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
Friday, April 16, 2010
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.
Subscribe to:
Posts (Atom)