and waiting for the xray to come. Xray got taken and you could see that the tube was dislodged.They put in a new tube and the next thing they were watching his mouth there he was pushing his tounge against the tube. We were lucky that he was able to pull out of it.

So today was a wet rainy yucky day like that of 2 years ago and all kind of emotions run through your mind over that horrible mind blowing day. But you know you cannot be hung up on what would have , could have, should have been of the day but to be thankfull that Here he is 2 years later and he has not been sick like that since then. In some ways it was an eye opener to see that as quick as you can snap your fingers he can go from cruising at 60 to going out of control at 140 just that quick. You also get to see how precious life really is and that Finnina needs to live his life the fullest ability that he can with help from me his Mammy, his Daddy, his brother and sister, family friends, doctors etc.

Happy Birthday Ronan

Sending Birthday wishes to our cousin the Birthday Boy in Holland.

Happy 2nd Birthday Ronan

Use your own email address

I have been getting a whole crap of emails from different places and the always come "Dear Joseph". But then we start getting them from more and more places and I mean from every casino Las Veges, Atlantic City, Tennessee etc. I have as my thoughts as to who was putting in our email address but could never really prove it but did I get the proof. David and Harry sent and email asking us well informing us that we could update out wish list. Wish list what the hell are they talking about?
Well to make a long story short a family member has been using our email address so they won't get the junk. Can you believe it?
Like I have nothing better to do than deleat junk mail that some person who shall remain un named thinks I need? Keep it up and everyone will know who you are you will not always be nameless.
So for the last time USE YOUR OWN ******* EMAIL ADDRESS

The purge

I looked in the coat closet today and I was amazed at how many jackets, fleeces, windbreakers etc was hanging in there. So I did a huge clearing but it didn't stop there. Next I tackled Maura's closet. I made her try on everything and what didn't fit went in to a bag. The girl is left with very few long pants as most of what she had last year wouldn't even come up over her behind. She has grown a good bit this year and her weight is that of a normal child for her age. Next I went to Finnian's closet and took out all the size 4's and checked all of his pants to see what is short on him. But the time I was done for the day I have 4 bags of clothes to give to Big Brother/Big Sister. I am not finished yet I still have my closet to go through.
I have gotten to a point where less is more but when you have a child that requires so much for a normal life its hard. I have 8 canisters of oxygen tucked in to a closet. I have tricked out part of another closet just to hold some of his supplies. I have put thoes plastic bin drawers under his bed just to hold his nappies, wipes and bed pads. It seems that every square inch of space has some sort of storage put in to it.
I get told I need a bigger place yeah I know but what I really would love is a bigger bathroom or one that is more favourable for someone with disabilites. I guess I can dream.

Flu shots

Yup its that time of the year again. Time to get the flu shot. So today Joe went and got his and when Maura got out of school we took both her and Finnian to the peds and got them their flu shot. We also got the peds to check out Finnian's ear as he is pulling on it again. The doc said the ear looked great just some wax in it and may be thats what bothering him.]Of course Maura started shedding some tears even before she got her shot. Finnian got his first and took it like a champ all he did was give the doc a dirty look when the needle got stuck in him. He is great getting needles they all say its because he doesn't see the needle thats why it doesn't bother him but its sad to say its just that he has gotten jabbed so many times he is just and old pro.
Before you ask neither Eoghan or myself got the flu shot. Eoghan cannot get them as there is egg in the shot and I have never gotten a flu shot. At this point with me knowing I have food issues I am not about to take a chance. My reflux has been acting up again so I am back on my meds for it. Its funny I am so anal about Finnian getting all of his meds on a schedule more often than not I forget to take mine. I guess I just have too much going on well thats my excuse

Something is not right

The last few days we have noticed that if you wake Finnian up he will do this chewing motion and his movements are very spastic. If you let him wake up on his own it doesn't seem to happen. He has also been giving us his breakfast back to us too. That is not a pretty sight its hard to watch your childs stomach ripple and wave and then toss the contents of his stomach out all over everything. If he starts crying which the does you can hear him suck some of the crap into his lungs and thats when it get a little scary. Is it seizure activity that is causing it? who knows and I know if they bring him in to the hospital and hook him up to the EEG he will more than likely not do it.

On another note today he didn't have one of the above mentioned "seizure?" instead he had a rip roaring tonic seizure that not only affected his lower body but his whole body. I was having flash backs to when he was a baby when he did them.He aslo had a few little eye rolling episodes but they have siad in the past seizures, not seizures,seizures, not so was it I cannot say for sure as he is not on an EEG. But then again it could come up inconclusive we have had that happen on too many accounts.
Other wise he is doing great he tires to pull him self up in to a sitting position. He also loves to be on his tummy and is pushing up and kicking his legs in a froggy motion.
When we were out yesterday he not only responded to 1 questions but to 2 and the person who was walking with us was totally shocked as she didn't know he could respond to yes/no questions. She said we should get him on tape so this way we would have proof that he can do things to show the doctors. Like most they don't believe he can do things.But then again thats our Finnian. In some ways a typical child.

Diapers/Nappies/Pull Ups etc

Most children are usually potty trained by the time they out grow baby nappies. Some wear pull ups at night but you can get them to fit. But the problem is when you have a special child and the baby nappies are getting snug and then you look at the youth size nappies all that goes through your mind " crap these will not only cover his arse but his whole body too". But surprise, surprise they don't come up to his arm pits but you still go through the same trials and errors of getting the best fit especially when you have a kid with skinny legs.
Right now we are trying Prevail small briefs(nappies) you get 16 in a pack for $12.99 We have ordered some others to try but they range in price from $9.99 for 12 to 19.99 for 30. I know I can get samples but sometimes what you get in a sample pack won't be enough to see if they are the right nappies.
Oh well heres to finding the right fit big boys nappies.

My poor cell phone

The other day I was doing laundry and in my excitment to do laundry I didn't check all my pockets and my cell phone went throught the compleat wash cycle. It was only when I was putting the clothes into the dryer I found it.
Well it dried out and I was able to use it and I took all my phone number off of it. But it was doing weird things like the flash would keep going off even when not in camera mode, you could turn it off and it would turn on by itself, it would dial random numbers but it would not charge so now my poor cell phone that has been so good to me now has to be retired.
Lesson to all make sure you check every pocket in your clothes before you put them in the washing machine even your own.
The only thing I really lost on my phone was some pictures some were really cute but hey at least I got all the phone numbers off of it before it croaked.

Well I have a good case of psorasis but I got 2 scripts and hopefully that will take care of it. Got to love Dr. L he is a gas man for a doctor. Now I mean that in a good way. He has all the time in the world and asks loads of questions. I always find out new information on allergies when I see him.

Had meet the teacher night at school on Tuesday. I love the teacher that Maura has she will learn so much from her. I gave Eoghans teacher a heads up on his issues with his stomach and got to send in goodies for him when someone has a party at school. He really likes his new teacher and when he come's in from school he sits down and does his homework right away. So thats a good start for the year and hopefully he will keep it up and stay focused.

Finnian has been having some little weird things going on but we cannot say for sure if its seizures or dystonia. He has had a few night time seizures but they are short usually less than 1 min. We don't know if he has aready adjusted to his dystonia meds but the tightness is back in his left hand and he is keeping it fisted again. Next thing we have to do is get his flu shot and Maura's too. I have to make a few follow up appointments for him you know the usual 6 mths follow up's.

Wow

I havent updated lately, I cannot say I have been run off my feet busy as Eoghan and Maura started back to school on Wednesday but they had 1/2 days and Friday was their first full day. Back to normal school routine for the 2 but for Finnian that is another story. I didn't accept the placement that they offered him so in order to get him in to something more suitable I have to go to a hearing but because it can take time we will be doing our best with him at home. I have to check into some home therapies for him.
I have some pics of their first day will post them later.

My psoriasis is raging and I also have some other itchy rash out on my arms I will be going to the skin doc to see what he thinks it is. I know its not eczema its a totally different rash.
With all the things that have been going on with me I have been doing some research and there is one thing I keep coming back to that all my symptoms add up to so I am kind of wondering if I am right. It is something that is common among Irish but at the same time something that is undiagnosed most of the time. So now I wait and see if I am right.

Thursday

Well today started out with Finnian sleeping late which is not normal for him. Then our medication that gets shipped to the house every month was late its supposed to be delivered by 10 am and didn't arrive until 10:40 am. Which happened to be a good thing as our Finnian was doing alot of chewing and his eyes were rolling around so we knew he was having seizures and then he tossed his feed everywhere.The whole room smelled like Micky D's french fries. At first everyone thought the days plans were going to be cancelled but I said no we would go ahead so we got him all cleaned up and off to the pool we all went. There was a fine gaggle of us, well there was the 4 of us and Finnian's nurse Bonnie and her 3 granddaughters.
We got to the pool and Bonnie took Finnian and the youngest granddaughter to the kiddie pool and I had my 2 and the other 2 granddaughters in the big pool. After a little while Bonnie and the 2 young ones joined us. Finnian had a good time I had him in the pool and he liked bobbing around. He has not been in a pool in over 3 years as the last time he had terrible seizures but he is now on different meds so I figured to try it again. So far so good no seizures.
Everyone was tired by the time we got home. Poor Bonnie we have walked the legs off of her the last few days. But she was the one to say "Can we go to the pool again tomorrow?" So I guess everyone enjoyed themselves.

Happy 2nd Birthday Jude

Happy Birthday Jude.

The Botanical Gardens in the Bronx

Can you see the bird?

Even though it was hot today we went to the Botanical Gardens here in the Bronx. We had a great time and everyone was tired by the time we got home. They also have the Farmers Market on Wednesdays if anyone is intrested. THey had a few shades to tomatos I have never seen before and they also had purple peppers. Never seen one of thoes before.

Tomorrow we are supposed to go to the pool but we will have to see how everyones legs are feeling as it is a bit of a hike to the pool. Myself and Finnian will be fine but its the others we have to think about.

Happy Birthday Katie

Happy Birthday to a special little girl.

Happy Birthday 3rd Birthday Katie