Yay for Getting to Know You! Make sure to check out Keely's blog for other Getting to Know You posts.
1. Would you rather bungee jump or skydive?
I would absolutely never ever in my entire life do either one of those things. I am horribly afraid of heights and it is out of the question.
2. When using a public restroom do you squat over the seat or sit.
I sit on it. And if everyone would sit on it the seat wouldn't be so gross because it's you squatters that are the ones always peeing on the seat!
3. Favorite flower?
Well I'm not real big into flowers but for some reason I have always thought the black rose was pretty cool. I mean I wouldn't use them around my house for decoration or anything but I like them.
4. Pedicure or manicure?
Pedicure. I have a horrible addiction to biting my nail so a manicure would really be a waste of my money.
5. How many siblings do you have?
One sister.
6. Do you pee in the shower?
In the mornings when I am running late and I don't have time to use the toilet. Yep, my mom's gonna kill me when she reads this.
7. Bikini, tankini, or one piece.
Tankini. Especially now that I have my baby flab.
8. Where do you hate to shop but go there anyway?
Walmart. It's too crowded. There are too many stupid people there. I hate it!
Sunday, February 28, 2010
Tuesday, February 23, 2010
This is How I Feel
I normally stay away from sharing how I feel about things on my blog whether it be personal, political, or religious. I like to keep the atmosphere here light since this blog is about Belli and her personality is nothing but light and fun. But I have been feeling a little angry and kind of resentful lately about some things and my readers have always been so supportive so I thought I would use this venue to vent. In the grand scheme of things these issues that I am about to talk about aren't really that heavy but they have been weighing heavy on me lately.
I have been very stressed lately about Belli's eating, or lack there of, and her constipation issues. I spend the majority of my time with Belli either trying to get her to eat, trying to get her to poop, or cleaning up her throw up when she gags herself because she doesn't want to eat. I'm not exaggerating when I say that this really is what I do the majority of the day. It is so frustrating because when she won't eat or poop sometimes once I am done trying I end up not enjoying whatever else I am doing with Belli because I'm mad that she won't eat or poop.
We went to her GI yesterday and she is finally back on the growth chart which is good but the doctor upped her dose of Miralax and referred Belli to an OT for feeding therapy. I am hopeful that this will help her eating but I am also realistic. They use a lot of trickery to get the child to eat but quiet honestly Belli is smarter than that. I just don't know that it will work. We will see. The upped dose of Miralax doesn't seem to be working either. She has had two teaspoons the past two days and still hasn't pooped. I just don't get it.
Another thing that has really been bothering me is what Belli's neuro told us last week about how her head might be tilted because of the bones fusing that way and not because of strength. I just don't understand how it went unnoticed for the five and a half months that she was in the halo. As a surgeon how do you NOT see that. This poor baby already has enough problems but now her head is tilted a little and the only way to fix it would be to break her neck and refuse it. There is still a possibility that it is a muscle problem but I don't feel that it is. Her PT doesn't think so either. I'm sorry to sound like I am whining but it's just not fair.
I think what both of these issues really boils down to is that I feel like Belli already has enough issues to deal with that have been caused by the Larsen's so why did God feel the need to add these little extras? I mean we already have enough to worry about with her walking and her spinal problems and then her future dealing with these problems. Why do we have to deal with not eating and not pooping too? Why did God have to let her bones fuse crooked. I mean that was something that could have been so easily prevented.
I know that God is not really to blame and that this has all happened for reasons that I may never know. But I will just be real honest with you about this. I'm pissed. I can deal with all the other problems just fine because they go along with the Larsen's Syndrome and I accepted those problems and moved on a long long time ago. But the little added "bonuses"? Nope. I haven't accepted those and moved on. Especially the problem with her spine. Not when it could have been avoided. Not when it SHOULD have been avoided.
But then I just try to remember how easy we really have it. There are so many more problems that other children are facing that we are not. So, I will just count my blessings and try to get over it and move on.
I have been very stressed lately about Belli's eating, or lack there of, and her constipation issues. I spend the majority of my time with Belli either trying to get her to eat, trying to get her to poop, or cleaning up her throw up when she gags herself because she doesn't want to eat. I'm not exaggerating when I say that this really is what I do the majority of the day. It is so frustrating because when she won't eat or poop sometimes once I am done trying I end up not enjoying whatever else I am doing with Belli because I'm mad that she won't eat or poop.
We went to her GI yesterday and she is finally back on the growth chart which is good but the doctor upped her dose of Miralax and referred Belli to an OT for feeding therapy. I am hopeful that this will help her eating but I am also realistic. They use a lot of trickery to get the child to eat but quiet honestly Belli is smarter than that. I just don't know that it will work. We will see. The upped dose of Miralax doesn't seem to be working either. She has had two teaspoons the past two days and still hasn't pooped. I just don't get it.
Another thing that has really been bothering me is what Belli's neuro told us last week about how her head might be tilted because of the bones fusing that way and not because of strength. I just don't understand how it went unnoticed for the five and a half months that she was in the halo. As a surgeon how do you NOT see that. This poor baby already has enough problems but now her head is tilted a little and the only way to fix it would be to break her neck and refuse it. There is still a possibility that it is a muscle problem but I don't feel that it is. Her PT doesn't think so either. I'm sorry to sound like I am whining but it's just not fair.
I think what both of these issues really boils down to is that I feel like Belli already has enough issues to deal with that have been caused by the Larsen's so why did God feel the need to add these little extras? I mean we already have enough to worry about with her walking and her spinal problems and then her future dealing with these problems. Why do we have to deal with not eating and not pooping too? Why did God have to let her bones fuse crooked. I mean that was something that could have been so easily prevented.
I know that God is not really to blame and that this has all happened for reasons that I may never know. But I will just be real honest with you about this. I'm pissed. I can deal with all the other problems just fine because they go along with the Larsen's Syndrome and I accepted those problems and moved on a long long time ago. But the little added "bonuses"? Nope. I haven't accepted those and moved on. Especially the problem with her spine. Not when it could have been avoided. Not when it SHOULD have been avoided.
But then I just try to remember how easy we really have it. There are so many more problems that other children are facing that we are not. So, I will just count my blessings and try to get over it and move on.
Sunday, February 21, 2010
Getting to Know You
Yay! I am finally able to do Keely's Getting to Know You this week. I have been so busy the past two weeks I haven't been able to do it. Here goes!
1. How often do you wash/change your sheets?
I plead the fifth. Seriously.
2. When is your birthday?
June 23
3. Have you ever met a bloggy friend in real life.
No. Well I have a bloggy friend that was a friend before I start blogging. Does that count?
4. Brad Pitt or George Clooney?
Oh gosh. That one's really tough. They are both so hot! I think I would pick George Clooney though.
5. If you could change one thing about your body what would it be?
How my stretched skin from being pregnant flops over my c-section scar.
6. How often do you wash your hair?
Every morning.
7. Do you have pets?
One dog. She'll be 14 in April. And I bet she is smellier than Keely's dog.
8. How many social networks do you belong to? If you had to, which one would you give up?
Facebook, Twitter, Blogger, Myspace. I would get rid of Myspace because I haven't actually signed in to it in forever.
1. How often do you wash/change your sheets?
I plead the fifth. Seriously.
2. When is your birthday?
June 23
3. Have you ever met a bloggy friend in real life.
No. Well I have a bloggy friend that was a friend before I start blogging. Does that count?
4. Brad Pitt or George Clooney?
Oh gosh. That one's really tough. They are both so hot! I think I would pick George Clooney though.
5. If you could change one thing about your body what would it be?
How my stretched skin from being pregnant flops over my c-section scar.
6. How often do you wash your hair?
Every morning.
7. Do you have pets?
One dog. She'll be 14 in April. And I bet she is smellier than Keely's dog.
8. How many social networks do you belong to? If you had to, which one would you give up?
Facebook, Twitter, Blogger, Myspace. I would get rid of Myspace because I haven't actually signed in to it in forever.
Friday, February 19, 2010
Five Question Friday
I am finally getting around to Five Question Friday (at 8:30 at night)! Thanks to Mama M for hosting. Here are Belli's answers to this weeks questions:
1. Have you ever hit an animal with your vehicle?
I may have squashed a few bugs here and there in my Cozy Coupe.
2. When you see a string on your clothes do you pull it off or cut it off?
Neither. I just yell "Mommy, get it off mommy get it oooooofffff!" Then my mommy gives me the look and I say, "Please!"
3. Did you have your own room or share a room when you were young?
The times we have lived at Mimi and Granddad's house I have my own room as long as my aunt isn't home. When she's home my mommy sleeps in the room with me. When we lived at daddy's and when I go over there for weekends I have my own room too.
4. Would you rather wear the same thing for the rest of your life or eat the same thing for the rest of your life?
I would rather eat nothing for the rest of my life.
5. What was your favorite TV show as a child.
So far it's Sesame Street and Little Einsteins.
Ok, that's it until next week!
1. Have you ever hit an animal with your vehicle?
I may have squashed a few bugs here and there in my Cozy Coupe.
2. When you see a string on your clothes do you pull it off or cut it off?
Neither. I just yell "Mommy, get it off mommy get it oooooofffff!" Then my mommy gives me the look and I say, "Please!"
3. Did you have your own room or share a room when you were young?
The times we have lived at Mimi and Granddad's house I have my own room as long as my aunt isn't home. When she's home my mommy sleeps in the room with me. When we lived at daddy's and when I go over there for weekends I have my own room too.
4. Would you rather wear the same thing for the rest of your life or eat the same thing for the rest of your life?
I would rather eat nothing for the rest of my life.
5. What was your favorite TV show as a child.
So far it's Sesame Street and Little Einsteins.
Ok, that's it until next week!
Wednesday, February 17, 2010
Wordless Wednesday
Instead of my usual Belli picture I am going to vary from the norm and post this picture of a painting I did last night at Sips N' Strokes. I don't know if you have this in your area, or something like it, but it's a really awesome place. They have a different painting every night and a teacher tell you step by step how to paint it. If you click on the link and look at the 16th that is what the painting was supposed to look like. And this is how mine turned out. It actually looks a lot better in person. Or at least that's what I am telling my self. I couldn't get the shiny spot on the bottom off and when I tried to take it without the flash is was just way to dark. Anywho. Here ya go...
Tuesday, February 16, 2010
Neuro Appointment Today
*Update*
Well, as always Belli is full of surprises and you just never know what you are going to get at her neuro appointments. The good news is that the bad alignment in her neck that was fused still looks good. That part is still lined up and her spinal cord is still safe.
The bad news is that her head has a slight tilt to it that may not be fixable with therapy. I noticed that her head tilted a little to the right but just assumed that it was an issue with strength in her neck. She's always had a collar and has never had a chance to use those neck muscles so it seemed plausible and at this point still is.
However, the most likely cause is that while she was in the halo one side was cranked a little tighter than the other and her head was in the halo like that. You just couldn't tell by looking at her. If so that means that her bones fused that way and therapy won't help.
We will go back in a month for a CT scan so her doctor can get a better look at the bones and we will know more then. If he sees that the bones have fused that way then we will discuss the options. I don't know what the options are but her doctor did say that he doesn't know that whatever he would have to do to fix it would be worth it after all that has been accomplished. Right now it isn't that noticeable so the best option may be just to leave it alone.
But in the mean time I will just pray that it is simply a strength issue and not a bone issue. But knowing Isabelle...it's probably the latter.
*Original Post*
I meant to post this last night since I pretty much covet all of your prayers but I forgot until just now.
Belli has an appointment today with her neuro. It's just a regular check up so no emergency or anything but these appointment always make me nervous. They just want to check and make sure everything is still lined up and looking good.
So please pray for a good report! I will post what the neuro says later today!
Well, as always Belli is full of surprises and you just never know what you are going to get at her neuro appointments. The good news is that the bad alignment in her neck that was fused still looks good. That part is still lined up and her spinal cord is still safe.
The bad news is that her head has a slight tilt to it that may not be fixable with therapy. I noticed that her head tilted a little to the right but just assumed that it was an issue with strength in her neck. She's always had a collar and has never had a chance to use those neck muscles so it seemed plausible and at this point still is.
However, the most likely cause is that while she was in the halo one side was cranked a little tighter than the other and her head was in the halo like that. You just couldn't tell by looking at her. If so that means that her bones fused that way and therapy won't help.
We will go back in a month for a CT scan so her doctor can get a better look at the bones and we will know more then. If he sees that the bones have fused that way then we will discuss the options. I don't know what the options are but her doctor did say that he doesn't know that whatever he would have to do to fix it would be worth it after all that has been accomplished. Right now it isn't that noticeable so the best option may be just to leave it alone.
But in the mean time I will just pray that it is simply a strength issue and not a bone issue. But knowing Isabelle...it's probably the latter.
*Original Post*
I meant to post this last night since I pretty much covet all of your prayers but I forgot until just now.
Belli has an appointment today with her neuro. It's just a regular check up so no emergency or anything but these appointment always make me nervous. They just want to check and make sure everything is still lined up and looking good.
So please pray for a good report! I will post what the neuro says later today!
Wednesday, February 10, 2010
Black and White Wednesday-Toothless Flashback
**Please visit my giveaway benefiting The Bell Center! All you need is one dollar and you can win some great stuff!**
Join in the Black and White Wednesday fun at The Long Road to China.
Join in the Black and White Wednesday fun at The Long Road to China.
Monday, February 8, 2010
Belliisms
**Make sure and come back tomorrow for the HUGE giveaway benefiting The Bell Center!!!**
Although Isabelle has her moments I can't say that she isn't full of laughs. Here are some of her more recent sayings.
When she wakes up in the morning she says, "Can Isabelle get up mom? Please mommy!"
A while back she was mumbling to herself and then suddenly says, "I tell you what!" Who she was telling what too I have no idea.
Last week we went out to dinner with some family and she looked at the waiter and said, "Hey, whatcha been doing?" She does that A LOT.
The other day when we were at the grocery store a man and his little girl walked by and he asked his little girl if she wanted some Goldfish. Isabelle said, "Please." I told her he wasn't talking to her and we kept walking. A few aisles later we saw the same man and she says, "Well hello there again."
I told Isabelle that the next time she touched the computer that she watches movies on I was going to put it up and she wouldn't be able to watch anymore. She said, "Your gonna put it up? Are you gonna throw it away in the trash can?"
And my favorite one that happened earlier today...
My dad was having a conversation with Belli about Jesus and at some point he asked her if she knew who Jesus was. She looked a him for a few seconds and said, "Does he play ball?"
Oh boy...
Although Isabelle has her moments I can't say that she isn't full of laughs. Here are some of her more recent sayings.
When she wakes up in the morning she says, "Can Isabelle get up mom? Please mommy!"
A while back she was mumbling to herself and then suddenly says, "I tell you what!" Who she was telling what too I have no idea.
Last week we went out to dinner with some family and she looked at the waiter and said, "Hey, whatcha been doing?" She does that A LOT.
The other day when we were at the grocery store a man and his little girl walked by and he asked his little girl if she wanted some Goldfish. Isabelle said, "Please." I told her he wasn't talking to her and we kept walking. A few aisles later we saw the same man and she says, "Well hello there again."
I told Isabelle that the next time she touched the computer that she watches movies on I was going to put it up and she wouldn't be able to watch anymore. She said, "Your gonna put it up? Are you gonna throw it away in the trash can?"
And my favorite one that happened earlier today...
My dad was having a conversation with Belli about Jesus and at some point he asked her if she knew who Jesus was. She looked a him for a few seconds and said, "Does he play ball?"
Oh boy...
Sunday, February 7, 2010
Getting to Know You
Just a couple of things before I answer Keely's Getting to Know You questions.
1. I realized that this post is not my 200th post, but the next one will be. When I wrote in my previous post that my next post would be my 200th I was going by what Blogger said and it counts drafts as actual posts and I have one draft that I haven't posted yet. Therefore my next post will be my 200th. For real this time!
2. If any of you have a home business or you make an cute crafts or anything and would be willing to donate your items for a giveaway benefiting The Bell Center please let me know! I was thinking for my 200th post I would do a giveaway and the way you would get your entries would be to donate to The Bell center. One dollar would equal one entry. But one I don't really know if people would be interested in that and two if would need people to donate a gift because it wouldn't make any since for me to pay for a gift because I could just use that money to donate. So.....feedback on this idea would be great! Would any of you want to either donate a gift or donate money to entries? Let me know! And if you have already donated then your entries will still be counted!
3. I have a prayer request for a very special family. My family and I have been very blessed with an amazing family as neighbors for the past 30 years. My sister and I grew up with their grandchildren (all eight of them), we trick or treated at their house every year, it's where I went when I came home from school and realized I had left my key and was locked out. They are not only neighbors but true friends. The patriarch of their family, Pawpaw, died earlier this morning. Please lift them up in prayer as they go through this tough time.
Ok...NOW it's time to get to some questions.
1. How many piercings do you have?
Zero. I am allergic to....something. I don't really know what I am allergic to but my ears get horribly infected whenever I try to pierce them. It's really disgusting actually. I used to have my belly button pierced (which oddly enough did not get infected ever) but I took that out when I got pregnant.
2. I love the sound of...?
Belli laughing, the doorbell when the pizza man gets here. Are those comparable?
3. Favorite city?
I guess any city with a beach.
4. Colts, Saints, or couldn't care less?
Saints.
5. Frozen yogurt or ice cream?
Mint chocolate chip ice cream.
6. Favorite appetizer?
Mozzarella sticks.
7. What item in your closet currently makes you the happiest?
My Alabama t-shirt.
8. Favorite facial moisterizer?
Clinique Age-defying. You know, cause I'm so old =-)
1. I realized that this post is not my 200th post, but the next one will be. When I wrote in my previous post that my next post would be my 200th I was going by what Blogger said and it counts drafts as actual posts and I have one draft that I haven't posted yet. Therefore my next post will be my 200th. For real this time!
2. If any of you have a home business or you make an cute crafts or anything and would be willing to donate your items for a giveaway benefiting The Bell Center please let me know! I was thinking for my 200th post I would do a giveaway and the way you would get your entries would be to donate to The Bell center. One dollar would equal one entry. But one I don't really know if people would be interested in that and two if would need people to donate a gift because it wouldn't make any since for me to pay for a gift because I could just use that money to donate. So.....feedback on this idea would be great! Would any of you want to either donate a gift or donate money to entries? Let me know! And if you have already donated then your entries will still be counted!
3. I have a prayer request for a very special family. My family and I have been very blessed with an amazing family as neighbors for the past 30 years. My sister and I grew up with their grandchildren (all eight of them), we trick or treated at their house every year, it's where I went when I came home from school and realized I had left my key and was locked out. They are not only neighbors but true friends. The patriarch of their family, Pawpaw, died earlier this morning. Please lift them up in prayer as they go through this tough time.
Ok...NOW it's time to get to some questions.
1. How many piercings do you have?
Zero. I am allergic to....something. I don't really know what I am allergic to but my ears get horribly infected whenever I try to pierce them. It's really disgusting actually. I used to have my belly button pierced (which oddly enough did not get infected ever) but I took that out when I got pregnant.
2. I love the sound of...?
Belli laughing, the doorbell when the pizza man gets here. Are those comparable?
3. Favorite city?
I guess any city with a beach.
4. Colts, Saints, or couldn't care less?
Saints.
5. Frozen yogurt or ice cream?
Mint chocolate chip ice cream.
6. Favorite appetizer?
Mozzarella sticks.
7. What item in your closet currently makes you the happiest?
My Alabama t-shirt.
8. Favorite facial moisterizer?
Clinique Age-defying. You know, cause I'm so old =-)
Friday, February 5, 2010
Five Question Friday
It's Friday again and that of course means Mama M's Five Question Friday!
1. What are you most afraid of?
The vacuum used to terrify me. I would scream and cry every time it was turned on and beg for someone to hold me. I still want someone to hold me but now I like to watch the vacuum.
2. Do you use a flat iron or curling iron?
I don't have enough hair for either. I am strictly a piggy tail girl.
3. Hands-free or phone to the ear?
Umm hello!? You're supposed to talk on thermometers. Didn't you know?
4. Do you have a matching bedroom set?
Yes but it's at my daddy's house right now. I'll get it back once he moves out of his apartments though!
5. Do you believe in the paranormal?
My mommy thinks that I had a ghost in my room at daddy's apartment named "Gook." So yes!
1. What are you most afraid of?
The vacuum used to terrify me. I would scream and cry every time it was turned on and beg for someone to hold me. I still want someone to hold me but now I like to watch the vacuum.
2. Do you use a flat iron or curling iron?
I don't have enough hair for either. I am strictly a piggy tail girl.
3. Hands-free or phone to the ear?
Umm hello!? You're supposed to talk on thermometers. Didn't you know?
4. Do you have a matching bedroom set?
Yes but it's at my daddy's house right now. I'll get it back once he moves out of his apartments though!
5. Do you believe in the paranormal?
My mommy thinks that I had a ghost in my room at daddy's apartment named "Gook." So yes!
Thursday, February 4, 2010
All About Belli and Me-Part 3
Ok, here is my final Q&A post. If you would like to read Part 1 and Part 2 just follow the links!
Tyler asked,
1. What is Belli's favorite food besides milk with Carnation? I know you say she doesn't eat much but when she does eat what does she like?
She loves yogurt! She has at least one carton of Activia or YoPlus a day. She also really likes grits and a bowl of Cheerios.
2. What is your favorite homemade meal your mom or dad makes?
Mozzarella Chicken. It's just chicken, spaghetti sauce, and mozzarella cheese but oh my gosh is it good!
Jody B asked,
3. What has been the very best part of your journey of motherhood?
Getting to see her finally reach the physical milestones that she is so delayed on. I will never forget the first times she rolled over, sat up on her own, started scooting, and more recently pulling into standing on her own (which she did for the first time about a week ago).
4. What has been your worst moment of motherhood?
The worst moment so far was the week she was in the hospital in traction and she had to lay flat on her back the whole week. I couldn't do anything for her and she was miserable. It was awful not being able to help her or make her more comfortable.
Anonymous (This is actually a friend of mine who lives in TX that has a daughter Belli's age with Larsen's also) asked,
5. When is Isabelle going to meet Addison!!!??? I have a feeling they are going to be friends for life!
For those of you who don't know I met Julie, Addison's mom, online a year or so ago through a Larsen's Syndrome message board. Her daughter's birthday is August 16th (or 15th!??! I can't remember now geez). Anywho, so she is about two weeks younger than Isabelle and was born with very similar issues that Isabelle had. I have a picture of her on this post. Her mom and I have become very good friends because we share so much in common not only with our daughters but other issues we have been through in life. I love her to death and we are really hoping our daughters will stay in touch as they get older. So, to answer the original question...hopefully soon! We have been talking about taking a beach trip over the summer together so the girls can meet and play. As soon as my sister and I know my summer school schedule we will know for sure when but it looks like it is going to be around July 10th! I hope it works out. I think they are going to be friends for life too!
Tyler asked,
1. What is Belli's favorite food besides milk with Carnation? I know you say she doesn't eat much but when she does eat what does she like?
She loves yogurt! She has at least one carton of Activia or YoPlus a day. She also really likes grits and a bowl of Cheerios.
2. What is your favorite homemade meal your mom or dad makes?
Mozzarella Chicken. It's just chicken, spaghetti sauce, and mozzarella cheese but oh my gosh is it good!
Jody B asked,
3. What has been the very best part of your journey of motherhood?
Getting to see her finally reach the physical milestones that she is so delayed on. I will never forget the first times she rolled over, sat up on her own, started scooting, and more recently pulling into standing on her own (which she did for the first time about a week ago).
4. What has been your worst moment of motherhood?
The worst moment so far was the week she was in the hospital in traction and she had to lay flat on her back the whole week. I couldn't do anything for her and she was miserable. It was awful not being able to help her or make her more comfortable.
Anonymous (This is actually a friend of mine who lives in TX that has a daughter Belli's age with Larsen's also) asked,
5. When is Isabelle going to meet Addison!!!??? I have a feeling they are going to be friends for life!
For those of you who don't know I met Julie, Addison's mom, online a year or so ago through a Larsen's Syndrome message board. Her daughter's birthday is August 16th (or 15th!??! I can't remember now geez). Anywho, so she is about two weeks younger than Isabelle and was born with very similar issues that Isabelle had. I have a picture of her on this post. Her mom and I have become very good friends because we share so much in common not only with our daughters but other issues we have been through in life. I love her to death and we are really hoping our daughters will stay in touch as they get older. So, to answer the original question...hopefully soon! We have been talking about taking a beach trip over the summer together so the girls can meet and play. As soon as my sister and I know my summer school schedule we will know for sure when but it looks like it is going to be around July 10th! I hope it works out. I think they are going to be friends for life too!
Wednesday, February 3, 2010
All About Belli and Me-Part 2
Here are the answers to the rest of the questions some of you guys had for Belli and Me.
Julia was very curious and asked a few questions...
1. Will Belli be able to walk without a walker when she gets older? Will she need a wheelchair?
There are no definite answers to these questions because they way Larsen's Syndrome affects people varies greatly. Isabelle will be able to walk without her walker eventually (she is actually pretty close to taking a couple of steps on her own now!). As she gains strength and practices more she should be able to walk on her own both with and without her ankles braces. It may always be easier for her to walk with the braces but she should be able to walk without those too eventually. Whether or not she will need a walker or wheelchair when she gets older really depends on her strength and how much pain she has in her joints. A lot of people with Larsen's have issues with arthritis as they get older so it really all depends on her and her body. So we will see!
2. How many more surgeries do you think Belli will have to have?
Again, another question with no definite answer! As of right now there is nothing else that needs to be corrected so if it stays that way then none. Unfortunately this is not likely to happen. I'm not being pessimistic just honest. Her hips are still out of socket and we have chosen to keep them that way but if at any point her ortho decides it would be better to put them in she will have to have that surgery done. Because of her hip dislocation her left leg is a little bit shorter than her right leg, If we never put her hips back in the socket then when she is older and finished growing I will allow her to make the choice of whether she want to have a bone lengthening surgery or continue to wear a lift in her shoe. So far her spine is still looking good (knock on wood) and we are hopeful she will not have to have another surgery anytime soon. However, even if it does continue to stay aligned she will have to have her current fusion "touched up" for a lack of a better phrase when she is an adult. After a while the fusion will start to break down and will need to be fixed. There is also a risk for scoliosis but as of right now it does not seem to be a problem. So again, I guess we will just have to see.
3. Is Larsen's something that can be cured with surgery? Meaning she will still have it but she will be able to function normally after all the muscle and skeletal issues are fixed.
No. Larsen's is a genetic disorder that cannot be cured. You can have surgeries and therapy to help fix the problems but it cannot be cured. Even the surgeries are not always a perfect fix and she will always have loose joints.
4. How did you become such a big Alabama fan?
My mom and uncle both went to Alabama and my dad grew up as an Alabama fan so my sister, cousins, and I all grew up knowing no other way of life. It was something that was ingrained in us from the beginning.
5. Tell the stories of Belli's birth. I know Larsen's was a surprise to you when she was born so I was just curious how it all went down. (Jody B also wanted to know the answer to this question).
Well the Larsen's was not a complete surprise but I didn't not know tht she had Larsen's before she was born. Let me explain. When my ex-husband and I went for the 20 week ultrasound to find out the sex of the baby they also saw that she had clubbed feet and it looked like one of her hips was turned a weird way. The clubbed feet was not a complete surprise since my ex-husband and other members of his family had clubbed feet but because of her hip they told us to come back in a few weeks for another ultrasound to see if they could get a better look. So I went back a few weeks later and that's when they told me the news. Not only were Belli's feet clubbed but her hips looked like they were dislocated and her knees were bent the wrong way. I was devastated to say the least. My doctor set up an appointment at a different hospital to get a 3D ultrasound for a month later. We went to that appointment and after 45 minutes of taking about a billion pictures and them looking from every angle they could get to we were told there was nothing wrong other that the clubbed feet. So who are you going to believe? The ultrasound technician with a regular old ultrasound or a specialist with a 3D ultrasound. We chose the specialist. At this time I was still living in Mobile and I moved back to Birmingham a few weeks later. I had an ultrasound done here every couple of weeks just to check on the baby and no one here saw anything wrong either. She was breech and she stayed that way the whole pregnancy. I scheduled a c-section for a week before her due date. When they took Belli out she was not breathing. Her first APGAR score was 1. She bounced back quickly though and her second APGAR score was 9. They brought her over to me and I asked to see her feet. The nurses (or whoever they were) just sort of looked at each other and I knew at that moment that the original ultrasound was right. They called an orthopedist in the next day and that's when he told me she likely had Larsen's Syndrome. So that's my birth story!
Wow! Ok, since I got so long winded and you guys probably have better things to do than continue reading my answers to your questions I'm going to call it quits for now. Part 3 will be posted sometime this week so if I still haven't answered your question yet please come back. I promise I will get to it!
Julia was very curious and asked a few questions...
1. Will Belli be able to walk without a walker when she gets older? Will she need a wheelchair?
There are no definite answers to these questions because they way Larsen's Syndrome affects people varies greatly. Isabelle will be able to walk without her walker eventually (she is actually pretty close to taking a couple of steps on her own now!). As she gains strength and practices more she should be able to walk on her own both with and without her ankles braces. It may always be easier for her to walk with the braces but she should be able to walk without those too eventually. Whether or not she will need a walker or wheelchair when she gets older really depends on her strength and how much pain she has in her joints. A lot of people with Larsen's have issues with arthritis as they get older so it really all depends on her and her body. So we will see!
2. How many more surgeries do you think Belli will have to have?
Again, another question with no definite answer! As of right now there is nothing else that needs to be corrected so if it stays that way then none. Unfortunately this is not likely to happen. I'm not being pessimistic just honest. Her hips are still out of socket and we have chosen to keep them that way but if at any point her ortho decides it would be better to put them in she will have to have that surgery done. Because of her hip dislocation her left leg is a little bit shorter than her right leg, If we never put her hips back in the socket then when she is older and finished growing I will allow her to make the choice of whether she want to have a bone lengthening surgery or continue to wear a lift in her shoe. So far her spine is still looking good (knock on wood) and we are hopeful she will not have to have another surgery anytime soon. However, even if it does continue to stay aligned she will have to have her current fusion "touched up" for a lack of a better phrase when she is an adult. After a while the fusion will start to break down and will need to be fixed. There is also a risk for scoliosis but as of right now it does not seem to be a problem. So again, I guess we will just have to see.
3. Is Larsen's something that can be cured with surgery? Meaning she will still have it but she will be able to function normally after all the muscle and skeletal issues are fixed.
No. Larsen's is a genetic disorder that cannot be cured. You can have surgeries and therapy to help fix the problems but it cannot be cured. Even the surgeries are not always a perfect fix and she will always have loose joints.
4. How did you become such a big Alabama fan?
My mom and uncle both went to Alabama and my dad grew up as an Alabama fan so my sister, cousins, and I all grew up knowing no other way of life. It was something that was ingrained in us from the beginning.
5. Tell the stories of Belli's birth. I know Larsen's was a surprise to you when she was born so I was just curious how it all went down. (Jody B also wanted to know the answer to this question).
Well the Larsen's was not a complete surprise but I didn't not know tht she had Larsen's before she was born. Let me explain. When my ex-husband and I went for the 20 week ultrasound to find out the sex of the baby they also saw that she had clubbed feet and it looked like one of her hips was turned a weird way. The clubbed feet was not a complete surprise since my ex-husband and other members of his family had clubbed feet but because of her hip they told us to come back in a few weeks for another ultrasound to see if they could get a better look. So I went back a few weeks later and that's when they told me the news. Not only were Belli's feet clubbed but her hips looked like they were dislocated and her knees were bent the wrong way. I was devastated to say the least. My doctor set up an appointment at a different hospital to get a 3D ultrasound for a month later. We went to that appointment and after 45 minutes of taking about a billion pictures and them looking from every angle they could get to we were told there was nothing wrong other that the clubbed feet. So who are you going to believe? The ultrasound technician with a regular old ultrasound or a specialist with a 3D ultrasound. We chose the specialist. At this time I was still living in Mobile and I moved back to Birmingham a few weeks later. I had an ultrasound done here every couple of weeks just to check on the baby and no one here saw anything wrong either. She was breech and she stayed that way the whole pregnancy. I scheduled a c-section for a week before her due date. When they took Belli out she was not breathing. Her first APGAR score was 1. She bounced back quickly though and her second APGAR score was 9. They brought her over to me and I asked to see her feet. The nurses (or whoever they were) just sort of looked at each other and I knew at that moment that the original ultrasound was right. They called an orthopedist in the next day and that's when he told me she likely had Larsen's Syndrome. So that's my birth story!
Wow! Ok, since I got so long winded and you guys probably have better things to do than continue reading my answers to your questions I'm going to call it quits for now. Part 3 will be posted sometime this week so if I still haven't answered your question yet please come back. I promise I will get to it!
Monday, February 1, 2010
All About Belli and Me!
I had such a great response from you guys I am actually going to have to answer everyone's questions in two or three posts. So here goes round one.
1. My sister asked, "Where did Belli get her good looks from?"
Well, as you can see from this picture of me at 18 months the answer is quite obvious. Me of course! She actually is way cuter than I was but still =-)
2. Mama M asked, "If you marry my brother will you move to MN? I would love to have Belli for a niece."
This is actually a little joke we have between us. Since Mama M doesn't have any sisters (and she just loves me and Belli so much) she quite often insists that I marry her brother. He is really cute even though I don't generally go for blond headed blue eyed people, see (just scroll down to the picture with the guy holding that precious little girl!). And from what I hear he is a real stand up guy. But to answer the question I would have to say no. MN is too far away from from home for me =-( I am all for him moving here though!
3. Renee asked, "What is your favorite sweet to eat?"
I don't really like sweets all that much. I prefer salt. But, if I had to pick it would probably M&M's.
4. Anonymous wanted to know if Belli still called people on her thermometer.
Yes! She actually calls it her phone, not thermometer. I try to tell her it's called a thermometer and she says, "No, how bout phone." She still calls Mrs. Heather a lot but really she calls just about anyone.
5. Keely asked, "If you could travel any where in the world where would you go?"
That's really tough. If we are talking about places I would really like to trace my roots back to Italy. I know my mom's grandparents came to America from there and I would really like to go back to the city the lived and see if I have any relatives over there. If we are talking about events I would love to go to the summer Olympics. I would go any where to see them but I would really like to go to the ones in Rio.
6. Geerts asked, "How do you manage it all? I am a single mom in school and I like to see how other single mamas do it."
I am able to manage it for two reasons. First, Belli is an unbelievably good child. She listens to me for the most part (especially if I threaten time out), she sleeps well, and she is very rarely sick. She makes it pretty easy. Second, my parents help out more than I should ever ask them to. They watch her while I work and go to school and even if I need to go to the library to study. I try to get that done at night or while she is napping though. So, while it is extremely hard sometimes I am able to manage it because of those two things.
7. Cop Mama wanted to know what was the best way my friends and family can help me as a single mom (aside from babysitting).
I don't think there is really anything that my friends and family can do to help me that they aren't already doing. What I do think that strangers or just people in general can do for me and all single moms is to not look down on us. Some people have the assumption that singles mothers can't be as good of a mom as a married mom can or that we are single because we have made "mistakes." So frustrating and so not true!
Kate had a few questions.
8. How do you envision your life in 5 years? 10 years?
In 5 years I would like to be finished with school, gotten a job, be living on my own, and maybe be going out on some dates here and there. In 10 years I would like for one of those dates to have turned in to something special and I will have been married for at least a few years and maybe even have another little kiddo by then. Belli will hopefully be a great big sister one day!
9. If you were given $100,000 to donate to any three charities what would they be?
Without a doubt the first one would be The Bell Center. This is where Belli receives the majority of her therapy and they are in desperate need of funds. If any of YOU would like to donate please visit this site. These people are running in Isabelle's name to raise money for The Bell Center.
The second would be to the Red Cross. I know that's kind of general but they do so many great things for people all over the world.
Lastly, St. Jude's. Since I have started blogging I have read so many heartbreaking stories of families who have lost their children to cancer or who currently have children fighting the disease. I would love to see some of these families suffer less.
10. What movie can you watch over and over?
I don't watch movies a whole lot but I really enjoy watching the movies I watched as a kid like The Mighty Ducks series and both the Homeward Bound movies. My all time favorite though is The Sound of Music. I usually only watch it once a year with my mom and sister at Christmas but I could watch it all the time.
11. Does Belli sleep with a special bear/blanket? How did she get it?
She uses the Gerber thermal blankets. It doesn't have to be a specific kind just that brand. She sucks on the tag when she sleeps. Well, pretty much whenever she can for that matter. As far as how she got them I just registered for them and when she was about 6 months or so she started sucking on the tag and she never stopped. She actually used to sleep with those blankets wrapped around her head. It scared the crap out of me but she wouldn't sleep any other way. I would sneak in her room after she went to sleep and move it but she would just put it right back up there.
12. What is Belli's favorite thing to do?
She is easily entertained so there are a lot of things she enjoys doing but her favorite thing to do is playing with the dishwasher. She really likes to rub her hand on the door when it is opened and there's a lot of water on it. It's actually kind gross but she likes it. She loves to get her spoons and bang them on the inside of the door too. Her favorite thing to do though is roll the bottom basket back into the dishwasher when someone is trying to put dishes in it.
1. My sister asked, "Where did Belli get her good looks from?"
Well, as you can see from this picture of me at 18 months the answer is quite obvious. Me of course! She actually is way cuter than I was but still =-)
2. Mama M asked, "If you marry my brother will you move to MN? I would love to have Belli for a niece."
This is actually a little joke we have between us. Since Mama M doesn't have any sisters (and she just loves me and Belli so much) she quite often insists that I marry her brother. He is really cute even though I don't generally go for blond headed blue eyed people, see (just scroll down to the picture with the guy holding that precious little girl!). And from what I hear he is a real stand up guy. But to answer the question I would have to say no. MN is too far away from from home for me =-( I am all for him moving here though!
3. Renee asked, "What is your favorite sweet to eat?"
I don't really like sweets all that much. I prefer salt. But, if I had to pick it would probably M&M's.
4. Anonymous wanted to know if Belli still called people on her thermometer.
Yes! She actually calls it her phone, not thermometer. I try to tell her it's called a thermometer and she says, "No, how bout phone." She still calls Mrs. Heather a lot but really she calls just about anyone.
5. Keely asked, "If you could travel any where in the world where would you go?"
That's really tough. If we are talking about places I would really like to trace my roots back to Italy. I know my mom's grandparents came to America from there and I would really like to go back to the city the lived and see if I have any relatives over there. If we are talking about events I would love to go to the summer Olympics. I would go any where to see them but I would really like to go to the ones in Rio.
6. Geerts asked, "How do you manage it all? I am a single mom in school and I like to see how other single mamas do it."
I am able to manage it for two reasons. First, Belli is an unbelievably good child. She listens to me for the most part (especially if I threaten time out), she sleeps well, and she is very rarely sick. She makes it pretty easy. Second, my parents help out more than I should ever ask them to. They watch her while I work and go to school and even if I need to go to the library to study. I try to get that done at night or while she is napping though. So, while it is extremely hard sometimes I am able to manage it because of those two things.
7. Cop Mama wanted to know what was the best way my friends and family can help me as a single mom (aside from babysitting).
I don't think there is really anything that my friends and family can do to help me that they aren't already doing. What I do think that strangers or just people in general can do for me and all single moms is to not look down on us. Some people have the assumption that singles mothers can't be as good of a mom as a married mom can or that we are single because we have made "mistakes." So frustrating and so not true!
Kate had a few questions.
8. How do you envision your life in 5 years? 10 years?
In 5 years I would like to be finished with school, gotten a job, be living on my own, and maybe be going out on some dates here and there. In 10 years I would like for one of those dates to have turned in to something special and I will have been married for at least a few years and maybe even have another little kiddo by then. Belli will hopefully be a great big sister one day!
9. If you were given $100,000 to donate to any three charities what would they be?
Without a doubt the first one would be The Bell Center. This is where Belli receives the majority of her therapy and they are in desperate need of funds. If any of YOU would like to donate please visit this site. These people are running in Isabelle's name to raise money for The Bell Center.
The second would be to the Red Cross. I know that's kind of general but they do so many great things for people all over the world.
Lastly, St. Jude's. Since I have started blogging I have read so many heartbreaking stories of families who have lost their children to cancer or who currently have children fighting the disease. I would love to see some of these families suffer less.
10. What movie can you watch over and over?
I don't watch movies a whole lot but I really enjoy watching the movies I watched as a kid like The Mighty Ducks series and both the Homeward Bound movies. My all time favorite though is The Sound of Music. I usually only watch it once a year with my mom and sister at Christmas but I could watch it all the time.
11. Does Belli sleep with a special bear/blanket? How did she get it?
She uses the Gerber thermal blankets. It doesn't have to be a specific kind just that brand. She sucks on the tag when she sleeps. Well, pretty much whenever she can for that matter. As far as how she got them I just registered for them and when she was about 6 months or so she started sucking on the tag and she never stopped. She actually used to sleep with those blankets wrapped around her head. It scared the crap out of me but she wouldn't sleep any other way. I would sneak in her room after she went to sleep and move it but she would just put it right back up there.
12. What is Belli's favorite thing to do?
She is easily entertained so there are a lot of things she enjoys doing but her favorite thing to do is playing with the dishwasher. She really likes to rub her hand on the door when it is opened and there's a lot of water on it. It's actually kind gross but she likes it. She loves to get her spoons and bang them on the inside of the door too. Her favorite thing to do though is roll the bottom basket back into the dishwasher when someone is trying to put dishes in it.
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