Just a little information

My wonderful 9 year old Eoghan pointed out that in the last post I spelled coloured wrong. I should have spelled it colored, so I was told. You see, I didn't grow up here in the USA I grew up in Ireland. Even after living here for 20 years I still have an Irish accent well its softer now but its still here. I remember years ago when I worked in the Traditional Irish Bakery on Bainbridge Ave here in the Bronx I wrote a sign stating " Opened Labour Day Times 6.30 am to 3pm" Everyone that came in "oh you are just opened Sunday hours". But then a friend came in and said your sign is wrong I stand back and looked, well I couldn't see what was wrong at the same time a few other cstomers said the same thing. So a bit embarresed I asked whats wrong with it? I got told that I spelled Labour wrong it should be Labor. So needless to say I was a bit red in the face. Then one of my die hard regular customers said "The sign on the shop says Traditional Irish Bakery so she is being traditonal and spelling it the traditional way". So I still do things the Irish way.

Below this post is a wonderful story some may even say an Angel tale. I have come across some beautiful works something I might have read with rose coloured glasses on before Finnian and said " Oh yeah thats nice" . But since Finnian some of these "works" really hit home. Its like now I can see with out the rose coloured glasses on and they hold a different meaning. Maybe it just helps us to deal with the challenges that we face in a sweet way. But at the same time you can't help but wonder why, why us. What were we missing in our lives that we were given a child with needs.

They don't follow any child rearing books on the market even though we still read them and feel horrible because our child isn't doing what the books say. Once we get over the shock, the sadness, the anger and other depressing feelings of self doubt and everything else that runs through our minds we change. We become the mother,nurse,doctor,cheerleader, advocate we start speaking another language IEP's, BID,TID,EEG's, mg's, ml's and as needed. Its sad when you sit in the doctor's office and they speak to you as if you were a medical professional and you understand every word they say, no more you have to say " what does that mean". You spend hours on the computer researching every symptom that the child shows and you get your hopes up that you the mammy have found what is wrong with your child but then the balloon gets popped he has some symptoms but not them all. you push for every test because having a "name" will make it easier. Then you take a step back and see the beautiful child, the child that even some doctors just scratch their heads because they don't know. Its like why can my child take mega doses of meds and be on a special diet and still have seizures. May be we are on the wrong ones but we have to try everything. When you have a child that has every type of seizures under the sun which meds do you try. What is the normal call for most kids with the same seizure types your child has doesn't work on your child what do you do. You just try another.
At the end of it all our children are the innocent ones because they don't know how different they are. They are a special gift some even miracles because they have achieved things we never thought they would.

The Miracle Factory

Once upon a time, three Angels were busily working in the mircle factory.They were responsible for wrapping up all the little mircles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly. One day, however, down the converyer belt came a little miracle that made the Angels pause. " Oh my," said the first Angel " this one's uhm...well..different." "Yes, he is unique" said the second Angel. "Well I think he is quite special," said the first Angel "but I don't think he will quite fit our standard wrapping procedures." And the second Angel added, "And we know he's special, but will everyone else?' "Not a problem." said the third Angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special he is. "What a wonderful idea!" replied the others. So they searched the shelves high and low for their finest paper, and their most delicate ribbons. When they were done, they stood back and admired their work. "Beautiful!" they all agreed. "Now for our blessings," said the third Angel"for its time for him to go." "I will bless him with innocence and happiness," said the first Angel. " And I will bless him with strength to face the many challenges that lie ahead" said the second Angel. "And I will bless him with an inner beauty that will shine on all who look upon him" said the third Angel. Before sending him off the third Angel, who was very wise, gently tucked a note inside. And it said:
Dear Parents, Today you have received a very special gift. And you may be disappointed, angry and hurt. But please know that he comes with many blessings, And, while there may be pain, he will bring you much joy. He will take you in a very difficult journey, But you will meet many wonderful people. He will teach you patience and understanding, and make you reach deep inside youselves to find a source of strenght and faith you never knew you had. He will enrich your lives, And touch the hearts of all who meet him. He may be fagile, But he has great inner strength. So please handle him with care, give him lots of attention. Shower him with hugs and kisses. Love him with all your heart, and he will blossom before your eyes. His spirt will shine like the brightest star fo all to see. And you will know that you are truly blessed.

We are home

Well everything went good today at Eoghan's upper GI scope. We got to go in early as there were cancellations. He did great I'm not saying it because he is my child. He told the nurse it wasn't his first time and he knew what was going to happen. He was happy that they let him pick out the scented face mask he wanted he chose strawberry. He had to be intabuated because the other anaesthesia they would have given him they couldn't give it because it contained eggs. they asked what part of the egg he was allergic to the white or the yolk I don't know all I know is he is allergic to eggs and I wouldn't give him either just in case he is allergic to both. The scope looked good just like the last time but know we just have to wait for the biopsy results to see if he is eosinophilic free. We could have the results maybe on Tuesday but they will definitely have them by Thursday. We were discharged and on our way out when he threw up they brought him back and we had to wait for another while. After he threw up he felt great and kept asking when are we going home. So we are home and all he wants to do is eat. I keep telling him he has to take it easy or else he might be throwing up again. He said he doesn't care he is hungry.

Looking for pictures

Hey family and friends I am looking for pictures I have gotten some but looking for more.
Doing a family collage for my hallway and I also want to do a special one for Finnian.
For Finnian's I am looking for pictures of his special friends this will be put over his bed just to remind us that we are not alone on our journey
Thanks
Ger, Finnian and the Cats in the Bronx

I had to go digging looking for papers today so I can have it when they call form the hospital. Shows how much I was thinking because there are extra copies in Finnian's folder. The papers I was looking for are the ones that show that Joe has an enzyme problem which he is effected by succinylcholine which is a short acting anesthesia. Joe is a homozygote carrier which means he got one gene form each of his parents so Eoghan Maura and Finnian are one gene carriers. they probably would not have a reaction like their Dad has to that anesthesia but its always better to be safe than sorry.
I remember when Finnian was in the ICU and I was telling them they cannot use one type of anesthesia on him to insert the breathing tube I couldn't remember the name but thankfully one of the nurses picked up on my description and was able to tell them and as soon as he said Succinycholine I said thats the one. Its not something that is used on kids that much but in an emergency it can be used.

The next 2 weeks are going to be busy for me well the boys too. We start off on Thursday with Eoghan going in for his upper GI scope with biopsy to check out his Eosinophilic disorder. Yup the boy has to be put under anesthesia that is scary for any parent but we always bring the papers to show the enzyme problem that Joe has to a certain anesthesia. Eoghan could be at risk because it is a hereditary trait. Then the following week finnian has two appointments on the second of June. Eoghan goes to the ortho doc on the 3rd to get his back checked becasue the peds thinks he has the start of scolosis between his shoulder blades. Then on the 5th Eoghan goes back to the eye doc to get his eyes checked hopefully his perscription won't be changed. Then on the 9th Finnian goes back to the GI and maybe we will be able to get Eoghans results of his biopsy the same day. then on the 10th our Maura graduates form kindergarten.
I also have to get intouch with the school district as we have to do Finnians IEP for school. i also found a walker that might benfit Finnian so I have to call to see if we can get to see it in person and see if we could get it covered under the insurances. Oh yeah Eoghan also has to get his allergy shots not bad he only goes once a month now. So I have a busy time comming up but its always something in our house.

We had a quiet weekend. Finnian is more or less back to himself. He has a bit of a cough and seems to be producing a lot of drool. So now we have to be careful because of aspiration, that's the last thing we need. So he is back on all of his respiratory meds to prevent anything sticking in there in his chest. His ears look great but then again we couldn't see anything bad in there before the diagnoses of double ear infections.
We decided to go to the beach this evening just to walk along the boardwalk but the beach was closed. We couldn't believe it but when I got home I looked it up and the beach hours are until 8 pm. I have never had this happen we go to the beach and get turned away because they are enforcing the closing time. But you know we got out of the house for a little while.

We finally know whats been wrong with Finnian

Went back to the peds office today as our Finnian is still not himself. Last night his nose started running just a little bit and then his temp went up but only to 100.2 so something is finally cooking. Got to the doc's office and it was very busy. I signed in and waited when they relized it was Finnian that was back again they brought us right in. Once inside we had to wait for a room and we got Dr. Q. He checked his ears and said no , he checked his throat and said maybe but it would not cause the discomfort he was in. He checked his belly and his G-tube site and said all is good. CBC was done again and still nothing was found. I described how Finnian was made comfortable in a semi reclining position and as long as you kept moving he was fine. He said "just one more test" and it was it. He did a tympaney test and it showed that our poor boy did indeed have sore ears. Yes he has double inner ear infections and they are very painful so out of the office with 3 scripts and straight to the pharmacy we went. Got the scripts filled and home we came and he got dosed up good. Its now peaceful no cyring ,moaning so hopefully now he will be on the mend. See we do know when something is not right I knew he was in pain.

Spring school pics

Handsom Eoghan

Cute Maura.

I was happy with their pictures. Eoghans has a little flash reflection in his glasses but over all its still a great picture. Maura is cute and it really shows the real Maura.

Why does the child cry?

Since Tuesday our Finnian has not been Finnian. Had him at the docs and the only thing they could say something viral and wait. But the child has been cyring well I chould say whining/crying all since Tuesday. Its heart breaking because when you know there is somthing wrong with your child and the medical professionals can't seem to pin point what is wrong. I think I have slept a total of 5.5 hours since Tuesday. I would go without sleep to find out what is wrong with him and I am trying to make him as comfortable as possible. He is no longer small he has legs that go on forever and at 34 lbs feels like he is 50lbs. When I pick him up he now hits my knees with his toes.
Well its back to the peds with him again tomorrow and get another CBC done to see if somrthing has shown up. Spoke to his Neuro today they think he might be reacting to the increase in the Keppra but I don't think so we have been higher on the Keppra in the past and he was never like this. Every mother knows their child and his crys are that of pain but pain to what? I am just worried as he does have an enlarged ventricle and I am afraid that pressure might be buliding up and of course its a holiday weekend and Finny always throws us for a loop on a holiday weekend. May I am just thinking too much becasue of the lack of sleep. But any parent always wonders why, what ,if I what if, and the lists goes on.

Had to go to school and pick one up today

Well today Finnian's nurse called to say Finnian was not himself and crying like he is in pain. He had been fine in the morning laughing and just being Finnian. When I got there all the kids said ". "Hi Finnian's mommy" He looked miserable so I said first stop doctors office. So off we wnet to the peds office/ The only thing he could say was he has alot of gas in his tummy. No tempature, ears and chest were clear. the did a CBC on him and it just showed he has a virus but no infection. So I asked about seizures affecting his tummy. Well his peeing issues seemed to have resolved but his tummy bothers him alot. We do know his peeing issues were seizure related so maybe his tummy problems are also connected to the seizures. Will call the doctor tomorow and fly it by them and see what they have to say about it. But I can tell you I am going to have a long night so he is not going to go to school tomorrow its not fair to Finnian nor to his nurse nor to the kids and staff at school either. So thats the news for today

Can you believe it?

The kids all went off to school this morning so I was catching up on the ironing and on the phone to the Mammy when I got a call from the school. No it wasn't from Finnian's school it was from Eoghan and Maura's school. It was the school nurse. Get this Eoghan was sent to the nurse office because he was sneezing alot in class. The nurse said she had taken his tempature and it was normal and he didn't seem sick other than sneezing She said she put a hot pack on his forehead and he sneezed a few more times and he was able to blow his nose. She said it was probably his allergies and I agreed and told her to send him back to class. I told her not to worry if he was sick he would not have gone to school but the kid has very bad allergies which he gets shots for and now takes Zyrtec because of everything blooming. My allergies were acting up today too and I even had to put in eye drops so I would't scrub my eyes out of my head.
Everyone is so afraid becasue of the Swine flu but come on its the season for allergies so some kids will sneeze, wheeze, cough and snort but it doesnt mean its the flu.
Aaggghhh

Aidan's Confirmation

Joe , Aidan and Eoghan

Joe and Aidan

Aidan and his Dad ( My big brother)

Aidan

Aidan made his Confirmation on Saturday and Joe was his sponsor. Joe was very honored that he was asked.Here are some pictures.

Doctor check up

Had Eoghan and Maura at the Doctor yesterday for their annual check up. Just have to wait for their blood results otherwise everything is good with Maura. Eoghan on the other hand has to go to see the ortho doc because he thinks he has the begining of scolioses. I got an appointment with Finnys ortho doc for him so we go in June.
Its always something in my house if not Finny going to some Doc it seems like Eoghan goes .

We don't know what has come over our Finnian the last few days but he is making more and more sounds and trying so hard to talk. He hasn't been this verbal since his hospital stay in September. But then again he was pumped full of drugs kept sedated and on a vent for a few days back then. Its funny sometimes when he seizes he loses some of his abilities but usually over a week or two he gets them back. He had a crappy Wednesday and an even crappier Saturday with seizures and then on tuesday afternoon all these sounds start comming out of his mouth.With seizures you don't know may be he needed these 2 crappy days to shock his brain in to working ? Who knows but I am very happy with all the sounds that are comming out of his mouth

Well things went fine on Sunday Mother' Day. Finnian was in a great mood and interacting with everyone. You should see how his face lights up when Grandad talks to him and he tries so hard to talk back. Its was such a nice day and we were outside I had my head screwed on right for a change and even had sunscreen for the kids. I put it on all three of the kids but I forgot to put it on Finnian's face he got a little pink but not burned so he is getting good colour.
Even after the rough day on Saturday Finnian was really in great form.
Spoke to the Nurse today and we both agreed to increase the Keppra again by 125mg in the morning so now we have to remember he takes 1375mg am, 1250mg afternoon and 1375mg pm along with all the other medications he takes.We just have to wait and see how this increase will effect him hopefully it will be positive.if not when we go back in June we might have to change something. Its funny I can remember every medication he has been on how much and for how long he was on it what had worked and not worked for him but yet I cannot remember to eat my breakfast in the morning.

Today is a bit of a funny day for Finnian. He as had 2 seizures and is very sleepy. He has been pulling at his ear and it doesn't look infected but he has a little fluid in there I guess his tube is blocked again. Will wait and see what happens well thats all we can do. His sugars are good and so are his ketones. His ketones have to be checked because he is in the keto diet.
Oh well we will ride it out and see.

Happy Mothers Day

Just want to wish all the mothers out there


HAPPY MOTHERS DAY

Had to go and pick Finnian from school on Wednesday he was having seizures and his nurse had to give him Diastat. She had called about 9:45 am to say he had a seizure and was still a little funny but they would wait and see what would happen. I got a call later to say he had 4 more and she gave him the Diastat so I went and picked him up. He was fine for the rest of the evening. SO I guess we stopped thoes suckers before they really caused a problem.
He was back at school to day and did great. Its funny he is getting to the point now where he squirms all over the place. We haven't seen him to his in along time. So tonight in a blink of an eye he basically launched himself of the couch and ended up face down on the floor. I ran and checked him out before I moved him and at the age of 4 years 3 mths and 11 days old he got his first boo boo. Yup he gave himself a bloody nose. He cried for a few seconds and he said Maaaaaaaa. All I said to him " Did Finny go boom?" and he laughed.
Hopefully this is one of the many firsts that Finnian will accomplish well he also got his first bloody nose so he did two firsts tonight and hopefully more.

Finnian eating an ice pop

Took this on my camera today so sorry its sidewards.He really had fun eating his sugar free ice pop

Finnian having "one" of his seizures

This is the shout he makes when he as his big seizures. When we hear it everything gets dropped and you run to him.