On Saturday I finally got a urine sample from Finnian. So I put it in the collection cup and bagged it up and then got the kids ready. So off to the doctors office we went. We took the bus as Joe had the van gone to work. The best thing came in the mail on Friday Finnian's disability pass for the bus. So I was so happy no more paying full fare for him.So we got to the peds office and dropped off the pee and then we decided to walk to Woodlawn which is not that far from the peds office. In Woodlawn we got our Irish butter, and other Irish goodies. Then we went to the playground there as they have a special needs swing there. The kids all had a blast. Finnian loved the swing and of course the faster and higher you could push him the more he squealed. I must have put on my big girl knickers that morning because I even had him flying down the slide on his own. Well the first 2 times he went down with Eoghan but after that he was flying solo. All I was doing was lying him down on the slide at the top and lifting his feet up and away he would go. When he got to the bottom I would ask "do you want to go again?" and he would sign yes.and more. So we would do it again.
It was a beautiful day so I told the kids it was time to go well I didn't want my butter to turn to soup. So we walked home. So we all got our exercise on Saturday its about 2.5 milesfrom the park to our house. Will post pictures later.
Monday, April 26, 2010
Sunday, April 25, 2010
our Anniversary
April 24th is our wedding anniversary. Today makes 11 years since we tied the knot. I think I am very lucky he has put up with me for soo long.Here we are from 11 years ago pictured with my Mammy and Daddy. We just happened to get married on my Mammys birthday so its a day I cannot forget.
I got a copy of our Wedding video transfered to DVD format as a present. It was fun looking at it. I got Joe a really nice watch as the one I got for him 12 years ago does not work any more.So he is now the proud owner of a citizen eco-trim watch. We didn't go out to dinner I just cooked some burgers and fries.
Happy Birthday Mammy/Nanny
Happy Birthday to my Mammy. Happy Birthday to Eoghan, Maura and Finnian's Nanny. Its great to be 23 today sorry I got told you are 27 today.
When do I get to tell my age like that?????????
Love All the Cats in the Bronx
When do I get to tell my age like that?????????
Love All the Cats in the Bronx
Friday, April 23, 2010
Damm it
I posted earlier that Finnian was doing good but as soon as he got home from school I got told he had a bad day. He had 3 bad seizures and the last one lasted for over 3 mins and his O2 level was in the low 80's so what was it like while he was still in the seizure. His O2 levels came back up in the 90's without having to give him oxygen.
So to hell with getting the urine sample we are just going to start the antibotics. I hope thats what is causing the seizures. You know we had gotten used of having these seizures every 12 -16 days and then we changes some of his meds and we were going months with out having them but we never had 7 of them in less than a week. So I filled his script and we started him on the antibiotic I hope thats the cause of the seizures if not I guess its back to the drawing board on the meds. We have been dealing with this type of seizure for the last 2+ almost 3 years and we have never gotten it on an EEG which sucks. But even then we would still have to guess at what would be the right meds for it .
I don't know my gut is telling me to totally get rid of Keppra and see what happens but then I know we will have to change his klonipin to some other type of benzo and its not something I want to do. I never wanted him on the klonopin full time but it was added while we weaned lamictil to get him over the hump of the change and they thought it was doing good so they left him on it.That is one wean I am not looking forward to. I still get the goosebumps thinking back to the phenobarbital wean.
Oh well we shouldn't think back over some things I guess
So to hell with getting the urine sample we are just going to start the antibotics. I hope thats what is causing the seizures. You know we had gotten used of having these seizures every 12 -16 days and then we changes some of his meds and we were going months with out having them but we never had 7 of them in less than a week. So I filled his script and we started him on the antibiotic I hope thats the cause of the seizures if not I guess its back to the drawing board on the meds. We have been dealing with this type of seizure for the last 2+ almost 3 years and we have never gotten it on an EEG which sucks. But even then we would still have to guess at what would be the right meds for it .
I don't know my gut is telling me to totally get rid of Keppra and see what happens but then I know we will have to change his klonipin to some other type of benzo and its not something I want to do. I never wanted him on the klonopin full time but it was added while we weaned lamictil to get him over the hump of the change and they thought it was doing good so they left him on it.That is one wean I am not looking forward to. I still get the goosebumps thinking back to the phenobarbital wean.
Oh well we shouldn't think back over some things I guess
I thought it would be sooooo easy
We had Finnian at the peds on Tuesday and they only thing we have to get is a urine sample. Oh it should be easy right. Wrong. He has gone through 5 yes 5 urine bags and we have not been able to get enough out of them to do a culture. We have cathed him 2 times and got nothing. I have waited and watched him and have missed so now I am watching and writing down when he does go so hopefully I will be able to get enough of a sample to get a culture done. When Finnian goes he totally empties his bladder so its no use in cathing him until you know there is pee in there. So the reason we have not been able to get enough from a urine bag is when he goes and empties his bladder there is so much that he dislodges the bag and it all goes into his diaper.
I have even tried with just having a bag and the diaper under him and we ended up with pee all over his bed and a dislodged bag and not enough in the bag. I guess he doesn't want to have his pee checked out.
THe weather has been favourable for him the last few days and he is doing better.
I went to the Honors Assembly at school today. Maura got first honors so she gets a certificate and a blue ribbon. Eoghan had done bad in a test and had missed another so he got knocked out of getting first or second honors. He knows he can do it but like me he needs to be pushed. So we are hoping for a ribbon for him at the next assembly awards.
I have even tried with just having a bag and the diaper under him and we ended up with pee all over his bed and a dislodged bag and not enough in the bag. I guess he doesn't want to have his pee checked out.
THe weather has been favourable for him the last few days and he is doing better.
I went to the Honors Assembly at school today. Maura got first honors so she gets a certificate and a blue ribbon. Eoghan had done bad in a test and had missed another so he got knocked out of getting first or second honors. He knows he can do it but like me he needs to be pushed. So we are hoping for a ribbon for him at the next assembly awards.
Monday, April 19, 2010
Well the bubble burst
We have been have a good run with out too many seizures. He has a few after his surgery and we saw another one or two but today started out with seizures on the school bus. Yup his nurse's worst nightmare seizures on the bus.Thankfully they were at the school when it happened so she just grabbed him and took him straight inside. That was as 8:50am it lasted about 2 mins. The next one happened at 11:10am and lasted about 1.5 mins. The next one was as he was getting ready to leave school at 2:15 pm and lasted less than 2 mins. The last one he had was at 5:30pm and we gave him diastat as he was really starting to form a pattern. We have checked him out and cannot find anything wrong with him his ears look great so does his throat. The only thing I have to check is his sugars and I will also see if I can get a pee sample to bring to the doctors office just incase something will show up there.
We were just getting comfortable with the "bad" seizures showing up every 2 months but now he has had 4 in one day. The only difference is he doesn't make that awful shout so does that mean they are not as bad? I don't know and you know the doctor won't be able to say as we have never gotten one on an EEG. I think we will have to push forward and see a movement doctor and see what their take is on Finnian.
Oh well thats all for now
We were just getting comfortable with the "bad" seizures showing up every 2 months but now he has had 4 in one day. The only difference is he doesn't make that awful shout so does that mean they are not as bad? I don't know and you know the doctor won't be able to say as we have never gotten one on an EEG. I think we will have to push forward and see a movement doctor and see what their take is on Finnian.
Oh well thats all for now
Sunday, April 18, 2010
The thing you have to understand
The thing about seizures is you can pump medications in to your child to keep them at bay but the slightest upset of the apple cart and it can all go away in a snap of your fingers. With our Finnian we know sickness (ie ear infections or any illness), changes in tempature ( mostly increases) all effect him. Pain is another tweaker that can cause an increase in seizures.
My goal as his mother is to keep him as well as possible and as pain free as possible. I hate having to had him over to people I don't really know in an O.R. but I do because its what is best for him and his quality of life.
It the same thing with bumping up his right hip surgery its the right thing to do for him. Do I like the idea he is going to have to go under ansetheia again? Hell no, but to put his hip in the socket the right way and take away his pain its the right thing. Would you walk around with a splinter in your foot and not take it out? I know I would probably be digging it out with a needle as soon as I could so I wouldn't have pain.
We got his cataracts removed with the hope that he would be able to see but we didn't relize that his seizures liked attacking the vision center in his brain and thats the reason he cannot see. I tried my best for him not to get a g-tube but I finally gave in and you know it was the best thing I ever did for him. We have gone from weekly visits to the peds due to congestion to visits now only when he is sick which is now every few months. We are going to get the tubes put back in his ears because being that he is blind he needs his ears to function properly.
You know I hate that I basically have a pharmacy/hospital in my house. I have medications and equipment up the wazoo but i do it all so that my Finnian has a chance at a "normal" life.
My goal as his mother is to keep him as well as possible and as pain free as possible. I hate having to had him over to people I don't really know in an O.R. but I do because its what is best for him and his quality of life.
It the same thing with bumping up his right hip surgery its the right thing to do for him. Do I like the idea he is going to have to go under ansetheia again? Hell no, but to put his hip in the socket the right way and take away his pain its the right thing. Would you walk around with a splinter in your foot and not take it out? I know I would probably be digging it out with a needle as soon as I could so I wouldn't have pain.
We got his cataracts removed with the hope that he would be able to see but we didn't relize that his seizures liked attacking the vision center in his brain and thats the reason he cannot see. I tried my best for him not to get a g-tube but I finally gave in and you know it was the best thing I ever did for him. We have gone from weekly visits to the peds due to congestion to visits now only when he is sick which is now every few months. We are going to get the tubes put back in his ears because being that he is blind he needs his ears to function properly.
You know I hate that I basically have a pharmacy/hospital in my house. I have medications and equipment up the wazoo but i do it all so that my Finnian has a chance at a "normal" life.
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