Hi all
Sorry I haven't blogged in awhile we have been really busy and going through a lot of changes in our household, I am hoping things will slow down for a couple of weeks. So since last time that I blogged we have had two AFP results back one was 16, and then last thursday's was 9 finally. 9 is the magic number we have been waiting for, A is now normal, but his oncologist wants to make sure so we have no plans to remove his IVAD yet. He wants A to have another AFP drawn, next Thursday, and then we'll see.
For me I really want A's IVAD out. It bothers me and I know it bothers him because he knows it's there. He has not been sleeping well at all, and every time he gets upset, scared, or meets someone new I see him touch his IVAD so I know it bothers him. He is having night terrors every night and ends up sleeping with his mom. I am going to be trying some new things with him in the hope this ends soon, but nothing I have tried so far has worked. Last night Clint tried to take him and calm him down and it took over an hour before he had to give him to me to try. Finally we got him calmed down and asleep. This of course is very trying and wearing on both me and Clint so hopefully we can find some answers. I do think that once his IVAD is out he will sleep better.
When A had his 18 month immunizations they refered us to a speech therapist and early intervention program for him. He has said his first word and of course it wasn't mama or papa, as we were going down the toy aisle in superstore he pointed and said "car". He loves his monster trucks, and his hotwheels. When we were in the Stollery they refered us to a program called FSCD we never heard from them till a couple of weeks ago, and then the lady had to go out of town but we are hoping one day to meet with her, and hopefully the program will offer some help with some of the costs of A's life. We have had to admit A needs special needs as nothing fits him properly and everything you buy him has to have special considerations. He is now 43.5 lbs and 3 ft.
An a lighter note, A can still light up a room with his smile. He is a going concern, running, climbing and figuring out things. He got to go mud boggin with his daddy this weekend and loved it. He loves to play in the dirt and watch the trucks.
Thanks again for all the care and support
Carrieann and Clint
Tuesday, June 29, 2010
Thursday, June 3, 2010
Correction
Sorry I just realized I said 6 weeks from now would be mid august what I meant was mid july. So by the beginning of August I hope all to be back to normal. I was really tired today A was awake most of the night and then he was really trying his boundaries. He has found out he can climb. Well off to bed now to get some rest for tomorrow's adventures.
Carrieann
Carrieann
Progressing along
Well today was another good phone call from the Stollery, A's AFP was 24 last week, this is phenomenal it has never been this low before. Of course through their calculations that means this week it should be 12 and next week around 6. They are looking for 9 so predicting it keeps falling in 2 weeks we should be ready to start planning surgery to take out his IVAD. Which is about mid August. So by end of summer we should have our baby all back to whole.
A walked two weeks ago and he is doing quite well now. He's starting to vary his diet, and feed himself. He is not speaking yet and in two weeks we have immunizations so I am sure the nurse there will suggest speach therapy, and a nutritionist again. I guess I better let her make the referral as it seems his pediatrician is not going to. I don't know if she'll make any difference but I would hate to not have him go when it could help him. It is always another adventure with A.
Right now I am on the hunt to find him a wood potty chair for when he is ready to go. I think I'll be able to find one that will be sturdy enough for him.
He has a new babysitter he just loves. She came in yesterday and he got off the couch and walked over to her and gave her a big hug. This is such a blessing. I was pretty scared to leave him with anyone but she is really wonderful.
Well I'll be doing another blog in two weeks hopefully getting ready to start our journey to get his IVAD out.
Carrieann
A walked two weeks ago and he is doing quite well now. He's starting to vary his diet, and feed himself. He is not speaking yet and in two weeks we have immunizations so I am sure the nurse there will suggest speach therapy, and a nutritionist again. I guess I better let her make the referral as it seems his pediatrician is not going to. I don't know if she'll make any difference but I would hate to not have him go when it could help him. It is always another adventure with A.
Right now I am on the hunt to find him a wood potty chair for when he is ready to go. I think I'll be able to find one that will be sturdy enough for him.
He has a new babysitter he just loves. She came in yesterday and he got off the couch and walked over to her and gave her a big hug. This is such a blessing. I was pretty scared to leave him with anyone but she is really wonderful.
Well I'll be doing another blog in two weeks hopefully getting ready to start our journey to get his IVAD out.
Carrieann
Tuesday, May 18, 2010
Interesting Progress
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
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
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
Monday, April 26, 2010
Awesome News
Today I got awesome news A's AFP on Wednesday April 21, was 1346. Which means it has dropped a lot faster than they expected. It is just so wonderful. Now I believe it wasn't just surgery that made it drop. We are truly blessed.
A is just doing so wonderful, he is definitely thriving, I don't think when you look at him you would know in the past month he has had cancer and major surgery just a few weeks ago. He is eating normally now. He is sleeping better and doesn't seem to have nightmares as often. I notice his words are coming back and he is starting to try and stand by himself more. Soon I won't be able to keep up with him at all.
He was in the fashion show for his cloth diaper service wearing a wonderful swim diaper that is SPF of 50 and he rocked it. I heard he was hamming it up on stage (I couldn't see his face for the bucket hat) and some one commented to me that every time they looked at him he was smiling. When we were on stage together I was overwhelmed with gratitude for how lucky we are.
I will be ecstatic when they decide they can take his IVAD out and stop testing every week. It was a little traumatic for him getting his blood drawn in GP cancer clinic because I forgot to tell them that he had 3/4 size IVAD and they had to poke him twice. For me it really cements that I want to move closer to the Stollery, the care there was beyond awesome. And unfortunately we will continue to monitor and test him until he is eight or more. But we will get through it.
We continue to stay positive and strong in our little family. Thank you all again for your love, care, support, and prayers.
Carrieann, Clint, and A
A is just doing so wonderful, he is definitely thriving, I don't think when you look at him you would know in the past month he has had cancer and major surgery just a few weeks ago. He is eating normally now. He is sleeping better and doesn't seem to have nightmares as often. I notice his words are coming back and he is starting to try and stand by himself more. Soon I won't be able to keep up with him at all.
He was in the fashion show for his cloth diaper service wearing a wonderful swim diaper that is SPF of 50 and he rocked it. I heard he was hamming it up on stage (I couldn't see his face for the bucket hat) and some one commented to me that every time they looked at him he was smiling. When we were on stage together I was overwhelmed with gratitude for how lucky we are.
I will be ecstatic when they decide they can take his IVAD out and stop testing every week. It was a little traumatic for him getting his blood drawn in GP cancer clinic because I forgot to tell them that he had 3/4 size IVAD and they had to poke him twice. For me it really cements that I want to move closer to the Stollery, the care there was beyond awesome. And unfortunately we will continue to monitor and test him until he is eight or more. But we will get through it.
We continue to stay positive and strong in our little family. Thank you all again for your love, care, support, and prayers.
Carrieann, Clint, and A
Thursday, April 15, 2010
More Great News
We got more great news today. The stollery called. On April 7 when A went for surgery his AFP level was 12053. They expect it to drop by half each week, but before we left on Monday they took another AFP and it was 4610 so even less than half. I am so excited. I really believe their diagnosis now. We will continue to monitor his AFP weekly for the next 12 weeks, then hopefully he can get in for day surgery to have his IVAD removed.
He is doing well, he is still only eating formula because his tummy's a bit upset, but I am sure soon he will be eating fine. He has run a bit of a fever for the last two afternoons but they go back down and only last an hour or so. He was getting into mischief today but I don't think he's overdoing it, so at least I can keep up to him.
Carrieann
He is doing well, he is still only eating formula because his tummy's a bit upset, but I am sure soon he will be eating fine. He has run a bit of a fever for the last two afternoons but they go back down and only last an hour or so. He was getting into mischief today but I don't think he's overdoing it, so at least I can keep up to him.
Carrieann
Wednesday, April 14, 2010
Home at Last
Hi all
We finally made it home safe and sound. A woke up really grumpy yesterday but when he figured out we weren't taking him back to the hospital he got much happier. He slept some of the way home and watched Sesame Street DVD's the rest of the way. He was so happy to be home that when I brought him in the house and took him in his room for a diaper change he gave me a big kiss.
I put him down on the floor to help Clint unload the truck, thinking he was safe, and would stay put he barely touched the floor when he turned over started to crawl towards the couch and then pulled himself up to standing. Clint and I just stood in amazement. He shows very little signs of being in pain.
After A had a nap and a bath we snuggled in to watch a movie and eat some popcorn. Once the popcorn was gone A was crawling all over his parents, pulling the puppy dog's ears and generally enjoying being home. He had a great big smile on his face everytime I looked at him. I even saw a little glint of mischief. It is so wonderful.
A is going to be in the fashion show at the GP woman's show the weekend of April 23. He will be modelling swim diapers. I am so happy to be doing this, I feel it's a statement. Who would've thought a cancer patient would be in a fashion show less than two weeks after major surgery and of course it a celebration because we didn't have to do chemo. Also he had his cloth diapers delivered last night and is so happy to be back in them.
Clint and I are filled with joy and gratitude. We feel completely blessed by this beautiful resilent child that we were given. We do feel we made a difference in A's recovery by being positive and loving. We believed he was going to be okay, he was going to conquer his cancer and go on to have a long and healthy life. We still believe this and affirm it every day. I know when I got the diagnosis of Beckwith's I felt a little like it was bad news. Now I can say it was a blessing. I thank God that they had a diagnosis that gave us a testing protocol. I am grateful they have done so much research so they knew how to treat his cancer. I feel knowledge was a powerful tool for us.
Clint and I also feel that this experience with A has been postitive, it showed us what was important in life, it refined our vision of our future. We realized that love will help us through much more than anger. We take great joy in every little smile and progress in our son every little thing is that much more precious. We also felt very loved and supported so Thank you all. A is very lucky to have so many of you care about him. I feel that you all made a difference in our outcome as well.
A still has some recovery in front of him. He isn't quite eating normally yet, nor is his body quite up to functioning perfectly but I am sure it will come, we are trying to feed him stuff easy on his tummy and are very carefully transitioning him back to his former diet. Last night he was quite restless because his tummy was bothering him. But all of this is to be expected.
I hope soon to have some AFP results to confirm A is completely healthy.
Thank you all again.
Miracles do happen if you believe.
Carrieann, Clint and A
We finally made it home safe and sound. A woke up really grumpy yesterday but when he figured out we weren't taking him back to the hospital he got much happier. He slept some of the way home and watched Sesame Street DVD's the rest of the way. He was so happy to be home that when I brought him in the house and took him in his room for a diaper change he gave me a big kiss.
I put him down on the floor to help Clint unload the truck, thinking he was safe, and would stay put he barely touched the floor when he turned over started to crawl towards the couch and then pulled himself up to standing. Clint and I just stood in amazement. He shows very little signs of being in pain.
After A had a nap and a bath we snuggled in to watch a movie and eat some popcorn. Once the popcorn was gone A was crawling all over his parents, pulling the puppy dog's ears and generally enjoying being home. He had a great big smile on his face everytime I looked at him. I even saw a little glint of mischief. It is so wonderful.
A is going to be in the fashion show at the GP woman's show the weekend of April 23. He will be modelling swim diapers. I am so happy to be doing this, I feel it's a statement. Who would've thought a cancer patient would be in a fashion show less than two weeks after major surgery and of course it a celebration because we didn't have to do chemo. Also he had his cloth diapers delivered last night and is so happy to be back in them.
Clint and I are filled with joy and gratitude. We feel completely blessed by this beautiful resilent child that we were given. We do feel we made a difference in A's recovery by being positive and loving. We believed he was going to be okay, he was going to conquer his cancer and go on to have a long and healthy life. We still believe this and affirm it every day. I know when I got the diagnosis of Beckwith's I felt a little like it was bad news. Now I can say it was a blessing. I thank God that they had a diagnosis that gave us a testing protocol. I am grateful they have done so much research so they knew how to treat his cancer. I feel knowledge was a powerful tool for us.
Clint and I also feel that this experience with A has been postitive, it showed us what was important in life, it refined our vision of our future. We realized that love will help us through much more than anger. We take great joy in every little smile and progress in our son every little thing is that much more precious. We also felt very loved and supported so Thank you all. A is very lucky to have so many of you care about him. I feel that you all made a difference in our outcome as well.
A still has some recovery in front of him. He isn't quite eating normally yet, nor is his body quite up to functioning perfectly but I am sure it will come, we are trying to feed him stuff easy on his tummy and are very carefully transitioning him back to his former diet. Last night he was quite restless because his tummy was bothering him. But all of this is to be expected.
I hope soon to have some AFP results to confirm A is completely healthy.
Thank you all again.
Miracles do happen if you believe.
Carrieann, Clint and A
Monday, April 12, 2010
Our Little Miracle
So here's the deal after the pathology report came back they discovered that A has Pure Fetal Epithelial Hepatoblastoma. When they removed the tumor they got all of it and have nice clean margins, that means it is stage I pure fetal epithelial hepatoblastoma, and it's the only hepatoblastoma that is 95% treatable by surgery alone. So they saw no need to go ahead with chemotherapy, and he was doing so well otherwise they felt it was fine to release him.
Of course with cancer they don't say he is cured there is always a risk, so they left his IVAD in and he will have blood tests for the next 12 weeks to monitor his AFP levels, if they go up, or another tumor appears we could start this process all over, and A also still has a chance for the kidney tumors. They will monitor him till about age 8 for sure.
That aside this is a miracle to us, we didn't even know this type of hepatoblastoma even existed, I remember specifically asking his oncologist in the beginning and his answer was everyone gets chemo. So it was like a dream, I think my first instinct was to take my son and run, before they changed their mind, I don't know when it will really sink in. Maybe when I get him home. I know there were many tears of happiness.
I am overwhelmed with gratitude. To God, to the Universe, to the Doctor's, to clint's job so he could transfer here, to all of you who prayed, kept positive thoughts and supported us through this journey, and of course to J and his family thank you again. I am so happy my little boy doesn't have to go through the ordeal of chemo and perhaps get even sicker. I am so ecstatic I am taking home a healthy beautiful little boy, who no doubt within a few days will be raising mischief in my life again.
I am looking forward to resuming our lives again. We plan to continue to stay positive and keep praying for health for my little boy. We are going to focus on the 95% rate and let the Dr's worry about the 5%.
A is very sore and grumpy today, he had had enough of the hospital, if any staff came in he cried today. Every time you move him he cries, which is all normal considering he went through major surgery and poking and prodding. They sent me home with some pain meds for him, and I am sure he will be much more settled when we get home and get him in his own bed.
But Miracles happen and we can never give up hope. I believe a lot of A's health comes from a lot of good management from his parents so that he gets the best care possible, and a big stategy for us was stay positive and believe.
Again I can't express enough gratitude to J, who provided us with a bed, with care relief, food and even took care of the dog. He gave us so much and let us disrupt his life so much I am ever so grateful I hope one day I am able to give back as much as I have been given.
When I first considered a blog I had issues putting A's info on the net, I wasn't sure even as his mom that I was comfortable with breaking his privacy like that, but I felt that he had so many people who loved him and who were worried that I wanted them to be informed so instead of worry they could have some peace of mind that their prayers were working. I believe they did and I am glad I did the blog. We will probably shut down the site in a couple days when we are sure everyone is updated, and then I will send an email out on his progress.
But again thank for praying, thanks for caring about my beautiful little boy, I will make sure that he grows up knowing he is incredibly loved and cared for from far and wide. And a whole lot of people were cheering for him.
Love
Carrieann c/o Clint and A
Of course with cancer they don't say he is cured there is always a risk, so they left his IVAD in and he will have blood tests for the next 12 weeks to monitor his AFP levels, if they go up, or another tumor appears we could start this process all over, and A also still has a chance for the kidney tumors. They will monitor him till about age 8 for sure.
That aside this is a miracle to us, we didn't even know this type of hepatoblastoma even existed, I remember specifically asking his oncologist in the beginning and his answer was everyone gets chemo. So it was like a dream, I think my first instinct was to take my son and run, before they changed their mind, I don't know when it will really sink in. Maybe when I get him home. I know there were many tears of happiness.
I am overwhelmed with gratitude. To God, to the Universe, to the Doctor's, to clint's job so he could transfer here, to all of you who prayed, kept positive thoughts and supported us through this journey, and of course to J and his family thank you again. I am so happy my little boy doesn't have to go through the ordeal of chemo and perhaps get even sicker. I am so ecstatic I am taking home a healthy beautiful little boy, who no doubt within a few days will be raising mischief in my life again.
I am looking forward to resuming our lives again. We plan to continue to stay positive and keep praying for health for my little boy. We are going to focus on the 95% rate and let the Dr's worry about the 5%.
A is very sore and grumpy today, he had had enough of the hospital, if any staff came in he cried today. Every time you move him he cries, which is all normal considering he went through major surgery and poking and prodding. They sent me home with some pain meds for him, and I am sure he will be much more settled when we get home and get him in his own bed.
But Miracles happen and we can never give up hope. I believe a lot of A's health comes from a lot of good management from his parents so that he gets the best care possible, and a big stategy for us was stay positive and believe.
Again I can't express enough gratitude to J, who provided us with a bed, with care relief, food and even took care of the dog. He gave us so much and let us disrupt his life so much I am ever so grateful I hope one day I am able to give back as much as I have been given.
When I first considered a blog I had issues putting A's info on the net, I wasn't sure even as his mom that I was comfortable with breaking his privacy like that, but I felt that he had so many people who loved him and who were worried that I wanted them to be informed so instead of worry they could have some peace of mind that their prayers were working. I believe they did and I am glad I did the blog. We will probably shut down the site in a couple days when we are sure everyone is updated, and then I will send an email out on his progress.
But again thank for praying, thanks for caring about my beautiful little boy, I will make sure that he grows up knowing he is incredibly loved and cared for from far and wide. And a whole lot of people were cheering for him.
Love
Carrieann c/o Clint and A
Unbelievable!
I got a call this afternoon from Carrie and Clint. They had just finished meeting with A's team and were calling to update. It turns out he had a cancer that I can't remember...I'm sure Carrie will put it up in her own post...however it isn't the cancer Carrie expected and it has a 95% cure rate just with surgery. So NO CHEMO!!
They discharged a super grumpy A this afternoon and he is home sleeping now.
So such great news. I think everyone here is kind of in a joyous shock.
Clint and Carrie are going to sleep in an have a relaxing morning and they all should be home home for supper tomorrow night.
They will watch his AFP levels in his blood closely for the next few weeks just to make sure nothing was left behind after surgery but assuming that all settles down it's kind of like back to normal time for them all. So cool.
I suspect Carrie will post more details tonight. I wanted to put something up so people checking after supper would have an opportunity to share in the happiness.
Cheers
Jason
They discharged a super grumpy A this afternoon and he is home sleeping now.
So such great news. I think everyone here is kind of in a joyous shock.
Clint and Carrie are going to sleep in an have a relaxing morning and they all should be home home for supper tomorrow night.
They will watch his AFP levels in his blood closely for the next few weeks just to make sure nothing was left behind after surgery but assuming that all settles down it's kind of like back to normal time for them all. So cool.
I suspect Carrie will post more details tonight. I wanted to put something up so people checking after supper would have an opportunity to share in the happiness.
Cheers
Jason
Monday Morning
Well A and I are almost ready to head back to the hospital. We had a very relaxing night at Uncle J's, after a fabulous comfort meal of fried chicken made by Auntie Verna, we both had baths and snuggled in to bed. It was a much more peaceful night, no monitors or people waking us up.I think that yesterday did tax him a bit, he is showing more signs of pain but nothing extreme. Again he is doing remarkable well.
Today we will do some bloodwork and hope for the pathology report so we can begin chemo. I'll keep you all updated as I can.
Carrieann
c/o Clint, and A
Today we will do some bloodwork and hope for the pathology report so we can begin chemo. I'll keep you all updated as I can.
Carrieann
c/o Clint, and A
Sunday, April 11, 2010
Sunday
Today I have wonderful news. A is doing so well he has been released from surgery to oncology. Oncology is really waiting for pathology reports before moving forward so we are going out on an overnight pass to J's tonight. Again I am amazed that he has recovered so quickly. I hope he does as well in the next stage of his journey.
A is only on advil for pain and has had all other things removed except his stable IV line which will stay in till the end of all his chemo. His magnesium was a bit low so they are giving him an infusion before we leave today. He ate some green beans just fine for his first real solid food in 5 days. He doesn't seem to be in a lot of pain as he was trying to stand in his crib today. His incision is healing wonderfully.
I can't tell you the gift it is to hold your child unencumbered. We are getting lots of smiles, and even a few little laughs. He was flirting with the night nurses when they all came around last night. I have such hope for his continued journey.
I also really want to thank J, I made such a good choice in Godfather's. My little family would be truly lost without him and the rest of the family. He has made this journey much easier on us in too many ways to count. Thank you for being you J. Thank you for choosing to be his Godfather when I asked.
Love to all
Carrieann, Clint and A
A is only on advil for pain and has had all other things removed except his stable IV line which will stay in till the end of all his chemo. His magnesium was a bit low so they are giving him an infusion before we leave today. He ate some green beans just fine for his first real solid food in 5 days. He doesn't seem to be in a lot of pain as he was trying to stand in his crib today. His incision is healing wonderfully.
I can't tell you the gift it is to hold your child unencumbered. We are getting lots of smiles, and even a few little laughs. He was flirting with the night nurses when they all came around last night. I have such hope for his continued journey.
I also really want to thank J, I made such a good choice in Godfather's. My little family would be truly lost without him and the rest of the family. He has made this journey much easier on us in too many ways to count. Thank you for being you J. Thank you for choosing to be his Godfather when I asked.
Love to all
Carrieann, Clint and A
Saturday, April 10, 2010
Saturday Afternoon
Hi all
A has continued to thrive today, his kidneys are working well to take his fluid off, although they had to give him some magnesium through IV and he's getting a bit puffy again. We sat him up for awhile to help his little body along. He's napping now, but soon I will settle him in the rocking chair for a snuggle with his mom.
He has played peek a boo, and patty cake with Auntie Verna. He has been looking at his books and charming the hospital staff. The only monitor he has left is his oxygen saturation monitor and that is going so well we expect it to be removed tonight as well. Which is good because he's still trying to reach that toe.
He certainly seems to be in no pain or discomfort. Smiles and sounds are coming easy to him. We put up a poster of love for him and he is enjoying it. I took some pictures to email but I forgot my cord on J's table so clint will get it for me tomorrow.
I think I'll go looking for some button up PJ's for him in case he gets to leave his bed and maybe a wagon so he can start to have some road trips around the ward. There is a wagon in oncology but it's in pretty high demand. Right now though he's pretty happy with his snuggles, books and dvd's.
He continues to amaze me, and the hospital staff, it's really hard to believe he had major surgery 4 days ago. The doctor came by and reaffirmed that they will probably turn him over to oncology tomorrow. When we were at home I was so scared at how he would handle the side effects of chemo and now I truly wonder if it will really slow him down at all, seeing as he has recovered so well post op. I pray it goes well and soon we will be able to take him home.
Thank you all again
Carrieann c/o Clint, A, and "The Godfather"
A has continued to thrive today, his kidneys are working well to take his fluid off, although they had to give him some magnesium through IV and he's getting a bit puffy again. We sat him up for awhile to help his little body along. He's napping now, but soon I will settle him in the rocking chair for a snuggle with his mom.
He has played peek a boo, and patty cake with Auntie Verna. He has been looking at his books and charming the hospital staff. The only monitor he has left is his oxygen saturation monitor and that is going so well we expect it to be removed tonight as well. Which is good because he's still trying to reach that toe.
He certainly seems to be in no pain or discomfort. Smiles and sounds are coming easy to him. We put up a poster of love for him and he is enjoying it. I took some pictures to email but I forgot my cord on J's table so clint will get it for me tomorrow.
I think I'll go looking for some button up PJ's for him in case he gets to leave his bed and maybe a wagon so he can start to have some road trips around the ward. There is a wagon in oncology but it's in pretty high demand. Right now though he's pretty happy with his snuggles, books and dvd's.
He continues to amaze me, and the hospital staff, it's really hard to believe he had major surgery 4 days ago. The doctor came by and reaffirmed that they will probably turn him over to oncology tomorrow. When we were at home I was so scared at how he would handle the side effects of chemo and now I truly wonder if it will really slow him down at all, seeing as he has recovered so well post op. I pray it goes well and soon we will be able to take him home.
Thank you all again
Carrieann c/o Clint, A, and "The Godfather"
Comments Posting
Hey All,
Carrie updated the site so you can now post comments more easily. When you click on the comments link at the bottom of any posting it takes you to the comments page. You can type in your comment and then choose "anonymous" as your profile. This will allow anyone to post comments without having the hassle of signing in. Maybe just remember to put your name at the bottom of you comments so everyone who looks knows who is cheering.
Cheers
Jason
Carrie updated the site so you can now post comments more easily. When you click on the comments link at the bottom of any posting it takes you to the comments page. You can type in your comment and then choose "anonymous" as your profile. This will allow anyone to post comments without having the hassle of signing in. Maybe just remember to put your name at the bottom of you comments so everyone who looks knows who is cheering.
Cheers
Jason
Saturday Morning
I have to start this post by stating that I am amazed by the resilence of my child.
Also to mention that A is so big they don't have his size of diapers here they only go up to size 5 so he is in small adult diapers. Last night he was retaining over 4 lbs of fluid, and with his allergies he puffed up so much he looked like a little sumo wrestler. I insisted he get benadryl, and it was a bit of a struggle but I ended up talking to his surgical resident on the phone and he said give it. Within 20 minutes his puffiness started to come down and he started to move his fluid as well.
Today he is wonderful. Maybe too good, he has pulled off his chest monitors, he was chewing on his nasal prongs, and he tried to reach his oxygen saturation monitor on his toe, he couldn't reach it so everyone who comes in he shows it to them in the hopes they will remove it. He wanted to reach his dvd player buttons so bad he actually rolled over on his stomach, which is amazing considering how much they opened him up. I almost had a heart attack. He scared himself but was no worse for the event.
We weighed him this morning and he has lost about a 3/4 of a kilo of fluid. We changed out his bed linens, and we had a long cuddle, he immediately fell asleep in my arms and I cried in gratitude. I never thought 3 days after surgery I would be holding him so comfortably, he was completely unhooked. It is short of miracle.
Today he only has to have his oxygen monitor on, and he is getting some advil for the pain. He may have to have some phosphates but early bloodwork indicates he is doing well so maybe not. His liver is functioning well. His surgical team feels tomorrow they will release him into oncology's care, which won't mean much change for us except different doctor's and we go from recovery mode to chemo mode. This is easily 3 days earlier than expected. I feel great hope that we will take him home in a week.
He has given his daddy a smile, and his nurse even got a little laugh out of him. Soon he'll be running around that ward. I don't know if I could be so happy with all that has happened to him he is truly an amazingly wonderful soul. I feel there are great things ahead of him.
Thank you all again for the care, love, support, prayers and positive thoughts.
Mom, Dad, A and The Godfather.
Also to mention that A is so big they don't have his size of diapers here they only go up to size 5 so he is in small adult diapers. Last night he was retaining over 4 lbs of fluid, and with his allergies he puffed up so much he looked like a little sumo wrestler. I insisted he get benadryl, and it was a bit of a struggle but I ended up talking to his surgical resident on the phone and he said give it. Within 20 minutes his puffiness started to come down and he started to move his fluid as well.
Today he is wonderful. Maybe too good, he has pulled off his chest monitors, he was chewing on his nasal prongs, and he tried to reach his oxygen saturation monitor on his toe, he couldn't reach it so everyone who comes in he shows it to them in the hopes they will remove it. He wanted to reach his dvd player buttons so bad he actually rolled over on his stomach, which is amazing considering how much they opened him up. I almost had a heart attack. He scared himself but was no worse for the event.
We weighed him this morning and he has lost about a 3/4 of a kilo of fluid. We changed out his bed linens, and we had a long cuddle, he immediately fell asleep in my arms and I cried in gratitude. I never thought 3 days after surgery I would be holding him so comfortably, he was completely unhooked. It is short of miracle.
Today he only has to have his oxygen monitor on, and he is getting some advil for the pain. He may have to have some phosphates but early bloodwork indicates he is doing well so maybe not. His liver is functioning well. His surgical team feels tomorrow they will release him into oncology's care, which won't mean much change for us except different doctor's and we go from recovery mode to chemo mode. This is easily 3 days earlier than expected. I feel great hope that we will take him home in a week.
He has given his daddy a smile, and his nurse even got a little laugh out of him. Soon he'll be running around that ward. I don't know if I could be so happy with all that has happened to him he is truly an amazingly wonderful soul. I feel there are great things ahead of him.
Thank you all again for the care, love, support, prayers and positive thoughts.
Mom, Dad, A and The Godfather.
Friday, April 9, 2010
Friday Afternoon
A has been moved to room 18 on 4E3. Visiting hours are 11 am to 8 pm and now that he has a roommate they have to be adhered to except for mom, dad and guardians. They have been wonderful to us here, even the nurses are amazed at how much all the surgery team and doctors keep looking in on him. He has had a few bumps in the road but is doing wonderful. He only is receiving oxygen therapy right now, and a little advil and codeine for pain. We just drew blood work so hopefully that comes back all good. We are going to have clint bring some of A's blankets from J's because they think he may be a bit allergic to the hospital sheets. He is a bit puffy and was retaining a bit of fluid but through team work we are getting it under control. He is eating well and watching his sesame street dvd's. I better get back
Carrieann
Carrieann
Friday Morning
A is on the oncology ward now, his room is 4E3-06. He spent a very peaceful night. This morning though they had to take away his morphine, he is low on phosphates and he needs phosphates to regenerate his liver, but morphine and phosphates can't go in the same vein, so it was poke him again or take it away. He was a bit grumpy after it was gone, but they gave him some codeine and he is resting right now. His tummy is a bit distended, he hasn't had a bowel movement yet, so it hard to say if he's having normal pain or gas pain. We'll figure it out though. I have already talked to the Dr and the surgical team this morning, they are terrific, the surgical team has left a lot of his care up to my discretion and have assured me if I need them to call. So I know A is getting the best care possible. They are amazed he is doing as well as he is. He is very strong, my little baby boy. Thanks again for all the care, concern, love and support.
Carrieann c/o Clint and A and the godfather.
Carrieann c/o Clint and A and the godfather.
Thursday, April 8, 2010
Alexander on the Move
Just spoke with Clint and Alexander has been released to his own room on the oncology ward. This is great news as it has a bed for Carrie, play room for A and other amenities. He has eaten a bunch today and Clint says he looks really good. Heading up to visit shortly but expect nothing too new to share tonight.
The Godfather
The Godfather
Thurs Afternoon
Mommy found some internet access. Alexander is doing much better now, immediately when I showed up they pulled up a chair for me and let us cuddle for at least an hour. Rounds were done and I was very impressed, it was like we were all a part of a big conference, they listened to my concerns and address them immediately. So Alexander has lost about 3 lines into his body this morning, but more importantly he has had 6 ounces of formula which calmed him down immensely and off he went to sleep. He had a bit of a visit with Treena, and then unfortunately they shut down PICU to everyone because of a procedure, we are still waiting after about 2 hours to get back in. Oh yeah his blood gases and they problems they had overnight were getting better, so hopefully if they find us a room he will be moved to a quieter room. We got a quick visit with our little friend from GP who is also in the oncology dept and got good news that they should be able to come home for the weekend. Which is so wonderful, that little boy has come a long way and gives me hope.
Thus AM
I spent the night with Alexander. Hopefully gave Carrie a chance to catch a bit of wind before the ensuing days. He had a very long night...as did his Godfather. Nobody got sleep and he definitely was uncomfortable. He could only have a limited amount of pain control last night as his oxygen and breathing were a little lower than they'd normally allow if giving Morphine. So he had to tough it out through more pain than either of us would have liked him to feel. He also hates his lines and nose clip (for oxygen) so it was a constant battle to keep his hands away so he didn't pull the lines out. He's not big on being held down so it was kind of a give and take evening. I'd take away his ability to lift his arms very high, he'd give me a lot of grumpy about having to live with that. The staff were really wonderful to him and did what they could given his options. It was hard on them because he would be somewhat willing to calm if I was there but if I left for a washroom break or water break I'd come back to him being in a turmoil and it took time to calm him again.
I also noticed if other babies in the ICU were in distress he would stress. One family's child lost their battle this morning and it took everything I could muster to keep him from losing it. He was so distressed by the commotion and the energy of them trying to work on her. Very sad moment for so many people in the unit.
Carrie and Clint came up this morning and he was doing a bit better. His oxygen was getting a bit better and I think he was so exhausted from fighting all night that he seemed like he might sleep a bit. Though he knows me I have to imagine it will help him today to get mom hugs and also to get some food. He hasn't eaten for about 36 hours so must be starving.
As of this morning they are thinking maybe another day in ICU just because of his need for supplimental oxygen. Strength certainly isn't his issue I can attest to that. He even managed to deek me and the nurse out and pulled out one of his IV lines so he hasn't lost reflexes either.
My gut sense is that he is ok and is just working his way out of a pretty tough surgery. I'm hopeful with those hugs, food, maybe some rest today that he'll make big steps. Also hoping with all that stuff he'll get his oxygen levels up a bit so he can get some help with pain control...which also should help him along.
Off to try and sleep. I'll post more in the evening as there is no internet access at the hospital. Mind boggling in this day and age.
Cheers
Jason
I also noticed if other babies in the ICU were in distress he would stress. One family's child lost their battle this morning and it took everything I could muster to keep him from losing it. He was so distressed by the commotion and the energy of them trying to work on her. Very sad moment for so many people in the unit.
Carrie and Clint came up this morning and he was doing a bit better. His oxygen was getting a bit better and I think he was so exhausted from fighting all night that he seemed like he might sleep a bit. Though he knows me I have to imagine it will help him today to get mom hugs and also to get some food. He hasn't eaten for about 36 hours so must be starving.
As of this morning they are thinking maybe another day in ICU just because of his need for supplimental oxygen. Strength certainly isn't his issue I can attest to that. He even managed to deek me and the nurse out and pulled out one of his IV lines so he hasn't lost reflexes either.
My gut sense is that he is ok and is just working his way out of a pretty tough surgery. I'm hopeful with those hugs, food, maybe some rest today that he'll make big steps. Also hoping with all that stuff he'll get his oxygen levels up a bit so he can get some help with pain control...which also should help him along.
Off to try and sleep. I'll post more in the evening as there is no internet access at the hospital. Mind boggling in this day and age.
Cheers
Jason
Wednesday, April 7, 2010
Day 1 Summary
Hello All,
Here is a bit more up to date information. Alexander did great today. This morning very early he was up and off to the hospital. They did the prep and he did great. He had to tough it out a bit when they put in the IV but that went quick and then they gave him some "happy juice" and things were pretty mellow. Surgery went from 8 am till about 2 this afternoon. They removed a significant part of his right lobe of the liver, his gall bladder and also managed to free up a vessel that was keeping his left testicle from descending. He did wonderful and came through the surgery looking pretty good.
Tonight he is in ICU with a fair amount of sedation. We saw each of the doctors and they were all really happy with his progress. His oncologist also stopped by and said they took some samples from his liver to confirm the diagnosis but they won't be back for a couple days. Once those are back they'll have a better idea of his cancer treatment going forward.
Tonight he sleeps...tomorrow likely a pretty medicated day. They'll see how he is doing on Friday as they ease off the meds.
Apparently they expect him to be up and moving by day 3. He'll be pretty tender but they are good with him bathing, moving and generally being cute as he sees fit.
With some luck they will move him to a regular ward room tomorrow. They thought even today because he did so well but there weren't any beds so its ICU for tonight. I think it's a blessing because Carrie can come home and just sleep tonight knowing he is getting round the clock attention. I'm thinking once he gets up and running tomorrow it will be tough to slow him down.
Clint and I are heading up for a bit of a visit tonight...hopefully giving Carrie a night to rest and sleep. WE don't really expect too much more info other than he's sleeping. Expect a post maybe tomorrow afternoon once we have a better idea of when he gets a regular room.
Carrie will be there by herself most of the day so if you want to day visit she will be at Pic ICU on the third floor of the Stollery. She said visits would be great.
Thanks everyone for checking in on his wellbeing.
The Godfather
Here is a bit more up to date information. Alexander did great today. This morning very early he was up and off to the hospital. They did the prep and he did great. He had to tough it out a bit when they put in the IV but that went quick and then they gave him some "happy juice" and things were pretty mellow. Surgery went from 8 am till about 2 this afternoon. They removed a significant part of his right lobe of the liver, his gall bladder and also managed to free up a vessel that was keeping his left testicle from descending. He did wonderful and came through the surgery looking pretty good.
Tonight he is in ICU with a fair amount of sedation. We saw each of the doctors and they were all really happy with his progress. His oncologist also stopped by and said they took some samples from his liver to confirm the diagnosis but they won't be back for a couple days. Once those are back they'll have a better idea of his cancer treatment going forward.
Tonight he sleeps...tomorrow likely a pretty medicated day. They'll see how he is doing on Friday as they ease off the meds.
Apparently they expect him to be up and moving by day 3. He'll be pretty tender but they are good with him bathing, moving and generally being cute as he sees fit.
With some luck they will move him to a regular ward room tomorrow. They thought even today because he did so well but there weren't any beds so its ICU for tonight. I think it's a blessing because Carrie can come home and just sleep tonight knowing he is getting round the clock attention. I'm thinking once he gets up and running tomorrow it will be tough to slow him down.
Clint and I are heading up for a bit of a visit tonight...hopefully giving Carrie a night to rest and sleep. WE don't really expect too much more info other than he's sleeping. Expect a post maybe tomorrow afternoon once we have a better idea of when he gets a regular room.
Carrie will be there by herself most of the day so if you want to day visit she will be at Pic ICU on the third floor of the Stollery. She said visits would be great.
Thanks everyone for checking in on his wellbeing.
The Godfather
Quick Update...All is good
Quick update. Alexander is out of the surgery and things went well. He is in ICU and looks very good. There are more details to follow once Carrie and Clint talk to the doctors but they are happy with how he did, he looks great, and is just kind of working out of the anaethesia at the moment.
We'll likely have more for you in a couple of hours time.
Jason
We'll likely have more for you in a couple of hours time.
Jason
Wed Mid Day Update
Hey All,
Alexander went in for his surgery at 8am. His prep went awesome and the staff was great. Current update is that he is doing well and will be in for probably another 3 hours. Carrie asked me to let you know she'll get some info out as soon as he is done. Her cell isn't on in the hospital so calling or texting won't work.
They had hoped to not actually send him to ICU afterwards but there is a bed shortage in the regular ward so it looks like a day or two in ICU. This is a bit disappointing because Carrie could have stayed with him if it was regular ward but the up side is that he'll get a bit of extra attention in ICU so we are going with it as a blessing.
Thanks!!
Jason
Alexander went in for his surgery at 8am. His prep went awesome and the staff was great. Current update is that he is doing well and will be in for probably another 3 hours. Carrie asked me to let you know she'll get some info out as soon as he is done. Her cell isn't on in the hospital so calling or texting won't work.
They had hoped to not actually send him to ICU afterwards but there is a bed shortage in the regular ward so it looks like a day or two in ICU. This is a bit disappointing because Carrie could have stayed with him if it was regular ward but the up side is that he'll get a bit of extra attention in ICU so we are going with it as a blessing.
Thanks!!
Jason
Tuesday, April 6, 2010
Tues Night
Quick update. I don't know if you noticed but you can publish comments on any of the postings we put up. You'll see a comments link at the bottom of each posting. If you click on it and follow the directions it allows you to join this group. I found it a bit confusing because it asks you to create a google account and there are criteria on what constitutes a google account but if you kind of work through it mostly it makes sense.
Posting comments is a great way for Clint and Carrie to quickly see your support. It's also a nice way for you all to see all the support coming in from different people.
Thanks to all who are looking in.
Cheers
The Godfather
Posting comments is a great way for Clint and Carrie to quickly see your support. It's also a nice way for you all to see all the support coming in from different people.
Thanks to all who are looking in.
Cheers
The Godfather
A's surgery
Well here we really go, they phoned today with the time for A's surgery. He is first case, so we have to be at the hospital at 6 am. I hope it won't be too long of a wait as we can't feed him after midnight. It really brought it home to me that it is going to happen. We have had a bit of a reprieve staying at J's and enjoying Easter. It's so hard to believe my little man is going for major surgery tomorrow. He looks so healthy. For those of you who don't know here's the plan as far as I know. A has stage I hepatoblastoma or liver cancer. Tomorrow they will remove 1/3 to 1/2 of A's liver. He will have a stable IV line, and a bile drain put in. He will have a nasogastric tube for feeding for awhile. He will probably be sedated for awhile also. For the first few days he will be in ICU, where I can visit but not stay overnight with him. I am unsure of visiting restrictions right now. Then he will be moved to general pediatric ward, where they supply a cot in his room for me to sleep with him. If all goes well recovery is expected to take a week, then he will be moved to oncology where he will have his first round of chemotherapy. If this goes well he will be in the hospital about a week when hopefully we can take him home.
A's prognosis is very good because we caught this very early, I thank god for his doctor's. They diagnosed A with Beckwith Wiedemann Syndrome, which then put him on the protocol to check his alpha feta protein levels every 3 months. A is very healthy, most would say thriving, he is 34.5 inches and 40lbs of love and smiles.
Thank you all for your care, concern and support, it has been invaluable to us at this time. We will try and keep this as updated as possible.
Carrieann Marcicki
c/o Alexander, Clint and "The Godfather"
A's prognosis is very good because we caught this very early, I thank god for his doctor's. They diagnosed A with Beckwith Wiedemann Syndrome, which then put him on the protocol to check his alpha feta protein levels every 3 months. A is very healthy, most would say thriving, he is 34.5 inches and 40lbs of love and smiles.
Thank you all for your care, concern and support, it has been invaluable to us at this time. We will try and keep this as updated as possible.
Carrieann Marcicki
c/o Alexander, Clint and "The Godfather"
Sunday, April 4, 2010
Here We Go!
Welcome everyone to A's new blog. It's Jason aka: "The Godfather" setting this first post. I don't know how we are going to work this but between myself and the rest of the Edmonton crowd we'll try to keep this up to date so you know what's happening with A and his family. Today was Easter at the Winspear. We went to the music extravaganza and Alexander loved it. He laughed and smiled and swung his arms to the music. He seems to like the drums. For the rest of the day he was drumming on anything he could find that would make a sound. Apparently drums for one of his birthdays....big strong drums....sorry Carrie.
Carrie and Clint know that you will want to send your support and best wishes. Please do that as often as you'd like. Carrie wants you all to know she will appreciate each one but likely won't be able to respond so look here for updates as we will try to keep everyone in the loop via the blog.
Thanks to everyone for your support already.
Jason c/o A and his parental units. :)
Carrie and Clint know that you will want to send your support and best wishes. Please do that as often as you'd like. Carrie wants you all to know she will appreciate each one but likely won't be able to respond so look here for updates as we will try to keep everyone in the loop via the blog.
Thanks to everyone for your support already.
Jason c/o A and his parental units. :)
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