Hi!
Owen had his cardiology appointment today and the fluid they were monitering is completely gone from around his heart! What great news that is!
Owen is a little less enamored with his braces than I think he thought he would be. It will take some getting used to, but I am sure he will do ok eventually!
Keep the faith!
Jen
Thursday, February 28, 2008
Wednesday, February 27, 2008
Owen got his AFO's!
Hurrah!! With Spiderman crawling down the back of both of his braces, Owen is able to stand better and will be able to work towards walking with support! Hopefully he will tolerate them ok!
Look at how gosh darn cute he is!!
Monday, February 25, 2008
AFO's on Wednesday!
Owen will be getting his AFO's on Wednesday! I am trying to keep him excited about them-he is excited now, but I don't think he will be once he has them on and discovers he needs to wear them for 23 hours a day! (AFO's are ankle foot orthotics. They will support his ankles and provide a stretch to his tight heel cords. They will allow him to stand, so hopefully we will get the standing program started with him this week! Standing is so important for him. Steroids cause his bones to be weak, so standing will help increase the bone density. I never knew that until I worked with children with disabilities-that weight bearing activities help bone density. I saw the femur of an Olympic weight lifter compared to a normal person's femur, and the difference was really astonishing!
We are back at school after a week off-or so they say. Man-how fast 9 days can go. I did nothing. We had plans to go bowling or to the movies or something fun and none of it happened. Luckily we do have a short time off for Easter, and then the break in April, so I will (hopefully) be much more productive then...or at least go somewhere nice and do some fun things with the kids.
We are back at school after a week off-or so they say. Man-how fast 9 days can go. I did nothing. We had plans to go bowling or to the movies or something fun and none of it happened. Luckily we do have a short time off for Easter, and then the break in April, so I will (hopefully) be much more productive then...or at least go somewhere nice and do some fun things with the kids.
Thursday, February 21, 2008
The Cast is OFF!!!
Hurrah!! The cast is off and Owen is able to crawl around again! Lately, he has been getting into these silly giggle fits where he laughs and laughs-sometimes for no reason at all other than just being in a good mood! It is so cute! I'm so thankful that he is able to remain so happy.
After Owen got his cast off, he was able to go down and get fitted for his AFO's. They will be ready on Wednesday. He chose to have Spiderman on the back of both of them. I hope he doesn't hate them-he will need to keep them on for almost the whole day starting from the get go-no working up his tolerance...He goes Wednesday for his final cardiology test, as well. Thank god, that all appears to be normal now. Chemo and radiation have sooo many side effects. The radiation to his brain caused his pituitary gland to become active, and his thyroid to decrease functioning. Imagine--a 4 year old going through puberty!! He has been put on thyroid meds, so hopefully that will prevent his pituitary from kicking in...He finished up his antibiotics for the staph infection in his broviac tomorrow. Hopefully it took care of the infection! The last few times, it kept recurring-it would be so nice to not have to live in the hospital for awhile...
As predicted, this week "off" has gone by way too quickly! I don't even feel like I have accomplished much at all. Amazing how many hours can go by that just seem wasted. I need to take my Students with Disabilities Content Specialty test on Saturday-that should be the last test I will EVER need to take, unless I decide to go and get another degree--oh so tempting, but not having to write papers ever again is also quite appealing! I am also hoping have the time when I am done with grad school to pick up a pen and write creatively again--oh how my fingers and mind have been aching to create new characters and story lines...I may even begin to write about Owen and what he has gone through...
On a sad note, we learned that a little girl named Heather who we met during our journey lost her fight... We got a thank you note from Jamie's parents. There was a beautiful picture of her on the cover, and when Owen saw it, he got so excited. "There's Jamie!!" He shouted. I think I will frame it for him. Such an amazing and beautiful soul she was-what a loss the world experienced with her passing, with the passing of both Heather and Jamie. Cancer sucks.
After Owen got his cast off, he was able to go down and get fitted for his AFO's. They will be ready on Wednesday. He chose to have Spiderman on the back of both of them. I hope he doesn't hate them-he will need to keep them on for almost the whole day starting from the get go-no working up his tolerance...He goes Wednesday for his final cardiology test, as well. Thank god, that all appears to be normal now. Chemo and radiation have sooo many side effects. The radiation to his brain caused his pituitary gland to become active, and his thyroid to decrease functioning. Imagine--a 4 year old going through puberty!! He has been put on thyroid meds, so hopefully that will prevent his pituitary from kicking in...He finished up his antibiotics for the staph infection in his broviac tomorrow. Hopefully it took care of the infection! The last few times, it kept recurring-it would be so nice to not have to live in the hospital for awhile...
As predicted, this week "off" has gone by way too quickly! I don't even feel like I have accomplished much at all. Amazing how many hours can go by that just seem wasted. I need to take my Students with Disabilities Content Specialty test on Saturday-that should be the last test I will EVER need to take, unless I decide to go and get another degree--oh so tempting, but not having to write papers ever again is also quite appealing! I am also hoping have the time when I am done with grad school to pick up a pen and write creatively again--oh how my fingers and mind have been aching to create new characters and story lines...I may even begin to write about Owen and what he has gone through...
On a sad note, we learned that a little girl named Heather who we met during our journey lost her fight... We got a thank you note from Jamie's parents. There was a beautiful picture of her on the cover, and when Owen saw it, he got so excited. "There's Jamie!!" He shouted. I think I will frame it for him. Such an amazing and beautiful soul she was-what a loss the world experienced with her passing, with the passing of both Heather and Jamie. Cancer sucks.
What Cancer Cannot Do
Cancer is so limited...
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.
Cancer is so limited...
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.
Sunday, February 17, 2008
Good Day
Owen woke up in a great mood today! These last few days he has really been eating quite a bit better. I am very happy to see that. AND!! His eyelashes and eyebrows have almost completely filled in now. It is amazing how something like that can completely change the way he looks. I wonder if the hair on his head will fill in, or if he will remain bald in patches due to the radiation. I can't even begin to imagine how different he will look with hair.
If things go as planned, Owen's cast will be removed on Wednesday. That will be great so he can get back to moving around, and will be able to be fitted for his AFO's and begin the standing program he was supposed to start weeks ago.
Owen's IEP meeting is in March-kind of crazy to plan his therapies and school plan for September in March! I know how much things can change in a short period of time. Last year at this time, Owen was running around like a normal 3 year old and I had no clue that there was cancer growing inside of his brain and spine. I was flipping through old pictures on my digital camera that I need to develop (Ah-the one curse of digital cameras!!) and found some that were taken on Easter last year-a week before we took him in the hospital and our world was turned upside down. It is so strange to look at those-it doesn't look like Owen. The memory of him BC (before cancer) is fading-it is so hard to remember what he was like before. Oh, how quickly life can change...
Anyhow, he woke up this morning and said "Good morning!" all jovial. I took him to the bathroom and when he was done, put him in our bed. When he was complaining he was cold, I put my pink fleece polka dot pajamas on him and he thought that was the funniest thing ever!! He laughed for about 5 minutes, and called his brothers in to look, too!
We have had Mazy here since Friday, so our bed had Matt, me, Owen, Sam, and Mazy on it-Sam loves to lick Owen's bald head. Mazy has been funny because she is afraid of Sam (which is kind of funny because Sam is so mild mannered-I think it's simply a size thing).
We have one week off from school!! I am sure it will fly by, but the time "off" will be nice. I need to clean and work on my thesis, so I'm not sure how much down time I will have-but I will accomplish more than I would have if I would have been working.
Carpe diem!
Jen
If things go as planned, Owen's cast will be removed on Wednesday. That will be great so he can get back to moving around, and will be able to be fitted for his AFO's and begin the standing program he was supposed to start weeks ago.
Owen's IEP meeting is in March-kind of crazy to plan his therapies and school plan for September in March! I know how much things can change in a short period of time. Last year at this time, Owen was running around like a normal 3 year old and I had no clue that there was cancer growing inside of his brain and spine. I was flipping through old pictures on my digital camera that I need to develop (Ah-the one curse of digital cameras!!) and found some that were taken on Easter last year-a week before we took him in the hospital and our world was turned upside down. It is so strange to look at those-it doesn't look like Owen. The memory of him BC (before cancer) is fading-it is so hard to remember what he was like before. Oh, how quickly life can change...
Anyhow, he woke up this morning and said "Good morning!" all jovial. I took him to the bathroom and when he was done, put him in our bed. When he was complaining he was cold, I put my pink fleece polka dot pajamas on him and he thought that was the funniest thing ever!! He laughed for about 5 minutes, and called his brothers in to look, too!
We have had Mazy here since Friday, so our bed had Matt, me, Owen, Sam, and Mazy on it-Sam loves to lick Owen's bald head. Mazy has been funny because she is afraid of Sam (which is kind of funny because Sam is so mild mannered-I think it's simply a size thing).
We have one week off from school!! I am sure it will fly by, but the time "off" will be nice. I need to clean and work on my thesis, so I'm not sure how much down time I will have-but I will accomplish more than I would have if I would have been working.
Carpe diem!
Jen
Friday, February 15, 2008
Eating!!
TPN has been cut down to 8 hours a night, Owen is on an appetite stimulant, and HOLY COW, he actually ate more that I have seen him eat since September today!! My hope is that his strong desire to eat continues, and he shows more interest in actual food so we can truly start talking about removing his broviac.
He has been sleeping for a couple hours. What is sweeter than watching him sleep?? I love nothing more than having him lay across me, sleeping, feeling and hearing each sweet breath, every beat of his heart...
He has been sleeping for a couple hours. What is sweeter than watching him sleep?? I love nothing more than having him lay across me, sleeping, feeling and hearing each sweet breath, every beat of his heart...
Wednesday, February 13, 2008
Home again!
Owen came home last night, after spending the weekend in the hospital with an infection of his central line...AGAIN!! This has proven to be quite a source of infection (which apparently is common). The previous time he had an infection in his line, there were three rounds of antibiotics and hospital stays. Hopefully, this will be wiped out after this one round! There is talk of removing his line, which has both positive and negative implications. For one, he receives nutrition through his line nightly, as he does not eat enough orally to sustain a healthy amount of calories daily. If he is unable to consume orally the amount of calories he needs daily, he will need to have a feeding tube inserted. Another positive for keeping the tube in-the nurses are able to draw blood painlessly out of his central line. Since he needs to have blood draws at least once a week, this seems like the least cruel way, as he doesn't need to be poked each and every time. Also, he can receive medication through his tube-tasteless and without concern of the amount absorbed and if it needs to be readministered if he vomits.
So what are the negatives?? #1 being the obvious-it tends to be a source of infection-and once an infection hits, it is typically quite difficult to kick. The second-his site needs to remain absolutely, completely dry, so he has not had a bath/shower since it has been put in last April. (Not that he hasn't been washed, but there is nothing like soaking in a warm tub! He also has not been able to go swimming.) The dressing around his site needs to be changed at least weekly, which entailns pulling off a large, clear band-aid type material from his skin--OUCH! He does not like that in the least!
He was quite happy to be home, as we are happy to have him back home. His leg is healing quite well-hopefully his cast will come off next week. The fluid around his heart which the doctors were monitering has decreased, so that threat has too passed for the time being. Through everything, he has remained his usual jovial self. He makes me so proud and puts a smile in my heart each day.
Hope everyone has a Happy Valentine's Day!! Love as if there is no tomorrow. Never leave a loved one with words you may regret. Make sure they know how much they mean to you, as you may lose the chance to show them...
So what are the negatives?? #1 being the obvious-it tends to be a source of infection-and once an infection hits, it is typically quite difficult to kick. The second-his site needs to remain absolutely, completely dry, so he has not had a bath/shower since it has been put in last April. (Not that he hasn't been washed, but there is nothing like soaking in a warm tub! He also has not been able to go swimming.) The dressing around his site needs to be changed at least weekly, which entailns pulling off a large, clear band-aid type material from his skin--OUCH! He does not like that in the least!
He was quite happy to be home, as we are happy to have him back home. His leg is healing quite well-hopefully his cast will come off next week. The fluid around his heart which the doctors were monitering has decreased, so that threat has too passed for the time being. Through everything, he has remained his usual jovial self. He makes me so proud and puts a smile in my heart each day.
Hope everyone has a Happy Valentine's Day!! Love as if there is no tomorrow. Never leave a loved one with words you may regret. Make sure they know how much they mean to you, as you may lose the chance to show them...
Wednesday, February 6, 2008
February 6, 2008
Today I had to wake Owen up early so he could go with his father to an appointment for a check up on his broken leg. He was NOT happy about that! He wanted to do the opposite of everything I wanted him to do. He wanted to keep his wet pull up on. He wanted to stay naked. He didn't want his coat on...I guess I can't say that I blame him. I get pretty crabby myself when I need more sleep!
I think his leg is healing well. I am glad he is not experiencing pain related to his leg or heel anymore. His first cast needed to be removed because there was not enough padding between his heel and his cast, and he was complaining tremendously about heel pain. When they took the heel of his old cast off, indeed his heel was extremely red, and a blister nearly formed. They sent him home with more padding and the heel of the cast wrapped up. He ended up going in again later that same day because he was complaining that his leg hurt. When the doctor cut the entire cast off, they discovered that there was another spot that was rubbing higher up on his leg, so they changed the entire cast-to a bright green one!! After they changed his cast, he has not complained about it hurting at all. He did wince a few times when I picked him up to move him, because his leg was not healed yet, but my god, that kid is one tough cookie. The things he has had to deal with, and does so without complaining-I would like to see adults do that. Some adults complain when they have a cold. Give me a break! Try to deal with what he has had to deal with, then try to complain!
At least the doctor has said today that Owen's leg is healing nicely, and that he is able to start crawling again! That will make him happier, for sure!
I think his leg is healing well. I am glad he is not experiencing pain related to his leg or heel anymore. His first cast needed to be removed because there was not enough padding between his heel and his cast, and he was complaining tremendously about heel pain. When they took the heel of his old cast off, indeed his heel was extremely red, and a blister nearly formed. They sent him home with more padding and the heel of the cast wrapped up. He ended up going in again later that same day because he was complaining that his leg hurt. When the doctor cut the entire cast off, they discovered that there was another spot that was rubbing higher up on his leg, so they changed the entire cast-to a bright green one!! After they changed his cast, he has not complained about it hurting at all. He did wince a few times when I picked him up to move him, because his leg was not healed yet, but my god, that kid is one tough cookie. The things he has had to deal with, and does so without complaining-I would like to see adults do that. Some adults complain when they have a cold. Give me a break! Try to deal with what he has had to deal with, then try to complain!
At least the doctor has said today that Owen's leg is healing nicely, and that he is able to start crawling again! That will make him happier, for sure!
Well, that's all for now! Make this day a happy one!
Jen
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