So I guess this post is mainly for information for those of you following this blog. Throughout this journey with my son I have learnt lots about dealing with health care. When they diagnosed A with Beckwith Weidemann Syndrome and decided that he had to have ultrasounds every 3 months, they asked me to fast him for 8 hours. This didn't make sense to me so I asked questions about it, the first time they said well 4 hours then. The next appointment they said 8 again. Finally I asked the nurse at the stollery to find out how long they make children fast for the same ultrasound, she said they don't have any restrictions for children 5 and under. So today at A's ultrasound I started asking questions of the receptionist, her answers to begin with were we have restrictions and that's just the way it is. When I told her about the stollery and if I could get my ultrasounds read in edmonton she said no. I persisted with her, and said I was told the fasting was about his gall bladder and that has been removed, finally she said ask the technician. I asked the technician her answer was if his bowels were full we could look but we wouldn't see as well, I pointed out he hadn't had a bowel movement since I fed him at 8:30 last night. So I didn't see that being a factor, I told her about the stollery as well and she said we'll again we could look but we wouldn't see as well. I explained to her that A has special medical considerations and will have to have the ultrasounds every 3 months for the next 6 1/2 years. So I really needed an answer if something could make my life easier I was all for it. So she said she'd talk to the head radiologist. Who of course was not there at 7 am but at 9 am the receptionist phoned me and she had talked to the radiologist and A no longer has to fast because the liver and kidney's are not effected by fasting. They have now made a note in his file. So my persistence paid off. This was an issue for us because quite often A wakes in the middle of the night and has part or all of a bottle of milk. Every time I have worked to remedy this something else happens and it starts again. When he was in the hospital they were waking him up often and so he has had issues finding his rhythm again. Even last night he slept from 9 pm to 4 am when he woke up he needed a change and wanted a bit of milk, which I gave him he then went back to sleep for the next 2 hours. They never even noticed at the ultrasound. The thing is if I hadn't given him the milk he wouldn't have gone back to sleep and by the time we got to the ultrasound he would've been really grouchy and he wouldn't have laid still for the ultrasound. So I am happier now that he doesn't have to fast.
On closing note A did awesome for this ultrasound. I was a little concerned because his tummy is still a little sensitive and if you really try and get a look at it he pulls his shirt down and puts his hands in the way so I wasn't sure how he'd do with the ultrasound today. I am glad it's over for another 3 months.
I hope if any of you have to deal with the medical community I hope you ask enough questions to make things easier for you. I think it's too bad that I had to work that hard to get the answer, but I am glad I had the persistence to get it.
Carrieann
Tuesday, May 18, 2010
Monday, May 17, 2010
More Fabulous Progress
Well I just got off the phone with our nurse at the stollery, and she had some more wonderful news this week. A's AFP was 88 this week. It is just plummetting. Before this all started his lowest AFP was 70. Normally it should be around 9. She expects about 3 more blood draws and we should be there, so that is about 6 weeks. Then we will have to wait about a month to get a surgery date to take out his IVAD.
I am very hopeful that by the end of summer my little man will be back to normal and back on track. He took one step by himself the other day, and then promptly fell down. But it's the first time he's even tried to walk by himself. I bought him runners and make him wear them all day, this seems to help his interest in walking. Sure hurts though when he steps on my foot.
He is not speaking yet but continues to make lots of noises, he also has a great comprehension of what we are saying to him. Whether or not he choses to listen is another thing. He makes tons of noises and loves when we read him his bed time story.
It always amazes me how much he loves to laugh and smile. If you laugh he laughs, and his laugh always comes from his toes. It sure is cute. He also loves to dance, whenever there is music on the TV he is rocking out.
He won't sleep the night in his own crib, he insists on sleeping with his mom. So we are going to be working on that soon too. I knew it was a bad idea to let him sleep with me but what do you do when your baby is having bad dreams and hurting?
Tomorrow is his ultrasound, so after that I will be working on getting him to eat more adult food instead of baby purees. He is weaned off formula now so we need to expand his diet.
The problem with all of this is my child is just like his mom, stubborn. He likes what he likes and he doesn't think you should change it. So his mom has to be just a bit more stubborn, but she has lots of years of practice.
Well I will post again in two weeks or when I get his ultrasound results.
Thanks again for all your love and support
Carrieann, Clint and A
Well I just got off the phone with our nurse at the stollery, and she had some more wonderful news this week. A's AFP was 88 this week. It is just plummetting. Before this all started his lowest AFP was 70. Normally it should be around 9. She expects about 3 more blood draws and we should be there, so that is about 6 weeks. Then we will have to wait about a month to get a surgery date to take out his IVAD.
I am very hopeful that by the end of summer my little man will be back to normal and back on track. He took one step by himself the other day, and then promptly fell down. But it's the first time he's even tried to walk by himself. I bought him runners and make him wear them all day, this seems to help his interest in walking. Sure hurts though when he steps on my foot.
He is not speaking yet but continues to make lots of noises, he also has a great comprehension of what we are saying to him. Whether or not he choses to listen is another thing. He makes tons of noises and loves when we read him his bed time story.
It always amazes me how much he loves to laugh and smile. If you laugh he laughs, and his laugh always comes from his toes. It sure is cute. He also loves to dance, whenever there is music on the TV he is rocking out.
He won't sleep the night in his own crib, he insists on sleeping with his mom. So we are going to be working on that soon too. I knew it was a bad idea to let him sleep with me but what do you do when your baby is having bad dreams and hurting?
Tomorrow is his ultrasound, so after that I will be working on getting him to eat more adult food instead of baby purees. He is weaned off formula now so we need to expand his diet.
The problem with all of this is my child is just like his mom, stubborn. He likes what he likes and he doesn't think you should change it. So his mom has to be just a bit more stubborn, but she has lots of years of practice.
Well I will post again in two weeks or when I get his ultrasound results.
Thanks again for all your love and support
Carrieann, Clint and A
Tuesday, May 4, 2010
Good News Update
Hi all
For those of you wondering I will keep this blog active until we get A's IVAD out, but the post will only be once every 2 weeks.
We got more great news today, last week A's AFP was 546 so it's really dropping, and after conferring with his oncologist, we have decided he only needs blood draws every second week, which takes lots of stress off of me, and him.
Last week was a very traumatic blood draw for A and he was upset for a couple of hours later, we had to do some thinking and research and hope to minimize this trauma now. It is so hard because he gets poked so often I can't have him freaking out every time, for the next 8 years. So hopefully our strategies will work.
A is doing really well, this week he has discovered his hands and Clint is pretty sure he's saying hand. Today he took a couple of steps by himself for his Auntie Chrystal but mom didn't get to see. He's trying to climb up on the couch and can climb down by himself. He is still a chronic button pusher and quite often weighs getting spanked with the satisfaction of pushing buttons.
He loves to look at himself in the mirror and recognizes mom and dad in pictures.
Yesterday he took mom and dad out to dinner for their anniversary. One good thing about all his travels he is very well behaved in restaurants.
His is my ray of light and hope. Again it overwhelms me at times how lucky we to have this beautiful soul in our lives.
Carrieann
For those of you wondering I will keep this blog active until we get A's IVAD out, but the post will only be once every 2 weeks.
We got more great news today, last week A's AFP was 546 so it's really dropping, and after conferring with his oncologist, we have decided he only needs blood draws every second week, which takes lots of stress off of me, and him.
Last week was a very traumatic blood draw for A and he was upset for a couple of hours later, we had to do some thinking and research and hope to minimize this trauma now. It is so hard because he gets poked so often I can't have him freaking out every time, for the next 8 years. So hopefully our strategies will work.
A is doing really well, this week he has discovered his hands and Clint is pretty sure he's saying hand. Today he took a couple of steps by himself for his Auntie Chrystal but mom didn't get to see. He's trying to climb up on the couch and can climb down by himself. He is still a chronic button pusher and quite often weighs getting spanked with the satisfaction of pushing buttons.
He loves to look at himself in the mirror and recognizes mom and dad in pictures.
Yesterday he took mom and dad out to dinner for their anniversary. One good thing about all his travels he is very well behaved in restaurants.
His is my ray of light and hope. Again it overwhelms me at times how lucky we to have this beautiful soul in our lives.
Carrieann
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