Today is Cerebral Palsy Awareness day.
In the interest of awareness, to help people understand more about Sadie, and about CP, here are some things you should know about her.
1) Sadie is just like other 3 year old girls. She loves to get dressed up, she likes it when we fix her hair and make her pretty. And she likes to be around other children.
2) Sadie gets frustrated when we don't understand what she's trying to tell us. Her physical limitations reach beyond not walking or sitting, not being able to speak is one of the most limiting things she lives with.
3) Sadie goes to preschool and is in a class with 7 other little kids who are just like her. Her teacher works very hard to help these kids touch things and hear things and experience as much of the world and learning as possible.
4) Sadie has a visual impairment called Cortical Visual Impairment. This means that her eyes see, but her brain doesn't interpret the information. She often responds best when people talk to her instead of when they wave at her. Many people try to give her toys, but if they don't make noise then she generally doesn't enjoy them much.
5) Sadie is physically disabled. Cerebral Palsy is not contagious, don't be afraid to touch her or interact with her. She loves people.
6) Sadie's favorite thing is to be in the water. She loves to take baths with Mama and she loves to go swimming. If ever she's in a bad mood, the water will calm her. If she's tired but just can't calm down enough to sleep, the water will relax her. And if she is not feeling well, I know I can always get a smile by putting her in the water.
7) Sadie has a feeding tube that goes directly into her stomach. However, she loves to eat. She loves food and she's getting better at eating it. But she needs the tube because she can't drink. And sometimes we give her food in her tube because she is mad and can't calm down or she needs to sleep.
8) Sadie used to scream in the car. Every trip. Now she likes it. Her favorite thing is to ride with the window down so that the wind will blow in her hair.
9) Sadie has a kitty named Yuri. Yuri often sleeps on Sadie's bed at night when she's going to sleep. If she's really upset, he comes and lays against her back like he's reminding her that she's gonna be okay.
10) Sadie has the best smile ever. When we're out in public strangers often stop and comment on how pretty she is.
11) As a result of Sadie's brain damage, her head is small. Because her brain didn't grow, her soft spot closed up when she was very young. However, she has the most amazing red curly hair that nobody ever even notices that her head is small. Her hair is her crowning glory and always the first thing people comment on when they meet her.
12) Sometimes Sadie needs to move. When she was little we bounced her violently. Now we rock her. Violently. We believe that this scratches some kind of itch in her brain. It's very physically demanding, but it stops the screaming.
13) Sadie really loves to be outside. She loves to feel the wind in her face and her hair. She loves to have the warm sunshine on her skin. We go for family walks almost every Sunday morning.
14) Sadie takes medicine for reflux. It may help with the burning, but it doesn't help with the spitting up (we call it erping). We often have to change her clothes multiple times a day and many of her shirts are stained.
15) Sadie has some really good ideas. Someday, I hope that I can help her communicate them more clearly with her body and her words and her heart.
Sadie can do so much more than we ever expected, more than anybody ever expected. I can't wait to see what she will become. I can't wait to see how she will interact with her brother, and how many friends she will have as she continues through school. We celebrate Sadie everyday at our house. We celebrate her little accomplishments, we celebrate what she almost does, we celebrate what she did yesterday, but couldn't quite do today. She is our daughter, she made us a mom and dad, and we love her more than we could ever imagine.
Next time you see someone with CP or another disability, please take a moment to stop and think, think about Sadie. Please don't assume, don't call names or judge. You are looking at a person, not a disability.
Showing posts with label Sadie. Show all posts
Showing posts with label Sadie. Show all posts
Monday, March 25, 2013
Sunday, March 17, 2013
I'm going crazy
If you're wondering where I've been the last week and a half... I've been going crazy.
Sadie started having insomnia a couple of weeks ago and we had no idea why. Usually her insomnia stems from pain. But, she can't tell us what hurts.
Since this precocious puberty seems to have kick-started 5 year molars, we naturally assumed her mouth hurt.
We'd give her medicine and it didn't help. We'd rock her all day and it didn't help. She would no longer sleep in her bed, she would only sleep in her chair...when she would sleep. Then the not sleeping would compound the pain and she was a MESS. I mean screaming all day and night. Needing to rock all day. Not sleeping. Not eating. It was like she was 1 again!!
...and I was losing my mind.
Last Monday (the 11th), it was the worst I'd ever seen it. I was gone all day at an in person staff meeting and it took Chelsea, Grammy, and Daddy to watch both kids. And Brian sent Chelsea home early because he said she was so frustrated he felt bad for her. By the time I got home, Sadie was out of control. Not just whining, but full on screaming... until really late at night.
I finally emailed Dr. Wendy. I mean, I was ready to take Sadie to the emergency room just so they could sedate her and we could all have a break. And we still thought it was teeth. And we thought this was probably going to go on for months.
But then Tuesday morning I was rubbing Sadie's legs and I noticed a huge lump in her thigh where she got her injection a couple of weeks before. It was about the size of a quarter. It didn't seem to bother her when I pushed on it, and it was invisible, but it was hot, and I wondered if this could be the source of her pain.
So, I emailed Dr. Wendy again, and I left a message for the nurse who did the injection. By the end of the day, when they had gotten back to me, it was determined we needed to get to urgent care that evening. Then urgent care sent us to the ER. And the ER told us it was nothing that wouldn't resolve on its own and sent us home.
But the next day it was bigger. And it was turning reddish purple, like a bruise. And she still wasn't sleeping, even with constant advil and ativan in her system. So, we went back to see the Dr. on Thursday. Wendy wasn't available, so we saw someone else, Dr. Hartley.
Dr. Hartley called it a hematoma and explained that basically she's reacting to the injection going into her muscle. It's a blood clot, and it can be really painful. So, we upped the amount of advil we were giving her and that seemed to help. And we went back on Friday because he wanted to see if it had gotten any bigger and it hadn't.
Hot packs and advil and we were told it would resolve on its own.
But poor Sadie is still in a lot of pain, and she is still having trouble sleeping. And although the lump is getting smaller, it's taking a long time. How do we avoid this in the future? She has to have this shot every 3 months for like 10 years!!
...and now I'm even more annoyed by this puberty thing. And I feel sorry for my child who has been in pain for basically 2 weeks straight. And she can't tell me what hurts or how I can make it better. And that's why I'm crazy.
Sadie started having insomnia a couple of weeks ago and we had no idea why. Usually her insomnia stems from pain. But, she can't tell us what hurts.
Since this precocious puberty seems to have kick-started 5 year molars, we naturally assumed her mouth hurt.
We'd give her medicine and it didn't help. We'd rock her all day and it didn't help. She would no longer sleep in her bed, she would only sleep in her chair...when she would sleep. Then the not sleeping would compound the pain and she was a MESS. I mean screaming all day and night. Needing to rock all day. Not sleeping. Not eating. It was like she was 1 again!!
...and I was losing my mind.
Last Monday (the 11th), it was the worst I'd ever seen it. I was gone all day at an in person staff meeting and it took Chelsea, Grammy, and Daddy to watch both kids. And Brian sent Chelsea home early because he said she was so frustrated he felt bad for her. By the time I got home, Sadie was out of control. Not just whining, but full on screaming... until really late at night.
I finally emailed Dr. Wendy. I mean, I was ready to take Sadie to the emergency room just so they could sedate her and we could all have a break. And we still thought it was teeth. And we thought this was probably going to go on for months.
But then Tuesday morning I was rubbing Sadie's legs and I noticed a huge lump in her thigh where she got her injection a couple of weeks before. It was about the size of a quarter. It didn't seem to bother her when I pushed on it, and it was invisible, but it was hot, and I wondered if this could be the source of her pain.
So, I emailed Dr. Wendy again, and I left a message for the nurse who did the injection. By the end of the day, when they had gotten back to me, it was determined we needed to get to urgent care that evening. Then urgent care sent us to the ER. And the ER told us it was nothing that wouldn't resolve on its own and sent us home.
But the next day it was bigger. And it was turning reddish purple, like a bruise. And she still wasn't sleeping, even with constant advil and ativan in her system. So, we went back to see the Dr. on Thursday. Wendy wasn't available, so we saw someone else, Dr. Hartley.
Dr. Hartley called it a hematoma and explained that basically she's reacting to the injection going into her muscle. It's a blood clot, and it can be really painful. So, we upped the amount of advil we were giving her and that seemed to help. And we went back on Friday because he wanted to see if it had gotten any bigger and it hadn't.
Hot packs and advil and we were told it would resolve on its own.
But poor Sadie is still in a lot of pain, and she is still having trouble sleeping. And although the lump is getting smaller, it's taking a long time. How do we avoid this in the future? She has to have this shot every 3 months for like 10 years!!
...and now I'm even more annoyed by this puberty thing. And I feel sorry for my child who has been in pain for basically 2 weeks straight. And she can't tell me what hurts or how I can make it better. And that's why I'm crazy.
Wednesday, February 27, 2013
It's been a while - part 2: Endocrinology
I don't remember if I ever got to write about Sadie's precocious puberty. Yes, her brain was starting to release hormones that started puberty WHEN SHE WAS 2 YEARS OLD!! What a mess. Basically I noticed that she was starting to grow boobs. I didn't even think about how big she was getting so fast. I thought I was pregnant and I was getting weaker, so she just FELT heavier. Nope, she's huge. We completely skipped size 3 clothes. She literally went from size 2 to size 4. She even wears some size 5s and has a few things that are 6-7!! Not to mention the diapers she no longer fit into!
When I mentioned something to Dr. Wendy, she sent a referral to Endocrinology where Dr. Oleson confirmed that that is not uncommon. Apparently, when children suffer brain damage, it effects the pituitary gland, which is where all your hormones are secreted, which can mess up the timing on puberty. Everybody just kept telling me it happens all the time in children like Sadie, like that was going to make it better. It didn't.
Anyway, we X-rayed her wrist where her growth plate is (apparently it's indicating that she's 5), did some blood tests, and even had an MRI to check her pituitary gland (and to make sure there wasn't a tumor) and then it was determined that she needs to start a new medicine called Lupron. It's an injection she gets every 3 months. The goal is to suppress the hormones and stop the puberty and the growing, and she has to take it until we want puberty to actually start...so for like 10 years.
We had to order this medicine from a special pharmacy and they sent it to us in the mail. It came in this crazy big box (think 4 shoes boxes stacked together) and all it was was a tiny plastic container, about the size of a DVD case. We brought it with us to the doctor's office and the nurse gave her a shot in her leg. She didn't even cry. She is amazing.
This whole situation is just annoying to me. I'm annoyed we have to see another doctor, I'm annoyed that Sadie is so huge. I'm annoyed that she has acne and boobs and has even started to get another set of molars!!! I'm annoyed that we have to give her shots, and that they won't bill her secondary insurance, so every 3 months (for the next 10 years) I have to submit a reimbursement form to ACCCHS.
Usually, when it comes to Sadie, I am sad, or I am grateful that we found and fixed the problem, but this time I'm just annoyed. The whole thing is just so inconvenient.
...just one more thing they don't tell you could happen when you bring home your brain damaged child from the hospital!
When I mentioned something to Dr. Wendy, she sent a referral to Endocrinology where Dr. Oleson confirmed that that is not uncommon. Apparently, when children suffer brain damage, it effects the pituitary gland, which is where all your hormones are secreted, which can mess up the timing on puberty. Everybody just kept telling me it happens all the time in children like Sadie, like that was going to make it better. It didn't.
Anyway, we X-rayed her wrist where her growth plate is (apparently it's indicating that she's 5), did some blood tests, and even had an MRI to check her pituitary gland (and to make sure there wasn't a tumor) and then it was determined that she needs to start a new medicine called Lupron. It's an injection she gets every 3 months. The goal is to suppress the hormones and stop the puberty and the growing, and she has to take it until we want puberty to actually start...so for like 10 years.
Yesterday was her first injection.
We had to order this medicine from a special pharmacy and they sent it to us in the mail. It came in this crazy big box (think 4 shoes boxes stacked together) and all it was was a tiny plastic container, about the size of a DVD case. We brought it with us to the doctor's office and the nurse gave her a shot in her leg. She didn't even cry. She is amazing.
This whole situation is just annoying to me. I'm annoyed we have to see another doctor, I'm annoyed that Sadie is so huge. I'm annoyed that she has acne and boobs and has even started to get another set of molars!!! I'm annoyed that we have to give her shots, and that they won't bill her secondary insurance, so every 3 months (for the next 10 years) I have to submit a reimbursement form to ACCCHS.
Usually, when it comes to Sadie, I am sad, or I am grateful that we found and fixed the problem, but this time I'm just annoyed. The whole thing is just so inconvenient.
...just one more thing they don't tell you could happen when you bring home your brain damaged child from the hospital!
Saturday, January 19, 2013
Sadie's third birthday
Dear Sadie,
Today you turn 3. Today is a big deal, because, not only is it the anniversary of your birth, but it is the anniversary of the day I became a mom. You are my first born child and you will always have a special place in my heart that is different than your siblings. I loved you before I knew you. I wanted to keep you when they told me I was going to lose you. And I am a stronger person for who you have demanded that I become.
You will always need me, more than most children need their mommies. And I will forever take care of you, speak for you, feed you and dress you, and fight for you. Before I had you I didn't know how to fight for something the way I do now. Because of you I have big, bulging mommy muscles. Because of you I have amazing friends. Because of you I have an appreciation for life and beauty like never before. Because of you I realize which things are silly to stress over or be sad about. Because of you, I am mom.
Sadie, today you're 3! You are growing up and learning more and more each day. You have ideas and opinions in that head of yours, and anybody who knows you knows how sassy and demanding you can be. You have turned into such a happy little girl. Even your teachers at school tell me all the time how happy you are. There was a time when I thought you'd never stop screaming, but now you never stop smiling.
You go to school now and your teachers are so proud of you and so impressed with everything you're learning. You play with the other kids in your class and even share toys with them. You are learning to communicate what you want, and you are learning to sit and use your hands to touch something or play with something. You are an amazing little person who is learning to overcome so much just to do basic things.
You are beautiful, and I am proud to be your mother. You are so loved, and that will never change.
Happy Birthday!
Love,
Mommy
Today you turn 3. Today is a big deal, because, not only is it the anniversary of your birth, but it is the anniversary of the day I became a mom. You are my first born child and you will always have a special place in my heart that is different than your siblings. I loved you before I knew you. I wanted to keep you when they told me I was going to lose you. And I am a stronger person for who you have demanded that I become.
You will always need me, more than most children need their mommies. And I will forever take care of you, speak for you, feed you and dress you, and fight for you. Before I had you I didn't know how to fight for something the way I do now. Because of you I have big, bulging mommy muscles. Because of you I have amazing friends. Because of you I have an appreciation for life and beauty like never before. Because of you I realize which things are silly to stress over or be sad about. Because of you, I am mom.
Sadie, today you're 3! You are growing up and learning more and more each day. You have ideas and opinions in that head of yours, and anybody who knows you knows how sassy and demanding you can be. You have turned into such a happy little girl. Even your teachers at school tell me all the time how happy you are. There was a time when I thought you'd never stop screaming, but now you never stop smiling.
You go to school now and your teachers are so proud of you and so impressed with everything you're learning. You play with the other kids in your class and even share toys with them. You are learning to communicate what you want, and you are learning to sit and use your hands to touch something or play with something. You are an amazing little person who is learning to overcome so much just to do basic things.
You are beautiful, and I am proud to be your mother. You are so loved, and that will never change.
Happy Birthday!
Love,
Mommy
Sunday, January 6, 2013
She's My Child
I'm going through another one of those rough patches in my grieving. Do you ever stop grieving for what you've lost? Or does it just come in waves? Lately, I've been thinking a lot about what our life might be like if Sadie had been born typical. I think it's because I have Ezra now and my vision is clearer, my eyes have been opened to the world of a typically developing child. And it's not like I love Sadie any less, but I wish she could play with her brother, and I wish she could run around the house squealing and singing songs, and I wish I could look at her and wonder who she's going to marry someday and how many children she'll have. You see, these are the things I wonder when I look at Ezra.
This morning we went for a walk as a family and I told Brian that now that we have Ezra, I can see what our life might have been like if Sadie wasn't the way she is. I told him that I feel almost like we have MUCH MORE this way. I don't know if I'd have a job that I love so much working from home. And I don't know if we'd be living in a new house at all, let alone this house in this neighborhood that I am really growing fond of. And I know for sure that some of the most treasured and special people in my life wouldn't even exist.
Sadie is such a pretty and happy and sweet child. She is so amazing in all that she does. But I fear for her. I fear that her bones are developing incorrectly, and that her muscles are atrophying, and that my lack of consistency with patching her eye and putting on her glasses is going to result in surgery. I worry a lot over this little child of mine, and I wonder if it's more than I would if she were normal. But the thing is, when she looks at me with that smile, when she hears my voice and reacts, when I can make her giggle, none of it matters. Because she's my child and I would do anything for her, I would do everything for her. I DO do everything for her. And at the end of the day, none of the what-ifs matter, because this is the family God has blessed me with, and this is the family that I love and that I serve.
This video has been passed around Facebook this weekend. I started crying when she sang the first line. I think it's just what my heart needed reminding. It's all worthwhile when it's my child.
This morning we went for a walk as a family and I told Brian that now that we have Ezra, I can see what our life might have been like if Sadie wasn't the way she is. I told him that I feel almost like we have MUCH MORE this way. I don't know if I'd have a job that I love so much working from home. And I don't know if we'd be living in a new house at all, let alone this house in this neighborhood that I am really growing fond of. And I know for sure that some of the most treasured and special people in my life wouldn't even exist.
Sadie is such a pretty and happy and sweet child. She is so amazing in all that she does. But I fear for her. I fear that her bones are developing incorrectly, and that her muscles are atrophying, and that my lack of consistency with patching her eye and putting on her glasses is going to result in surgery. I worry a lot over this little child of mine, and I wonder if it's more than I would if she were normal. But the thing is, when she looks at me with that smile, when she hears my voice and reacts, when I can make her giggle, none of it matters. Because she's my child and I would do anything for her, I would do everything for her. I DO do everything for her. And at the end of the day, none of the what-ifs matter, because this is the family God has blessed me with, and this is the family that I love and that I serve.
This video has been passed around Facebook this weekend. I started crying when she sang the first line. I think it's just what my heart needed reminding. It's all worthwhile when it's my child.
Saturday, December 29, 2012
Sadie's Virtual Birthday Party
Sadie will be 3 on January 19th. I can't believe it's already been 3 years since that crazy day when I had my first baby. And that scary week following when I thought I was going to lose my first baby. But, here we are!! And we're doing better than expected!
Sadie's birthday is so close to Christmas, that I find it inappropriate to ask for MORE presents. She made out like a bandit this Christmas... new AFO socks, art supplies and coloring books, clothes, an ipad case, lots and lots of socks, a new hairbrush, and even some pretty clips to hold her hair out of her eyes! Oh yeah, and she got some toys too!!
So, instead, I wanted to ask anybody who might be interested in celebrating Sadie's 3rd birthday if they might make a donation. We need a changing table that is big enough for Sadie now, and that will also be big enough for her when she's 10. The little baby changing table just isn't enough anymore. I am currently trying to contact the therapist who built her table last year to get a quote, but I imagine it will cost $200-$300. This is what I'd like to buy Sadie for her birthday.
If you would like to show Sadie how much you love her by donating a gift, we'd really appreciate it. Just click on the button below and give any amount that is appropriate for you and your family. If it's not appropriate for you to give for Sadie's birthday, that's okay too!
Have a safe and happy New Years celebration and we look forward to sharing our family blessings with you in 2013!!
Edit: If we end up receiving more money than we need to purchase the table, we'd like to put it toward buying her a swing. Something like this. (note: this link is just the frame, but it shows the whole set up in the picture)
Sadie's birthday is so close to Christmas, that I find it inappropriate to ask for MORE presents. She made out like a bandit this Christmas... new AFO socks, art supplies and coloring books, clothes, an ipad case, lots and lots of socks, a new hairbrush, and even some pretty clips to hold her hair out of her eyes! Oh yeah, and she got some toys too!!
So, instead, I wanted to ask anybody who might be interested in celebrating Sadie's 3rd birthday if they might make a donation. We need a changing table that is big enough for Sadie now, and that will also be big enough for her when she's 10. The little baby changing table just isn't enough anymore. I am currently trying to contact the therapist who built her table last year to get a quote, but I imagine it will cost $200-$300. This is what I'd like to buy Sadie for her birthday.
If you would like to show Sadie how much you love her by donating a gift, we'd really appreciate it. Just click on the button below and give any amount that is appropriate for you and your family. If it's not appropriate for you to give for Sadie's birthday, that's okay too!
Have a safe and happy New Years celebration and we look forward to sharing our family blessings with you in 2013!!
Edit: If we end up receiving more money than we need to purchase the table, we'd like to put it toward buying her a swing. Something like this. (note: this link is just the frame, but it shows the whole set up in the picture)
Sunday, December 16, 2012
Neuro-NICU reunion 2012
When Sadie was born she went to the NICU, obviously. But she went to a special section, treated by specially trained doctors and nurses. Sadie went to the Neuro-NICU. Phoenix Children's Hospital (at the time) has 1 of only 2 specially certified Neuro-NICUs in the nation. This is where she was cooled.
Because this is a special place for special babies, they have a reunion each year to see all the cooled babies and catch up with them. Most of them are perfectly normal and typically developing. Sadie was the 47th baby to be cooled at PCH, so we were invited to one of the first of these celebrations, and it was there that I realized that our family was different.
At first I thought we must be really unlucky because most of these children were all going to be just fine, maybe they'd have a small swallowing issue that they'd grow out of, or maybe they'd be at a higher risk of developing seizures when they get older, but none of them were like Sadie. And this was really hard for me that first year.
So the second year we just didn't go.
We keep in tough via Facebook (I love Facebook) with the neonatologist who was Sadie's doctor in the NICU, and she kind of heads up the Neuro-NICU, so I told her last year that I just didn't want to come see all those beautiful typically developing children and know that mine has all these developmental delays and physical disabilities. That was kind of a dark time in my life when Sadie still wasn't sleeping and she was still screaming most days and always in the car, and I wasn't in the mood to go be around people who were living the life I thought we were supposed to have too.
But this year I've gotten past a lot of that. Sadie is happy, she is doing amazing things, and we've really gotten a handle on routines and are pretty good at managing her out in public. She also has a perfectly healthy and typically developing baby brother who has, and is, providing a lot of healing for our family. So, we packed up and headed over there. We visited with Dr. Carballo, who was filled with joy to see all of her cooled babies, not just ours. We sat with a nice family who has a 9 month old who is doing well. Then we took this awesome picture and went home.
By attending this year I realized exactly the opposite of what I felt last year. We aren't unlucky because our child is disabled. Instead we are lucky that our child is alive. Those kids at those reunions are there because brain cooling helped reverse the effects of oxygen deprivation at birth, and they are doing very very well...but I can't help but think of the families who weren't helped by brain cooling, the ones whose babies didn't make it. Really, we should have been in that category and not invited to these reunions at all. So I held my head high at that celebration and I proudly told people how Dr. Carballo saved my child's life, and how lucky we are to be able to be invited to celebrate the Neuro-NICU every year, because Sadie is alive. And she has taught us more about living and brought more blessings into our lives than we ever could have imagined.
Because this is a special place for special babies, they have a reunion each year to see all the cooled babies and catch up with them. Most of them are perfectly normal and typically developing. Sadie was the 47th baby to be cooled at PCH, so we were invited to one of the first of these celebrations, and it was there that I realized that our family was different.
At first I thought we must be really unlucky because most of these children were all going to be just fine, maybe they'd have a small swallowing issue that they'd grow out of, or maybe they'd be at a higher risk of developing seizures when they get older, but none of them were like Sadie. And this was really hard for me that first year.
So the second year we just didn't go.
We keep in tough via Facebook (I love Facebook) with the neonatologist who was Sadie's doctor in the NICU, and she kind of heads up the Neuro-NICU, so I told her last year that I just didn't want to come see all those beautiful typically developing children and know that mine has all these developmental delays and physical disabilities. That was kind of a dark time in my life when Sadie still wasn't sleeping and she was still screaming most days and always in the car, and I wasn't in the mood to go be around people who were living the life I thought we were supposed to have too.
But this year I've gotten past a lot of that. Sadie is happy, she is doing amazing things, and we've really gotten a handle on routines and are pretty good at managing her out in public. She also has a perfectly healthy and typically developing baby brother who has, and is, providing a lot of healing for our family. So, we packed up and headed over there. We visited with Dr. Carballo, who was filled with joy to see all of her cooled babies, not just ours. We sat with a nice family who has a 9 month old who is doing well. Then we took this awesome picture and went home.
By attending this year I realized exactly the opposite of what I felt last year. We aren't unlucky because our child is disabled. Instead we are lucky that our child is alive. Those kids at those reunions are there because brain cooling helped reverse the effects of oxygen deprivation at birth, and they are doing very very well...but I can't help but think of the families who weren't helped by brain cooling, the ones whose babies didn't make it. Really, we should have been in that category and not invited to these reunions at all. So I held my head high at that celebration and I proudly told people how Dr. Carballo saved my child's life, and how lucky we are to be able to be invited to celebrate the Neuro-NICU every year, because Sadie is alive. And she has taught us more about living and brought more blessings into our lives than we ever could have imagined.
Tuesday, November 20, 2012
Thanksgiving Day 20
I am so thankful today for my new van. It sucks to have a car payment and the gas mileage has been an adjustment, but I don't think I could live without it. If I still had to drive my little VW with both kids, I might just not go anywhere.
Yesterday we drove to Phoenix Children's Hospital twice for two separate kids' doctor's appointments. Driving that van is like riding in luxury. We're up high, it's an automatic (my very first automatic car!), it's easy to put kids in and out of, it holds the wheelchair in the back... and it has a sunroof!!
So, let me tell you about Sadie's appointment. We saw the endocrinologist. A few months ago, I mentioned to Dr. Wendy that Sadie was growing pubic hair. Then when she gained all that weight, it looked like she was starting to grow boobs. So, she referred us to endocrinology. Apparently, it's normal for kids with brain damage to experience precocious puberty, but we were both kind of shocked to see signs at 2 years old!
Anyway, the endo told us that there are 5 stages of development. A 5 is a fully developed adult and a 1 is where a normal 2 year old would be. Sadie is a 2. He confirmed that there is some kind of pre puberty happening. He also said that these hormones that her brain is secreting are triggering a growth spurt. She's gone from BELOW the 20% in July for weight to the 90%!! And her height is in the 95%!
They drew some blood to check for sure on her hormone levels, as well as took Xrays of the growth plate in her hand. The concern, besides starting her period at 3 years old, is that she'll grow too fast too early and her growth plates will fuse together before they should. So, to treat this, she'll need to take an estrogen suppressant. The estrogen suppressant will send to her brain the right signals so that she'll stop growing until she catches up, and will keep puberty at bay. This medicine would be either a shot every 3 months, or an implant that would need to be changed once a year...and she would take this for the next 10 years basically, until it's actually TIME for her to go into puberty.
This was all a little bit shocking to hear and to think of her being on a medicine for 10 years makes me sad. But I also understand that it's important for her body not to hit puberty in preschool. Has anybody else had this issue with their child? Did the medicine help?
By the way, Ezra's one month well check went great. I felt silly asking some of the questions I asked, I felt like a first time parent. I kind of am! He weighs 12lbs 3oz and is 23.5 inches long. He's healthy and strong and everything looks good!!
Yesterday we drove to Phoenix Children's Hospital twice for two separate kids' doctor's appointments. Driving that van is like riding in luxury. We're up high, it's an automatic (my very first automatic car!), it's easy to put kids in and out of, it holds the wheelchair in the back... and it has a sunroof!!
So, let me tell you about Sadie's appointment. We saw the endocrinologist. A few months ago, I mentioned to Dr. Wendy that Sadie was growing pubic hair. Then when she gained all that weight, it looked like she was starting to grow boobs. So, she referred us to endocrinology. Apparently, it's normal for kids with brain damage to experience precocious puberty, but we were both kind of shocked to see signs at 2 years old!
Anyway, the endo told us that there are 5 stages of development. A 5 is a fully developed adult and a 1 is where a normal 2 year old would be. Sadie is a 2. He confirmed that there is some kind of pre puberty happening. He also said that these hormones that her brain is secreting are triggering a growth spurt. She's gone from BELOW the 20% in July for weight to the 90%!! And her height is in the 95%!
They drew some blood to check for sure on her hormone levels, as well as took Xrays of the growth plate in her hand. The concern, besides starting her period at 3 years old, is that she'll grow too fast too early and her growth plates will fuse together before they should. So, to treat this, she'll need to take an estrogen suppressant. The estrogen suppressant will send to her brain the right signals so that she'll stop growing until she catches up, and will keep puberty at bay. This medicine would be either a shot every 3 months, or an implant that would need to be changed once a year...and she would take this for the next 10 years basically, until it's actually TIME for her to go into puberty.
This was all a little bit shocking to hear and to think of her being on a medicine for 10 years makes me sad. But I also understand that it's important for her body not to hit puberty in preschool. Has anybody else had this issue with their child? Did the medicine help?
By the way, Ezra's one month well check went great. I felt silly asking some of the questions I asked, I felt like a first time parent. I kind of am! He weighs 12lbs 3oz and is 23.5 inches long. He's healthy and strong and everything looks good!!
Tuesday, October 30, 2012
Kristi the new OT
Sadie finally has a new occupational therapist (OT). We spent a long time looking for someone to replace Miss Tami, who we really liked. And finally we found Miss Kristi, who is amazing... but it wasn't easy!!
Kristi is friends with Kim, Sadie's speech and feeding therapist. And Kim kept talking and talking about Kristi until finally we got in touch. At first scheduling was tough. The only time Kristi could come was when I had to teach my online class. But, Chelsea would be here during that time, so it wasn't a huge deal. It was more important that we get Kristi in and get Sadie started!
We waited almost a full month for Kristi's schedule to open up during that time. The first week, I was able to join them for therapy, I know that the first time requires a lot of asking questions from the therapist and lots of getting to know each other, so I wanted to make sure I was there for that.
But the next day, I got a text saying that she had had a severe allergic reaction to our cat!!! I was devastated! We had waited so long to finally get time with Kristi and we really liked her when we met her and I didn't want to lose her (or have to find someone new)!! So, we worked it out that we'd meet her at the clinic at about that same time. Luckily, the clinic is less than 15 minutes away.
Since then, I have been nothing but impressed. She works a lot on Sadie's hands. The last 3 weeks they've done some kind of art project. I never have thought to do art with Sadie, but watching what Kristi does has made me think we could do more of that kind of stuff at home.
She uses a Bingo dauber with her. If you don't know what that is, it's like a fat paint marker that just makes circles. You just stamp it down on your Bingo card when the number is called. It's easy for Sadie to hold (it's amazing how much better she's gotten at holding it in just a few weeks!) and they color together (Kristi's hand over Sadie's) by making dots, lots and lots of dots.
Like this.
Today, they did something really fun! Together they made a Jack O Lantern by ripping up orange construction paper and glueing it on a circle. Then Kristi glued down the eyes, nose, mouth, and stem and Sadie colored them with the dauber (with Kristi's help, of course).
Check it out.
Doing art projects in OT inspires me to maybe do more of this kind of stuff with Sadie at home. I might have to see if I can get a Bingo dauber and print out some coloring pages. Anybody have any fun ideas?
Kristi is friends with Kim, Sadie's speech and feeding therapist. And Kim kept talking and talking about Kristi until finally we got in touch. At first scheduling was tough. The only time Kristi could come was when I had to teach my online class. But, Chelsea would be here during that time, so it wasn't a huge deal. It was more important that we get Kristi in and get Sadie started!
We waited almost a full month for Kristi's schedule to open up during that time. The first week, I was able to join them for therapy, I know that the first time requires a lot of asking questions from the therapist and lots of getting to know each other, so I wanted to make sure I was there for that.
But the next day, I got a text saying that she had had a severe allergic reaction to our cat!!! I was devastated! We had waited so long to finally get time with Kristi and we really liked her when we met her and I didn't want to lose her (or have to find someone new)!! So, we worked it out that we'd meet her at the clinic at about that same time. Luckily, the clinic is less than 15 minutes away.
Since then, I have been nothing but impressed. She works a lot on Sadie's hands. The last 3 weeks they've done some kind of art project. I never have thought to do art with Sadie, but watching what Kristi does has made me think we could do more of that kind of stuff at home.
She uses a Bingo dauber with her. If you don't know what that is, it's like a fat paint marker that just makes circles. You just stamp it down on your Bingo card when the number is called. It's easy for Sadie to hold (it's amazing how much better she's gotten at holding it in just a few weeks!) and they color together (Kristi's hand over Sadie's) by making dots, lots and lots of dots.
Like this.
 |
| They also practiced writing Sadie's name with a vibrating pen! |
Today, they did something really fun! Together they made a Jack O Lantern by ripping up orange construction paper and glueing it on a circle. Then Kristi glued down the eyes, nose, mouth, and stem and Sadie colored them with the dauber (with Kristi's help, of course).
Check it out.
Doing art projects in OT inspires me to maybe do more of this kind of stuff with Sadie at home. I might have to see if I can get a Bingo dauber and print out some coloring pages. Anybody have any fun ideas?
Saturday, October 27, 2012
Monday, October 22, 2012
Ezra's newborn check up and Sadie's weigh-in
We took both kids to the doctor today. It just worked out that Sadie's weigh-in appointment fell at about the time Ezra was due to be born...so it worked out to just come in once.
I'll start with Sadie...
Sadie weighed in at a whopping 36.4 pounds!!! Back in July when we saw the GI and it was determined that she was losing weight and we needed to change her diet, she weighed 27 pounds. This means she has gained almost 10 pounds in 4 months. I sure hope that Dr. Pasternak is happy. I sure am! She is back up above the 50th percentile curve and harder than ever to lift!
Speaking of that, both my mom and Brian were able to come with me today, thankfully. I still can't lift Sadie, and in fact, I visited the midwife this morning because I don't feel like my body is recovering as quickly as it should. She agreed and told me to do nothing but sit on the couch, eat, and nurse my baby. It's really hard not to do more than that...especially when both kids need to be taken to the pediatrician.
Then she saw Ezra...
Ezra weighed 9 pounds 13 ounces. So, in a week he's reached and exceeded his birth weight. I was actually surprised by this since I was told it would take 2 weeks to get back to his birth weight. But, we left the hospital at 8 pounds 13 ounces, so he's gained a whole pound in just a week!! This kid is a good nurser. We'll go back in about 3 weeks for his 1 month well baby check up and see how much he's gained at that point!
Both kids are healthy and gaining weight appropriately! Hooray for fat kids!!
I'll start with Sadie...
Sadie weighed in at a whopping 36.4 pounds!!! Back in July when we saw the GI and it was determined that she was losing weight and we needed to change her diet, she weighed 27 pounds. This means she has gained almost 10 pounds in 4 months. I sure hope that Dr. Pasternak is happy. I sure am! She is back up above the 50th percentile curve and harder than ever to lift!
Speaking of that, both my mom and Brian were able to come with me today, thankfully. I still can't lift Sadie, and in fact, I visited the midwife this morning because I don't feel like my body is recovering as quickly as it should. She agreed and told me to do nothing but sit on the couch, eat, and nurse my baby. It's really hard not to do more than that...especially when both kids need to be taken to the pediatrician.
Then she saw Ezra...
Ezra weighed 9 pounds 13 ounces. So, in a week he's reached and exceeded his birth weight. I was actually surprised by this since I was told it would take 2 weeks to get back to his birth weight. But, we left the hospital at 8 pounds 13 ounces, so he's gained a whole pound in just a week!! This kid is a good nurser. We'll go back in about 3 weeks for his 1 month well baby check up and see how much he's gained at that point!
Both kids are healthy and gaining weight appropriately! Hooray for fat kids!!
 |
| Daddy and his babies |
Thursday, September 27, 2012
Sadie's new wheelchair
I want to start at the beginning... back in May I learned that our private insurance will cover a new wheelchair 100%. This was really exciting news, because the wheelchair we have doesn't really support Sadie completely. 1. it's too big, 2. it's basically a giant stroller, and 3. we need something that tilts.
So, I went on a hunt. I found 4 or 5 wheelchairs that I liked, sent links to Denise (who was our PT at the time), and we agreed on which one we thought would be the best.
Then I had to find a provider.
You can't just buy a wheelchair from the company that makes it, you have to go through a company that provides seating and mobility services. The wheelchair clinic, provided for kids who are supported by state insurance, is in the building of a company called United Seating and Mobility, so naturally I called them first.
USM told me that if Sadie was enrolled in the CRS program (that provides the wheelchair clinic) then we HAD to go through the wheelchair clinic. Why? We're not using state insurance, it's purely private, so why do we need to even access the state program?
Then I had a LONG talk with the guy at the wheelchair clinic who basically told me that even though my insurance says they'll pay 100%, they won't. And if we don't go through the wheelchair clinic, which allows the state provided insurance to "pick up the tab," then we'll be stuck with a bill. However, to qualify for a new wheelchair through the wheelchair clinic (and they have available the one we want), we have to turn in the wheelchair we already have...and we weren't sure we wanted to do that.
If you remember, up until about a month ago, I drove a little Volkswagen hatchback. It barely fit our current wheelchair in the back, and that folds up like an umbrella stroller. If we traded that in for this other one we wanted, we'd basically never be able to take Sadie out, because we could never get Sadie and the wheelchair in the car. Plus, we know that Sadie will grow, and having basically a giant stroller that folds up will be easier to travel with like if we fly somewhere on a plane.
So, I called my insurance company back and asked them again. They said as long as the provider I choose is in-network they will pay 100% of the cost of the wheelchair. Then I asked them to lead me to a list of in-network providers, because obviously USM and the wheelchair clinic just wasn't going to be easy to work with. I found another company on the list that we work with often, they got us the Chill Out Chair and various other equipment, and they provide us with Sadie's tube supplies each month.
However, they've also been known to NOT be A+ in customer service, order the wrong thing, and take TOO long to get something to you.
They had to schedule someone to come out and measure Sadie, and fill out the order form for the wheelchair. Luckily Denise had already gone through the order form and provided all the codes and things for what we wanted, so that made it easy for him. And I explained to him that if we DID NOT get our wheelchair by October 1, we WOULD NOT be covered 100% by insurance because our year would renew. He was very understanding and good at his job, and even though I worried and worried over the whole thing, we did what he was supposed to (oh, and I was diligent and called and nagged) and we got our wheelchair just in time!!
Mama wins again.
My favorite thing about the new wheelchair? It's pink.
So, I went on a hunt. I found 4 or 5 wheelchairs that I liked, sent links to Denise (who was our PT at the time), and we agreed on which one we thought would be the best.
Then I had to find a provider.
You can't just buy a wheelchair from the company that makes it, you have to go through a company that provides seating and mobility services. The wheelchair clinic, provided for kids who are supported by state insurance, is in the building of a company called United Seating and Mobility, so naturally I called them first.
USM told me that if Sadie was enrolled in the CRS program (that provides the wheelchair clinic) then we HAD to go through the wheelchair clinic. Why? We're not using state insurance, it's purely private, so why do we need to even access the state program?
Then I had a LONG talk with the guy at the wheelchair clinic who basically told me that even though my insurance says they'll pay 100%, they won't. And if we don't go through the wheelchair clinic, which allows the state provided insurance to "pick up the tab," then we'll be stuck with a bill. However, to qualify for a new wheelchair through the wheelchair clinic (and they have available the one we want), we have to turn in the wheelchair we already have...and we weren't sure we wanted to do that.
If you remember, up until about a month ago, I drove a little Volkswagen hatchback. It barely fit our current wheelchair in the back, and that folds up like an umbrella stroller. If we traded that in for this other one we wanted, we'd basically never be able to take Sadie out, because we could never get Sadie and the wheelchair in the car. Plus, we know that Sadie will grow, and having basically a giant stroller that folds up will be easier to travel with like if we fly somewhere on a plane.
So, I called my insurance company back and asked them again. They said as long as the provider I choose is in-network they will pay 100% of the cost of the wheelchair. Then I asked them to lead me to a list of in-network providers, because obviously USM and the wheelchair clinic just wasn't going to be easy to work with. I found another company on the list that we work with often, they got us the Chill Out Chair and various other equipment, and they provide us with Sadie's tube supplies each month.
However, they've also been known to NOT be A+ in customer service, order the wrong thing, and take TOO long to get something to you.
They had to schedule someone to come out and measure Sadie, and fill out the order form for the wheelchair. Luckily Denise had already gone through the order form and provided all the codes and things for what we wanted, so that made it easy for him. And I explained to him that if we DID NOT get our wheelchair by October 1, we WOULD NOT be covered 100% by insurance because our year would renew. He was very understanding and good at his job, and even though I worried and worried over the whole thing, we did what he was supposed to (oh, and I was diligent and called and nagged) and we got our wheelchair just in time!!
Mama wins again.
My favorite thing about the new wheelchair? It's pink.
Sadie seems to fit in it really well, too. We took it for a walk down the street and she seemed to be really comfortable. It pushes like a jogging stroller with handbrakes and everything!! Oh, and the seat spins so she can face me if I want!
Oh, and she has a tray! So, since she actually is comfortable and likes sitting in here (as opposed to her other wheelchair which is basically a stroller, you use it to get from here to there), she can do activities for therapy or she can use it at school!! yay!!
But the best thing, really, is that it's pink!
Monday, September 3, 2012
Slander and Libel from The Skeptical OB
Yesterday I was bored, okay not really, more like I didn't want to get up off the couch because I'm huge and uncomfortable and people weren't posting enough interesting stuff fast enough on Facebook, so I thought I'd check my blog stats. Sometimes it's interesting to see what posts have been clicked on the most, and the most recently. And sometimes it's funny to see what google searches people type in that bring up your blog. And sometimes you find someone who has referred to your blog and therefore led others to you. But this is the first time I've found someone's blog who has referred to me in such a negative way.
Here's the link I found on my stats page (I wondered why Sadie's birth story had been the most viewed post in the last week!)
Initially, I started reading because I'm curious what the other side's opinion is. But, when I got to story #3, my jaw dropped. I was SO.IN.SHOCK. that anyone would take our birth story and misconstrue it in such a slanderous way, especially since it is such a positive experience in my life.
Read below:
#3 Brain damage after homebirth:
What did the mother learn from this experience? Not a damned thing.
Here’s a comment she wrote on Baby Center:
Dr. Amy,
While I appreciate free press and the use of the internet to express opinions about both sides of an issue, I do NOT appreciate the use of our family's homebirth story (about Sadie) to promote an opinion that we do not agree with. You obviously missed the point of Sadie's birth story, and of our blog. Sadie's issue was not due to homebirth, and would have likely had the same outcome at a hospital. How dare you insinuate that my decision to have a homebirth cause my child to be disabled!
Please refer to the terms of service posted on my blog (beckfamilyblessings.blogspot.com) and remove my family's story immediately from your website. In the future, I hope that I never see you construe someone's misfortune into words meant to cause fear or guilt.
Thank you,
Christie Beck
Then I walked away. I needed to feed Sadie and visit the grocery store, so I let myself cool down some before coming back to it. However, later, I learned that there were comments. Most were not about me, but about trusting hospitals in general and not trusting your body. Then there were some about each individual tragic story posted on that website. One person even went so far as to say that the police should be investigating some of these parents!!
After reading through all the comments, I again had to walk away. It's hard not to have your feelings hurt in a situation like this. I'm not a politician and I'm not used to people spinning my words or criticizing my decisions. And after some more thought, I realized that I don't care what Dr. Amy believes about homebirth. She is very negative, but I know that there are those who are just as negative toward hospital births. However, I am offended that she would make me look like a bad parent in a situation that was out of anybody's control. I am hurt that she would insinuate that I was negligent about my prenatal care or birthing environment, when she doesn't know anything about it. And I am PISSED that other people would assume that I am a bad parent, or refer to my daughter as wasted potential because I chose to have a homebirth.
So, I came back once again, and I chose to reply to some of these comments. See below:
Since corresponding with Brian and I some more, Lisa has since apologized for her comments and wished us the best with our new baby.
Here's the link I found on my stats page (I wondered why Sadie's birth story had been the most viewed post in the last week!)
Initially, I started reading because I'm curious what the other side's opinion is. But, when I got to story #3, my jaw dropped. I was SO.IN.SHOCK. that anyone would take our birth story and misconstrue it in such a slanderous way, especially since it is such a positive experience in my life.
Read below:
#3 Brain damage after homebirth:
"Sadie was born at home 2 days past her due date. Everything in my pregnancy and labor and delivery was normal…actually, so normal that my midwife told me I was clinically the perfect patient!! However, we found out later that I was Group B Strep (GBS) positive and didn’t know it. We have, after MUCH detective work, determined that the infection (which was found in my placenta and all the way through the umbilical cord) must have stressed Sadie out, causing her to pass meconium, which was aspirated and caused Hypoxic Ischemic Encephalopathy (HIE).The baby now has cerebral palsy.
Within minutes of being born, paramedics came to my home and rushed Sadie off to the hospital, where they discovered some brain damaged and then transported her to Phoenix Children’s Hospital (PCH). PCH practices newborn brain cooling therapy and immediately got her on a cooling blanket…"
What did the mother learn from this experience? Not a damned thing.
Here’s a comment she wrote on Baby Center:
"I love that you touched on that it’s NOT just about having a healthy baby in the end. It is about having a good birth experience and getting what you wanted. You’ve carried that baby for months in your belly, you should enjoy giving birth!! People say to me all the time that the biggest concern for this baby is it being born healthy (ie. not like Sadie), but I have had to give up my homebirth dream. I hate that I have to give birth in a hospital just so everyone else is comfortable. I’m choosing not to fight them (mostly my husband) this time… but next time I’m staying home!!! I’m glad you’re mad and unsatisfied and I hope that next time you get exactly what you want!"My first reaction was silly, I said, "I didn't post that on Baby Center, I posted it on Jesica's blog!" But that was only the beginning of the lies. Brian told me to immediately include a terms of service on my blog, and then to send Dr. Amy an email demanding that she remove my words from her website. This is what I wrote her.
Dr. Amy,
While I appreciate free press and the use of the internet to express opinions about both sides of an issue, I do NOT appreciate the use of our family's homebirth story (about Sadie) to promote an opinion that we do not agree with. You obviously missed the point of Sadie's birth story, and of our blog. Sadie's issue was not due to homebirth, and would have likely had the same outcome at a hospital. How dare you insinuate that my decision to have a homebirth cause my child to be disabled!
Please refer to the terms of service posted on my blog (beckfamilyblessings.blogspot.com) and remove my family's story immediately from your website. In the future, I hope that I never see you construe someone's misfortune into words meant to cause fear or guilt.
Thank you,
Christie Beck
Then I walked away. I needed to feed Sadie and visit the grocery store, so I let myself cool down some before coming back to it. However, later, I learned that there were comments. Most were not about me, but about trusting hospitals in general and not trusting your body. Then there were some about each individual tragic story posted on that website. One person even went so far as to say that the police should be investigating some of these parents!!
After reading through all the comments, I again had to walk away. It's hard not to have your feelings hurt in a situation like this. I'm not a politician and I'm not used to people spinning my words or criticizing my decisions. And after some more thought, I realized that I don't care what Dr. Amy believes about homebirth. She is very negative, but I know that there are those who are just as negative toward hospital births. However, I am offended that she would make me look like a bad parent in a situation that was out of anybody's control. I am hurt that she would insinuate that I was negligent about my prenatal care or birthing environment, when she doesn't know anything about it. And I am PISSED that other people would assume that I am a bad parent, or refer to my daughter as wasted potential because I chose to have a homebirth.
So, I came back once again, and I chose to reply to some of these comments. See below:
Since corresponding with Brian and I some more, Lisa has since apologized for her comments and wished us the best with our new baby.
Brian b • 43 minutes ago
One of the quotes was taken illegally from my blog. Take this article down under my website's terms of service. You're also an asshole for not asking permission and generally wishing harm upon others.Brian posted this comment, and someone replied with a link to the Fair Use Wikipedia page. However, he believes that this doesn't fall under fair use because it was not presented in good faith, but with intentions to slander. He has bigger aspirations, and actually tried to contact the web host to shut things down, but has been unsuccessful so far.
Apparently, Dr. Amy is teaching her minions to also read things incorrectly. This comment makes me the most mad. Wasted life?! Wasted potential?! Oh man, if anyone ever said this to my face about my child, I just might slap them. I told Sadie tonight that she is DEFINITELY not wasted potential, but that she is beautiful and strong and I hope that nobody ever says that to her face. These are the kind of people who continue to perpetuate discrimination in our culture toward people with special needs.This person later responded to me telling me that she didn't mean my child was a wasted life, but that she truly is a special gift. But, she clarified that by explaining that brain damage doesn't have to happen and that if I had had continuous fetal monitoring instead of just a doppler heart rate monitor after each contraction, we could have had Sadie without any brain damage.
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