I don't know if I've written about it in the past, but I have a short list of life goals for Sadie. Meaning, these are things I'd like her to achieve at some point in her life. They are things I know will take years of working on and lots of practice.
One of them is potty training. I truly believe that with the right communication skills, Sadie can be out of diapers...someday. We are actually in the process of getting a shower seat/ toilet chair combo. Once we receive this, I'm going to start toilet "timing" and just like she gets fed on a schedule, I am going to do my best to sit her on the toilet on a schedule.
Another life goal I have for Sadie is to be able to sit independently. Sitting opens up a new world of possibilities. And actually I'm hoping this can happen sooner rather than later. If she can sit, she can take baths. If she can sit, we can eliminate the car seat and she can use a 5-point harness seat belt (when she's big enough, of course...I know children now stay in car seats like until they're 8 or 9!). If she can sit, she can sit on the toilet, which takes the previous goal to a whole new level, because then she can potty anywhere and not just at a facility (aka home & school) that has the right equipment to support her on the toilet.
I want Sadie to be able to do a standing transfer. This means that she can lift herself from a seated position, with the help of another person, or a bar, to another seated position. So, she'd be able to hold on to me and stand up from her wheelchair and move to sit on the toilet, or the car, or the couch. Ultimately, I'd like her to be able to take a few steps, but I'd be happy with just a stand and pivot. This goal keeps me from having to lift her when she weighs so much, and keeps us from having to get a lift in our home...which we might end up with anyway.
And I've just added a new goal.
Yesterday, Sadie had her swallow test. If you remember, the last one she did didn't go so well. They told me we shouldn't be feeding her and that she should be primarily tube fed, with maybe 5 bites per meal. And I was so frustrated and angry, but just kept doing what we've been doing. And Dr. Wendy told me we don't ever have to do another test again if we didn't want to. Well, we had to do another test, because insurance told me they needed the test results to justify paying for the thickener.
I over-prepared. I took the feeding therapist. I scheduled the test as close as possible to when Sadie normally eats. I've been feeding her in a similar chair at home that they do for the test. And I didn't starve her, like they say I should. And this time she didn't aspirate. She drank nectar consistency, which is like one of those Naked Juice or Odwalla smoothies. They not only recommended that we start doing more liquid, they told me to start giving her chunks of stuff to munch, like pieces of banana or avocado. She is just getting so strong!
So, I've added a new life goal. I want Sadie to drink from a straw. I am realistic in that I don't think we'll ever get rid of the tube. The tube is so convenient to give extra fluids and medicines!! Sometimes I wish I had a tube...boy did I wish this when I was pregnant! Think of how much it would help with morning sickness and hydration!! Anyway, I think she'll always have the tube, but if she can control her own drinking through a straw it would be a big step. I don't know if she'll ever be able to hold a cup to her mouth, so using a straw keeps me (or someone else) from having to pour liquid into her mouth and risking a mess.
I truly think Sadie will be able to do these things. And probably once we learn some more communication, I'll add a life goal that has to do with communication. I really think Sadie has the potential to go far, and to live an enjoyable life, and to do great things. She is an amazing person.
Do you have a special needs child? What are your life goals for him/her? Maybe you haven't thought about this before? Maybe it's time to start... if you don't have something to always be working on, you don't go anywhere.
Friday, April 26, 2013
Sunday, April 14, 2013
From the mouths of Babes
When I was young my parents had friends, the Reynolds, who were part of a group of friends who all had children at about the same time. But the Reynolds were different, their son, Jason, had suffered severe brain damage and was... well, like Sadie. Jason was about my age, maybe a little older, and being around him as a little kid really effected me. I still remember being curious, but a little afraid. I was kind of a shy kid and got embarrassed easily, so I'm sure I had a lot of questions, but that I didn't ask them. However, when I was about 5 my parents got divorced and we sort of lost touch with a lot of people my parents were friends with as a couple, and I don't have much recollection of being around Jason after about then.
I don't know about you, but I feel like my age group of people didn't really have a lot of interaction with kids with special needs. I remember seeing them at school, but I never had any reason to talk to them, they were always in their own special class, and even though I was curious, I was a little scared of them. I didn't know how to act around kids with disabilities. I didn't know how to talk to them, and their behavior was not something I wasn't used to, so I didn't know how to react to it.
Now that I have my own child with special needs, I want to make sure that kids her age are NOT afraid of her or unsure of how to interact with her.
Today was our second week at a new church, and Sadie's first week in the Sunday School class. I was so appreciative of how they accommodated her and made sure she had what she needed and wasn't in her wheelchair the whole time and got to participate. But, I think the teachers were more appreciative of me bringing her there so that the other kids could be around her.
When I went to pick Sadie up after church, the teachers told me that she liked all the kids and they did really well with her. They told me she liked circle time and had made a little friend named Ben. Ben came out when I was there so that he could say goodbye to Sadie. Then Ben looked at me and asked me how Sadie's brain got broken. I wanted to cry. Not because I was sad, but because to Ben it was that simple, Sadie brain got broken. I told him that Sadie got really sick before she was born and it hurt her brain. The teacher standing there told me that the kids had lots of questions and she didn't know how to answer them, so now she sort of knew what to say. I told her I welcomed questions and wasn't afraid to answer them.
Then I was told that Ben hardly left Sadie's side the whole time, in fact he even pushed her wheelchair back from the bathroom. Then I was told that the teacher caught Ben whisper to Sadie, "when your muscles get stronger, you can come play at my house."
Today the kids learned in Sunday School that everybody needs to hear that Jesus loves them. So, every kid in the class told Sadie that Jesus loves her. Which is exactly what she needs to hear. In this big world that is so unfriendly to children like Sadie, this group of kids understood that Sadie's brain is just broken and that Jesus still loves her. I hope that today was a learning experience for every child in that class today, and I hope that they remember Sadie and that Jesus loves her and she needs to hear that from them.
I don't know about you, but I feel like my age group of people didn't really have a lot of interaction with kids with special needs. I remember seeing them at school, but I never had any reason to talk to them, they were always in their own special class, and even though I was curious, I was a little scared of them. I didn't know how to act around kids with disabilities. I didn't know how to talk to them, and their behavior was not something I wasn't used to, so I didn't know how to react to it.
Now that I have my own child with special needs, I want to make sure that kids her age are NOT afraid of her or unsure of how to interact with her.
Today was our second week at a new church, and Sadie's first week in the Sunday School class. I was so appreciative of how they accommodated her and made sure she had what she needed and wasn't in her wheelchair the whole time and got to participate. But, I think the teachers were more appreciative of me bringing her there so that the other kids could be around her.
When I went to pick Sadie up after church, the teachers told me that she liked all the kids and they did really well with her. They told me she liked circle time and had made a little friend named Ben. Ben came out when I was there so that he could say goodbye to Sadie. Then Ben looked at me and asked me how Sadie's brain got broken. I wanted to cry. Not because I was sad, but because to Ben it was that simple, Sadie brain got broken. I told him that Sadie got really sick before she was born and it hurt her brain. The teacher standing there told me that the kids had lots of questions and she didn't know how to answer them, so now she sort of knew what to say. I told her I welcomed questions and wasn't afraid to answer them.
Then I was told that Ben hardly left Sadie's side the whole time, in fact he even pushed her wheelchair back from the bathroom. Then I was told that the teacher caught Ben whisper to Sadie, "when your muscles get stronger, you can come play at my house."
Today the kids learned in Sunday School that everybody needs to hear that Jesus loves them. So, every kid in the class told Sadie that Jesus loves her. Which is exactly what she needs to hear. In this big world that is so unfriendly to children like Sadie, this group of kids understood that Sadie's brain is just broken and that Jesus still loves her. I hope that today was a learning experience for every child in that class today, and I hope that they remember Sadie and that Jesus loves her and she needs to hear that from them.
Saturday, April 13, 2013
Dealing with Anxiety
I haven't been very good about blogging lately. I was actually thinking this morning about quitting. Then I thought maybe I should start a new blog called, "letters to my special needs child" or "letters to my children" or something. But really, I write this to commemorate our journey, and I not only want to share our journey with others, I want to remember where we've been, because it's important to look back. So, maybe I should be better about writing (between waking up every few hours all night, changing the diapers of two children, nursing, preschool drop-off and pick-up, making dinner, and working), because someday I'm going to forget the good times, the struggles, and the victories, and it'll be nice to go back and read them.
I've been struggling a lot with anxiety about the future (maybe that's why it's been hard to write). As you can imagine, thinking about Sadie's future can be a little stressful. And I'm an over-planner, so it's hard for me to imagine how I'm going to take care of Sadie when I'm not sure what her needs will be tomorrow, let alone 5, 10, or 20 years from now. But what I didn't realize until I had Ezra, is that I'm just as anxious about his future. I am just as equally uncertain about Ezra's future needs as I am about Sadie's. The only difference is that lots of people have raised typical, healthy children before and I have lots of people to ask for help.
Some people eat when they're worried or anxious, some people don't eat at all. When I'm anxious, I bite the inside of my cheeks and lip and tongue the retainer behind my front bottom teeth. It's very uncomfortable, but it makes me physically aware of my anxiety, which can be helpful in trying to let it go.
So, how does one let it go when they're worried about the future? Well, isn't that the million dollar question among special needs moms (side note: why is it that dads don't seem to worry as much about things?) I thought I'd compile a list of a few things I do when I'm feeling anxious that help me feel better, even if only temporarily...
1. Call my mom. I know not everyone has a good relationship with their mom, so call someone older and wiser than you, someone you respect and love, someone who can tell you you're doing a good job as a parent. My mom doesn't always know the right thing to say, but she listens to my worries, and she tells me I'm doing a good job, and sometimes that is all I need to hear. Because I think, if I'm doing a good job now, I'm going to stop doing a good job, and everything is okay, so it'll probably be okay in the future too.
2. Write. Sometimes it's public blog writing, sometimes it's a private prayer journal, but somehow getting it out on paper makes me feel better. When I blog, I am often seeking empathy from friends and family and the special needs community. Sometimes I am just seeking accountability by making my feeling public. And sometimes, how I'm feeling needs to just be between God and me. I also think there's some value in writing down these fears and worries so that you never forget where you've been and what you've accomplished.
3. Exercise. Do something active. When you're body is working hard, your mind has a chance to clear. I know that if I go for a walk or a run when I'm working out a problem in my head, I often come home with a solution. It may be more about the fresh air than the actual exercise, but working through something physically can be very rewarding and lift my spirits, and clear my mind.
4. Get outside. Like I mentioned previously, fresh air can really clear one's head. When I lived in Oregon, it wasn't out of the question to drive to the coast and sit on the beach and just stare at the ocean. There is something amazing and overwhelming (in a good way) about the ocean. But you don't have to be near the ocean to get this. Some of my favorite things to experience outside are sparkly afternoon water, the smell of freshly mowed grass, and the sound of a fresh breeze rustling through the trees. I've also found that watching ants can be very calming, somehow their OCD-like behavior reminds me that if I just keep working on something one day at a time, before I know it, my big problem won't seem so big anymore.
5. Do a craft. Sometimes I have my best ideas or remember some of my favorite memories when I'm sitting at my sewing machine, or painting a bedroom. And if you're not crafty, get on Pinterest and lose yourself in the possibility of all the things you could do!! It's a great way to escape reality for a while. And if you are crafty, just think, you'll have created something!
Over the next few weeks we have a swallow test scheduled and a visit to the GI doctor, two things I dread. I have been losing sleep thinking about how to plan for both of these so that I don't look like a fool, and so that I can best represent my child and her abilities. I guess I need to spend some time doing some of the things on my list. And I will try my best to give updates after each of these experiences.
Until then, I'd be happy for you to write in the comments what you do to help with worry and anxiety over your child's future, and let's all work together to keep the stress down!!
I've been struggling a lot with anxiety about the future (maybe that's why it's been hard to write). As you can imagine, thinking about Sadie's future can be a little stressful. And I'm an over-planner, so it's hard for me to imagine how I'm going to take care of Sadie when I'm not sure what her needs will be tomorrow, let alone 5, 10, or 20 years from now. But what I didn't realize until I had Ezra, is that I'm just as anxious about his future. I am just as equally uncertain about Ezra's future needs as I am about Sadie's. The only difference is that lots of people have raised typical, healthy children before and I have lots of people to ask for help.
Some people eat when they're worried or anxious, some people don't eat at all. When I'm anxious, I bite the inside of my cheeks and lip and tongue the retainer behind my front bottom teeth. It's very uncomfortable, but it makes me physically aware of my anxiety, which can be helpful in trying to let it go.
So, how does one let it go when they're worried about the future? Well, isn't that the million dollar question among special needs moms (side note: why is it that dads don't seem to worry as much about things?) I thought I'd compile a list of a few things I do when I'm feeling anxious that help me feel better, even if only temporarily...
1. Call my mom. I know not everyone has a good relationship with their mom, so call someone older and wiser than you, someone you respect and love, someone who can tell you you're doing a good job as a parent. My mom doesn't always know the right thing to say, but she listens to my worries, and she tells me I'm doing a good job, and sometimes that is all I need to hear. Because I think, if I'm doing a good job now, I'm going to stop doing a good job, and everything is okay, so it'll probably be okay in the future too.
2. Write. Sometimes it's public blog writing, sometimes it's a private prayer journal, but somehow getting it out on paper makes me feel better. When I blog, I am often seeking empathy from friends and family and the special needs community. Sometimes I am just seeking accountability by making my feeling public. And sometimes, how I'm feeling needs to just be between God and me. I also think there's some value in writing down these fears and worries so that you never forget where you've been and what you've accomplished.
3. Exercise. Do something active. When you're body is working hard, your mind has a chance to clear. I know that if I go for a walk or a run when I'm working out a problem in my head, I often come home with a solution. It may be more about the fresh air than the actual exercise, but working through something physically can be very rewarding and lift my spirits, and clear my mind.
4. Get outside. Like I mentioned previously, fresh air can really clear one's head. When I lived in Oregon, it wasn't out of the question to drive to the coast and sit on the beach and just stare at the ocean. There is something amazing and overwhelming (in a good way) about the ocean. But you don't have to be near the ocean to get this. Some of my favorite things to experience outside are sparkly afternoon water, the smell of freshly mowed grass, and the sound of a fresh breeze rustling through the trees. I've also found that watching ants can be very calming, somehow their OCD-like behavior reminds me that if I just keep working on something one day at a time, before I know it, my big problem won't seem so big anymore.
5. Do a craft. Sometimes I have my best ideas or remember some of my favorite memories when I'm sitting at my sewing machine, or painting a bedroom. And if you're not crafty, get on Pinterest and lose yourself in the possibility of all the things you could do!! It's a great way to escape reality for a while. And if you are crafty, just think, you'll have created something!
Over the next few weeks we have a swallow test scheduled and a visit to the GI doctor, two things I dread. I have been losing sleep thinking about how to plan for both of these so that I don't look like a fool, and so that I can best represent my child and her abilities. I guess I need to spend some time doing some of the things on my list. And I will try my best to give updates after each of these experiences.
Until then, I'd be happy for you to write in the comments what you do to help with worry and anxiety over your child's future, and let's all work together to keep the stress down!!
Friday, March 29, 2013
Dear Ezra - 5 months
Dear Ezra,
I can't believe you are almost a half a year old. These past few weeks have brought on lots of exciting new things. You can almost sit independently. You use your voice a lot more than you used to. You are getting really good at reaching out and grabbing for something if it's presented to you. And that first tooth is about to pop through!
The one thing you still can't do though, is turn back over to your back once you've gotten yourself onto your tummy. And you only roll onto your tummy in one direction. Every time. It makes me laugh, because if I don't strap you into your bouncy seat, you are strong enough to turn yourself over IN THE CHAIR. And I lay you down to sleep between those blocks that are supposed to keep you from rolling over, but you still manage to do it somehow. Yet, even with how strong you are to do these things...you still can't figure out how to turn back over!!
You are sure cute, though. When Grammy Rachel was here last week we took you out shopping with us and so many people stopped us to tell me how beautiful you are. So many people commented on what a cute baby I have. And you're so fat. They often also comment on how big you are! You are now 5 and a half months old and we just pulled out the 6-9 month clothes, some of which are already too small!!
Sometimes when I hold you and nurse you I lose my breath for a moment because I am so in love with you. It overwhelms me how much you need me and love me. I am amazed that you are so smart and are learning to do so many things that we never got to experience with your sister.
You are so curious. Last night I gave you a piece of paper and you played with it for a half hour. We gave you a baby spoon the other night while you sat in your high chair and we ate dinner. We watched you explore it and put it in your mouth, even gag yourself a little. You want to touch my phone whenever I'm holding you. You try to put everything in your mouth. It is so fun to watch you explore and grow and learn.
When we took you to the baseball game last week, there was a family sitting in front of us; a mom and a dad and their freckled, red headed 20-something-year-old son. And I got a glimpse of the future. Someday you're going to be 20 something years old. You're going to be a man. And I hope you still need me and still love me. I hope that when I see you and give you a hug I still lose my breath for a moment at how much I love you.
I love you little Ezzy ding dong.
Love,
Mommy
PS. This is what you look like at 5 months
I can't believe you are almost a half a year old. These past few weeks have brought on lots of exciting new things. You can almost sit independently. You use your voice a lot more than you used to. You are getting really good at reaching out and grabbing for something if it's presented to you. And that first tooth is about to pop through!
The one thing you still can't do though, is turn back over to your back once you've gotten yourself onto your tummy. And you only roll onto your tummy in one direction. Every time. It makes me laugh, because if I don't strap you into your bouncy seat, you are strong enough to turn yourself over IN THE CHAIR. And I lay you down to sleep between those blocks that are supposed to keep you from rolling over, but you still manage to do it somehow. Yet, even with how strong you are to do these things...you still can't figure out how to turn back over!!
You are sure cute, though. When Grammy Rachel was here last week we took you out shopping with us and so many people stopped us to tell me how beautiful you are. So many people commented on what a cute baby I have. And you're so fat. They often also comment on how big you are! You are now 5 and a half months old and we just pulled out the 6-9 month clothes, some of which are already too small!!
Sometimes when I hold you and nurse you I lose my breath for a moment because I am so in love with you. It overwhelms me how much you need me and love me. I am amazed that you are so smart and are learning to do so many things that we never got to experience with your sister.
You are so curious. Last night I gave you a piece of paper and you played with it for a half hour. We gave you a baby spoon the other night while you sat in your high chair and we ate dinner. We watched you explore it and put it in your mouth, even gag yourself a little. You want to touch my phone whenever I'm holding you. You try to put everything in your mouth. It is so fun to watch you explore and grow and learn.
When we took you to the baseball game last week, there was a family sitting in front of us; a mom and a dad and their freckled, red headed 20-something-year-old son. And I got a glimpse of the future. Someday you're going to be 20 something years old. You're going to be a man. And I hope you still need me and still love me. I hope that when I see you and give you a hug I still lose my breath for a moment at how much I love you.
I love you little Ezzy ding dong.
Love,
Mommy
PS. This is what you look like at 5 months
 |
| Headed to your first baseball game with Daddy! |
Monday, March 25, 2013
Cerebral Palsy Awareness Day 2013
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.
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.
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.
Monday, March 4, 2013
It's been a while - part 3: Hip Surgery
Yes, we scheduled it, the dreaded hip surgery.
We went to see the Orthopaedist and he said Sadie needs the osteotomy. That's where they cut her femur and actually remove a chunk to re-angle her hip sockets. It sounds pretty intense and I'm not looking forward to it.
The doctor said that normally he likes to wait until kids are at least 4 years old before doing this surgery, but that since Sadie is so huge, he doesn't mind doing it on her so young. So, I guess that crazy hormone rush growth spurt is sorta good...although I'm pretty sure her hips are so bad because of the growth spurt in the first place.
I've talked to a couple of other moms who have been through this surgery with their girls, and the biggest thing I keep hearing is pain management. Sadie won't be casted or anything, so I won't have to worry about that (thank God), but I have been told that muscle spasms can be pretty harsh. I had (a different kind) major hip surgery when I was 19 and I remember the doctor had to cut through the nerves to do what needed to be done. I still have weird nerve sensations on that leg. For a long time there would be shooting pain as my nerves worked to heal and feeling was coming back. It was very uncomfortable...and I imagine it'd be something similar that Sadie will experience.
We'll stay in the hospital a few days (hopefully not too many), then it's up to 6 weeks of recovery at home. Being an online teacher, I really only get 3 weeks off in the summer, those 3 weeks will be spent doing this. June 24th is the first Monday of my break and we'll be showing up to Phoenix Children's Hospital bright and early that morning!
Pray for us, wish us luck, whatever you can do helps!!
I'm terrified, but I'm trying to be positive and proactive in that I want this to rocket us forward in her physical abilities (like sitting), instead of set us back, like I've heard that it can do.
We went to see the Orthopaedist and he said Sadie needs the osteotomy. That's where they cut her femur and actually remove a chunk to re-angle her hip sockets. It sounds pretty intense and I'm not looking forward to it.
The doctor said that normally he likes to wait until kids are at least 4 years old before doing this surgery, but that since Sadie is so huge, he doesn't mind doing it on her so young. So, I guess that crazy hormone rush growth spurt is sorta good...although I'm pretty sure her hips are so bad because of the growth spurt in the first place.
I've talked to a couple of other moms who have been through this surgery with their girls, and the biggest thing I keep hearing is pain management. Sadie won't be casted or anything, so I won't have to worry about that (thank God), but I have been told that muscle spasms can be pretty harsh. I had (a different kind) major hip surgery when I was 19 and I remember the doctor had to cut through the nerves to do what needed to be done. I still have weird nerve sensations on that leg. For a long time there would be shooting pain as my nerves worked to heal and feeling was coming back. It was very uncomfortable...and I imagine it'd be something similar that Sadie will experience.
We'll stay in the hospital a few days (hopefully not too many), then it's up to 6 weeks of recovery at home. Being an online teacher, I really only get 3 weeks off in the summer, those 3 weeks will be spent doing this. June 24th is the first Monday of my break and we'll be showing up to Phoenix Children's Hospital bright and early that morning!
Pray for us, wish us luck, whatever you can do helps!!
I'm terrified, but I'm trying to be positive and proactive in that I want this to rocket us forward in her physical abilities (like sitting), instead of set us back, like I've heard that it can do.
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