Monday,Monday

Well today started off good all the kids off to school. Got 7 loads of laundry done but I still have to fold some. Went and got the two from school and when we got back Finnian was home with Bonnie. The usual "were you a good boy today?" the answer no. He was very clingy to Bonnie at school and didn't want to do PT. Now our boy might not like speech but he usually is good with PT.Because he likes his PT lady. Oh yes our Finnian is a ladies man.
When he got home he had to be suctioned and put on the nebulizer all due to congestion. He has been fine since.Sunday he had to be suctioned and put on the nebulizer too. Watch he goes to the pulmo doc on Thursday and he will be fine. It nevers fails. I just don't want what happened to him in September to happen again so any little cold or cough I keep a better eye on it. At the same time I hate to have to give him more meds he is on enough with out more to it.
Lets see what tomorrow will be like.

Red Balloons for Jordan

This evening at 5:30pm Bronx time we released red balloons in memory for Jordan. For more pictures go to our pictures the link is to the right.

We have nice weather today.Our Finnian is back to normal well his normal again. He is gone off to school and so are the other two.
There was great excitment yesterday when Eoghan came out from school. He got student of the week. So today he got to go to school on his regular clothes. He had been working hard all week and hoping he would get student of the week. So well done to our Eoghan.
Was talking to the nurse from the doctors office they always check in after Finnian has had a bad seizure. I just asked how his blood work was as they had done regular blood work on him in the hospital as well as the other tests. She kind of paused and said have I spoken to to the genetic doc. I told her no not yet that Dr.B said it would be about 4 weeks before she would have everything back. the nurse said "oh". So I guess something showed up but his regular blood work was good his keppra levels and such. The doctor said 4 weeks so I am going to wait I don't want to just get some of the results I want to get all the results. We have waited 4 years for answers so another 2 weeks is not long to wait.

I hate this weather

Well today it is 44 degrees and the sky is very dark. It looks like it could pour at any minute. We all know what happens to our Finnian. Yup thats right seizures. Well he is playing hooky to day from school. He had alot of poopy nappys last night which for Finnian is great because he is always needs help to go. He aslo has a little bit of a cold so he is back on his nebulizer. He is a bit cranky but last night when I vented him his tummy was sour so we will just have to keep an eye on him. He has just gained the weight back that he lost the last time he was sick.
I hope the rain will clear out soon

Our Blog

I started this blog to keep the family updated about our Finnian but at the same time it was an outlet for my feelings. Sometimes you just cannot talk about what you are feeling but at the same time you could sit and write a book if there was time to put pen to paper. This is an outlet. Through this blog and many sites I have come in contact with some amazing parents and children. Its comforting to find someone like you out there someone else on a journey. But the hardest part is when you find out that the child got their Angel Wings. This happened today when I found out that Jordan got her wings. I felt like my heart got ripped out of my chest. To the Rowe Family my heart goes out to you.
I never thought that my ramblings would help others. Today I got an email from a father thanking me for my ramblings. Gary you gave me hope today when you shared your journey. Gary came from Ireland with his Katie to get her the treatment and care she needs. They are in Chicago at Childrens Memorial. You can look under Finnian's Friends and read about Katie's journey.

Jordan got her Angel Wings.

Today I got a shock well I should say my heart got broken when I opened my email.
Jordan Rowe one of Finnian's friends past away in her sleep on March 23rd 2009.
She was 3 years old.
Rest in Peace Jordan.

For her Memorial we let free red balloons for Jordan.

Happy 6th Birthday Maura.
Our Maura is 6 today. She was happy that today is the first day of spring and it is also her birthday. Guess what it was snowing this morning big huge flakes. She was so excited it snowed for her birthday.
Party on Sunday at Mikes house for her. Will take pictures of her then.

Seizures again

Well today our Finnian had a rough time at school today. he had a few small seizures but nothing to worry about as it was raining. This is normal for him.
But tonight he had a whopper of a seizure. Everyone came running for me Joe included. As I came up the hallway I could hear the shouts. Eoghan doesnt like the shouting seizure so he was a little upset. Maura and Joe are just standing looking at Finnian.
The usual I grab the bag and start pulling everything out. I gave him diastat and hooked him up to the pulse ox. This one was a little different as it is usually his O2 rate that drops but this one his heart rate was dropping. It was more like a murmur every few mins it would drop and pick up again at a normal rate.
He is now back to himself as he is wrestling the pillow. It is funny to watch.
I wonder will we ever figure out the seizures. One week down three more to go to see if they found out any answers from his tests.
Ger

There is nothing new to report. Finnian had a great day at school today. But we will have to watch him as the weather is supposed to get very warm again. Wednesday it is supposed to be 60 degrees and we all know how our Finnian reacts to the change in tempature increase in seizures.
Hopefully this won't happen but we will keep an eye on him.

Now we wait.

Well they kept our Finnian in an extra night so we came home on Thursday. His seizures are much the same so there is no change in his medications which is always good. Now his spinal tap went very well even the doctor was very impressed. he just lay and smiled through the whole thing. They took 16mls of fluid which sounds like alot but is really not. Some of the fluid is being checked for a metabolic disorder they are leaning to an amino acid defunk. They are also doing other tests which I cannot remember. They also did an arterial blood draw which will also be tested for many things. The Mayo Clinic will test the spinal fluid for the presence of the ALT enzyme. The only thing is they don't have anything to compare it to as it is not something they need to look for in the spinal fluid. Fingers crossed the enzyme is there in any amount would be a good outcome. They also froze some of his spinal fluid so just incase in 6 mths a new test comes about they can test our Finnian for it and not have to do another tap.
So now we have to wait for about 4-6 weeks for results and hopefully we will get answers.
Having a name won't change our Finnian because our Finnian will always be our Finnian.
So now we wait.

Hospital again

Well our Finnian is in the hospital again. This was a scheduled visit he got hooked up to the EEG today and tomorow he goes for his spinal tap. The are testing him for a metabolic disorder. They are pointing to one but they are hoping this will give them the answers they need to say yes he has.........
We are not the only family on this journey to find the "name" for what our children has. Will it give us the answers we have a name for their disorder or will it put us on another path "oh no he has that".
The best thing we can do is love our child for who he is and provide the best care that we can for him because he did not ask for this. The best is if we get a "name" we will be able to hopefully go in the right direction for treatment. It won't make him normal but hopefully make Finnian progress if not then thats the Big Man's wishes.

Update

Well things were a little off for our FInnian on Thursday and Friday. His nurse didn't know what was up with him but I knew he was having alot of electrical activity but not showing physical seizures. But I had to wait until we could see him having seizures before we could give him his Diastat. We were wondering if we would have to call off the surprise party for Dad but we didn't.
I spent Saturday and Sunday morning getting the house in order. The worst thing I do is Idon't put everything back were it should be. I am the one that always say "I'll do it later" but later never comes. I should have people comming over all the time and then my house would be in order. Yeah right.
The kids are happy about their new cousin and she shares the same birthday as me. So I can never forget her birthday.
All things are a go for Finnian tomorrow for going in to the hospital for his EEG and his spinal tap. Hopefully we will get answers and he won't be such a mystery to all of his doctors.
Ger

The Surprise 70th Birthday Party

Well we pulled it off and I even had my kids in on it. Today we called Dad to wish him a Happy Birthday and my wonderful big boy Eoghan asked Dad "Will I see you later Granddad you are coming to my party?"
Eoghan laughed and told me yes he will be here. So everyone was here waiting and he finally came over to eat so he thought. So in he comes and tells me about Martin and Ann's new arrival and then he goes in to the living room and everyone shouts" Suprise Happy Birthday" Well I think he would have prefered to be somewhere else and not be the center of attention.

Happy 70th Birthday Dad(John).

Thanks everyone who came and thoes who sent birthday wishes.

New Arrival

Lauren Marie Cosgrove

Congrats are in order for Martin and Ann on the arrival of their new baby girl.
Congrats to big sister Ashley and big brother Mark on the arrival of their new baby sister.

Happy Birthday Eoghan

Wow my first born is 9 years old today. Where has the time gone?
Happy 9th birthday Eoghan