Well I had all planned to do the kids pictures last weekend but as always something was up. Finnian had been sick but thankfully no seizures. I am kind of afraid to say that_-- seizures. The increase in the meds seems to really agree with him. The only thing we notice is that he looses his speech when he gets sick. Oh well just something they have to figure out with him.
Maura was as sick as a dog on Friday night so off to the doctor we went on Saturday well she has basically the same thing that Finny had but without the strep throat. By Sunday she was on the mend so downstairs to the lobby to take our Christmas pictures at the Christmas tree.
Click on the picture link to the right and you can see my handy work.
Monday, December 15, 2008
Friday, December 12, 2008
The Playlist
I know when you click on the blog the music plays but if you don't want to listen to Alison Krauss just scroll down and click on someting else.
There are a few songs on it that mean something to me, yeah I know you can all tell I grew up in the 80's but you should see how alive Finnian becomes when he hears some of these songs.
Please listen to "Scorn not his symplicity" I call this Finnian's song. I wish everyone could see him when I play it. It just shows that there is much more going on in his brain than we know. When he hears the first few note of music he taps his chest like he is saying this is my song.
There are a few songs on it that mean something to me, yeah I know you can all tell I grew up in the 80's but you should see how alive Finnian becomes when he hears some of these songs.
Please listen to "Scorn not his symplicity" I call this Finnian's song. I wish everyone could see him when I play it. It just shows that there is much more going on in his brain than we know. When he hears the first few note of music he taps his chest like he is saying this is my song.
Finnian's friends
As we go through our journey there are many more parents and children going through the same journey.
Finnian's friends are some of the people going through this journey too.
Please click on the link to the right and read about Jude and his journey and also read about Jordan and her journey.
When your children are driving you crazy and maybe your husband/wife, partner, in-laws/out-laws are just take a moment and read about Finnian and his friends and then you will see we don't take anything for granted. Sometimes the smallest things are huge achivements for our kids.
Sometimes we get thrown for a loop but the one thing we all have in common is the strength that we never knew we had, until Finnian, Jude and Jordan came in our lives.
Finnian's friends are some of the people going through this journey too.
Please click on the link to the right and read about Jude and his journey and also read about Jordan and her journey.
When your children are driving you crazy and maybe your husband/wife, partner, in-laws/out-laws are just take a moment and read about Finnian and his friends and then you will see we don't take anything for granted. Sometimes the smallest things are huge achivements for our kids.
Sometimes we get thrown for a loop but the one thing we all have in common is the strength that we never knew we had, until Finnian, Jude and Jordan came in our lives.
Dear Finnian
My sweet little boy, 4 years ago on Dec. 9th 2004 we were given shocking news. The news we were given was that God had chosen a different path in life for you to follow.He had made you special in a different way.
I was at the doctor's office on my own and I knew something wasn't right, they kept looking at your small sweet head. I found the courage to ask" What's wrong with his head?" The doctor said he saw something but he wanted to make a call and to come to see him in the office after the technician was finished taking all of the measurements. My little boy you were about 6lbs 10oz and about 19" long and yes you were a boy.
So in to the office I went to find out what was wrong. The doctor told me that your right ventricle in your brain was much larger than what it should be. He showed me what it looked like at 6mths and what it looked like now. I don't know where my confidence came from but I was going to do the best I could for you. " I said ok there is a problem so where do I go and who do I see?" "Do you know what happened?" He told me he couldn't say for sure but something had stopped the fluid from flowing out of your ventricle may be a bleed. He also had the name and phone number of a doctor he wanted me to go and see. I told him I would call as so as I had gotten home.
The hardest thing was how do I tell your Daddy that something was wrong. I sat for a while in the car thinking going over how I was going to break it to him never mind Daddy how would I tell Nanny and Granddad?
My dear Finnian I got through it and I made the phone call and our journey began.
To be honest its a journey no parent should make and its a journey no child should have to make. But life is a journey for learning and believe you me I now know more than I ever thought I would and I am still learning.
I was at the doctor's office on my own and I knew something wasn't right, they kept looking at your small sweet head. I found the courage to ask" What's wrong with his head?" The doctor said he saw something but he wanted to make a call and to come to see him in the office after the technician was finished taking all of the measurements. My little boy you were about 6lbs 10oz and about 19" long and yes you were a boy.
So in to the office I went to find out what was wrong. The doctor told me that your right ventricle in your brain was much larger than what it should be. He showed me what it looked like at 6mths and what it looked like now. I don't know where my confidence came from but I was going to do the best I could for you. " I said ok there is a problem so where do I go and who do I see?" "Do you know what happened?" He told me he couldn't say for sure but something had stopped the fluid from flowing out of your ventricle may be a bleed. He also had the name and phone number of a doctor he wanted me to go and see. I told him I would call as so as I had gotten home.
The hardest thing was how do I tell your Daddy that something was wrong. I sat for a while in the car thinking going over how I was going to break it to him never mind Daddy how would I tell Nanny and Granddad?
My dear Finnian I got through it and I made the phone call and our journey began.
To be honest its a journey no parent should make and its a journey no child should have to make. But life is a journey for learning and believe you me I now know more than I ever thought I would and I am still learning.
Thursday, December 4, 2008
Up date on our Finnian
Well our Finnian has been doing pretty good. His bad seizures are down to one every 3-4 weeks. Hopefully with the last increase in Keppra we hope 4-5 weeks but if not we know what to do.
We have an appointment on the 22nd of December with the Genetic doc. Well we have been playing phone tag with her so I decided just to make an appointment and sit accross the table from her and hear what she thinks that our Finnian might have. Blood tests I will do but if he needs anything else we will see.
Will up date on that appointment when it happens.
I hope to be getting the kids Christmas pictures done this weekend well we will see.
Thats it for now
We have an appointment on the 22nd of December with the Genetic doc. Well we have been playing phone tag with her so I decided just to make an appointment and sit accross the table from her and hear what she thinks that our Finnian might have. Blood tests I will do but if he needs anything else we will see.
Will up date on that appointment when it happens.
I hope to be getting the kids Christmas pictures done this weekend well we will see.
Thats it for now
Food Allergy tests finally done
Well our Eoghan had the last of his food allergy tests done today and the results are,
Clams, Oysters, Crab, Soybean,Buckwheat, Almonds, Peanut, Eggs, Dairy and the one that had the highest reaction was Peas. So Eoghan and myself will not be eating Beanie and Barney Peas or peas of any kind. I feel bad for him because now that we know what his triggers are we have to be careful. The best solution is total elimination of all allergic foods. So now I have to be very careful when buying any processes foods to make sure that there are none of the no-no foods in them.
The allergist said that Eoghan would benfit from a gluten free diet but we will wait and see what the GI doc has to say.
Well thats al for now
Clams, Oysters, Crab, Soybean,Buckwheat, Almonds, Peanut, Eggs, Dairy and the one that had the highest reaction was Peas. So Eoghan and myself will not be eating Beanie and Barney Peas or peas of any kind. I feel bad for him because now that we know what his triggers are we have to be careful. The best solution is total elimination of all allergic foods. So now I have to be very careful when buying any processes foods to make sure that there are none of the no-no foods in them.
The allergist said that Eoghan would benfit from a gluten free diet but we will wait and see what the GI doc has to say.
Well thats al for now
Tuesday, November 11, 2008
November News
Well since Maura got her glasses lets try to remember what has happened.
Eoghan woke up one morning screaming "my eye,My eye". Took him to the eye doctor and he had an abrasion on his cornea.He was fine again after a few days but is still on eye drops to protect his eye.
Then on the 30th of October he had his upper endoscopic to see hopefully what has been causing his tummy trouble. The doctor came out and said everything looked good but we would have to wait for the boipsy results. Well we got the results and it seems our Eoghan has Eosinophilic Esophagitis. I know, what it means is Eoghan has an autoimmune disorder that is caused by an allergic reaction to food. Now we have to go and get him tested for food allergies to see what has to be taken out of his diet,what can be limited in his daily diet and more over what his safe foods are.
Finnian had a bad seizure almost 3 weeks ago so we will be watching him again as he seems to have them every 21 to 25 days. Hopefully since his last increase in meds we can say good bye to them. Oh yeah Finnian has sat on his own now for over 2 minutes. check the pictures and you can see him.
Thats it for now
Eoghan woke up one morning screaming "my eye,My eye". Took him to the eye doctor and he had an abrasion on his cornea.He was fine again after a few days but is still on eye drops to protect his eye.
Then on the 30th of October he had his upper endoscopic to see hopefully what has been causing his tummy trouble. The doctor came out and said everything looked good but we would have to wait for the boipsy results. Well we got the results and it seems our Eoghan has Eosinophilic Esophagitis. I know, what it means is Eoghan has an autoimmune disorder that is caused by an allergic reaction to food. Now we have to go and get him tested for food allergies to see what has to be taken out of his diet,what can be limited in his daily diet and more over what his safe foods are.
Finnian had a bad seizure almost 3 weeks ago so we will be watching him again as he seems to have them every 21 to 25 days. Hopefully since his last increase in meds we can say good bye to them. Oh yeah Finnian has sat on his own now for over 2 minutes. check the pictures and you can see him.
Thats it for now
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