The ped doc gave us an ok for the MRI on Wednesday. We hadn't ever seen her before, and she was a little hesitant to give the ok since he was just recently seen for branchiospasms. But, when I asked her if she'd ok him after examining him if she didn't know about the previous illness, she said yes. His lungs are clear (we were able to stop the albuterol on Saturday) and his sinuses were as well. She still asked about postponing, which would be fine, but this is the healthiest he's been in over a month and if we postpone, they'll most likely reschedule for a month or more later, which will put us in the center of winter...and chances are he'll be sick then as well. So, she is requesting that a Children's nurse and the anesthesiologist re-examine him Wednesday morning to be sure he is clear then as well. I'm confident everything will be fine. I know that she was only hesitant because she doesn't understand his history. Everything will be fine.
Chloe is feeling much better today. She was much more playful and has started talking a little more (baby talk - just so you didn't think she developed a vocabulary recently) and she ate like a champ today. She also slept all night last night, which meant I got my first full night's sleep in a while. As a result, I am much happier today as well.
The weather was so nice here today. While she napped this afternoon, I actually got out of the house and did some yardwork. It was nice to be out. Colin got to head to the park with a friend for a while after school and was thrilled about that.
Thanks Mark for stopping by for a visit tonight! We're all always happy to see you.
Monday, October 30, 2006
Sunday, October 29, 2006
A Gift for Colin. Please read!
I have a favor to ask of all of you for my boy. I am going to create a scrapbook for him to help him remember how much all of us love him. Over the next few weeks, I would like to collect from anyone willing to participate, a little statement about the things you love about Colin. I am going to compile them all in a book for him with photos - either supplied by you, or I will try to add some from my collection. That way, when he's having a rough day, he can look through it and read about why those he loves the most love him the most too! So pass this on. I want to be able to stuff his book full. This weekend he began for the first time asking some major questions about his differences and I am hoping that this will be a reminder for him, whenever he needs it, about how much we all love him for who he is.
Please remember, your words don't have to be profound. They can simply be one word statements about the qualities he possesses that you are thankful for or love yourself. You can either post them here as a comment to this post, e-mail them to me, or send them by mail. As I said, I will collect them over the next two weeks, so please take a minute to share your thoughts for Colin.
This is really important to all of us, so please participate. This will be something that will help build his self esteem for years ahead. Please be a part of Colin's book! Thank you all in advance for taking the time to do this for him. I am sure he will thank you later in life.
Please remember, your words don't have to be profound. They can simply be one word statements about the qualities he possesses that you are thankful for or love yourself. You can either post them here as a comment to this post, e-mail them to me, or send them by mail. As I said, I will collect them over the next two weeks, so please take a minute to share your thoughts for Colin.
This is really important to all of us, so please participate. This will be something that will help build his self esteem for years ahead. Please be a part of Colin's book! Thank you all in advance for taking the time to do this for him. I am sure he will thank you later in life.
Saturday, October 28, 2006
Happy Halloween!
The most fierce gladiator on the block!
Goofballs!!!
Little Miss Muffet...watch out for this cutie little spider!
Oh, that funny brother! He's the best!
We had a great day...made cupcakes, cleaned a little, decorated for Halloween, and played a lot. It's been a long time since we had such a relaxing day. It was so much fun! Thanks Mom-Mom and Uncle Seth for taking Colin trick-or-treating! He had a blast!
Jeremy won't be home this weekend. We'll miss him, but Colin spoke the truth tonight: "Mom, I really miss Daddy, but I'm kind of glad he's not home so he won't have to check all my candy." Daddy's checking usually includes a lot of taste tests! :) So cute.
Goofballs!!!
Little Miss Muffet...watch out for this cutie little spider!
Oh, that funny brother! He's the best!
We had a great day...made cupcakes, cleaned a little, decorated for Halloween, and played a lot. It's been a long time since we had such a relaxing day. It was so much fun! Thanks Mom-Mom and Uncle Seth for taking Colin trick-or-treating! He had a blast!
Jeremy won't be home this weekend. We'll miss him, but Colin spoke the truth tonight: "Mom, I really miss Daddy, but I'm kind of glad he's not home so he won't have to check all my candy." Daddy's checking usually includes a lot of taste tests! :) So cute.
Friday, October 27, 2006
Just a bad cold...Colin back to doctor on Monday.
Thank goodness. Chloe's pediatrician examed her today and took a look at the ER reports, including the x-ray results, and has concluded it is just a really bad cold. We are going to continue on with the antibiotic and hopefully she'll be feeling better by Monday. She ate really well today. 18 ounces of formula (which is nearly a record for a normal day) and a piece of cheese. :) She's her Mommy's girl.
We head back to the doctor for a history and physical for Colin on Monday, so if need be, I'll ask them to recheck Chloe then. Can't believe this month is already over, which means Colin's MRI is quickly approaching. Sort of snuck up on me. We may have to postpone it if his doc doesn't give clearance on Monday because of this month-long chest cold and cough. They have to be sure that his airways are clear since he'll be going under general anesthesia. He seems to be doing much better. Still coughing, but we've backed off of the nebulizer to only two treatments a day.
Jeremy headed back to work today...a little sad about missing his first trick-or-treat with Colin. :(
We head back to the doctor for a history and physical for Colin on Monday, so if need be, I'll ask them to recheck Chloe then. Can't believe this month is already over, which means Colin's MRI is quickly approaching. Sort of snuck up on me. We may have to postpone it if his doc doesn't give clearance on Monday because of this month-long chest cold and cough. They have to be sure that his airways are clear since he'll be going under general anesthesia. He seems to be doing much better. Still coughing, but we've backed off of the nebulizer to only two treatments a day.
Jeremy headed back to work today...a little sad about missing his first trick-or-treat with Colin. :(
Thursday, October 26, 2006
Long Day
Poor Chloe got worse as the day went on. We ended up in the ER, because her doc didn't have any openings. She is having such a hard time breathing that she can't even really cry. They x-rayed her chest and apparently she has a "pocket" of the beginnings of either pneamonia or rsv. The ER doc started her on an antibiotic until we can get into the pediatrician's in the morning. Feeling so bad for her. Praying for a restful night for her. Today was long.
Luckily, Jerm came home this morning. So nice to have him to help with both of the kids. Not to mention, I am in need of lots of hugs right now.
Luckily, Jerm came home this morning. So nice to have him to help with both of the kids. Not to mention, I am in need of lots of hugs right now.
Chloe's First Cough
Chloe woke up this morning with a runny nose and cough. She has never had a cough before. It actually took Jeremy and I a while to figure out what the sound was. It's funny...I could pick Colin's cough out of a room of 50 kids, but we had never heard her cough before. Kind of a strange first. Jeremy kept running into Colin's room to check on him...finally we realized it was coming from her room.
She has no fever. So, we're just waiting to see if it progresses any further. She's not really drinking much...only 8 ounces today. Not eating at all, and sleeping a bunch. She's waking now, so I'll update later.
She has no fever. So, we're just waiting to see if it progresses any further. She's not really drinking much...only 8 ounces today. Not eating at all, and sleeping a bunch. She's waking now, so I'll update later.
Wednesday, October 25, 2006
Monday, October 23, 2006
Revisiting Holland.
Hate to go back to the terribly depressing blog from last week (10/19.06: Welcome to Holland) but I realized today that the newsletter I got didn't include the ending, so I am going to post that here, but I also wanted to revisit the whole thing in the light of a brighter week.
After re-reading my post, I had to chuckle, not that any of it is funny...just at my sudden boldness. Nothing like going from nothing to all at once! So sorry everyone! But, I guess that's how it is. Good days, bad days. Good weeks, bad weeks. On most days, the emotions are in check and then there are some days where I get so out of whack that I feel overwhelmed and out of control. I guess you got that though!
So, now that things have calmed a bit, I wanted to add some more insight to that post. After reading that essay again and again, I have sorted my thoughts out a bit. I do feel that way, raising Colin, of course has a lot of difficult things I never expected as a mother. But, it is also filled with so many amazing things I couldn't have predicted.
Raising Colin has taught me so much about life, about me, about my husband, about who friends are, about what's important, about my faith. He is amazing. I know all parents say that about their kids, but he truly is. There is something so special about him. They way he cares, the way he looks at the world, the way he loves. It is so genuine. So clear. So open. I know that there are great things in store for this boy. He is going to make a mark. Change the world. I have no doubt about that. He is going to take Italy by storm. I can't wait! (And I'll be the proud mama in the background shouting "He is MY son!"
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.
And here's the part I didn't have:
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by Emily Perl Kingsley
But, today, it doesn't matter. What I've come to realize is that although I may be living in Holland...Colin is on his way to Italy. And we all are blessed enough to get to be a part of his journey!!
After re-reading my post, I had to chuckle, not that any of it is funny...just at my sudden boldness. Nothing like going from nothing to all at once! So sorry everyone! But, I guess that's how it is. Good days, bad days. Good weeks, bad weeks. On most days, the emotions are in check and then there are some days where I get so out of whack that I feel overwhelmed and out of control. I guess you got that though!
So, now that things have calmed a bit, I wanted to add some more insight to that post. After reading that essay again and again, I have sorted my thoughts out a bit. I do feel that way, raising Colin, of course has a lot of difficult things I never expected as a mother. But, it is also filled with so many amazing things I couldn't have predicted.
Raising Colin has taught me so much about life, about me, about my husband, about who friends are, about what's important, about my faith. He is amazing. I know all parents say that about their kids, but he truly is. There is something so special about him. They way he cares, the way he looks at the world, the way he loves. It is so genuine. So clear. So open. I know that there are great things in store for this boy. He is going to make a mark. Change the world. I have no doubt about that. He is going to take Italy by storm. I can't wait! (And I'll be the proud mama in the background shouting "He is MY son!"
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.
And here's the part I didn't have:
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by Emily Perl Kingsley
But, today, it doesn't matter. What I've come to realize is that although I may be living in Holland...Colin is on his way to Italy. And we all are blessed enough to get to be a part of his journey!!
Remarkably Better. Thanks!!!
Both of the kids are remarkably better and we are unbelievably thankful. So off starts another week. Jeremy made it home early Sunday morning and will head back in a matter of hours. Thankful for the visit as well. Thanks to my mom and both of my sisters for dealing with my break down last week. Love you all! Thanks to Nat for always being there, even when you're dealing with the ups and downs of your own life! Thanks to Shannon for always being there even though you're so far away! Can't wait to see you! Thanks to Kim and Rach for being available for a much needed late night chat on an otherwise lonely night! Thanks to my hubby for working so hard when he'd rather be doing anything else!! Love you! Thanks to Grammie C. for taking care of Colin for me on Saturday for a much needed scrapbooking break. I can think of noone else I would rather have caring for him! Working on our family albums is very therapuetic for me. Reminds me of how much I have to be thankful for. My life if full! and for that I am very thankful!
Friday, October 20, 2006
Series of Updates
The doctor prescribed an antibiotic for Colin to clear up a sinus infection and in preparation for possible pneamonia. If he is not remarkably better by Monday, we'll head back for a recheck and possible chest x-ray to check for fluid in his lungs. Other than the cough, he is feeling fine. Still a little mean from the steroids, but once again, it makes me laugh...mostly because he's not a mean child by nature, so I find it humurous. (and a little exhausting.) :)
Chloe was prescribed lotion for yet another staph infection. She is napping now. Tried to get Colin to do the same, but the steroids would have none of it. Mommy took a mini-snooze while he watched a show...I needed it. Feeling better now.
Also got a call today from neurosurgery and audiology at Children's. He'll head down on November 1 for a full-skeletal MRI. We had this done 3 years ago as well. They'll be checking his spinal cord and pretty much the rest of the bones in his body to be sure that his growth is not compromising any of his other systems. I think I'm nervous more now about this than I was then. I guess because we've had enough things "pop" up recently. Plus, he'll be sedated. This time under general anesthesia. The process takes 2 to 3 hours and he has to lay completely still.
We'll head back down on November 7 to audiology. They have his new BAHA hearing aid. They'll be helping us understand how it works and attempting to help him begin to get used to it. I e-mailed his school advocate (can't remember her real title right now) so that she'll be prepared to assist him in anyway possible as he returns to school with it. Nervous as can be about that. Sometimes the social parts of this whole thing are harder than the medical end.
We're heading to my sister's for dinner tonight and to celebrate Tanner's (my nephew) birthday nearly a month late! So sorry Tanner! Things have been crazy and your celebration suffered! We love you!!! I'm excited to visit.
Chloe was prescribed lotion for yet another staph infection. She is napping now. Tried to get Colin to do the same, but the steroids would have none of it. Mommy took a mini-snooze while he watched a show...I needed it. Feeling better now.
Also got a call today from neurosurgery and audiology at Children's. He'll head down on November 1 for a full-skeletal MRI. We had this done 3 years ago as well. They'll be checking his spinal cord and pretty much the rest of the bones in his body to be sure that his growth is not compromising any of his other systems. I think I'm nervous more now about this than I was then. I guess because we've had enough things "pop" up recently. Plus, he'll be sedated. This time under general anesthesia. The process takes 2 to 3 hours and he has to lay completely still.
We'll head back down on November 7 to audiology. They have his new BAHA hearing aid. They'll be helping us understand how it works and attempting to help him begin to get used to it. I e-mailed his school advocate (can't remember her real title right now) so that she'll be prepared to assist him in anyway possible as he returns to school with it. Nervous as can be about that. Sometimes the social parts of this whole thing are harder than the medical end.
We're heading to my sister's for dinner tonight and to celebrate Tanner's (my nephew) birthday nearly a month late! So sorry Tanner! Things have been crazy and your celebration suffered! We love you!!! I'm excited to visit.
Back to the Doctor
Colin coughed all night last night. If anything, it seems to be getting worse. He woke up with a temperature this morning. Poor kid. He says his chest isn't hurting, but you can here all of that stuff inside. His stomach is hurting something awful, I'm sure from the now like 4 weeks of coughing. So, I guess we'll be heading to the doctor.
Chloe's not up this morning, but she developed an abnormal diaper rash yesterday. I called the pediatrician yesterday and they think it might be yeast, but not sure where she got it because I guess it's typically something that comes from being on an antibiotic, which she has not. I suppose they may see her as well.
Jeremy called this am...and I had a breakdown. Nothing like burdening him with something he can't do anything about. I'm tired. I miss him. Oh, happy Friday!
Please, say a prayer for Colin that this gets better and goes away. And, miss Clo too...the rashes make her cranky, and she's not a cranky baby by nature.
Chloe's not up this morning, but she developed an abnormal diaper rash yesterday. I called the pediatrician yesterday and they think it might be yeast, but not sure where she got it because I guess it's typically something that comes from being on an antibiotic, which she has not. I suppose they may see her as well.
Jeremy called this am...and I had a breakdown. Nothing like burdening him with something he can't do anything about. I'm tired. I miss him. Oh, happy Friday!
Please, say a prayer for Colin that this gets better and goes away. And, miss Clo too...the rashes make her cranky, and she's not a cranky baby by nature.
Thursday, October 19, 2006
Welcome to Holland
Just got the mail today and as I was reading through a newsletter, I came across the essay below. It brought me to tears. I have the hardest time expressing, even to those closest to me, how much I am affected by Colin, how it has changed everything in my life. This is the closest I've come and since I tend not to express myself the way I should on this issue I thought maybe this would help me do just that.
I am not intending to make anyone feel bad through this post, so just keep that in mind when you're reading this.
But, most days, I really feel like no one around me gets this. I can't ever really talk openly about it to anyone. Jeremy understands it and deals with it in his own way, but even that is different from the way I deal with it. Most people downplay it, because that's the socially correct thing to do. A lot of people avoid it. And many people think I make a bigger deal of it than it is...his condition is so mild, you can barely tell you say. But, I know! It's there! He knows! It's there! It makes me cry or want to cry everyday, because this is and always will be his life. Full of doctors and probably surgeries, things popping up all the time. Things always going a way you didn't expect. He'll always get looks; people will always ask questions. And, I as his mom have the hardest time with the answers. Mom's are supposed to have the answers, but on this, I don't. And, quite honestly, It's just not fair. And, most days I hate that.
No matter how many surgeries he has, the looks and questions will always be there. I love him the way he is, but hate that he has to deal with any of it. He deserves normal. I know he has a good life, and I intend to make sure that it is always that way. But, that doesn't change the fact that he will always have to deal with this and noone, not me, not his Dad, noone can change that. And, plain and simple, it's not fair. Not at all.
I'm not looking for pity or as I said trying to make anyone feel bad. You shouldn't have to get it. How can you get something you've never done? Noone expects you to understand physics unless you've gone to school for it. I get that. I just wish that someone else got me, understood that this all consumes me. Although, this is honestly something I really never want to have in common with anyone else. I think about it constantly. I hurt about it daily.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
by Emily Perl Kingsley
I am not intending to make anyone feel bad through this post, so just keep that in mind when you're reading this.
But, most days, I really feel like no one around me gets this. I can't ever really talk openly about it to anyone. Jeremy understands it and deals with it in his own way, but even that is different from the way I deal with it. Most people downplay it, because that's the socially correct thing to do. A lot of people avoid it. And many people think I make a bigger deal of it than it is...his condition is so mild, you can barely tell you say. But, I know! It's there! He knows! It's there! It makes me cry or want to cry everyday, because this is and always will be his life. Full of doctors and probably surgeries, things popping up all the time. Things always going a way you didn't expect. He'll always get looks; people will always ask questions. And, I as his mom have the hardest time with the answers. Mom's are supposed to have the answers, but on this, I don't. And, quite honestly, It's just not fair. And, most days I hate that.
No matter how many surgeries he has, the looks and questions will always be there. I love him the way he is, but hate that he has to deal with any of it. He deserves normal. I know he has a good life, and I intend to make sure that it is always that way. But, that doesn't change the fact that he will always have to deal with this and noone, not me, not his Dad, noone can change that. And, plain and simple, it's not fair. Not at all.
I'm not looking for pity or as I said trying to make anyone feel bad. You shouldn't have to get it. How can you get something you've never done? Noone expects you to understand physics unless you've gone to school for it. I get that. I just wish that someone else got me, understood that this all consumes me. Although, this is honestly something I really never want to have in common with anyone else. I think about it constantly. I hurt about it daily.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
by Emily Perl Kingsley
Colin - The Debater
Colin is still coughing a lot. I'm going to call the doc in the am if it is no better through the night tonight. He was up quite a bit last night, but said he was feeling fine this morning and headed off to school.
Yesterday was a long, frustrating day. This medicine makes it really difficult for him to concentrate and causes him to be a little on the mean side. He had to sit in time out yesterday for using mean words, and Colin - The Debater came shining through as he proclaimed, "well, I think it's mean that you would put a sick little boy in time out when he isn't feeling good at all!" Had to chuckle at that one, but he still did his six minutes.
Yesterday was a long, frustrating day. This medicine makes it really difficult for him to concentrate and causes him to be a little on the mean side. He had to sit in time out yesterday for using mean words, and Colin - The Debater came shining through as he proclaimed, "well, I think it's mean that you would put a sick little boy in time out when he isn't feeling good at all!" Had to chuckle at that one, but he still did his six minutes.
Wednesday, October 18, 2006
Yah! Good News Here.
Colin headed off to school today...still couging, but feeling much better. Today should be a long day for his teacher. :) The albuterol makes him quite hyper. If nothing else, he has energy. Yesterday was a long day to say the least, but he is sleeping much better. Last night he didn't cough at all from midnight until around 6 this morning. Or, I should say I didn't hear him...I was a little tired. :)
In my last post, with everything else going on, I forgot to mention that we received approval on Saturday from the insurance for his BAHA hearing aid. That means we should have it and be able to try it out in a matter of weeks. I'm so excited for him and thrilled that something went smoothly with the insurance for once. His primary and secondary companies denied it, but it was picked up by the third. Yah!
In my last post, with everything else going on, I forgot to mention that we received approval on Saturday from the insurance for his BAHA hearing aid. That means we should have it and be able to try it out in a matter of weeks. I'm so excited for him and thrilled that something went smoothly with the insurance for once. His primary and secondary companies denied it, but it was picked up by the third. Yah!
Monday, October 16, 2006
Seeking: Rest
This weekend was full. Saturday morning, Colin attempted to head back to basketball after three weeks out because of his cold/cough.
He played for a while, but ended up having to sit out most of the game at the end because his coughing wouldn't give up. It got worse as the weekend progressed, and today we headed to the doctor. He is having a lot of trouble breathing and can't seem to sleep well, so the doctor told us to start using his nebulizer and albuterol every four hours, at least through this week to stop the spasms he is having in his lungs. He suspects he may have a sinus infection as well, but wants to see if this will help clear things up before starting him on an antibiotic. I feel so bad for him. The coughing was so bad yesterday that he actually vomitted. Hopefully the two doses he gets in before bed will help him sleep. If not, we'll be up every four hours tonight as well. Although we may end up awake anyway, the albuterol is a steroid and often causes him to lose sleep anyway.
After basketball, we headed to the pumpkin patch with Aunt Alicia and Jason to pick pumpkins and headed home for a day of carving. It was a lot of fun and the pumpkins turned out great! Thanks for spending the day with us guys! We all had a blast!
Jeremy made it home Sunday and returned back to work today. It was nice to have him home, but for some reason the past two days ended up exhausting me more than relaxing me. It's so difficult trying to cram in quality time when there's laundry that needs to be done and groceries to be bought before he has to return. We're all tired, but glad that work allowed for him to return home again this week. It was nice to have someone to be awake with during the coughing spells last night...someone to share the worry with, I guess it sort of lifts some of the burden. Our smoke detector ended up defecting last night as well. Ha! What a night! So, after he checked on Colin, Jerm could hear Chloe stirring. He got her out of bed so we could play with her for a little bit, mind you this was well past midnight. She was so groggy and giddy, and very cute I might add. :) She was patty-caking for him and we both got a big kick out of it. She is such a good baby. After a little while, I just took her in and laid her back in her crib. She rolled over and went right back to sleep. What an angel-baby!
Praying for a good night's rest for everyone!
He played for a while, but ended up having to sit out most of the game at the end because his coughing wouldn't give up. It got worse as the weekend progressed, and today we headed to the doctor. He is having a lot of trouble breathing and can't seem to sleep well, so the doctor told us to start using his nebulizer and albuterol every four hours, at least through this week to stop the spasms he is having in his lungs. He suspects he may have a sinus infection as well, but wants to see if this will help clear things up before starting him on an antibiotic. I feel so bad for him. The coughing was so bad yesterday that he actually vomitted. Hopefully the two doses he gets in before bed will help him sleep. If not, we'll be up every four hours tonight as well. Although we may end up awake anyway, the albuterol is a steroid and often causes him to lose sleep anyway.
After basketball, we headed to the pumpkin patch with Aunt Alicia and Jason to pick pumpkins and headed home for a day of carving. It was a lot of fun and the pumpkins turned out great! Thanks for spending the day with us guys! We all had a blast!
Jeremy made it home Sunday and returned back to work today. It was nice to have him home, but for some reason the past two days ended up exhausting me more than relaxing me. It's so difficult trying to cram in quality time when there's laundry that needs to be done and groceries to be bought before he has to return. We're all tired, but glad that work allowed for him to return home again this week. It was nice to have someone to be awake with during the coughing spells last night...someone to share the worry with, I guess it sort of lifts some of the burden. Our smoke detector ended up defecting last night as well. Ha! What a night! So, after he checked on Colin, Jerm could hear Chloe stirring. He got her out of bed so we could play with her for a little bit, mind you this was well past midnight. She was so groggy and giddy, and very cute I might add. :) She was patty-caking for him and we both got a big kick out of it. She is such a good baby. After a little while, I just took her in and laid her back in her crib. She rolled over and went right back to sleep. What an angel-baby!
Praying for a good night's rest for everyone!
Friday, October 13, 2006
Do you believe?
The
came last night!
and Colin was thrilled! He woke me up this morning around 6. When he went to check his little tooth pillow, the money went flying and was lost. We basically had to strip his bed to find it. All is well, and $5 is the going rate for that first precious baby tooth.
Today, as always, was such a wonderful day with Chloe. For months, we have been trying to get her to clap, and today at lunch, without any prompting, she mastered it on her own. She is, without a doubt, a Carnahan. She will not be pushed to do anything until she is good and ready. It was so cute, and she was so proud. She just kept doing it over and over again and giggling, which of course made me giggle. I love this baby. Can you tell?!?
I have a button that has Colin's t-ball picture on it from a few years ago. Chloe discovered it today and claimed it as her own. She was screaming for it, so I cut the pin off the back. She carried it around for the majority of the day...kissing it and talking to her brother. So cute!
When Colin got home, I surprised him with a trip back to Petco for a new tank for Philbert. They were running a special on 40 gallon breeder tanks, which as you can see from the picture below, of his old tank, he needs more room. I figured Philbert was getting enough play on this blog that he was probably deserving of a picture. :) Anyway, when you bought the stand, which you pretty much have to have with a tank that large, you got the tank for free. He was so excited and can't wait until Sunday when Daddy comes home and can set it up. This child is animal obsessed. He has declared that he no longer wants to be a palentologist. He is planning on becoming a veterinarian, so he can have his own big building and be the boss of other people. Sounds like a plan to me, and he is, definately well suited for the job.
After coming home, we went straight to my sister, Sherri's, for dinner. Thanks again Sherri and Jeff. And then dropped the girls off at Na-Na and Pa-Pa's, thanks as well guys!!! And then we took the boys to the haunted house here in town. Colin was not at all scared...for his first time, I was surprised. He said he wasn't scared "because his Dad jumps out just like that all the time, so he must just be used to it." He still thought it was fun even though the scare-factor wasn't there.
came last night!
and Colin was thrilled! He woke me up this morning around 6. When he went to check his little tooth pillow, the money went flying and was lost. We basically had to strip his bed to find it. All is well, and $5 is the going rate for that first precious baby tooth.
Today, as always, was such a wonderful day with Chloe. For months, we have been trying to get her to clap, and today at lunch, without any prompting, she mastered it on her own. She is, without a doubt, a Carnahan. She will not be pushed to do anything until she is good and ready. It was so cute, and she was so proud. She just kept doing it over and over again and giggling, which of course made me giggle. I love this baby. Can you tell?!?
I have a button that has Colin's t-ball picture on it from a few years ago. Chloe discovered it today and claimed it as her own. She was screaming for it, so I cut the pin off the back. She carried it around for the majority of the day...kissing it and talking to her brother. So cute!
When Colin got home, I surprised him with a trip back to Petco for a new tank for Philbert. They were running a special on 40 gallon breeder tanks, which as you can see from the picture below, of his old tank, he needs more room. I figured Philbert was getting enough play on this blog that he was probably deserving of a picture. :) Anyway, when you bought the stand, which you pretty much have to have with a tank that large, you got the tank for free. He was so excited and can't wait until Sunday when Daddy comes home and can set it up. This child is animal obsessed. He has declared that he no longer wants to be a palentologist. He is planning on becoming a veterinarian, so he can have his own big building and be the boss of other people. Sounds like a plan to me, and he is, definately well suited for the job.
After coming home, we went straight to my sister, Sherri's, for dinner. Thanks again Sherri and Jeff. And then dropped the girls off at Na-Na and Pa-Pa's, thanks as well guys!!! And then we took the boys to the haunted house here in town. Colin was not at all scared...for his first time, I was surprised. He said he wasn't scared "because his Dad jumps out just like that all the time, so he must just be used to it." He still thought it was fun even though the scare-factor wasn't there.
Thursday, October 12, 2006
Calling All Tooth Fairies
Colin lost his first tooth! We've been wiggling for around 4 months now.
He was crying, honestly crying, because it hurt. He's been wiggling a lot more over the past couple of days. Cousing Tanner just lost a molar and I think that was major motivation. I asked if I could wiggle it and when I did, it turned sideways, which of course sent him into a tantrum. (No drama here folks! Whose kid is he anyway?) So, I basically had to chase him down and sit on him to pull it out. And then of course we had the drama of the blood. Oh, that first tooth...I tried to get him to admit that it really didn't hurt. He is holding firm, claiming "you know mom, I don't ever cry unless it really hurts!" If only that were true in all situations!
So, rumor has it the Tooth Fairy gives $5 these days for that first prized tooth!!! We shall see. Na-Na and Pa-Pa were called to come and verify that the tooth had indeed been lost. Check! (and to supply the Fairy with $5 so she didn't have to venture into the cold!) The temperature has been steadily dropping today and there were reports of flurries.
So, the kids and I went out and cut the last of this year's zinnia's so we could enjoy them inside while winter takes it's toll on the plants from which they came.
Otherwise a pretty quiet day. Chloe and I cleaned (or I cleaned and Chloe protested the use of that frightening vaccuum) and had lunch with Aunt Sherri...who by the way, is without a doubt pregnant. She is getting rounder by the day. Two babies in one year. Crazy. They'll learn the sex by the end of the month...I'm guessing a boy. Time will tell.
He was crying, honestly crying, because it hurt. He's been wiggling a lot more over the past couple of days. Cousing Tanner just lost a molar and I think that was major motivation. I asked if I could wiggle it and when I did, it turned sideways, which of course sent him into a tantrum. (No drama here folks! Whose kid is he anyway?) So, I basically had to chase him down and sit on him to pull it out. And then of course we had the drama of the blood. Oh, that first tooth...I tried to get him to admit that it really didn't hurt. He is holding firm, claiming "you know mom, I don't ever cry unless it really hurts!" If only that were true in all situations!
So, rumor has it the Tooth Fairy gives $5 these days for that first prized tooth!!! We shall see. Na-Na and Pa-Pa were called to come and verify that the tooth had indeed been lost. Check! (and to supply the Fairy with $5 so she didn't have to venture into the cold!) The temperature has been steadily dropping today and there were reports of flurries.
So, the kids and I went out and cut the last of this year's zinnia's so we could enjoy them inside while winter takes it's toll on the plants from which they came.
Otherwise a pretty quiet day. Chloe and I cleaned (or I cleaned and Chloe protested the use of that frightening vaccuum) and had lunch with Aunt Sherri...who by the way, is without a doubt pregnant. She is getting rounder by the day. Two babies in one year. Crazy. They'll learn the sex by the end of the month...I'm guessing a boy. Time will tell.
A Good Day
Chloe started yesterday with a nice long nap. Seriously, as soon as we got Colin off to school, she headed back to bed. I guess raining, chilly days do that to a lot of us. She slept until 12:30, so I finally got back on track with my medical transcription schoolwork. I had a few weeks of downtime...but, we're going strong now. (Minus the time I take to do much more important things...like blog.) :)
We played most of the afternoon until Colin came home and then we all worked on Colin's homework...Chloe practiced counting cheerios while he counted all of the clocks and watches in our home.
Thanks to Sherri and Jeff for watching the kids so that I could go to dinner with Mark, Alicia, and Angel. And thanks for the invite, Mark, I had a great time. It is so nice to relax and talk to adults! Alicia, you have officially been blogged by the Carnahan Clan. The more you visit, the more hits you get!!!! Come often! :)
Got to talk to an old friend for a while last night. It is always so nice to catch up! We need to do that more often, K! And, as always, Nat, thanks for keeping me company late-night while the men are off foraging for food! :0) I am so thankful to have you in my life. You're my everyday life saver and honestly, you keep me sane...who do I call when I need a reality check...you. It was just a small plane. :) Everything is fine. Thanks always!
I think the first winter colds have officially left our home...everyone started the day sniffle free. Colin is still carrying on the cough. He tends to do that, but we're heading into week 3...praying it goes away soon.
We played most of the afternoon until Colin came home and then we all worked on Colin's homework...Chloe practiced counting cheerios while he counted all of the clocks and watches in our home.
Thanks to Sherri and Jeff for watching the kids so that I could go to dinner with Mark, Alicia, and Angel. And thanks for the invite, Mark, I had a great time. It is so nice to relax and talk to adults! Alicia, you have officially been blogged by the Carnahan Clan. The more you visit, the more hits you get!!!! Come often! :)
Got to talk to an old friend for a while last night. It is always so nice to catch up! We need to do that more often, K! And, as always, Nat, thanks for keeping me company late-night while the men are off foraging for food! :0) I am so thankful to have you in my life. You're my everyday life saver and honestly, you keep me sane...who do I call when I need a reality check...you. It was just a small plane. :) Everything is fine. Thanks always!
I think the first winter colds have officially left our home...everyone started the day sniffle free. Colin is still carrying on the cough. He tends to do that, but we're heading into week 3...praying it goes away soon.
Tuesday, October 10, 2006
Girls Just Wanna Have Fun
My niece, McKenna, came to visit for the day today. It is so much fun having the girls so close together. It was a little hectic when they were younger, and don't get me wrong, it was still an exhausting day, but it was a lot of fun watching them play today.
They are on very similar schedules now, so they napped at the same time, ate at the same time, and played the rest of the time.
Colin had a great day at school today...gym day is always a good day, according to him! Mark stopped by later in the day for a quick visit and Na-Na and Pa-Pa stopped in as well for a surprise dinner. It's always nice to visit.
They are on very similar schedules now, so they napped at the same time, ate at the same time, and played the rest of the time.
Colin had a great day at school today...gym day is always a good day, according to him! Mark stopped by later in the day for a quick visit and Na-Na and Pa-Pa stopped in as well for a surprise dinner. It's always nice to visit.
Monday, October 09, 2006
Geneticist...check
Great appointment today...went through the checklist of specialists with the geneticist, who was extremely nice and thorough. She basically went down a list, which we should have had the first time around, with the not so thorough geneticist. Our goal, to be sure that we were up-to-date and in contact with all of the necessary specialists.
Ear, Nose and Throat...check
Orthopedics...check
Neurosugeon...check
Otolaryngologist...check
Opthamalogist...check
Craniofacial team...check
Geneticist...now a check
Cardiologist...they are looking into a follow up, but basically check.
So, looks like we're good to go for now. It was a good appointment, for once, someone made me feel like we have had it under control after all. Nothing missing. Yah! Chloe did really well and we headed to Petco after it was all over seeking a new beta, who is happily floating in his new home.
Colin also picked 10 feeder fish for Philbert, our turtle, and spent an hour watching him eat them one-by-one. So much fun...he was actually squealing like he used to when he was little. Ahhh...the simple things in life.
This weekend was nice. Nothing elaborate. Jeremy made dinner Saturday and we watched a family movie and a non-G rated movie after the kids went to bed. It was nice to have some low-key, calm, uninterrupted family time. We are on to week 5 without Daddy. Chloe still isn't adjusting. As far as she is concerned, he is here for one reason and one reason only...to hold her. She caught him off gaurd on Saturday morning with her first deliberate little kiss. He didn't understand what she was trying to do at first and tried to move away. She made it very clear that he was getting a kiss...baby spit and all...by protesting with a growl and moving his face back to hers. So cute!
Ear, Nose and Throat...check
Orthopedics...check
Neurosugeon...check
Otolaryngologist...check
Opthamalogist...check
Craniofacial team...check
Geneticist...now a check
Cardiologist...they are looking into a follow up, but basically check.
So, looks like we're good to go for now. It was a good appointment, for once, someone made me feel like we have had it under control after all. Nothing missing. Yah! Chloe did really well and we headed to Petco after it was all over seeking a new beta, who is happily floating in his new home.
Colin also picked 10 feeder fish for Philbert, our turtle, and spent an hour watching him eat them one-by-one. So much fun...he was actually squealing like he used to when he was little. Ahhh...the simple things in life.
This weekend was nice. Nothing elaborate. Jeremy made dinner Saturday and we watched a family movie and a non-G rated movie after the kids went to bed. It was nice to have some low-key, calm, uninterrupted family time. We are on to week 5 without Daddy. Chloe still isn't adjusting. As far as she is concerned, he is here for one reason and one reason only...to hold her. She caught him off gaurd on Saturday morning with her first deliberate little kiss. He didn't understand what she was trying to do at first and tried to move away. She made it very clear that he was getting a kiss...baby spit and all...by protesting with a growl and moving his face back to hers. So cute!
Saturday, October 07, 2006
Translation
Colin seems much better today. Couldn't sleep last night, so I actually ended up looking up much of the medical jargon. I should have just done it right away. I always end up thinking about it until I get the definitions. So, here's the translation. It states:
His left orbit [eye socket] is elevated somewhat greater than the right. His left cheek is somewhat hypoplastic [pertaining to the underdevelopment of tissue]. His left ear bas been reconstructed with otogenous [originating from the ear] cartilage. [which is untrue...the cartilage is from his rib.] His mandible shows a 5 degrees upward cant with minimal change to the maxilla. His palate shows some hemiparesis [paralysis affecting only one side] on the left side. His cranial nerve exam was difficult because of inability to cooperate. (Of course, he was playing shy. We all know better. :)) Intraoral examination reveals the presence of mild left hemipalatal paresis [same, paralysis on one side] with his palate elevating up and to the right. Perceptual velopharyngeal [pertaining to the soft palate and pharynx...pertains to speech] assessment today reveals symptoms of bilateral inconsistnet visible nasal emission and mild hypernasality [speech disorder occurring when the plate and pharnyx tissues do not close properly]. He obtained a weighted speech score of 2 today indicative of a borderline competent velopharyngeal mechanism.
The plan: we will begin monitoring the growth and development of Colin's jaws over time. He may be a candidate for a soft tissue balancing procedure in the future, as well as jaw surgery to level and align his dental planes.
The only speech articulation error noted during speech production today is interdentalization of sibilants (Christi's note: slurring of s's. Correct me if I'm wrong, but I'm pretty sure that a lot of younger kids have this and outgrow it.)
So there you have it. Nothing new really, except the shifting jaw. And the speech junk, which I am not concerned at all about. :) Obviously, Colin is having no difficulty communicating. Ha!
Jeremy is sleeping soundly in our own bed. Yah! Colin is concerned that he needs to be checked on consistently...I have assured him that Daddy has this sleeping thing down pat and can handle it on his own. If he's lucky he'll get 4 hours. Poor guy! I haven't even let Chloe see him yet. Once she realizes his home, she won't let him leave her side. At all...she misses him. Daddy's girl without a doubt.
I'll update after Monday's appointment, but I am off to spend the weekend with my WHOLE family!
His left orbit [eye socket] is elevated somewhat greater than the right. His left cheek is somewhat hypoplastic [pertaining to the underdevelopment of tissue]. His left ear bas been reconstructed with otogenous [originating from the ear] cartilage. [which is untrue...the cartilage is from his rib.] His mandible shows a 5 degrees upward cant with minimal change to the maxilla. His palate shows some hemiparesis [paralysis affecting only one side] on the left side. His cranial nerve exam was difficult because of inability to cooperate. (Of course, he was playing shy. We all know better. :)) Intraoral examination reveals the presence of mild left hemipalatal paresis [same, paralysis on one side] with his palate elevating up and to the right. Perceptual velopharyngeal [pertaining to the soft palate and pharynx...pertains to speech] assessment today reveals symptoms of bilateral inconsistnet visible nasal emission and mild hypernasality [speech disorder occurring when the plate and pharnyx tissues do not close properly]. He obtained a weighted speech score of 2 today indicative of a borderline competent velopharyngeal mechanism.
The plan: we will begin monitoring the growth and development of Colin's jaws over time. He may be a candidate for a soft tissue balancing procedure in the future, as well as jaw surgery to level and align his dental planes.
The only speech articulation error noted during speech production today is interdentalization of sibilants (Christi's note: slurring of s's. Correct me if I'm wrong, but I'm pretty sure that a lot of younger kids have this and outgrow it.)
So there you have it. Nothing new really, except the shifting jaw. And the speech junk, which I am not concerned at all about. :) Obviously, Colin is having no difficulty communicating. Ha!
Jeremy is sleeping soundly in our own bed. Yah! Colin is concerned that he needs to be checked on consistently...I have assured him that Daddy has this sleeping thing down pat and can handle it on his own. If he's lucky he'll get 4 hours. Poor guy! I haven't even let Chloe see him yet. Once she realizes his home, she won't let him leave her side. At all...she misses him. Daddy's girl without a doubt.
I'll update after Monday's appointment, but I am off to spend the weekend with my WHOLE family!
Friday, October 06, 2006
A Series of Updates
Yesterday ended with Chloe's first trip to the ER. She's fine. More of a Mommy-freak out than anything. She loves standing in the bath, holding on to the side and then sitting with force so that the water splashes all around her. It always brings around a lot of giggles...from us all, except Jeremy, who usually worries she'll get hurt. (Fear confirmed) Honestly, I never expected anything negative to EVER come of it. The kids keep little plastic stacking cups in the tub, which by the way were made specifically for this purpose. As Chloe went to sit last night, one of the cups (upside down) slipped under her bum and actually cut her. And, of course, I freaked out. Apparently, that area bleeds a lot, so the water immediately turned pink and I freaked out. I couldn't tell what was bleeding exactly, or how bad it was, so Colin and I rushed her to the ER. We weren't even there an hour...thank goodness...the doctor basically just told me I freaked out. She's been fine today and I was glad that our biggest fear, the first potty, went smoothly, and the wound appears much better today.
Over the last 24 hours, Colin has developed a cold. Which, I am quickly beginning to believe may be turning into yet another sinus infection. So, we spent the evening fighting over medicine. Which, he eventually gagged down with minimal tears.
Which leads me to the final update. We received an update today in the mail of the summary from the Cleft-Craniofacial Team we met with on September 8th: Most of it is medical jargon, which I will look up this week, but I'm too tired right now, so I am just going to retype it. It states:
His left orbit is elevated somewhat greater than the right. His left cheek is somewhat hypoplastic. His left ear bas been reconstructed with otogenous cartilage. His mandible shows a 5 degrees upward cant with minimal change to the maxilla. His palate shows some hemiparesis on the left side. His cranial nerve exam was difficult because of inability to cooperate. (Of course, he was playing shy. We all know better. :)) Intraoral examination reveals the presence of mild left hemipalatal paresis with his palate elevating up and to the right. Perceptual velopharyngeal assessment today reveals symptoms of bilateral inconsistnet visible nasal emission and mild hypernasality. He obtained a weighted speech score of 2 today indicative of a borderline competent velopharyngeal mechanism.
The plan: we will begin monitoring the growth and development of Colin's jaws over time. He may be a candidate for a soft tissue balancing procedure in the future, as well as jaw surgery to level and align his dental planes.
The only speech articulation error noted during speech production today is interdentalization of sibilants (Christi's note: slurring of s's. Correct me if I'm wrong, but I'm pretty sure that a lot of younger kids have this and outgrow it.)
We head to genetics on Monday for a review of the breakdown of his diagnosis. Just to be sure that all of the bases are covered. Things seem to keep popping up, which I know we have been told to expect with his conditions, but the Craniofacial Team thinks that the new geneticist at Children's can help make us more aware of any outstanding issues which we haven't looked into yet.
The problem with GoldenHar, and Hemifacial Microsomia for that matter, is that they are both conditions in which an issue that wasn't present early on can develop over time just because our bodies change as we grow and Colin's bones, cartilage, growth patterns, etc. are different than the average person. So, as we've come to learn, most of this is just a waiting game.
Happy day tomorrow. Jeremy will be coming home for a few days. Colin is anxious to say the least.
Over the last 24 hours, Colin has developed a cold. Which, I am quickly beginning to believe may be turning into yet another sinus infection. So, we spent the evening fighting over medicine. Which, he eventually gagged down with minimal tears.
Which leads me to the final update. We received an update today in the mail of the summary from the Cleft-Craniofacial Team we met with on September 8th: Most of it is medical jargon, which I will look up this week, but I'm too tired right now, so I am just going to retype it. It states:
His left orbit is elevated somewhat greater than the right. His left cheek is somewhat hypoplastic. His left ear bas been reconstructed with otogenous cartilage. His mandible shows a 5 degrees upward cant with minimal change to the maxilla. His palate shows some hemiparesis on the left side. His cranial nerve exam was difficult because of inability to cooperate. (Of course, he was playing shy. We all know better. :)) Intraoral examination reveals the presence of mild left hemipalatal paresis with his palate elevating up and to the right. Perceptual velopharyngeal assessment today reveals symptoms of bilateral inconsistnet visible nasal emission and mild hypernasality. He obtained a weighted speech score of 2 today indicative of a borderline competent velopharyngeal mechanism.
The plan: we will begin monitoring the growth and development of Colin's jaws over time. He may be a candidate for a soft tissue balancing procedure in the future, as well as jaw surgery to level and align his dental planes.
The only speech articulation error noted during speech production today is interdentalization of sibilants (Christi's note: slurring of s's. Correct me if I'm wrong, but I'm pretty sure that a lot of younger kids have this and outgrow it.)
We head to genetics on Monday for a review of the breakdown of his diagnosis. Just to be sure that all of the bases are covered. Things seem to keep popping up, which I know we have been told to expect with his conditions, but the Craniofacial Team thinks that the new geneticist at Children's can help make us more aware of any outstanding issues which we haven't looked into yet.
The problem with GoldenHar, and Hemifacial Microsomia for that matter, is that they are both conditions in which an issue that wasn't present early on can develop over time just because our bodies change as we grow and Colin's bones, cartilage, growth patterns, etc. are different than the average person. So, as we've come to learn, most of this is just a waiting game.
Happy day tomorrow. Jeremy will be coming home for a few days. Colin is anxious to say the least.
Thursday, October 05, 2006
A Friend Suggested We Move to Canada
Yesterday made that idea feel very plausible. Free healthcare. For everyone. No insurance claims. No bills to sift through. No companies to call. On the other hand, I think I am very close to becoming an insurance claim expert. I mean, it only took me around 3 hours to make all of my calls yesterday to have claims resubmitted, to complete fund reimbursement requests, and to fight with our insurance companies regarding who should pay and what they should pay. Why, after six years, there are still issues with all of our doctors and insurance providers, I will never understand. This isn't rocket science people...same appointments, similar procedures, same billing procedures...yet, something always goes wrong. Yesterday's main issue included a denied claim from a surgery last spring. Apparently, it takes approximately 18 months for someone in billing to realize that the bill was not paid in full by one company or another. And, apparently the most obvious method for getting payment is to send a bill to me so that I can call them (the department sending the bill) and ask them to resubmit the claim with all of our insurance information, which of course they already have on file. Resubmiting without sending me a bill first would probably be entirely too time consuming. Oh, the US medical system is so grand.
To top it off, apparently Pennsylvania has changed the Medicaid system. So, I received information in the mail expressing an urgency for us to pick a carrier for Colin's Medicaid. This required calling the long list of doctor's, according to the person on the line from Enrollment Services, and requesting a list of the plans that they accepted. (Although the letter clearly stated that my Enrollment Specialist could help in providing this information.) I started the calling and on speciaist 3 decided to call it quits after realizing that all 3 accepted different plans. Too many tears (thanks to PMS) to continue calling and carrying on rational conversation. So, I will be working on that today, along with the rest of our insurance issues. Anyone out there who knows how to avoid the touchtone prompts? Feel free to share your tips. I am at this point praying that we are able to find a plan that the "most important" specialists share, so that we don't have to worry about a long list of consults with new doctors over the next month. Pray for that too. We like our doctors.
On a happier note, we visited our neighbors for dinner yesterday and the kids had a blast. Matt is a year younger than Colin and Chloe is a year younger than Karen's twins, Jon and Will. They always play so well together and it was nice for all of us to have company for dinner. And, of course, a little adult conversation is nice as well.
Jon and Will.
Chloe Elaine.
Colin and Matt.
To top it off, apparently Pennsylvania has changed the Medicaid system. So, I received information in the mail expressing an urgency for us to pick a carrier for Colin's Medicaid. This required calling the long list of doctor's, according to the person on the line from Enrollment Services, and requesting a list of the plans that they accepted. (Although the letter clearly stated that my Enrollment Specialist could help in providing this information.) I started the calling and on speciaist 3 decided to call it quits after realizing that all 3 accepted different plans. Too many tears (thanks to PMS) to continue calling and carrying on rational conversation. So, I will be working on that today, along with the rest of our insurance issues. Anyone out there who knows how to avoid the touchtone prompts? Feel free to share your tips. I am at this point praying that we are able to find a plan that the "most important" specialists share, so that we don't have to worry about a long list of consults with new doctors over the next month. Pray for that too. We like our doctors.
On a happier note, we visited our neighbors for dinner yesterday and the kids had a blast. Matt is a year younger than Colin and Chloe is a year younger than Karen's twins, Jon and Will. They always play so well together and it was nice for all of us to have company for dinner. And, of course, a little adult conversation is nice as well.
Jon and Will.
Chloe Elaine.
Colin and Matt.
Tuesday, October 03, 2006
My Girls ~
A great weekend with my wonderful girls! Ten years since graduation and little has changed. I love it!!! So happy to spend time with the best of the best. All of my love to all of you!!
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