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My wife asked me to write something for her blog so here it goes. She said I should write about my “feelings” and about our daughter Megan and/or Down Syndrome. I don’t know why she wants to know about my feelings. I think my feelings are not that interesting and most of the time I suppress my feelings so deep I don’t even know what I am feeling. For example, when my mom had her last stroke, when my aunt was diagnosed with breast cancer, when Megan went to get tested for some disorder, I always feel nothing. I have a tendency to “know” everything will be OK. I think I have some kind of internal defense mechanism that hides my worries, fears, etc. from surfacing, which works out good because my wife seems to be always worried about something.
My “feelings” about Megan are the same as they are for all my kids. I love my kids and my wife and I feel lucky everyday that I have the family I do. My “feelings” about Down Syndrome are more complicated. As Megan grows up I feel more and more that Down Syndrome is no more then something that Megan has just like she has blond hair and blue eyes. I expect Megan to show people that she can do things they don’t expect. I hate when people say she won’t get married or won’t go to college. I tell everyone she is going to be a famous astrophysicist who will win a Nobel Prize for discovering worm-holes that allow for trans-galactic travel. There are things I hate about DS, mostly the way it effects my wife. I hate that my wife spend so much time thinking about it. She is worried about people’s prejudices against Megan. She worries about heart problems that she never got. She worries about leukemia, autism, so many things I could never come up with them all.
So that’s how I feel. I am having a hard time surfacing my feelings and just as hard of a time articulating them. Bye, Bye.
My “feelings” about Megan are the same as they are for all my kids. I love my kids and my wife and I feel lucky everyday that I have the family I do. My “feelings” about Down Syndrome are more complicated. As Megan grows up I feel more and more that Down Syndrome is no more then something that Megan has just like she has blond hair and blue eyes. I expect Megan to show people that she can do things they don’t expect. I hate when people say she won’t get married or won’t go to college. I tell everyone she is going to be a famous astrophysicist who will win a Nobel Prize for discovering worm-holes that allow for trans-galactic travel. There are things I hate about DS, mostly the way it effects my wife. I hate that my wife spend so much time thinking about it. She is worried about people’s prejudices against Megan. She worries about heart problems that she never got. She worries about leukemia, autism, so many things I could never come up with them all.
So that’s how I feel. I am having a hard time surfacing my feelings and just as hard of a time articulating them. Bye, Bye.
Tuesday, October 30, 2007
1.When Megan laughs she squints so small you can’t see the whites of her eyes. She scrunches her nose and her tongue sticks out. It is the cutest thing imaginable.
2.Megan has denim colored eyes and on a gloomy foggy day they are always what stand out most. She has the most beautiful eyes and very prominent brushfield spots.
3.Megan’s hair is so smooth and silky and beautiful, she has the hair I always wanted. During the winter months it turns shades of brown and in the summer months she looks like a beach bum blonde.
4.Megan asks for a drink by making a hard “k” sound and signing milk. She has also passed this on to her sister and she asks for a drink the same way. Good thing I am always around otherwise they would go thirsty because nobody would have a clue what they were doing or saying.
5.When Megan is tired she talks non-stop, I call her jabber jaws. She will tell you she wants fwench fwies and chitcken and wants to watch Dora and Caillou. She loves to cuddle while she does this.
6.Megan loves to read, when she is ready her butt will back right up and plop in your lap, we always say she needs a beeper on that thing…she will start by looking up at you and saying “ready”…she loves to turn the page and say the last word on every page. She always closes the book and says “the end”
7. Megan loves to be helpful, just the other night she swung a large glass of ice tea in Olivia’s face because she was thirsty…I said she loves being helpful yet is not very graceful and so the help is sometimes more work for me but I LOVE IT!
8. Megan absolutely loves watching her brother get on the bus every morning, if I let her she would so go with him and be ok….
9. Every day Megan gets off the bus she offers up her kisses and says “Bye Guys” to all her friends. Melts my heart daily.
10. When we are walking in to the house after getting off the bus Megan always says “where Olivia” and I tell her she is sleeping, she responds with a “no…no more sweeping” and I have to bribe her not to wake her sister. Offering Caillou usually helps me win this battle.
11. While watching TV Megan always stands at attention with her hands behind her back…in her pants. As much as I try and correct this behavior she continues to do it.
12. I put on Megan’s sure steps and shoes about 50 times a day. She will ALWAYS remove them as soon as you are not looking. She also has her sister helping her out every once and awhile as I usually catch them in the act while Megan is removing her right shoe, Olivia is always working on the left….however Olivia always seems to keep hers on.
13. Megan is a petite eater, she is very careful and takes her time. She will always be the last one done and will eat whatever you left on your plate. She does not discriminate when it comes to food. Some of her favorite foods are squash, cucumbers, broccoli, green beans and of course chicken and French fries.
14. Megan loves to talk on the phone and can have a conversation with anyone. We love to let her practice her answering abilities when a solicitor is calling.
15. Megan has the ability to make anyone fall in love with her. She has done this many of times and at Joey’s baseball games she always has a line of boys waiting for her attention.
16. Megan loves watching sports and all the people playing are Joey….so when we are watching the Eagles play Megan is always yelling “YAY Joey!”
17. Megan loves the bath, you are not aloud to wash her hair though, only she is aloud to do that, she will yell at you if you touch her while she is in her tub, she is in charge and will wash herself.
18. Megan is very stubborn, she wants things done her way and will do a strong arm cross and a yell if it is done any other way.
19. Megan is very good with direction, if you pull out of the driveway in a different direction then Nana and Pop Pop’s house she will scream her disapproval. If you do turn the right way you will get a loud “YAY” and clap but if you pass Nana and Pop Pop’s she will cry and you just might have to pull in so she can say hello…if your not in a hurry.
20. Megan loves music and loves to dance. She has a fantastic wiggle….it is infectious but cannot be imitated as she is one of a kind.
21. Megan loves with all her heart, she will hug and kiss those she loves and has a hard time saying goodbye, if you yell at her or correct her she will pout and her lip will go out and you will have to forgive her right away because you can never stay mad at her, just this morning I had to yell at her to stop taking off her clothes but in the same breathe I hugged her for mastering the task. She must be 1 confused little girl.
2.Megan has denim colored eyes and on a gloomy foggy day they are always what stand out most. She has the most beautiful eyes and very prominent brushfield spots.
3.Megan’s hair is so smooth and silky and beautiful, she has the hair I always wanted. During the winter months it turns shades of brown and in the summer months she looks like a beach bum blonde.
4.Megan asks for a drink by making a hard “k” sound and signing milk. She has also passed this on to her sister and she asks for a drink the same way. Good thing I am always around otherwise they would go thirsty because nobody would have a clue what they were doing or saying.
5.When Megan is tired she talks non-stop, I call her jabber jaws. She will tell you she wants fwench fwies and chitcken and wants to watch Dora and Caillou. She loves to cuddle while she does this.
6.Megan loves to read, when she is ready her butt will back right up and plop in your lap, we always say she needs a beeper on that thing…she will start by looking up at you and saying “ready”…she loves to turn the page and say the last word on every page. She always closes the book and says “the end”
7. Megan loves to be helpful, just the other night she swung a large glass of ice tea in Olivia’s face because she was thirsty…I said she loves being helpful yet is not very graceful and so the help is sometimes more work for me but I LOVE IT!
8. Megan absolutely loves watching her brother get on the bus every morning, if I let her she would so go with him and be ok….
9. Every day Megan gets off the bus she offers up her kisses and says “Bye Guys” to all her friends. Melts my heart daily.
10. When we are walking in to the house after getting off the bus Megan always says “where Olivia” and I tell her she is sleeping, she responds with a “no…no more sweeping” and I have to bribe her not to wake her sister. Offering Caillou usually helps me win this battle.
11. While watching TV Megan always stands at attention with her hands behind her back…in her pants. As much as I try and correct this behavior she continues to do it.
12. I put on Megan’s sure steps and shoes about 50 times a day. She will ALWAYS remove them as soon as you are not looking. She also has her sister helping her out every once and awhile as I usually catch them in the act while Megan is removing her right shoe, Olivia is always working on the left….however Olivia always seems to keep hers on.
13. Megan is a petite eater, she is very careful and takes her time. She will always be the last one done and will eat whatever you left on your plate. She does not discriminate when it comes to food. Some of her favorite foods are squash, cucumbers, broccoli, green beans and of course chicken and French fries.
14. Megan loves to talk on the phone and can have a conversation with anyone. We love to let her practice her answering abilities when a solicitor is calling.
15. Megan has the ability to make anyone fall in love with her. She has done this many of times and at Joey’s baseball games she always has a line of boys waiting for her attention.
16. Megan loves watching sports and all the people playing are Joey….so when we are watching the Eagles play Megan is always yelling “YAY Joey!”
17. Megan loves the bath, you are not aloud to wash her hair though, only she is aloud to do that, she will yell at you if you touch her while she is in her tub, she is in charge and will wash herself.
18. Megan is very stubborn, she wants things done her way and will do a strong arm cross and a yell if it is done any other way.
19. Megan is very good with direction, if you pull out of the driveway in a different direction then Nana and Pop Pop’s house she will scream her disapproval. If you do turn the right way you will get a loud “YAY” and clap but if you pass Nana and Pop Pop’s she will cry and you just might have to pull in so she can say hello…if your not in a hurry.
20. Megan loves music and loves to dance. She has a fantastic wiggle….it is infectious but cannot be imitated as she is one of a kind.
21. Megan loves with all her heart, she will hug and kiss those she loves and has a hard time saying goodbye, if you yell at her or correct her she will pout and her lip will go out and you will have to forgive her right away because you can never stay mad at her, just this morning I had to yell at her to stop taking off her clothes but in the same breathe I hugged her for mastering the task. She must be 1 confused little girl.
Monday, October 29, 2007
So Joey wants to be a refrigerator for Halloween! YAY!!!!! A project for the whole family! Did you know plumbers crack was required for this? If I could I would take a picture to share (LOL)....It is 9:30 pm on a Monday night and we are still working on it....I took a break to put the kids to bed...and to think we thought it was such a good idea to make a costume instead of buy one....I think our time cost us way more....but the outcome will be GREAT and I cannot wait to share it with you all on Wednesday.
In the meantime I am going to try and work on my 21 things about Megan before the month ends....I owe her that considering I did not keep up with blogging every day this month.
In the meantime I am going to try and work on my 21 things about Megan before the month ends....I owe her that considering I did not keep up with blogging every day this month.
My post tonight is for all you mom's and dad's out there with a child with Down Syndrome. This post is not to stir up controversy or to start an argument with anyone. I just truly want to know your honest answer.
If there were a pill to take away the extra chromosome so that your child would no longer have down syndrome would you do it?
My answer to my own question is emphatically NO. I would not...and that is the honest truth. I know this question in some ways is not fair because it just could never happen. There is just no way to "cure" down syndrome, no way to take away that extra genetic material in every cell. There are however advances in research by the DSRTF for cognitive enhancements that will be available in our lifetime (which I am not opposed to). But my answer is in response to the extra chromosome....the one that gives my daughter chubby little fingers, a sandal gap toe, slanted eyes, a button nose, brushfield spots in her eyes, her cute little way of saying fwen fwhys and chitken (french fries and chicken)...how could I ever give that up....Days go by and I do get frustrated with her abilities not being par but I love her anyway...I am no where near the best at anything and that is ok, I am happy with my life...and to be successful or to make an impact in life isn't about meeting milestones and IQ markers. We remember people for their accomplishments big and small and we haven't a clue when they walked or talked for the first time.
I would cure society before I ever touched a hair on my daughters head.
The only reason anyone would want to take the Down Syndrome away is because of how harsh society is to our children...so why not, if you have a choice, change everyone else first? I would....I would rather cure the ignorance and hateful attitudes of others. My child is happy with who she is and the down syndrome does not bother her.
I would never give her a magic pill that will never exist anyway.
I know, it is such silly question to ask but just curious who out there would actually cure their child. I know we all want what is best and in no way is your answer to this meaning you love your child any less.
If there were a pill to take away the extra chromosome so that your child would no longer have down syndrome would you do it?
My answer to my own question is emphatically NO. I would not...and that is the honest truth. I know this question in some ways is not fair because it just could never happen. There is just no way to "cure" down syndrome, no way to take away that extra genetic material in every cell. There are however advances in research by the DSRTF for cognitive enhancements that will be available in our lifetime (which I am not opposed to). But my answer is in response to the extra chromosome....the one that gives my daughter chubby little fingers, a sandal gap toe, slanted eyes, a button nose, brushfield spots in her eyes, her cute little way of saying fwen fwhys and chitken (french fries and chicken)...how could I ever give that up....Days go by and I do get frustrated with her abilities not being par but I love her anyway...I am no where near the best at anything and that is ok, I am happy with my life...and to be successful or to make an impact in life isn't about meeting milestones and IQ markers. We remember people for their accomplishments big and small and we haven't a clue when they walked or talked for the first time.
I would cure society before I ever touched a hair on my daughters head.
The only reason anyone would want to take the Down Syndrome away is because of how harsh society is to our children...so why not, if you have a choice, change everyone else first? I would....I would rather cure the ignorance and hateful attitudes of others. My child is happy with who she is and the down syndrome does not bother her.
I would never give her a magic pill that will never exist anyway.
I know, it is such silly question to ask but just curious who out there would actually cure their child. I know we all want what is best and in no way is your answer to this meaning you love your child any less.
Thursday, October 25, 2007
I am posting on something other than my kids I "kid" you not.
So did you hear about the cook book written by Jerry Seinfeld's wife? Supposedly there is a very close proximity in recipes of her book and another cook book, "The Sneaky Chef" by Missy Chase Lapine. There is buzz going on throughout the internet.....Here is a write up on Yahoo all about it.
So seems to me that the publisher knew the Seinfeld name would bring in big bucks and ignored the similarities...how could that be, that is just wrong and is not a coincidence to me!
So did you hear about the cook book written by Jerry Seinfeld's wife? Supposedly there is a very close proximity in recipes of her book and another cook book, "The Sneaky Chef" by Missy Chase Lapine. There is buzz going on throughout the internet.....Here is a write up on Yahoo all about it.
So seems to me that the publisher knew the Seinfeld name would bring in big bucks and ignored the similarities...how could that be, that is just wrong and is not a coincidence to me!
Tuesday, October 23, 2007
So I wanted to ask others out there if this happened to them.
Before Megan was born I had a good career. I was motivated to do well and succeed.
I tried to learn as much as I could about the company I worked for, put in extra hours so someone would notice and was just an overachiever.
But ever since I had Megan I have seemed to lose my will-power and desire to succeed.
I noticed it at work that I would be browsing the internet and every thought would be on down syndrome and not my work.
I feel like down syndrome consumes my conversations.
When I am at home with the kids I still think about it.
I feel like my life has become so obsessed with the "down syndrome" that my mind cannot focus on other things? Does this make sense at all?
Is it possible that I try to convince myself so much that I am ok with the down syndrome that it makes me depressed?
I never thought I could be depressed but I feel like my symptoms might lead me to that.
Megan is going to be 4 in a few weeks. I just feel very overwhelmed by that....4 seems so old and I just feel like she is no where near being a 4 year old, she is small and non-verbal at times.....and her sister is already doing more than her.
Please tell me I am not the only person to feel like they have lost will power.
Before Megan was born I had a good career. I was motivated to do well and succeed.
I tried to learn as much as I could about the company I worked for, put in extra hours so someone would notice and was just an overachiever.
But ever since I had Megan I have seemed to lose my will-power and desire to succeed.
I noticed it at work that I would be browsing the internet and every thought would be on down syndrome and not my work.
I feel like down syndrome consumes my conversations.
When I am at home with the kids I still think about it.
I feel like my life has become so obsessed with the "down syndrome" that my mind cannot focus on other things? Does this make sense at all?
Is it possible that I try to convince myself so much that I am ok with the down syndrome that it makes me depressed?
I never thought I could be depressed but I feel like my symptoms might lead me to that.
Megan is going to be 4 in a few weeks. I just feel very overwhelmed by that....4 seems so old and I just feel like she is no where near being a 4 year old, she is small and non-verbal at times.....and her sister is already doing more than her.
Please tell me I am not the only person to feel like they have lost will power.
Saturday, October 20, 2007
I am not sure what to blog about tonight. I am very sleepy after a long day.
Joey had baseball this morning basketball tonight, Joe had a beer festival and I had the girls.
While we were at my friends house Olivia was not paying attention and walked into the tail gate of a truck leaving a HUGE knot on her forehead. I contemplated taking her to the ER but she recovered relatively quickly with an ice pop. Olivia seems prone to accidents. I am pretty sure she took 15 years off my life today. She stayed awake till 8pm and acted normal.
Megan is so easy going. My friends daughter has a Barbie jeep and Megan took turns so nicely while Olivia would not give up her seat. Sometimes I could just kiss Megan all over her face when she acts that way...she truly makes my life easier.
The past 2 days I started x-mas shopping....it just seemed so close and I felt like I needed to get the kids things before the rush started.
So I got Joey the new Monopoly fast cash, brain age for DS, Pitching net and rubber pitching mound.
For the girls I got them these cute twin babies that play patty cake, I got them a cute table and chair set and my little ponies....
Getting that out of the way just makes me feel accomplished.
Now I need to budget and make a list....I do need to be more organized.
So that is the end of my "all over the place" rant. Shhhhhh, don't tell the kids what I bought....
Joey had baseball this morning basketball tonight, Joe had a beer festival and I had the girls.
While we were at my friends house Olivia was not paying attention and walked into the tail gate of a truck leaving a HUGE knot on her forehead. I contemplated taking her to the ER but she recovered relatively quickly with an ice pop. Olivia seems prone to accidents. I am pretty sure she took 15 years off my life today. She stayed awake till 8pm and acted normal.
Megan is so easy going. My friends daughter has a Barbie jeep and Megan took turns so nicely while Olivia would not give up her seat. Sometimes I could just kiss Megan all over her face when she acts that way...she truly makes my life easier.
The past 2 days I started x-mas shopping....it just seemed so close and I felt like I needed to get the kids things before the rush started.
So I got Joey the new Monopoly fast cash, brain age for DS, Pitching net and rubber pitching mound.
For the girls I got them these cute twin babies that play patty cake, I got them a cute table and chair set and my little ponies....
Getting that out of the way just makes me feel accomplished.
Now I need to budget and make a list....I do need to be more organized.
So that is the end of my "all over the place" rant. Shhhhhh, don't tell the kids what I bought....
Friday, October 19, 2007
Megan is learning about people in school.
So we decided to do a project this morning to bring her schoolwork home.
We put wrapping paper on her bedroom door, flipped through magazines and cut out pictures and then taped them to the wrapping paper.
Here is our finished project.
The pictures are of:
girl v. boy
lady v. man
family
kids v. grown-ups
baby v. babies
We find that she learns much better if we are doing at home what they are working on in school. And the other bonus is that Olivia has it all down too!
So we decided to do a project this morning to bring her schoolwork home.
We put wrapping paper on her bedroom door, flipped through magazines and cut out pictures and then taped them to the wrapping paper.
Here is our finished project.
The pictures are of:
girl v. boy
lady v. man
family
kids v. grown-ups
baby v. babies
We find that she learns much better if we are doing at home what they are working on in school. And the other bonus is that Olivia has it all down too!
Wednesday, October 17, 2007
Please consider donating to help the Cornish Family bring Aleksa home.
She is a beautiful 4 1/2 year old looking for her forever family.
Meredith, the mom, is making monkey's to raise money for the adoption.
Here are the monkey's:
All you need to do to help is purchase one or a ton! It is a worthy cause!
Here is a link to the Corninsh Adoption Blog for those who want to read more.
Cornish Adoption Journey
p.s. This families journey is being made possible by Reece's Rainbow.
Please check it out!
Reece's Rainbow
She is a beautiful 4 1/2 year old looking for her forever family.
Meredith, the mom, is making monkey's to raise money for the adoption.
Here are the monkey's:
All you need to do to help is purchase one or a ton! It is a worthy cause!
Here is a link to the Corninsh Adoption Blog for those who want to read more.
Cornish Adoption Journey
p.s. This families journey is being made possible by Reece's Rainbow.
Please check it out!
Reece's Rainbow
Tuesday, October 16, 2007
Megan has switched classes in ballet and tap because the afternoon class was not working for her. She was miserable mostly because she was tired. So we now are doing a 10 am class and the past 2 weeks she has shown great improvement. Her teacher Ms. Sharon today said she did everything in class today...100% participation! Best class yet!
That's my girl!
That's my girl!
Monday, October 15, 2007
So Megan has her 1st ever class pictures tomorrow...and guess what!
She has a big scratch on her nose and under her eye...and she STILL has a rash on her cheeks and chin from the tape from the sleep study in September....BOO HOO!
But her outfit is soooo stinkin' cute and I will take pictures before she leaves.
She will be wearing a dress.
She has a big scratch on her nose and under her eye...and she STILL has a rash on her cheeks and chin from the tape from the sleep study in September....BOO HOO!
But her outfit is soooo stinkin' cute and I will take pictures before she leaves.
She will be wearing a dress.
Saturday, October 13, 2007
Hello to everyone out there checking out Stephanie's blog. My name is Jamie, and I am Stephanie's older sister. Tonight I am stepping in for Steph on both the blog and at home. She and Joe do not get the chance to go out often, but I am always willing to sit for them. My boyfriend Will and I come over to the Bissol home quite regularly because I can not stand being away from my nieces and nephew for too long. I do not have any kids of my own and being around these angels can be an amazing feeling. I also like the feeling I get when I can leave them, all sugared up and hyper, as Stephanie's 'problem'. :-) LOL.
Watching all of them grow into their own person is sooooo cool. They all have such unique personalities, and it is a trip to see the interaction between them. Just this evening, it was revealed to me that Megan and Olivia have decide their beds were just too far apart. Megan, the determined little monkey, pushed her bed about 1 foot away from her sister's bed. They seem to enjoy the independence their room offers and take advantage of every moment alone.
Right now I am trying to get them down for the night, so I turned on an episode of Caliou and shut the door. I can hear them running around and plotting to get out. I think they take turns commanding the escape. Eventually, they retire to their separate beds to sleep, but sometime in the middle of the night switch to throw me off.
I am not really sure what it is that Stephanie expected from my blog, but I can not resist gushing about the most beautiful girls in the world. I think I might need to go, I hear the door being dismantled by my very create gruesome twosome.
Watching all of them grow into their own person is sooooo cool. They all have such unique personalities, and it is a trip to see the interaction between them. Just this evening, it was revealed to me that Megan and Olivia have decide their beds were just too far apart. Megan, the determined little monkey, pushed her bed about 1 foot away from her sister's bed. They seem to enjoy the independence their room offers and take advantage of every moment alone.
Right now I am trying to get them down for the night, so I turned on an episode of Caliou and shut the door. I can hear them running around and plotting to get out. I think they take turns commanding the escape. Eventually, they retire to their separate beds to sleep, but sometime in the middle of the night switch to throw me off.
I am not really sure what it is that Stephanie expected from my blog, but I can not resist gushing about the most beautiful girls in the world. I think I might need to go, I hear the door being dismantled by my very create gruesome twosome.
Thursday, October 11, 2007
Results left on voice mail when I ran out to post office:
Sweat test- normal
Chest x-ray showed signs of asthma, but we are already treating it so it isn't a problem
Upper GI- Esophagus looked normal but the radiologist noticed a spot on her liver....thinks maybe it was her shirt. Radiologist is calling back to see if further testing needs to be done.
OK, I am freaking a little right now until the doctor calls me back because Megan did not have a shirt on during the procedure because she vomited the barium everywhere. Anyone know what a spot on the Liver can mean?
_________________________________________
Well I called the Pulminologist office a 1/2 dozen times to get the doctor on the phone to explain. I had the nurse relay the message that Megan did not have a shirt on during the procedure.
_________________________________________
Well it is 6:30 and the doctor is still working cause I just got off the phone with him. He really put my mind at ease and I am feeling much better.
He said he would not have picked up on the spot if the Radiologist hadn't mentioned it in his report. The spot was very small. The Radiologist probably will not want to see her because it was insignificant but he will review again for sure tomorrow knowing now that she was not wearing any clothes. I will get a call if they want her to come in. IF they do not call the Pulminologist said to put my mind at ease, when I come in again in January that he will run another x-ray to see if it has gone. He said if it is not their than it was a insignificant artifact.
So I am feeling a bit of relief tonight. Thanks for all who worried with me!!!!
Sweat test- normal
Chest x-ray showed signs of asthma, but we are already treating it so it isn't a problem
Upper GI- Esophagus looked normal but the radiologist noticed a spot on her liver....thinks maybe it was her shirt. Radiologist is calling back to see if further testing needs to be done.
OK, I am freaking a little right now until the doctor calls me back because Megan did not have a shirt on during the procedure because she vomited the barium everywhere. Anyone know what a spot on the Liver can mean?
_________________________________________
Well I called the Pulminologist office a 1/2 dozen times to get the doctor on the phone to explain. I had the nurse relay the message that Megan did not have a shirt on during the procedure.
_________________________________________
Well it is 6:30 and the doctor is still working cause I just got off the phone with him. He really put my mind at ease and I am feeling much better.
He said he would not have picked up on the spot if the Radiologist hadn't mentioned it in his report. The spot was very small. The Radiologist probably will not want to see her because it was insignificant but he will review again for sure tomorrow knowing now that she was not wearing any clothes. I will get a call if they want her to come in. IF they do not call the Pulminologist said to put my mind at ease, when I come in again in January that he will run another x-ray to see if it has gone. He said if it is not their than it was a insignificant artifact.
So I am feeling a bit of relief tonight. Thanks for all who worried with me!!!!
Tuesday, October 9, 2007
I am stating this here so that it becomes true.
This has become a big hurdle for us.
Megan does not seem to want to do the potty thing and it is killing me.
So starting tomorrow I am going at it hard-core.
Her teachers at school are on the same page so I am thinking we CAN do this.
Any tips, any ideas, books that will help us on our mission PLEASE share.
Megan will be 4 in 4 weeks!
I want her to wear cute little girl panties by her birthday party.
Doesn't 4 seem soooo old! LOL
This has become a big hurdle for us.
Megan does not seem to want to do the potty thing and it is killing me.
So starting tomorrow I am going at it hard-core.
Her teachers at school are on the same page so I am thinking we CAN do this.
Any tips, any ideas, books that will help us on our mission PLEASE share.
Megan will be 4 in 4 weeks!
I want her to wear cute little girl panties by her birthday party.
Doesn't 4 seem soooo old! LOL
Monday, October 8, 2007
About today, UGH! You could have literally ripped my heart out of my chest over the upper GI test. She was so scarred and was screaming her head off.
She popped the blood vessels in her face too. She did not want to drink the "chocolate milk" and they were forcing it down w/o much hesitation. A doctor who looked like Dooggie Howser was doing it and had his interns watching and I was not a happy camper. She kept nervously yelling "Cheese" since they were taking her picture. After that test she yelled through anything that involved walking through a door frame :(
By the time the sweat test was half way done she was deliriously tired and walked around with these towels wrapped around her arms saying "swimming, we go swimming" It was so cute, she thought she was wearing inflatable arm bands...LOL
She fell asleep and then had to have tape ripped off her arms and cried hysterically again.
She was very happy to get to the car and watch her Calliou video.
The IEP went well. Her therapists all love her and have her best interest at heart. When we talk it is like they know her just as well as I do....they are all great, her teacher and ST are coming over to play on the 29th to see her in her own environment. Pretty cool I thought!
We are all on the same page with Potty training, so we are good to go....ironically when we got home from the meeting Megan went to the potty like an old pro!
If you guys got through my update, WTG! and thanks again for the responses...
ohhh afterthought.....not understanding why sleep studies are done the way they are. They go through all this trouble for what? To see who needs a c-pap machine? Is that the only treatment? What about her restlessness, there is nothing to help with getting her a heavier night sleep. I am getting tired of picking her off the floor by her door and putting her back to bed 3 times a night.
If you walk past her door you either notice her fingers coming through the bottom of her door or hear her heavy breathing. I just think it is silly to traumatize a kid with a sleep study if they do not treat the symptoms that present....JMO I guess.
She popped the blood vessels in her face too. She did not want to drink the "chocolate milk" and they were forcing it down w/o much hesitation. A doctor who looked like Dooggie Howser was doing it and had his interns watching and I was not a happy camper. She kept nervously yelling "Cheese" since they were taking her picture. After that test she yelled through anything that involved walking through a door frame :(
By the time the sweat test was half way done she was deliriously tired and walked around with these towels wrapped around her arms saying "swimming, we go swimming" It was so cute, she thought she was wearing inflatable arm bands...LOL
She fell asleep and then had to have tape ripped off her arms and cried hysterically again.
She was very happy to get to the car and watch her Calliou video.
The IEP went well. Her therapists all love her and have her best interest at heart. When we talk it is like they know her just as well as I do....they are all great, her teacher and ST are coming over to play on the 29th to see her in her own environment. Pretty cool I thought!
We are all on the same page with Potty training, so we are good to go....ironically when we got home from the meeting Megan went to the potty like an old pro!
If you guys got through my update, WTG! and thanks again for the responses...
ohhh afterthought.....not understanding why sleep studies are done the way they are. They go through all this trouble for what? To see who needs a c-pap machine? Is that the only treatment? What about her restlessness, there is nothing to help with getting her a heavier night sleep. I am getting tired of picking her off the floor by her door and putting her back to bed 3 times a night.
If you walk past her door you either notice her fingers coming through the bottom of her door or hear her heavy breathing. I just think it is silly to traumatize a kid with a sleep study if they do not treat the symptoms that present....JMO I guess.
Sunday, October 7, 2007
Saturday: We had A GREAT DAY! We went on a looongg bike ride with Joey, Megan and Olivia and found a hidden playground that we didn't know about. The girls were so cute climbing like monkeys on the ladders and the tall see-saw. We watched as the 2 girls got onto the see-saw in 2 completely different ways. I wish I had a picture to share. Olivia got on herself by using brute arm strength. She seems to be scary strong in her upper body. Then there was short little flexible Megan who picked her leg up over her head to put it on the seat and then grabbed the handle and pulled herself up. I couldn't help but be proud of both of them for neither looked to mom and dad for help.
Joey was such a great big brother and played right along side them. Once we got home they did not want to sleep so we headed to our back yard swing set and the girls had a blast swinging side by side as Joey let them kick him over.
We all had to rush in and get in the bath and shower because we had Grandmom's 79th birthday party and it was a surprise. We had no idea where we were going, we just knew it was at a Country Club in New Jersey. We got the girls all dolled up in their party dresses to surprise Grandmom Rose. It was just beautiful! She was very surprised and was wearing the same dress she wore to my wedding, that was the 1st thing I noticed when she came through the double doors. The girls were over whelmed with the shouts of "surprise" but warmed up enough to dance on the dance floor.
Unfortunately Joey, Megan and I left early because Joey had his first basketball game. Megan was so cute sitting in the stands cheering and yelling "YAY JOEY" to every boy with a basketball. Megan still had on her dress and sat so nicely with her aunt meme and "wheel" (Will) as I sat on the bench as assistant coach of Joey's team. I am taking a step down this year to focus more on Joey!
His team lost but Joey scored a basket. He is in 5th grade but plays on a team with 6, 7 and 8th graders and keeps up pretty well.
Very tired Saturday night so no time to blog, sorry!
Sunday: Cleaned my car and filled up my gas tank by 9am because the kids were going to my parents house and we were leaving them the car. We took my parents car and headed to the Falkevitz house by 11am. It was big "Baptism" day today. Me and Joe were honored to be a part of the day. Julianna was just precious and beautiful and a little angel in church, the only noises she made was from sucking down her bottle. She is such a happy baby! After the church we went back to Julianna's house and shared in the celebration of the day. It was very laid back, good food and good friends. What more could you ask for! My parents came later with the kids and I was glad that they were able to also share in the day. We left the party because Joey had another basketball game....they won! YAY! And I am now sitting on the couch watching my TIVO recording of Extreme Makeover and I know I have seen this girl online before. I think I saw a youtube video of her. She is so strong and beautiful so I am typing all this through teary eyes.
Tomorrow: Busy Busy day! Joe had to take off because we have so much going on.
I need to leave by 7:30 am to get me and Megan to CHOP by 9. Megan will be doing a swallow study, having a chest x-ray and doing a sweat test. We will hopefully run on schedule because we need to be back at Megan's school by 1:30 for her IEP meeting.
We got the rough draft and I am thinking I need to add "potty training" to it. Megan is going to be 4 shortly and I really want her potty trained.
So please keep us in your prayers for a smooth day. I will update tomorrow night.
Hope you can all understand why I missed my blogging day although I am very upset with myself...I tried :(
Joey was such a great big brother and played right along side them. Once we got home they did not want to sleep so we headed to our back yard swing set and the girls had a blast swinging side by side as Joey let them kick him over.
We all had to rush in and get in the bath and shower because we had Grandmom's 79th birthday party and it was a surprise. We had no idea where we were going, we just knew it was at a Country Club in New Jersey. We got the girls all dolled up in their party dresses to surprise Grandmom Rose. It was just beautiful! She was very surprised and was wearing the same dress she wore to my wedding, that was the 1st thing I noticed when she came through the double doors. The girls were over whelmed with the shouts of "surprise" but warmed up enough to dance on the dance floor.
Unfortunately Joey, Megan and I left early because Joey had his first basketball game. Megan was so cute sitting in the stands cheering and yelling "YAY JOEY" to every boy with a basketball. Megan still had on her dress and sat so nicely with her aunt meme and "wheel" (Will) as I sat on the bench as assistant coach of Joey's team. I am taking a step down this year to focus more on Joey!
His team lost but Joey scored a basket. He is in 5th grade but plays on a team with 6, 7 and 8th graders and keeps up pretty well.
Very tired Saturday night so no time to blog, sorry!
Sunday: Cleaned my car and filled up my gas tank by 9am because the kids were going to my parents house and we were leaving them the car. We took my parents car and headed to the Falkevitz house by 11am. It was big "Baptism" day today. Me and Joe were honored to be a part of the day. Julianna was just precious and beautiful and a little angel in church, the only noises she made was from sucking down her bottle. She is such a happy baby! After the church we went back to Julianna's house and shared in the celebration of the day. It was very laid back, good food and good friends. What more could you ask for! My parents came later with the kids and I was glad that they were able to also share in the day. We left the party because Joey had another basketball game....they won! YAY! And I am now sitting on the couch watching my TIVO recording of Extreme Makeover and I know I have seen this girl online before. I think I saw a youtube video of her. She is so strong and beautiful so I am typing all this through teary eyes.
Tomorrow: Busy Busy day! Joe had to take off because we have so much going on.
I need to leave by 7:30 am to get me and Megan to CHOP by 9. Megan will be doing a swallow study, having a chest x-ray and doing a sweat test. We will hopefully run on schedule because we need to be back at Megan's school by 1:30 for her IEP meeting.
We got the rough draft and I am thinking I need to add "potty training" to it. Megan is going to be 4 shortly and I really want her potty trained.
So please keep us in your prayers for a smooth day. I will update tomorrow night.
Hope you can all understand why I missed my blogging day although I am very upset with myself...I tried :(
Friday, October 5, 2007
Friday through Sunday's are hard for me. I usually am not on the computer too much so that we can all hang out together as a family, so right now it is 11:30 pm and everyone is sleeping and I know I need to blog before the clock hits midnight.
So tonight I am posting this website. I got a bracelet from this lady at our local township harvest day. She has every awareness bracelet you can think of and does it in a ton of different styles. It is stunning!
Here is the site:
at Awareness Bracelets etc.
So tonight I am posting this website. I got a bracelet from this lady at our local township harvest day. She has every awareness bracelet you can think of and does it in a ton of different styles. It is stunning!
Here is the site:
at Awareness Bracelets etc.
Thursday, October 4, 2007
On the 4th day of Down Syndrome Awareness Month I wanted to share this video. It is a video of a boy named Matt. He is from England and I was very fortunate to be able to meet him and his family this past May after knowing them for 3 years through our internet support group downsyn.com. Matt was such an inspiration to me. After Megan was born he was the first face I looked at. I would call Joe to the computer to show him this little boy. I saw pictures of him before and after heart surgery. He was so strong bearing weight on his legs at 5 months old. He had the cutest smile. He was the first thing to show me "Down Syndrome was going to be ok." I am sure we all have things that touch us and help us get through the initial shock. Matt was that for me! As time went on, Matt continued to amaze me. He walked by 18 months, I watched videos of him communicating and interacting and thought WOW, we can do that too. But Matt was taken from us by a scary thing called Autism. This boy that many came to love and admire through our family site saw this particular family struggle with a new diagnosis. So on the 4th day of DS Awareness Month, lets remember all the other things families with DS deal with. Autism, Cancer, seizure disorders, heart issues, breathing issues, intestinal and so on.
God bless our children!
Matthew Isaac Coppins
God bless our children!
Matthew Isaac Coppins
Wednesday, October 3, 2007
I have been thinking about this since a friend over at Sun Flower Mom posted a comment on our Down Syndrome Forum:
"I know this sounds petty, but I am so freaking sick of seeing all the Breast Cancer Awareness news and promo items at the grocery store. Do you have any idea what kind of impact WE could make if M & M's sold bags of blue & yellow M & Ms for Ds Awareness?????? Every freaking item is pink this month! I just want *one* item in every grocery store. Give us a little, we will be happy to have something!"
I cried after reading this comment because man she is SOOOOOOOO RIGHT!
My mom is a breast cancer survivor and this has NOTHING to do with not wanting them to be successful but being jealous at the attention they get from society.
SO, I am writing this down here during our 31 for 21 to get people to step up and write to M&M's for next October. I want to be able to buy a pack of M&M's to support my children and I believe this is the way to do it....so thank you Deborah for inspiring me!
Once I am finished my letter I will post it here.
"I know this sounds petty, but I am so freaking sick of seeing all the Breast Cancer Awareness news and promo items at the grocery store. Do you have any idea what kind of impact WE could make if M & M's sold bags of blue & yellow M & Ms for Ds Awareness?????? Every freaking item is pink this month! I just want *one* item in every grocery store. Give us a little, we will be happy to have something!"
I cried after reading this comment because man she is SOOOOOOOO RIGHT!
My mom is a breast cancer survivor and this has NOTHING to do with not wanting them to be successful but being jealous at the attention they get from society.
SO, I am writing this down here during our 31 for 21 to get people to step up and write to M&M's for next October. I want to be able to buy a pack of M&M's to support my children and I believe this is the way to do it....so thank you Deborah for inspiring me!
Once I am finished my letter I will post it here.
Tuesday, October 2, 2007
Is it ok to accept a person saying, "That shirt is so retarded"
(What does that mean anyway)because it is not a direct attack on someone who has MR?
I think it is worse to refer to an inanimate object as retarded...it is a direct attack on our children because all though they don't think of a person w/ MR when they say it per se, that is what it means and why should our children's mental status be used to refer to something as stupid...insert angry face and rolling eyes
I don't think most people "think" before they speak and no, we shouldn't cut them slack...IMHO...our entire history has been founded on words and definitions of words...as we have aged in "comforts" we have immaturely regressed in "language" and our forefathers would be disgusted at what our vocabularies have become. Some see vocabulary as an art and find the misuse of it a crime....and maybe it should be.
Our kids with Down Syndrome are not stupid and yes, they are classified as mentally retarded...
If, as a human being you have the capacity to understand the misuse of a word and you choose to ignore it, then THAT IS A HUGE PROBLEM!
Society needs to see this word as an insult...even if you are a parent of a "special needs child" who uses the word....it makes me sad that people are ok with using a "health term" as a derogatory term.
PEACE OUT!
(What does that mean anyway)because it is not a direct attack on someone who has MR?
I think it is worse to refer to an inanimate object as retarded...it is a direct attack on our children because all though they don't think of a person w/ MR when they say it per se, that is what it means and why should our children's mental status be used to refer to something as stupid...insert angry face and rolling eyes
I don't think most people "think" before they speak and no, we shouldn't cut them slack...IMHO...our entire history has been founded on words and definitions of words...as we have aged in "comforts" we have immaturely regressed in "language" and our forefathers would be disgusted at what our vocabularies have become. Some see vocabulary as an art and find the misuse of it a crime....and maybe it should be.
Our kids with Down Syndrome are not stupid and yes, they are classified as mentally retarded...
If, as a human being you have the capacity to understand the misuse of a word and you choose to ignore it, then THAT IS A HUGE PROBLEM!
Society needs to see this word as an insult...even if you are a parent of a "special needs child" who uses the word....it makes me sad that people are ok with using a "health term" as a derogatory term.
PEACE OUT!
Over at Prince Vince they are having a contest to win a pair of wellies. Go on over and add your name to comments to get in the running for Vince to pick a name. Drawing is on October 10th.
Good Luck although I hope we win ;)
Good Luck although I hope we win ;)
Me and Joe were blessed to be asked by our good friends to be the Godparents of their daughter Julianna Marie. Baptism is this Sunday. I am very honored and excited to share in the day with them as I consider them my best friends. Joey thinks they are family since we see them all the time. I think he is right, they are a very important part of our lives.
We love you guys and thank you for the honor.
Here is me with Julianna, trying on her sister's baptism gown.
We love you guys and thank you for the honor.
Here is me with Julianna, trying on her sister's baptism gown.
So Megan has a temper. I am sure she has gotten it from me.
Well, whenever she yells at me or anybody, I say to her..."You're being ridiculous"
Soooo, guess what her favorite word is now....you guessed it, RIDICULOUS!
Now it is just funny to hear Megan and Olivia say it....
So here you go:
My Montage 10/2/07
Well, whenever she yells at me or anybody, I say to her..."You're being ridiculous"
Soooo, guess what her favorite word is now....you guessed it, RIDICULOUS!
Now it is just funny to hear Megan and Olivia say it....
So here you go:
My Montage 10/2/07
Monday, October 1, 2007
For the love of Caillou!
Oh how my kids have a one track mind and on that one track is CAILLOU!
That is all they want to watch. If you are watching the news or football it is almost guaranteed that one of the girls will bring you the remote and demand you put it on.
My TIVO is now used to capture all of the episodes so that they are available at the push of a button.
They sing the song all day long and kiss the TV when they see Gilbert or Rexi or Teddy....I am not sure why there is an obsession or why they chose Caillou but it can not be denied.
For the Love of Calliou!
Oh how my kids have a one track mind and on that one track is CAILLOU!
That is all they want to watch. If you are watching the news or football it is almost guaranteed that one of the girls will bring you the remote and demand you put it on.
My TIVO is now used to capture all of the episodes so that they are available at the push of a button.
They sing the song all day long and kiss the TV when they see Gilbert or Rexi or Teddy....I am not sure why there is an obsession or why they chose Caillou but it can not be denied.
For the Love of Calliou!
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