Went to the neuro today and they want us to take Finnian to a cardiolgist to make sure that the "seizures" are not heart related. ITs not to bad I call and got him an appointment for May 27th. So he will have a EKG and an echo done. Hey I am all for ruling out something. They are still not sure that they are true seizures just because they have never gotten them on an EEG.
We aslo got the number to se a Movement disorder doc. I called but they had left already for the day so I will call back on Monday. They know some of Finnians movements are leaning towards so movement disorder some twitches and jerks he makes are not seizures so they think some form of dystonia or something on that line. So that makes 2 new docotrs to add to the list.
He had a bit of a crappy day well the tempature has gone up a bit today weather wise and of course poor old Finnian cannot handle it. Not that long ago he started to make some noise and I asked him " What's the Matter with you?" He gives me the signal that he has gone to the bathroom so I go to change him but it was into the bath tub he went. Oh wow the mess not only had he gone #1 but #2 was oozing out everywhere. Now he is all nice and clean and smelling like lemons and vanilla..
Dinner is easy tonight pizza. So must go and order it Joe is getting hungry.
Friday, April 30, 2010
Wednesday, April 28, 2010
The Struggle
This has been a hot topic across many blogs, FB, and other social networking sites. Who are are friends? I mean our true friends, Who is our family? Blood ties or cyber family?
You know we really find out who they are when a special child comes in to our lives. Some of your friends drift away and the ones that were the casual friends become THE friends. The same with blood family you don't hear about the party until after the fact. Then they make the excuse "oh didn't think it would be something that he would be up to". My family far away are our family. There are times I just wish the Atlantic ocean wasn't between us. My parents, they are our rock. THey are willing to drop everything and be there for Eoghan and Maura they even changed their plans for a trip to Ireland because of our Finnian.
Our cyber family some have become more improtant than blood family. There are times you just wished you could be there for them I mean really there not just someone on a screen. We are happy for them when they are happy, we worry when they are sick, if they are in the hospital you just keep checking for the latest update because we are worried. Then there is a part of you that breaks when you see someone got their Angel wings. There are times you wonder is it going to hurt more when it is your child.
I think the biggest thing that I struggle with is people feeling pity and sorrow for us. You know our Finnian was the biggest shock to us but he is the biggest and best thing that has happened to us. We all go through the would have, could have,should have we you get told your child is different. Its not anything you would wish on your worst enemy the struggle that our son goes through. There have been days we have pumped more meds in to him that would knock a grown man flat on his arse but all they do is make our lad sleep for a little bit. Our special angels are the innocent ones they didn't ask for this, who in their right mind would ask for a child to suffer?
So to family and friends who have drifted away I get it. May be I would have done the same if I was in your shoes but I got to walk a different path. I know its hard for you to understand how I can love knowing that my child might go to bed and never wake up or that I could watch him go into a seizure and every thing I pump into him may not be enough to save him. Or that I might hand him over at the OR door and it could be the last kiss I give him. I get it you don't want to form an attachment, you don't want to see our child suffer, you don't want to hear that we haven't slept in weeks you don't want to hear us talk about where we put that tube. Acceptance is the biggest and greatest disability not the disabilities that my child has.
So when our child gets to walk in a different life I don't know if you will be able to stroll back in to our new life as even though our child might not be physically with us he will always be a huge part of lives. But our true family and friends will always be a huge part of our lives.
So to our true family and friends we love you all.
You know we really find out who they are when a special child comes in to our lives. Some of your friends drift away and the ones that were the casual friends become THE friends. The same with blood family you don't hear about the party until after the fact. Then they make the excuse "oh didn't think it would be something that he would be up to". My family far away are our family. There are times I just wish the Atlantic ocean wasn't between us. My parents, they are our rock. THey are willing to drop everything and be there for Eoghan and Maura they even changed their plans for a trip to Ireland because of our Finnian.
Our cyber family some have become more improtant than blood family. There are times you just wished you could be there for them I mean really there not just someone on a screen. We are happy for them when they are happy, we worry when they are sick, if they are in the hospital you just keep checking for the latest update because we are worried. Then there is a part of you that breaks when you see someone got their Angel wings. There are times you wonder is it going to hurt more when it is your child.
I think the biggest thing that I struggle with is people feeling pity and sorrow for us. You know our Finnian was the biggest shock to us but he is the biggest and best thing that has happened to us. We all go through the would have, could have,should have we you get told your child is different. Its not anything you would wish on your worst enemy the struggle that our son goes through. There have been days we have pumped more meds in to him that would knock a grown man flat on his arse but all they do is make our lad sleep for a little bit. Our special angels are the innocent ones they didn't ask for this, who in their right mind would ask for a child to suffer?
So to family and friends who have drifted away I get it. May be I would have done the same if I was in your shoes but I got to walk a different path. I know its hard for you to understand how I can love knowing that my child might go to bed and never wake up or that I could watch him go into a seizure and every thing I pump into him may not be enough to save him. Or that I might hand him over at the OR door and it could be the last kiss I give him. I get it you don't want to form an attachment, you don't want to see our child suffer, you don't want to hear that we haven't slept in weeks you don't want to hear us talk about where we put that tube. Acceptance is the biggest and greatest disability not the disabilities that my child has.
So when our child gets to walk in a different life I don't know if you will be able to stroll back in to our new life as even though our child might not be physically with us he will always be a huge part of lives. But our true family and friends will always be a huge part of our lives.
So to our true family and friends we love you all.
Tuesday, April 27, 2010
Monday, April 26, 2010
Saturday
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.
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.
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.
Friday, April 16, 2010
Doctors appointments this week
Well we had a big urology check up for Finnian yesterday. They did a urodynamic test on him. He passed with flying colours. They couldn't find any thing wrong as to why at times he doesn't pee. Other than there could be some break in the signal coming back to the bladder to open and void. Or there could be a break on the signal being sent to the brain that the bladder is full.
His ultrasound of the bladder didn't show the same results as the last time which was very good. We have found that his ability to pee is connected to his seizures so he is now being written up as having a neurogenetic bladder.
Today we went to the ortho to get his hip checked out and we had x-rays done first. Well we were able to take him out of his brace and continue on as normal. The x-rays now show that his right hip looks really bad and the ortho doc wants to do it sooner rather than later and I fully agree with what I could see on the x-rays. I am not a trained professional but I have seen my share of x-rays in my time and his left hip looks great and the right one thats a whole other story. We were going to get an appointment with the John the brace guy to adjust his long leg braces but since his right hip surgery is going to be sooner rather than later we both decided to wait until the other hip is done and do all of the adjustments on the same day.
So thats all form here for now
His ultrasound of the bladder didn't show the same results as the last time which was very good. We have found that his ability to pee is connected to his seizures so he is now being written up as having a neurogenetic bladder.
Today we went to the ortho to get his hip checked out and we had x-rays done first. Well we were able to take him out of his brace and continue on as normal. The x-rays now show that his right hip looks really bad and the ortho doc wants to do it sooner rather than later and I fully agree with what I could see on the x-rays. I am not a trained professional but I have seen my share of x-rays in my time and his left hip looks great and the right one thats a whole other story. We were going to get an appointment with the John the brace guy to adjust his long leg braces but since his right hip surgery is going to be sooner rather than later we both decided to wait until the other hip is done and do all of the adjustments on the same day.
So thats all form here for now
Thursday, April 15, 2010
Thursday, April 8, 2010
Painting
I started painting last night the living room. Now with the woodwork painted nice crisp white it looks smashing if I may say so myself. I put a blue and now its not one of those soft blue and its not in your face blue( thats the colour for the kids room) what it reminds me of is Wedgwood China blue may be a shade or 2 darker. I put up my new sheers in white and nice gold curtains. I have a load more painting to do. Our room, the kids room and the kitchen.
The one thing I am not afraid of colour, I love colour. Now the kitchen is probably the most neutral in colour. It will be a beige colour the only reason is the kitchen doesn't get alot of natural light, wow if it did I could imagine seeing really mad colours in there.
The other thing about painting is I put everything back where it is supposed to go and hopefully this time I will keep it like that. Now I wouldn't bet on that I am a great one to say " Oh I will do it tomorrow" and of course it will be done but not by tomorrow.
Must go and start working on our room I will probably leave the kids room to do last as I have to paint the ceiling and thats the one thing I hate to paint. Oh well it has to be done.
The one thing I am not afraid of colour, I love colour. Now the kitchen is probably the most neutral in colour. It will be a beige colour the only reason is the kitchen doesn't get alot of natural light, wow if it did I could imagine seeing really mad colours in there.
The other thing about painting is I put everything back where it is supposed to go and hopefully this time I will keep it like that. Now I wouldn't bet on that I am a great one to say " Oh I will do it tomorrow" and of course it will be done but not by tomorrow.
Must go and start working on our room I will probably leave the kids room to do last as I have to paint the ceiling and thats the one thing I hate to paint. Oh well it has to be done.
Monday, April 5, 2010
Happy Easter
Sorry its late but I have no excuse other than not sitting down at the computer to write. Easter Sunday the kids were up early and I finally got to sleep for more than 3 hours at night. Joe did the night duty and he was a bit upset that Finnian didn't seem to want to sleep more than 2 hour at a time until he needed to be repositioned. To top it all off Finnian had a whopper of an ear infection so that in sued more crying.
Then on Easter Sunday while I was down stairs he decided to have a seizure. Well we refer to them as seizures but the medical professionals would say he had a breath holding spell. He gets quiet and his face as this weird twist to it and he goes pure white and I mean WHITE. But thankfully he didn't have a shout that still puts the heart cross ways in Joe.
They had an Easter Egg hunt in the living room and the first 2 eggs were put into Finnian's basket. The kids got all dolled up in their Easter outfits and we went over to Nanny's for dinner.Where they got more eggs. But this time they got the good stuff Irish Easter Eggs.
Our Finnian decided today that he would have another seizure this time his saliva came pouring out of his mouth, eyes rolled up into his head and he was totally unresponsive and then like as if you snapped your fingers he was out of it like nothing ever happened.
I tell you its the weather change and the ear infection that is doing it to him. With him being sick he has a lower threshold and then to top it off the weather has been beautiful with the temps in the high 60's to 70's. His body cannot adjust to the increase as he has problems with sweating. He doesn't sweat. They are not sure if it is a side effect from meds but you know the child has never really sweated other than a few beads on his lip and around his hair line.
Oh well thats life in our house
Then on Easter Sunday while I was down stairs he decided to have a seizure. Well we refer to them as seizures but the medical professionals would say he had a breath holding spell. He gets quiet and his face as this weird twist to it and he goes pure white and I mean WHITE. But thankfully he didn't have a shout that still puts the heart cross ways in Joe.
They had an Easter Egg hunt in the living room and the first 2 eggs were put into Finnian's basket. The kids got all dolled up in their Easter outfits and we went over to Nanny's for dinner.Where they got more eggs. But this time they got the good stuff Irish Easter Eggs.
Our Finnian decided today that he would have another seizure this time his saliva came pouring out of his mouth, eyes rolled up into his head and he was totally unresponsive and then like as if you snapped your fingers he was out of it like nothing ever happened.
I tell you its the weather change and the ear infection that is doing it to him. With him being sick he has a lower threshold and then to top it off the weather has been beautiful with the temps in the high 60's to 70's. His body cannot adjust to the increase as he has problems with sweating. He doesn't sweat. They are not sure if it is a side effect from meds but you know the child has never really sweated other than a few beads on his lip and around his hair line.
Oh well thats life in our house
Saturday, April 3, 2010
Results and missed the peds
Friday was Good Friday and I totally forgot that the peds office observes the Catholic holidays. I'm so bad. So we will just continue on with the drops. Even his nurse took a look and was amazed what she saw in there.
We had been at the Neruo's office last week and they had done some blood work so I called to find out what the results were like. Well his CBC is normal for Finnian. His potassium is in normal ranges and get this his sugars were low and so was his sodium but his triglycerides were HIGH. They also did a Keppra level and get this we have reduced down his keppra and his level was in normal therapeutic levels. Now when he was on a higher dose his levels were lower. That I don't understand.
It was another cranky day but with the ear that is normal. Here's hoping that the gunk will come out and give him some relief. I got spoiled when I had gotten a few nights of good sleep and now we are back to waking up again. I'm tired since his hip I think I have had a total of 6 good nights of good sleep. Oh well thats life.
We had been at the Neruo's office last week and they had done some blood work so I called to find out what the results were like. Well his CBC is normal for Finnian. His potassium is in normal ranges and get this his sugars were low and so was his sodium but his triglycerides were HIGH. They also did a Keppra level and get this we have reduced down his keppra and his level was in normal therapeutic levels. Now when he was on a higher dose his levels were lower. That I don't understand.
It was another cranky day but with the ear that is normal. Here's hoping that the gunk will come out and give him some relief. I got spoiled when I had gotten a few nights of good sleep and now we are back to waking up again. I'm tired since his hip I think I have had a total of 6 good nights of good sleep. Oh well thats life.
Thursday, April 1, 2010
Thursday
Well today started very early for me, at 1.44 am. Yup he woke up crying and it wasn't seizures it was I don't feel good cry. I finally got him back to sleep at around 6.30am this morning. Joe was off today so he got up with him so I could go and have some shut eye.
Being that everyone was going to be around to day we had decided to go to Ikea in NJ. But with Finnian a little under the weather he stayed at home with his nurse.
When we got back she had finally gotten him to sleep. He wasn't happy up, down they even went outside and all he did was whine. He didn't have any tempature, venting his belly didn't even help. His chest sounds were normal no congestion and his oxygen levels were good. At first we had decided it must be from the weather. It was beautiful here today and when the tempature goes up Finnian cannot handle the change and he can over heat on us.
Well I started asking him, "does your head hurt?" and he got quite ok we are getting some where. So I decided to have a look in his ears. Yup he has a whopper of an ear infection no wonder he was unhappy. Thankfully we have ear drops so that will hold him over until tomorrow until we go to the doctors to get regular antibotics. Now I am kicking myself as I changed his ENT surgery from the end of this month. I wanted him to be fully recovered from the hip surgery before anyone else started poking at him. Oh well this is ear infection number 4 since we were at the ENT and we will probalby have a few more befor the surgery in July Oh well never a dull moment in my house.
Being that everyone was going to be around to day we had decided to go to Ikea in NJ. But with Finnian a little under the weather he stayed at home with his nurse.
When we got back she had finally gotten him to sleep. He wasn't happy up, down they even went outside and all he did was whine. He didn't have any tempature, venting his belly didn't even help. His chest sounds were normal no congestion and his oxygen levels were good. At first we had decided it must be from the weather. It was beautiful here today and when the tempature goes up Finnian cannot handle the change and he can over heat on us.
Well I started asking him, "does your head hurt?" and he got quite ok we are getting some where. So I decided to have a look in his ears. Yup he has a whopper of an ear infection no wonder he was unhappy. Thankfully we have ear drops so that will hold him over until tomorrow until we go to the doctors to get regular antibotics. Now I am kicking myself as I changed his ENT surgery from the end of this month. I wanted him to be fully recovered from the hip surgery before anyone else started poking at him. Oh well this is ear infection number 4 since we were at the ENT and we will probalby have a few more befor the surgery in July Oh well never a dull moment in my house.
Urology
Well today we went and saw the urologist for Finnian. He had and ultrasound done and they don't see any structural reasons for his voiding issues. We also got told we are not the first to come with a child that has seizure/CP/ movement disorder questioning the voiding issue being neurological based verses structural. He also had been scheduled to have another test done where they insert a catheter and inject a dye in to the bladder to see how the muscles at the bladder opening react. In a way I hope its a good day and it will show no problem so keep your fingers crossed that it will be a good seizure control day.
Our appointments for April are already filling up so far Finnian has 3 scheduled and we are waiting to hear when his eye exam under anesthesia will be. Cannot call this week as his eye doctor will probably be off for the holidays. We put his ENT surgery off until July so we will just have to deal with ear infections until then. He still has fluid in his ear but no infection thankfully. We put it off because of the little problem he had after his hip surgery and I didn't want to have to put him though another surgery so soon.
I must call and see about his blood work he had done last week to see where all his levels are. The compounding of the prevacid is going fine and so far so good it seems to be doing ok. But then again he has stopped puking for how long we don't know. Its such a horrible cycle that he goes through and hopefully it will stay away.
Our appointments for April are already filling up so far Finnian has 3 scheduled and we are waiting to hear when his eye exam under anesthesia will be. Cannot call this week as his eye doctor will probably be off for the holidays. We put his ENT surgery off until July so we will just have to deal with ear infections until then. He still has fluid in his ear but no infection thankfully. We put it off because of the little problem he had after his hip surgery and I didn't want to have to put him though another surgery so soon.
I must call and see about his blood work he had done last week to see where all his levels are. The compounding of the prevacid is going fine and so far so good it seems to be doing ok. But then again he has stopped puking for how long we don't know. Its such a horrible cycle that he goes through and hopefully it will stay away.
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