Diapers!!! I am thankful for diapers.
When Sadie turns 3 she will be eligible for diapers provided by the state. That's because her disability inhibits her ability to potty train like a typical 3 year old (although, we're gonna show them!). However, Sadie's recent growth spurt has made it very difficult to fit her into diapers...because most 5-year-olds don't wear diapers.
She no longer fits any of the cloth diapers we have. And she's almost too small for size 6 disposables...but we use them anyway, because that's all we have. But it sucks having to pay for size 6 diapers! She'll be 3 in just about 6 weeks, so I was just hanging in there until her birthday.
Until...
Sadie's preschool teacher asked me yesterday if we'd be interested in some free diapers. Someone donated cases and cases to the school of youth diapers that are Sadie's size, the kind that the state provides. I'm sure my face lit up. She said she felt bad that we were still using Pampers size 6 when Sadie is such a big girl. She was able to give me a couple of packs to try and told me that if they worked well, she'd give me boxes to last us until Sadie's birthday.
Seriously, when I opened them my first thought was, "these are like what they make you wear in the hospital after you have a baby!" And they looked HUUUUUGE! But they fit Sadie perfectly. And they're really absorbent. So, I think we're gonna avoid so many wardrobe changes from using these! The only thing is that I'm used to diapers with pretty pictures and cute designs on them, and these are plain white. So, I think I might go buy some tempera paint and some sponges in cute shapes and paint these diapers to make them cute! I'm such a dork...
Anyway, Miss Kasey gave us 2 whole boxes of diapers today and I am SO THANKFUL! It's weird how excited one can get over the littlest things.
Friday, November 30, 2012
Thursday, November 29, 2012
Thanksgiving Day 29
Today I am thankful for all the doctors we work with to keep Sadie healthy.
Over the last few months I have had a LOT of people comment on how big Sadie is. You're right, she's huge. In fact, she's the size of a 5-year-old. How do I know this? Because we've recently discovered that Sadie's brain is telling her body to start puberty, which has triggered a growth spurt.
I know what you're saying to yourself right now... she's only 2!! Yep. And she's growing boobs and pubic hair.
This is why I'm thankful for doctors. I noticed these developments months ago and said something to my other special needs mommy friends and everybody said it wasn't anything to worry about. But when we saw Dr. Wendy, she agreed we needed to visit endocrinology.
The endocrinologist (Dr. Olson) confirmed that Sadie's body is indeed in early puberty. I guess this is common for brain damaged children. It's just another result of Sadie's brain not functioning properly. A normal 2-year-old's brain would suppress the estrogen that comes when one goes into puberty, but Sadie's is not.
While visiting Dr. Olson, Sadie had some blood drawn to confirm the levels of hormones in her body. She also had an Xray taken of the growth plate in her hand. The danger of hitting puberty so early (besides starting her period when she's 3!!) is that her growth plates would fuse early and that would cause bone problems.
Dr. Olson called today and said Sadie's growth plates show the development of a 5-year-old. Sadie has gone from below the 20% of a 2-year-old in July to the size of a 5-year-old in November. I'm guessing the whining, tiredness, and difficultly sleeping we've seen in the last few months was due to growing pains!! Poor girl.
However, Sadie's blood test did NOT show abnormal estrogen levels. Dr. Olson says that this is going to be a problem when asking insurance to cover estrogen suppressing medicine. Apparently the estrogen is given in spurts and on that day, at the time they drew blood, Sadie didn't have any estrogen in her system. But the advancement of the growth plates does not happen in the absence of hormones, so we have to prove that she does have an abnormal amount of estrogen to justify to the insurance company that she does need an estrogen suppressant.
So, Sadie will go in for an estrogen stimulation test. They will draw more blood to establish a baseline, then attempt to stimulate her brain to release estrogen by giving her some kind of medicine. Then in 3 hours they'll draw her blood again. That's gonna be a fun day...
The other possibility is that she has a brain tumor. Dr. Olson is very confident that because of Sadie's significant neurological problems, the brain damage is the cause of the precocious puberty. However, he wants her to have an MRI, because if it is a brain tumor, they (obviously) need to know that. And how bad would you feel as a doctor if you assumed it was brain damage related when really there was a big ol' tumor in there that you didn't know about? Most likely it is NOT a brain tumor (I just feel like I need to say that).
All this needs to happen in the next few weeks, so that when we go back to visit Dr. Olson in January, we can discuss treatment. We have 2 options for estrogen suppression. Sadie can either have a shot every 3 months, or have an implant placed and replaced every year. Either way, it is important that we suppress the estrogen for her (because her brain can't do it by itself) until she reaches the age when she should be going through puberty. So, she'll be on this medicine for the next 10 years. Yes, I said 10 years.
So, yes, Sadie is big. And it took the doctor believing me to make the referral to the specialist. And now we are under the care of a new doctor, who I like very much. And they're all working together to help Sadie be taken care of and to help us make sure she is getting everything she needs. And I am so thankful that there are people out there who want to be doctors for special needs kids, because I can't do this alone.
Over the last few months I have had a LOT of people comment on how big Sadie is. You're right, she's huge. In fact, she's the size of a 5-year-old. How do I know this? Because we've recently discovered that Sadie's brain is telling her body to start puberty, which has triggered a growth spurt.
I know what you're saying to yourself right now... she's only 2!! Yep. And she's growing boobs and pubic hair.
This is why I'm thankful for doctors. I noticed these developments months ago and said something to my other special needs mommy friends and everybody said it wasn't anything to worry about. But when we saw Dr. Wendy, she agreed we needed to visit endocrinology.
The endocrinologist (Dr. Olson) confirmed that Sadie's body is indeed in early puberty. I guess this is common for brain damaged children. It's just another result of Sadie's brain not functioning properly. A normal 2-year-old's brain would suppress the estrogen that comes when one goes into puberty, but Sadie's is not.
While visiting Dr. Olson, Sadie had some blood drawn to confirm the levels of hormones in her body. She also had an Xray taken of the growth plate in her hand. The danger of hitting puberty so early (besides starting her period when she's 3!!) is that her growth plates would fuse early and that would cause bone problems.
Dr. Olson called today and said Sadie's growth plates show the development of a 5-year-old. Sadie has gone from below the 20% of a 2-year-old in July to the size of a 5-year-old in November. I'm guessing the whining, tiredness, and difficultly sleeping we've seen in the last few months was due to growing pains!! Poor girl.
However, Sadie's blood test did NOT show abnormal estrogen levels. Dr. Olson says that this is going to be a problem when asking insurance to cover estrogen suppressing medicine. Apparently the estrogen is given in spurts and on that day, at the time they drew blood, Sadie didn't have any estrogen in her system. But the advancement of the growth plates does not happen in the absence of hormones, so we have to prove that she does have an abnormal amount of estrogen to justify to the insurance company that she does need an estrogen suppressant.
So, Sadie will go in for an estrogen stimulation test. They will draw more blood to establish a baseline, then attempt to stimulate her brain to release estrogen by giving her some kind of medicine. Then in 3 hours they'll draw her blood again. That's gonna be a fun day...
The other possibility is that she has a brain tumor. Dr. Olson is very confident that because of Sadie's significant neurological problems, the brain damage is the cause of the precocious puberty. However, he wants her to have an MRI, because if it is a brain tumor, they (obviously) need to know that. And how bad would you feel as a doctor if you assumed it was brain damage related when really there was a big ol' tumor in there that you didn't know about? Most likely it is NOT a brain tumor (I just feel like I need to say that).
All this needs to happen in the next few weeks, so that when we go back to visit Dr. Olson in January, we can discuss treatment. We have 2 options for estrogen suppression. Sadie can either have a shot every 3 months, or have an implant placed and replaced every year. Either way, it is important that we suppress the estrogen for her (because her brain can't do it by itself) until she reaches the age when she should be going through puberty. So, she'll be on this medicine for the next 10 years. Yes, I said 10 years.
So, yes, Sadie is big. And it took the doctor believing me to make the referral to the specialist. And now we are under the care of a new doctor, who I like very much. And they're all working together to help Sadie be taken care of and to help us make sure she is getting everything she needs. And I am so thankful that there are people out there who want to be doctors for special needs kids, because I can't do this alone.
Wednesday, November 28, 2012
Thanksgiving Day 28
I am thankful for Facebook.
I know I've written about it before, but honestly, when you stay home all day and when your family all live in another state and when you haven't seen your best friend in over a year...facebook is important.
I get to watch my niece and nephew grow up via facebook because I'm not around to hang out with them. And my best friend's oldest son is in first grade this year!! I got to see pictures of his first day of school.
Facebook also lets me reconnect with people I haven't seen since high school, or who I don't really want to have a conversation on the phone with, but I want to keep in touch with.
Oh, and facebook helps me find new friends too. There are people I connect with on facebook daily who I've never met in person. Don't worry, I'm not friends with complete strangers, they're all friends of someone I know in person and they know in person...or they're Brian's family members who I've never met.
Facebook is a great tool for keeping in touch and sharing your life with the people who matter, but who you can't be close to.
(...and it's also great for when you have a problem like you can't get your toilets clean and you need recommendations on what to use to get rid of that nasty ring where the water line is!!)
I know I've written about it before, but honestly, when you stay home all day and when your family all live in another state and when you haven't seen your best friend in over a year...facebook is important.
I get to watch my niece and nephew grow up via facebook because I'm not around to hang out with them. And my best friend's oldest son is in first grade this year!! I got to see pictures of his first day of school.
Facebook also lets me reconnect with people I haven't seen since high school, or who I don't really want to have a conversation on the phone with, but I want to keep in touch with.
Oh, and facebook helps me find new friends too. There are people I connect with on facebook daily who I've never met in person. Don't worry, I'm not friends with complete strangers, they're all friends of someone I know in person and they know in person...or they're Brian's family members who I've never met.
Facebook is a great tool for keeping in touch and sharing your life with the people who matter, but who you can't be close to.
(...and it's also great for when you have a problem like you can't get your toilets clean and you need recommendations on what to use to get rid of that nasty ring where the water line is!!)
Tuesday, November 27, 2012
Thanksgiving Day 27
I am thankful for bath time. Both of my kids love to be in the bathtub. I sometimes think it's because we put them in there so early, but then Brian reminds me of how much I like to be in the bath tub (and shower...although, you wouldn't know it based on how often I shower now!) and that these kids are born from the same genes.
Recently, I've been showering Sadie in the mornings instead of bathing her at night. She often wakes up smelling like pee because we give her so much water in the night and she pees a TON. And now that she wears her hand splints at night, her hands stink like neoprene and sweat. Oh, and if she spits up a little or drools a ton while she's in her bed, she'll probably roll around in it, which makes for some pretty nasty hair (isn't my life glamorous?). I couldn't imagine sending her to school like that...so we changed it up.
Sadie loves the shower too. I sit her in her giant bumbo in the tub and we have one of those shower heads on a long cord, and I wash her hair and her body and we play with the water. She giggles and "talks" the whole time. Then when she gets out she smells all clean and I can't keep my lips off her chubby chubby cheeks!
The other thing I've been doing is getting in the tub with Ezra at night after Sadie has gone to bed. Sadie usually goes to bed around 7:30, and the goal is to get Ezra swaddled and nursing between 8:00 and 8:30 so that I can lay him down and get myself in bed around 9:00. So, we've been getting in the tub, then jammies and swaddle. He loves the bath, just like his sister.
My favorite part is cuddling and hugging and nursing skin to skin. But he likes to play too, he's kind of figuring out how fun it is to splash! And we have a couple of toys in there. Don't tell Ezra, but I bought him a bunch of tub toys for Christmas, because I know he'll be able to sit in a few months, and grab things and stuff...then bath time will be a whole new level of fun!!
Whether it's a bath or a shower, it's a time to bond with my kids.
Recently, I've been showering Sadie in the mornings instead of bathing her at night. She often wakes up smelling like pee because we give her so much water in the night and she pees a TON. And now that she wears her hand splints at night, her hands stink like neoprene and sweat. Oh, and if she spits up a little or drools a ton while she's in her bed, she'll probably roll around in it, which makes for some pretty nasty hair (isn't my life glamorous?). I couldn't imagine sending her to school like that...so we changed it up.
Sadie loves the shower too. I sit her in her giant bumbo in the tub and we have one of those shower heads on a long cord, and I wash her hair and her body and we play with the water. She giggles and "talks" the whole time. Then when she gets out she smells all clean and I can't keep my lips off her chubby chubby cheeks!
The other thing I've been doing is getting in the tub with Ezra at night after Sadie has gone to bed. Sadie usually goes to bed around 7:30, and the goal is to get Ezra swaddled and nursing between 8:00 and 8:30 so that I can lay him down and get myself in bed around 9:00. So, we've been getting in the tub, then jammies and swaddle. He loves the bath, just like his sister.
My favorite part is cuddling and hugging and nursing skin to skin. But he likes to play too, he's kind of figuring out how fun it is to splash! And we have a couple of toys in there. Don't tell Ezra, but I bought him a bunch of tub toys for Christmas, because I know he'll be able to sit in a few months, and grab things and stuff...then bath time will be a whole new level of fun!!
Whether it's a bath or a shower, it's a time to bond with my kids.
Monday, November 26, 2012
Thanksgiving Day 26 - and Sadie's first day of Preschool!
Yesterday I was thankful for Brian's job. Today I am thankful for my own. I love my job. I teach online High School English. I work with awesome people doing something that I honestly love to do. And I am able to stay home. Plus in this kind of teaching environment I can work part time, so I am able to still attend Sadie's appointments and be involved in her therapies.
Today was my first day back to work. Honestly, I've missed it. Sometimes, when I'm sitting at home and there's nothing new going on on Facebook, I like to work. It's easy to pull out my computer and spend an hour creating a powerpoint presentation, or grading essays. And I can do it all in my pajamas without showering!!
Today was also Sadie's first day of preshool, and let me tell you, it was much easier to focus on work with only one baby at home!!
This morning we took Sadie to school and brought her all the way into her classroom. Her teacher is so nice and they have a room full of caring adults. It's hard to believe she's already so big. Today was the beginning of an era, she will now go to school everyday for the next 14 or so years.
I accidentally forgot Sadie's food for the day, so I had to go home and come back. When I came back to school Sadie was sitting in a little chair with a toy that she had to touch/hit to activate lights and sound and she was all smiles, as happy as could be! She was LOVING being at school.
Then when I picked her up, I was told that she had the best first day of school ever. Miss Kasey called her a delight. I'm so proud of my big girl!
Today was my first day back to work. Honestly, I've missed it. Sometimes, when I'm sitting at home and there's nothing new going on on Facebook, I like to work. It's easy to pull out my computer and spend an hour creating a powerpoint presentation, or grading essays. And I can do it all in my pajamas without showering!!
Today was also Sadie's first day of preshool, and let me tell you, it was much easier to focus on work with only one baby at home!!
This morning we took Sadie to school and brought her all the way into her classroom. Her teacher is so nice and they have a room full of caring adults. It's hard to believe she's already so big. Today was the beginning of an era, she will now go to school everyday for the next 14 or so years.
I accidentally forgot Sadie's food for the day, so I had to go home and come back. When I came back to school Sadie was sitting in a little chair with a toy that she had to touch/hit to activate lights and sound and she was all smiles, as happy as could be! She was LOVING being at school.
Then when I picked her up, I was told that she had the best first day of school ever. Miss Kasey called her a delight. I'm so proud of my big girl!
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| Sadie and her teacher, Miss Kasey |
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| Sadie on her first day of preschool |
Sunday, November 25, 2012
Thanksgiving Day 25
I am so thankful for Brian's job. Brian works from home, which means that he doesn't have to get up all crazy early to battle traffic for his morning commute. It also means that he usually gets home around 3:00 and does office work for the last couple of hours of the day, so I don't have to wait for him to battle an afternoon of freeway traffic either. There are times when he has to get up early and leave, or has an appointment later in the afternoon that causes him to come home later, but for the most part, he's only out of the house between 10:00-2:00.
I'm also thankful for his flexible schedule that allows him to attend and participate in meetings and appointments for Sadie. Sure, he will be on the phone while we're driving helping someone with a problem, or he'll step out to take a work-related call, but the fact that he's there means a lot. He is also able to run some of my errands since he is out and all over the valley during the week visiting accounts.
I realize that we're really spoiled being able to both work from home, and I'm so thankful for that. It means we get to spend more time with our children, we get to spend more time with each other, and we spend less money on things like gas, eating out for lunch, and clothing that is work appropriate!!
I'm also thankful for his flexible schedule that allows him to attend and participate in meetings and appointments for Sadie. Sure, he will be on the phone while we're driving helping someone with a problem, or he'll step out to take a work-related call, but the fact that he's there means a lot. He is also able to run some of my errands since he is out and all over the valley during the week visiting accounts.
I realize that we're really spoiled being able to both work from home, and I'm so thankful for that. It means we get to spend more time with our children, we get to spend more time with each other, and we spend less money on things like gas, eating out for lunch, and clothing that is work appropriate!!
Saturday, November 24, 2012
Thanksgiving Day 24
We have this grocery store here in Phoenix called Sprouts. It's healthy, natural, and organic...but you don't have to be a complete hippy to shop there. I like Sprouts because it has items in bulk bins, as well as spices in bulk (I just needed a little bit of cayenne for a recipe, so I put some in a baggie and paid $.13 for it...instead of buying a whole bottle!). I also am always impressed with their produce prices. I think they try to get produce locally (here that includes California...even though that's not really local), so it is cheaper and better quality. They also have a HUUUUGE vitamin section. Seriously, like a third of the store is vitamins. I like it because I can find healthy natural remedies for Sadie, or I can buy the prenatals I like without having to order online or go into a special vitamin store. And when I hurt my knee and I was pregnant, I found arnica there. Or when I needed papaya enzymes to help with heartburn, it was easy to pick them up at Sprouts.
The hard thing about shopping at Sprouts is that they DON'T carry some of the necessary things we need, so I still have to also visit my big chain grocery store for things like Tylenol, frozen juice concentrate, and Tillamook cheese. But, it's okay, I'm used to it by now. In fact, when I was shopping last minute for Thanksgiving, I actually bought a bag of flour and it was weird...I'm just so used to getting it in bulk at Sprouts!
I like that Sprouts has things on my everyday grocery list, but also odd things that I might only find at Whole Foods. It's like a happy medium. And the best part is that this fall they opened a new store that is so close to my house. I could easily ride my bike there. Whereas before, it was a 20 minute drive...which I made each week. Now, I can go for just a few things really quickly and I'm hope within 20 minutes!
I am thankful for Sprouts.
The hard thing about shopping at Sprouts is that they DON'T carry some of the necessary things we need, so I still have to also visit my big chain grocery store for things like Tylenol, frozen juice concentrate, and Tillamook cheese. But, it's okay, I'm used to it by now. In fact, when I was shopping last minute for Thanksgiving, I actually bought a bag of flour and it was weird...I'm just so used to getting it in bulk at Sprouts!
I like that Sprouts has things on my everyday grocery list, but also odd things that I might only find at Whole Foods. It's like a happy medium. And the best part is that this fall they opened a new store that is so close to my house. I could easily ride my bike there. Whereas before, it was a 20 minute drive...which I made each week. Now, I can go for just a few things really quickly and I'm hope within 20 minutes!
I am thankful for Sprouts.
Friday, November 23, 2012
Thanksgiving Day 23
Boy am I thankful for a nap today!! I am thankful for a nap yesterday too! On the weekends, when Brian is home and able to take care of Sadie, he always lets me go lay down (sometimes with Ezra, sometimes alone) and he lets me sleep for 2 hours! It's so nice.
On week days I hardly ever get a nap...and since I'm gonna go back to work next week, it's going to be even harder to nap. So, I am very thankful for the naps I get on the weekends. Having a newborn who gets up 3 or 4 times a night, and wakes me up at 5:00am is exhausting!
...but he's so worth it!
On week days I hardly ever get a nap...and since I'm gonna go back to work next week, it's going to be even harder to nap. So, I am very thankful for the naps I get on the weekends. Having a newborn who gets up 3 or 4 times a night, and wakes me up at 5:00am is exhausting!
...but he's so worth it!
Thursday, November 22, 2012
Thanksgiving Day 22
Today is actually Thanksgiving day (here in America, anyway), and we're spending it with my family here in Phoenix. I made some yummy vegetarian dishes (so Brian doesn't have to eat just mashed potatoes and cranberries...although, I think he'd like that) to go with our regular turkey-stuffing-potatoes-etc. dinner. It was all so yummy!Now that we're home and the gluttony is over (for now), I have a chance to reflect on the day and say that I am truly thankful for my family. Not just the family that we spent time with today, but all of them...especially Sadie and Ezra's grandparents. I am always amazed at how much Sadie is loved.
It's so easy to be all gaga over Ezra because he's a cute, tiny baby... but nobody ever forgets to be gaga over Sadie too. And she loves EVERY moment of it! It'd be easy to overlook Sadie, I mean, she sits in a chair and is pretty much quiet and easy-going most of the time. But no, nobody does. Even though she can't crawl into Grandpa's lap and cuddle with him, he still makes sure she spends some time there. And even though it's fun to talk about Ezra and how cute he is, Grammy always wants to talk to Sadie too when we Skype.
I know Sadie has no idea how awesome this is, she just knows it as normal...and I'm REALLY THANKFUL for that!!
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| Sadie made this picture at OT this week (those are hand turkeys). I brought it and gave it to Grandpa and Nana. We took Sadie's picture with her artwork so we could remember how old she was when she made it. |
Wednesday, November 21, 2012
Thanksgiving Day 21
I am so thankful for the school district where we live. Yesterday we had Sadie's IEP meeting, and even though she won't be attending school in the school district, they have been nothing but helpful in evaluating her and writing appropriate goals for her IEP.
For those who are not familiar with special education, and IEP stands for Individualized Education Plan, and basically maps out what a child needs in order to be successful in school. As you can imagine, each one looks very different, because they are based on the child's strengths, weaknesses, and specific needs. Since Sadie is very weak in all areas, she has goals written for communication/language, motor skills (PT and OT), vision, and adaptive.
Some of Sadie's goals include using a switch to participate in a group activity or to make a choice, to sit unsupported, roll in either direction (toward something she wants), and bring a spoon with food on it to her mouth. All of these are pre-academic, but are stepping stones toward big, life goals that I have for her. We also incorporated a toileting routine into her IEP to make sure that that gets followed.
The meeting went really well. The team had sent me a draft ahead of time, so I was able to look at it and make some notes before the meeting. They listened to what I had to say and I felt like my word was just as valuable as anybody else's in that room. And now that she has this document in place, she is able to start school!!
Monday morning I get to drop her off for her first day of preschool!!
For those who are not familiar with special education, and IEP stands for Individualized Education Plan, and basically maps out what a child needs in order to be successful in school. As you can imagine, each one looks very different, because they are based on the child's strengths, weaknesses, and specific needs. Since Sadie is very weak in all areas, she has goals written for communication/language, motor skills (PT and OT), vision, and adaptive.
Some of Sadie's goals include using a switch to participate in a group activity or to make a choice, to sit unsupported, roll in either direction (toward something she wants), and bring a spoon with food on it to her mouth. All of these are pre-academic, but are stepping stones toward big, life goals that I have for her. We also incorporated a toileting routine into her IEP to make sure that that gets followed.
The meeting went really well. The team had sent me a draft ahead of time, so I was able to look at it and make some notes before the meeting. They listened to what I had to say and I felt like my word was just as valuable as anybody else's in that room. And now that she has this document in place, she is able to start school!!
Monday morning I get to drop her off for her first day of preschool!!
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!!
Monday, November 19, 2012
Thanksgiving Days 18 and 19
I am thankful for cerebral palsy. I know that sounds weird, because most of the time I hate it and I wish it had never invaded our family. But, when I really think about what Sadie's disability has done for me, I am thankful. I have met people who are now part of my life that I cherish, that I never would have had the opportunity to meet otherwise. I have had opportunities to be part of amazing things, like fundraisers for Phoenix Children's Hospital.
Sometimes it's hard...okay, most of the time it's hard, but because it's hard I appreciate the little things. I appreciate being able to walk, and talk, and feed myself. And I appreciate the development of these skills. You'd better believe when Ezra learns how to do these things we WILL NOT take them for granted (ie. be prepared for lots of silly videos of him saying Mama and walking around the house!) I appreciate the handicapped parking spot I get. I appreciate not having to pay co-pays when we take Sadie to the doctor, or when she needs prescriptions or medical equipment. I appreciate ramps and elevators and sidewalks more than I ever thought I would!!
I think we all have things in our lives that we wish we could change, but it's important that, when you can't change them, you look at them differently. Be thankful that you/your kids are unique, even if it's because they have a disability.
Second, I am also thankful for Sadie's Cortical Visual Impairment. Sadie is considered blind. It's not her eyes that can't see, it's her brain that can't read the information from her eyes, and it qualifies us for services from The Foundation for Blind Children. Now that I have a typical developing child, I see what we missed out on concerning Sadie's vision. However, like above, I see what we would have missed out on had her vision been normal.
I have met some of the most caring and wonderful people through FBC. I have had the opportunity to participate in programs that have helped me grow as a parent. And now I am thankful that Sadie will get to participate in the preschool program there.
I think we all have things in our lives that we wish we could change, but it's important that, when you can't change them, you look at them differently. I hope you are thankful that you/your kids are unique, even if it's because they have a disability.
Sometimes it's hard...okay, most of the time it's hard, but because it's hard I appreciate the little things. I appreciate being able to walk, and talk, and feed myself. And I appreciate the development of these skills. You'd better believe when Ezra learns how to do these things we WILL NOT take them for granted (ie. be prepared for lots of silly videos of him saying Mama and walking around the house!) I appreciate the handicapped parking spot I get. I appreciate not having to pay co-pays when we take Sadie to the doctor, or when she needs prescriptions or medical equipment. I appreciate ramps and elevators and sidewalks more than I ever thought I would!!
I think we all have things in our lives that we wish we could change, but it's important that, when you can't change them, you look at them differently. Be thankful that you/your kids are unique, even if it's because they have a disability.
Second, I am also thankful for Sadie's Cortical Visual Impairment. Sadie is considered blind. It's not her eyes that can't see, it's her brain that can't read the information from her eyes, and it qualifies us for services from The Foundation for Blind Children. Now that I have a typical developing child, I see what we missed out on concerning Sadie's vision. However, like above, I see what we would have missed out on had her vision been normal.
I have met some of the most caring and wonderful people through FBC. I have had the opportunity to participate in programs that have helped me grow as a parent. And now I am thankful that Sadie will get to participate in the preschool program there.
I think we all have things in our lives that we wish we could change, but it's important that, when you can't change them, you look at them differently. I hope you are thankful that you/your kids are unique, even if it's because they have a disability.
Sunday, November 18, 2012
Thanksgiving Days 16 and 17
I am thankful for family. We don't have a lot of family who is local...just my dad, stepmom, and sister, and they don't even live that close so we don't see them a whole lot. But, the other day Brian worked late, and my sister came over to visit just after 4:00 and it couldn't have been better timing. Everything happened all at once, the baby was screaming, Sadie needed to eat, dinner needed to be started, and Ezra's diaper exploded!! I was so thankful that Elizabeth was there to help...and willing to help!
We usually spend Thanksgiving with our local family too, which is nice. This year, we'll go over to their house, but we're splitting the cooking and stuff. I'm excited. I really like Thanksgiving. Last year Brian and I were both vegetarian, and it was hard to create an acceptable menu. This year, only Brian is vegetarian, but I suspect I will be again eventually, so I'm starting a tradition...pumpkin enchildadas. They are so good, but I've only made them once because they are a lot of work! Therefore, they are going to become a holiday meal tradition so that those who are vegetarian have a yummy alternative to turkey! (I'll try to remember to take a picture for you)
I am also thankful for Sesame St. I know that sounds weird, but honestly, it's been around for a long time and taught so many children so many things. When I was taking a class for my ELL (English Language Learner) certification, we watched this video about Sesame St. and its mission and how it operates internationally. Did you know that the Sesame St. in Mexico or Germany or Albania has different characters and different topics than American Sesame St? They don't just translate it and rebroadcast it! They design each "branch" of Sesame St. specific to that culture and its needs. Genius.
Today we went to see Sesame St. Live with Sadie. She watches a lot of Sesame St. (mostly because that's the show I like to watch!) and we thought she might enjoy the live show. Before the show she was turning her head and leaning over to the point where we had to really strap her into her wheelchair. But, as soon as the show started, she was sitting up straight and looking forward. There was lots of music and I was able to sing along and "play" with Sadie. And there were a few places where they had a loud firework that would go off and streamers and confetti would come down...she liked this too! It was a good show, and I think Sadie really enjoyed it (at least I really enjoyed it!). It was fun to take her.
We usually spend Thanksgiving with our local family too, which is nice. This year, we'll go over to their house, but we're splitting the cooking and stuff. I'm excited. I really like Thanksgiving. Last year Brian and I were both vegetarian, and it was hard to create an acceptable menu. This year, only Brian is vegetarian, but I suspect I will be again eventually, so I'm starting a tradition...pumpkin enchildadas. They are so good, but I've only made them once because they are a lot of work! Therefore, they are going to become a holiday meal tradition so that those who are vegetarian have a yummy alternative to turkey! (I'll try to remember to take a picture for you)
I am also thankful for Sesame St. I know that sounds weird, but honestly, it's been around for a long time and taught so many children so many things. When I was taking a class for my ELL (English Language Learner) certification, we watched this video about Sesame St. and its mission and how it operates internationally. Did you know that the Sesame St. in Mexico or Germany or Albania has different characters and different topics than American Sesame St? They don't just translate it and rebroadcast it! They design each "branch" of Sesame St. specific to that culture and its needs. Genius.
Today we went to see Sesame St. Live with Sadie. She watches a lot of Sesame St. (mostly because that's the show I like to watch!) and we thought she might enjoy the live show. Before the show she was turning her head and leaning over to the point where we had to really strap her into her wheelchair. But, as soon as the show started, she was sitting up straight and looking forward. There was lots of music and I was able to sing along and "play" with Sadie. And there were a few places where they had a loud firework that would go off and streamers and confetti would come down...she liked this too! It was a good show, and I think Sadie really enjoyed it (at least I really enjoyed it!). It was fun to take her.
Thursday, November 15, 2012
Thanksgiving Day 15
Today I am thankful for the NICU. Sadie's life hung in the balances for an entire week while the wonderful NICU staff at Phoenix Children's Hospital worked so very hard to find out what was wrong and make it better. We still keep in touch with the Neonatologist from the NICU, who cried with us when we decided to let Sadie go, and cried again with us when we learned that Sadie was getting better.
This last week I've had a good friend and a family member both with babies in the NICU... the kind of situations where special newborn intervention is saving their babies' lives. It is AMAZING what they can do for such little tiny people!
And speaking of little tiny people being kept alive in the NICU, Baby Beau's open heart surgery is tomorrow morning. He has had over a week to gain strength and bond with his parents, and he is doing wonderfully! Please keep them all in your prayers, tomorrow is a scary day for everybody.
Here are some pictures of Mama and Daddy enjoying their little boy.
This last week I've had a good friend and a family member both with babies in the NICU... the kind of situations where special newborn intervention is saving their babies' lives. It is AMAZING what they can do for such little tiny people!
And speaking of little tiny people being kept alive in the NICU, Baby Beau's open heart surgery is tomorrow morning. He has had over a week to gain strength and bond with his parents, and he is doing wonderfully! Please keep them all in your prayers, tomorrow is a scary day for everybody.
Here are some pictures of Mama and Daddy enjoying their little boy.
Wednesday, November 14, 2012
Thanksgiving Day 14
Can you believe we're almost half way through November already???
And Ezra is one month old already???
Today I'm thankful for technology. I love that I can write this blog and connect with people I don't even know all over the world! But mostly, I can connect with the people I do know...especially grandparents.
Sadie and Ezra's Grammys both live out of the state. And Grandpa and Nana live here, but they're still an hour away, so we don't see them all that much. So, we use facebook, and skype, and I post things here on the blog.
Like this...
Technology is so amazing and has allowed long distance relationships to really mean so much more than they used to!! When I was in High School and met other people at camp I actually had to WRITE LETTERS and PUT THEM IN THE MAIL!!! Now it's so easy to keep in touch with the internet and cell phones that have free long distance. What an amazing society we live in!
And Ezra is one month old already???
Today I'm thankful for technology. I love that I can write this blog and connect with people I don't even know all over the world! But mostly, I can connect with the people I do know...especially grandparents.
Sadie and Ezra's Grammys both live out of the state. And Grandpa and Nana live here, but they're still an hour away, so we don't see them all that much. So, we use facebook, and skype, and I post things here on the blog.
Like this...
Technology is so amazing and has allowed long distance relationships to really mean so much more than they used to!! When I was in High School and met other people at camp I actually had to WRITE LETTERS and PUT THEM IN THE MAIL!!! Now it's so easy to keep in touch with the internet and cell phones that have free long distance. What an amazing society we live in!
Tuesday, November 13, 2012
Thanksgiving Day 13
I have really tried to embrace this attachment parenting thing, you know, the baby wearing (best thing EVER!), the nursing on demand, the co-sleeping, etc. And I'm all for all this stuff, but last night I just needed a break. I prayed for just an hour or two sleeping by myself.
Enter the swaddler.
I have mixed emotions about the swaddler. It's like the swing, don't overdo it. We didn't really use one with Sadie, because I was sort of against them...but with Ezra, I wanted to try it. Last night, I was desperate for just a few hours to myself, so I wrapped him up in the swaddler and was SHOCKED that he just fell asleep IN.HIS.BED!
He slept for 3 hours, nursed for 10 minutes and then slept another 3 hours. And it was like the best night of sleep in my life!
I am so thankful for sleep.
You don't realize how much you need good sleep until you don't get it. And with a newborn, you just don't get it.
Enter the swaddler.
I have mixed emotions about the swaddler. It's like the swing, don't overdo it. We didn't really use one with Sadie, because I was sort of against them...but with Ezra, I wanted to try it. Last night, I was desperate for just a few hours to myself, so I wrapped him up in the swaddler and was SHOCKED that he just fell asleep IN.HIS.BED!
He slept for 3 hours, nursed for 10 minutes and then slept another 3 hours. And it was like the best night of sleep in my life!
I am so thankful for sleep.
You don't realize how much you need good sleep until you don't get it. And with a newborn, you just don't get it.
Monday, November 12, 2012
Thanksgiving Day 12
When Sadie was about 6 months old, we started attending the infant program at Foundation for Blind Children (FBC). I couldn't wait to get involved when I heard they had activities for the kids, then they split out and have a parent-only meeting. This was my foot in the door of the special needs community. I remember bawling my eyes out at that first meeting where we went around the table and introduced ourselves and told about our children. It wasn't the last time I cried there...
My mom still likes to tell the story about when she came to visit and accompanied me to the infant program one Friday morning. As we were leaving, Sadie, who had already thrown up everywhere, was naked and screaming. We were standing in the hallway visiting with some of the teachers before leaving and my mom was holding Sadie, who puked EVERYWHERE. Giant amounts of breastmilk puke all over their hallway carpet...and nobody batted an eye. They just got the stuff to clean it up and never acted like it was a big deal. My mom was so impressed, I was so embarrassed.
Now that Sadie's almost 3, we're getting ready for her to start school. Luckily, we were able to fight and get her into school before her birthday and she'll be starting the Monday after Thanksgiving. We decided we want to send her to FBC, but now that we've moved across town, she'd go to a different branch, one that I've never visited...until today.
I left in tears, happy tears. This organization never ceases to amaze me.
We showed up for a tour of the preschool today, and were greeted by one of the lead therapists. Soon, Sadie's teacher (to be) came out to say hi. She said she only had one student in class today and he was sleeping, so she could visit with us. (We later found out that that one student who was sleeping was someone we know and love and are so excited to be in the same class with!!) We walked back to the classroom and talked about what their daily schedule is like, how feeding works in that class (all the kids in there have feeding tubes, Sadie will be the only one eating by mouth), and agreed that they should keep the potty schedule at school. They told me they treat the wheelchair like the car, it's used to get you there, and then you get out and then you "leave it in the parking lot." I was told that unless she was being taken somewhere, she probably won't be in her wheelchair at all. They showed me swings and special chairs and boards with textured cards indicating what they'd be doing next in their schedule. I was told that 3 times a month they'd get music therapy, twice a month they'd have pet therapy, and every week they'd get gymnastics...regardless of what their IEP says. And even as far as therapies indicated by IEPs, they always do more.
Then I was given more of a tour, while Sadie stayed in the classroom. By the time I came back, the teacher had Sadie out of her wheelchair and they were bouncing on the ball and Sadie had a HUGE smile on her face. She was picking her head up and laughing! And then they'd stop and the teacher would ask her if she wanted more. It was explained to me that you don't get anything for free at school, so if you like something and you want more, you have to vocalize or sign or show somehow that you want more. Brilliant! We didn't want to leave...especially Sadie!!
Then the woman who was giving us the tour actually helped us out to the car and even put Sadie into her carseat for me (Chelsea is sick today and couldn't come with us)!!
Like I said, I cried on the way home. I just feel so blessed and so thankful for these people, for this organization. It's not very often that I can go somewhere and Sadie is played with, talked to, and understood as much as she was today...and we were there all of 30 minutes!
Sadie will start school in 2 weeks from today and I can't wait!!
My mom still likes to tell the story about when she came to visit and accompanied me to the infant program one Friday morning. As we were leaving, Sadie, who had already thrown up everywhere, was naked and screaming. We were standing in the hallway visiting with some of the teachers before leaving and my mom was holding Sadie, who puked EVERYWHERE. Giant amounts of breastmilk puke all over their hallway carpet...and nobody batted an eye. They just got the stuff to clean it up and never acted like it was a big deal. My mom was so impressed, I was so embarrassed.
Now that Sadie's almost 3, we're getting ready for her to start school. Luckily, we were able to fight and get her into school before her birthday and she'll be starting the Monday after Thanksgiving. We decided we want to send her to FBC, but now that we've moved across town, she'd go to a different branch, one that I've never visited...until today.
I left in tears, happy tears. This organization never ceases to amaze me.
We showed up for a tour of the preschool today, and were greeted by one of the lead therapists. Soon, Sadie's teacher (to be) came out to say hi. She said she only had one student in class today and he was sleeping, so she could visit with us. (We later found out that that one student who was sleeping was someone we know and love and are so excited to be in the same class with!!) We walked back to the classroom and talked about what their daily schedule is like, how feeding works in that class (all the kids in there have feeding tubes, Sadie will be the only one eating by mouth), and agreed that they should keep the potty schedule at school. They told me they treat the wheelchair like the car, it's used to get you there, and then you get out and then you "leave it in the parking lot." I was told that unless she was being taken somewhere, she probably won't be in her wheelchair at all. They showed me swings and special chairs and boards with textured cards indicating what they'd be doing next in their schedule. I was told that 3 times a month they'd get music therapy, twice a month they'd have pet therapy, and every week they'd get gymnastics...regardless of what their IEP says. And even as far as therapies indicated by IEPs, they always do more.
Then I was given more of a tour, while Sadie stayed in the classroom. By the time I came back, the teacher had Sadie out of her wheelchair and they were bouncing on the ball and Sadie had a HUGE smile on her face. She was picking her head up and laughing! And then they'd stop and the teacher would ask her if she wanted more. It was explained to me that you don't get anything for free at school, so if you like something and you want more, you have to vocalize or sign or show somehow that you want more. Brilliant! We didn't want to leave...especially Sadie!!
Then the woman who was giving us the tour actually helped us out to the car and even put Sadie into her carseat for me (Chelsea is sick today and couldn't come with us)!!
Like I said, I cried on the way home. I just feel so blessed and so thankful for these people, for this organization. It's not very often that I can go somewhere and Sadie is played with, talked to, and understood as much as she was today...and we were there all of 30 minutes!
Sadie will start school in 2 weeks from today and I can't wait!!
Sunday, November 11, 2012
Thanksgiving Day 11 - Baby Beau update
I am so thankful for Sadie's therapists. We have a good team working with us and I appreciate the work that everybody does for my girl.
When we moved to the other side of town last year, we had to get all new therapists. It was hard to leave some and not so hard to leave others. OT has been the hardest to find, and now that we found someone, it's going to be hard to rearrange schedules for when Sadie starts school, but I am determined to keep her because I love what she does with Sadie!
There are so many therapies that we don't have that I'd like to take advantage of too... water, horses, music, etc. I hope that someday Sadie will get to do more fun things in the name of therapy!
Baby Beau update:
Beau's left lung collapsed over the weekend and he was on the ventilator while the nurses maintained a delicate balance between life and death for him. His lung has since opened back up, and he's off the vent, but now it looks like his right lung is collapsing. They are trying hard to keep both lungs functioning.
Beau had a procedure done called a balloon atrial septostomy and did great! Everybody seems really optimistic. His open heart surgery is scheduled for Thursday next week.
Today, Beau opened his eyes, cried, and even took a bottle!!
Mom and dad have been given a room at Ronald McDonald House so they can be close.
When we moved to the other side of town last year, we had to get all new therapists. It was hard to leave some and not so hard to leave others. OT has been the hardest to find, and now that we found someone, it's going to be hard to rearrange schedules for when Sadie starts school, but I am determined to keep her because I love what she does with Sadie!
There are so many therapies that we don't have that I'd like to take advantage of too... water, horses, music, etc. I hope that someday Sadie will get to do more fun things in the name of therapy!
Baby Beau update:
Beau's left lung collapsed over the weekend and he was on the ventilator while the nurses maintained a delicate balance between life and death for him. His lung has since opened back up, and he's off the vent, but now it looks like his right lung is collapsing. They are trying hard to keep both lungs functioning.
Beau had a procedure done called a balloon atrial septostomy and did great! Everybody seems really optimistic. His open heart surgery is scheduled for Thursday next week.
Today, Beau opened his eyes, cried, and even took a bottle!!
Mom and dad have been given a room at Ronald McDonald House so they can be close.
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| My cousin Noah (dad) with Beau |
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| Beau and his Mama, Angie |
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| first time Beau opened his eyes... and smiled for the camera!! |
Saturday, November 10, 2012
Thanksgiving Day 10
Today I am thankful for my neighbors. This morning I picked up my friend who lives down the street and we went to the food rescue together. And this afternoon/evening we joined our neighborhood for a block party. In our old neighborhood we barely knew anyone, and didn't really want to. But here, we have the nicest neighbors who have quickly become our good friends.
Soon after we moved last year, there was a block party. Tonight we had a second one. We now live in a neighborhood where people like each other, they look out for each other, their kids play with one another and grow up together. At the last block party, 2 of us were barely pregnant, now we both have babies. It was fun to talk about how our children will grow up together and probably be in the same class at school and play together at each others' houses.
I love our neighbors. I love that this neighborhood is quiet and safe. I love that I can talk to people and wave to people and visit people. I love that we live in a great school district and I am so thankful for people who love to help out!
Oh, and today I took Ezra to JC Penney and did some portraits (the Treguboffs are coming tomorrow to shoot both kids)...
Soon after we moved last year, there was a block party. Tonight we had a second one. We now live in a neighborhood where people like each other, they look out for each other, their kids play with one another and grow up together. At the last block party, 2 of us were barely pregnant, now we both have babies. It was fun to talk about how our children will grow up together and probably be in the same class at school and play together at each others' houses.
I love our neighbors. I love that this neighborhood is quiet and safe. I love that I can talk to people and wave to people and visit people. I love that we live in a great school district and I am so thankful for people who love to help out!
Oh, and today I took Ezra to JC Penney and did some portraits (the Treguboffs are coming tomorrow to shoot both kids)...
Friday, November 9, 2012
Thanksgiving Days 8 and 9 - the eye doctor and baby Beau
Yesterday I had a very upset baby all day, and Sadie wasn't feeling well either after getting up super early and having her eyes dilated. ...but I'm not thankful for either of those things!!
Day 8 - I'm thankful for Chelsea. Chelsea is our respite provider (read babysitter) and she is amazing. Her schedule is flexible because her other job is working for her parents at the store they own. She can handle anything Sadie throws her way (which really isn't a lot), and she loves Sadie. She and I have also become friends since she hangs out at my house while I work, and she accompanies me to therapies and doctor's appointments.
Yesterday she showed up at our house at 7:00 in the morning (which is super early considering she lives an hour away) to help take Sadie to the eye doctor. Seriously, I don't think I could have done it without Chelsea. She gets Sadie in and out of the car, she wheels her while I carry Ezra, she changed her when Sadie peed through her diaper... and she managed Sadie tube feed, which we had to bring with us since we left so early in the morning!
We are so lucky to have such great help. I don't know what we're going to do when the day comes that Chelsea can't do it anymore!!
Eye doctor update: He did a full exam, complete with dilating drops today. He found that her nerve damage (from lack of oxygen) is NOT getting worse and has not worsened from the first time he saw her, so that's good. He did say that if she starts having seizures, or has a particularly bad one, this damage could increase. He also said that her prescription hasn't really changed since last time he saw her and that it's not a very high prescription. However, she does have an astigmatism and he believes that is causing her vision to be blurry. He also noted that her right eye is still drifting out and not in alignment with her left eye. All of these things together are not providing her brain with very good visual input, which she needs in order for her vision to increase. So, we got a prescription for glasses.
The doctor believes that Sadie's vision is strong enough that glasses will help her focus and become more fluent in her "visual language," which will allow her brain to create those synapses and be more consistent when it receives visual input. We are also going to continue to patch just the left eye, in hopes that we can strengthen the muscles in the right one and pull it into alignment.
We will go back in January just to check up on things and see if there's any improvement. If we don't see any, we will have a talk about surgery to correct the strabismus (the eyes not being in alignment). His hopes though, are that by increasing her vision through glasses, and targeting that eye through patching, her brain will figure it out and start correcting itself.
I can't wait to show you what she looks like in glasses!!!
Day 9 - I am so thankful for Facebook. I know it sounds weird, but I seriously wouldn't be in contact with as many friends or family if I wasn't on Facebook or if Facebook didn't exist. On Wednesday, my cousin and his wife had their second baby boy. He was born with a congenital heart defect called TGA, which means that his arteries are mixed up and his blood isn't being oxygenated. She had him by C-section and he was immediately hooked up and taken away due to his fragile state. She didn't get to touch him or hold him or anything (so familiar). Today he is having a procedure done to help his blood mix so that it can carry oxygen, and they are awaiting open heart surgery.
To be in contact with my family during this hard time, and to receive updates on baby Beau, means so much to me. I am also thankful that I can post information and updates to those who don't even know my cousin, but are praying for this baby. I remember when Sadie was born and all the support we received from people (via facebook) that we didn't even know. So, prayers for baby Beau, and thankyou Facebook for keeping us close!
Day 8 - I'm thankful for Chelsea. Chelsea is our respite provider (read babysitter) and she is amazing. Her schedule is flexible because her other job is working for her parents at the store they own. She can handle anything Sadie throws her way (which really isn't a lot), and she loves Sadie. She and I have also become friends since she hangs out at my house while I work, and she accompanies me to therapies and doctor's appointments.
Yesterday she showed up at our house at 7:00 in the morning (which is super early considering she lives an hour away) to help take Sadie to the eye doctor. Seriously, I don't think I could have done it without Chelsea. She gets Sadie in and out of the car, she wheels her while I carry Ezra, she changed her when Sadie peed through her diaper... and she managed Sadie tube feed, which we had to bring with us since we left so early in the morning!
We are so lucky to have such great help. I don't know what we're going to do when the day comes that Chelsea can't do it anymore!!
Eye doctor update: He did a full exam, complete with dilating drops today. He found that her nerve damage (from lack of oxygen) is NOT getting worse and has not worsened from the first time he saw her, so that's good. He did say that if she starts having seizures, or has a particularly bad one, this damage could increase. He also said that her prescription hasn't really changed since last time he saw her and that it's not a very high prescription. However, she does have an astigmatism and he believes that is causing her vision to be blurry. He also noted that her right eye is still drifting out and not in alignment with her left eye. All of these things together are not providing her brain with very good visual input, which she needs in order for her vision to increase. So, we got a prescription for glasses.
The doctor believes that Sadie's vision is strong enough that glasses will help her focus and become more fluent in her "visual language," which will allow her brain to create those synapses and be more consistent when it receives visual input. We are also going to continue to patch just the left eye, in hopes that we can strengthen the muscles in the right one and pull it into alignment.
We will go back in January just to check up on things and see if there's any improvement. If we don't see any, we will have a talk about surgery to correct the strabismus (the eyes not being in alignment). His hopes though, are that by increasing her vision through glasses, and targeting that eye through patching, her brain will figure it out and start correcting itself.
I can't wait to show you what she looks like in glasses!!!
Day 9 - I am so thankful for Facebook. I know it sounds weird, but I seriously wouldn't be in contact with as many friends or family if I wasn't on Facebook or if Facebook didn't exist. On Wednesday, my cousin and his wife had their second baby boy. He was born with a congenital heart defect called TGA, which means that his arteries are mixed up and his blood isn't being oxygenated. She had him by C-section and he was immediately hooked up and taken away due to his fragile state. She didn't get to touch him or hold him or anything (so familiar). Today he is having a procedure done to help his blood mix so that it can carry oxygen, and they are awaiting open heart surgery.
To be in contact with my family during this hard time, and to receive updates on baby Beau, means so much to me. I am also thankful that I can post information and updates to those who don't even know my cousin, but are praying for this baby. I remember when Sadie was born and all the support we received from people (via facebook) that we didn't even know. So, prayers for baby Beau, and thankyou Facebook for keeping us close!
Wednesday, November 7, 2012
Thanksgiving Day 7 - preschool and Botox
Today I am thankful for insurance and other state provided programs that help Sadie. She requires a lot of work, and for that work, people need to be paid. We go to/have 6 therapies a week, she has 2 different wheelchairs, and so many doctors that I've lost count. Because the state has recognized that she'll be disabled and need care and equipment for her entire life, we don't have to pay copays, they cover whatever our private insurance doesn't when it comes to equipment, and they pay for all of her prescriptions. It's really nice to not have to pay for those things out of our own pockets. I can't imagine the $30 copay each and everytime we visit a doctor. Or paying 20% of equipment that costs $2000. And today, she had her first injections of Botox in her hips...the copay was $100!!!! I am very thankful that they'll pick up that tab!
I am very concerned that as Sadie grows up, we'll see changes in programs like this and we won't be as lucky as to receive services that pay for Sadie's therapies, doctors visits, and medical equipment. I hope that this isn't the case and that we'll continue to see positive changes if we see any at all. Each and every November, I'd like to be able to recognize just how thankful I am for these programs. And I'd also ask you to think of families like ours whenever you have a chance to vote for a decision concerning healthcare.
And now on to what we did today... we had a big day!
First we had a meeting regarding Sadie going to preschool. This was her MET (the meeting of her Multidisciplinary Educational Team), which is the last meeting before we write her IEP. The thing is, this has been a LOOOOONG drawn out process. It is always a big deal to get us to these meetings (being hugely pregnant, Brian taking time off of work, and now having to haul in two children...), and sometimes it feels like we could have just had the conversation over the phone or through email. There are meetings about what we talked about at the last meeting, then there are meetings about what the next meeting is going to be about. And today was a meeting about what we did at the last meeting and to determine eligibility...duh, she's eligible for special education.
But we jumped through the hoops and I'm excited because our next meeting WILL be her IEP, and that's the last step before she can go to school!! So, that's exciting.
Then this afternoon, Sadie had an appointment for Botox injections in her hip adductors (insides of her thighs). We were both a little nervous about this (and by we, I mean Brian and me), but it was REALLY not a big deal. The doctor seriously came in, hooked up Sadie to a TENS machine to stimulate her muscle, then she injected the medicine. Then she did the other leg. Sadie was a little shocked at the first one, and then cried a little with the second one...and we were done.
We have been told that it takes 24-48 hours for us to see the effects of the Botox. So far, it's not apparent. We'll also be getting her a brace to wear at night that helps with extended stretching to help loosen up those adductors. And we know that this isn't going to prevent surgery, but hopefully it'll delay it for a while.
Tell me what you think? Have you or your child had Botox (not cosmetically)? How did it work for you? Any advice or words of wisdom?
(I have pictures, but my hotmail account isn't working right and I can't access them... maybe tomorrow!)
I am very concerned that as Sadie grows up, we'll see changes in programs like this and we won't be as lucky as to receive services that pay for Sadie's therapies, doctors visits, and medical equipment. I hope that this isn't the case and that we'll continue to see positive changes if we see any at all. Each and every November, I'd like to be able to recognize just how thankful I am for these programs. And I'd also ask you to think of families like ours whenever you have a chance to vote for a decision concerning healthcare.
And now on to what we did today... we had a big day!
First we had a meeting regarding Sadie going to preschool. This was her MET (the meeting of her Multidisciplinary Educational Team), which is the last meeting before we write her IEP. The thing is, this has been a LOOOOONG drawn out process. It is always a big deal to get us to these meetings (being hugely pregnant, Brian taking time off of work, and now having to haul in two children...), and sometimes it feels like we could have just had the conversation over the phone or through email. There are meetings about what we talked about at the last meeting, then there are meetings about what the next meeting is going to be about. And today was a meeting about what we did at the last meeting and to determine eligibility...duh, she's eligible for special education.
But we jumped through the hoops and I'm excited because our next meeting WILL be her IEP, and that's the last step before she can go to school!! So, that's exciting.
Then this afternoon, Sadie had an appointment for Botox injections in her hip adductors (insides of her thighs). We were both a little nervous about this (and by we, I mean Brian and me), but it was REALLY not a big deal. The doctor seriously came in, hooked up Sadie to a TENS machine to stimulate her muscle, then she injected the medicine. Then she did the other leg. Sadie was a little shocked at the first one, and then cried a little with the second one...and we were done.
We have been told that it takes 24-48 hours for us to see the effects of the Botox. So far, it's not apparent. We'll also be getting her a brace to wear at night that helps with extended stretching to help loosen up those adductors. And we know that this isn't going to prevent surgery, but hopefully it'll delay it for a while.
Tell me what you think? Have you or your child had Botox (not cosmetically)? How did it work for you? Any advice or words of wisdom?
(I have pictures, but my hotmail account isn't working right and I can't access them... maybe tomorrow!)
Tuesday, November 6, 2012
Thanksgiving Day 6 - and a potty training update
Today everybody is talking about being thankful to have the freedom to vote and blah blah blah. While I think that is an important freedom, I'm not really that into politics, so I'm not going to follow suit today.
Instead, I'm going to talk about my thankfulness for the help I receive. Today was my first trip out by myself with both kids. We went to Sadie's therapy, and I knew it'd take a little time to get everyone out of the car, strapped into the wheelchair, put in the baby carrier, etc. so I showed up early. Ezra screamed the whole way there (please God, not another car screamer!), so it was good that I allowed myself some extra time, because he needed to nurse when we got there in order to calm down.
And then I realized how thankful I really am for Chelsea, our respite provider, who has been coming with me to therapies and helping me get Sadie to the car and out of the car and waiting in the car while I go get smoothies... It's a lot harder than I expected to wear Ezra in the baby wrap, push Sadie's wheelchair, carry the diaper bag, etc.
After therapy, Kristi, our OT, helped get us all back into the car. And when we got home, Brian was here and offered to get Sadie and bring her in the house. Just having that little bit of help goes a long ways. I didn't realize how much work it is to take both kids out, and how much I really appreciate the help when I have it.
WARNING!!! Poop picture... if you're offended or grossed out, don't scroll down!!
I just want to report that we (re)started potty training yesterday. Before I was too pregnant to get down on the floor and lift Sadie, we were doing pretty well at going pee in the potty... never poop, but lots of pee. She would go almost every time I sat her there! Yesterday there wasn't any pee, but today there have been some dribbles. But we got something better...POOP!! Sadie pooped on the potty today for the first time ever!
...and I took a picture.
I'm such a proud Mama!!
Instead, I'm going to talk about my thankfulness for the help I receive. Today was my first trip out by myself with both kids. We went to Sadie's therapy, and I knew it'd take a little time to get everyone out of the car, strapped into the wheelchair, put in the baby carrier, etc. so I showed up early. Ezra screamed the whole way there (please God, not another car screamer!), so it was good that I allowed myself some extra time, because he needed to nurse when we got there in order to calm down.
And then I realized how thankful I really am for Chelsea, our respite provider, who has been coming with me to therapies and helping me get Sadie to the car and out of the car and waiting in the car while I go get smoothies... It's a lot harder than I expected to wear Ezra in the baby wrap, push Sadie's wheelchair, carry the diaper bag, etc.
After therapy, Kristi, our OT, helped get us all back into the car. And when we got home, Brian was here and offered to get Sadie and bring her in the house. Just having that little bit of help goes a long ways. I didn't realize how much work it is to take both kids out, and how much I really appreciate the help when I have it.
WARNING!!! Poop picture... if you're offended or grossed out, don't scroll down!!
I just want to report that we (re)started potty training yesterday. Before I was too pregnant to get down on the floor and lift Sadie, we were doing pretty well at going pee in the potty... never poop, but lots of pee. She would go almost every time I sat her there! Yesterday there wasn't any pee, but today there have been some dribbles. But we got something better...POOP!! Sadie pooped on the potty today for the first time ever!
...and I took a picture.
I'm such a proud Mama!!
Monday, November 5, 2012
Thanksgiving Day 5
Today I am thankful for my husband. He is amazing. My parents continually remind me of how lucky I am that I have a husband that helps out so much. Especially lately, Brian has had to do almost everything with Sadie. When he's done with work, I usually hand off Sadie to him and he takes care of her for the rest of the evening. And on the weekends... he mostly does it all. He understands that Ezra needs ME right now and that either of us can change Sadie's diaper, feed her, etc. He even lets me take naps and leave the house by myself!!
Not only am I thankful that he's willing to help so much with Sadie, but that he's competent enough that I know he can take care of her the way I would. We make decisions together about her feedings and nutrition, about her daily activity, and about her routines. So, he always knows what to do if things have changed. He also participates in her therapies, doctor's appointments, and preschool meetings when he can.
I couldn't ask for a better husband. He is so patient and he loves all 3 of us so much. And he always is pushing me to do my best, give my best to my children, and reminding me of my goals and dreams so that I don't regret my actions.
Thank you, Brian for loving me so much!
Not only am I thankful that he's willing to help so much with Sadie, but that he's competent enough that I know he can take care of her the way I would. We make decisions together about her feedings and nutrition, about her daily activity, and about her routines. So, he always knows what to do if things have changed. He also participates in her therapies, doctor's appointments, and preschool meetings when he can.
I couldn't ask for a better husband. He is so patient and he loves all 3 of us so much. And he always is pushing me to do my best, give my best to my children, and reminding me of my goals and dreams so that I don't regret my actions.
Thank you, Brian for loving me so much!
Sunday, November 4, 2012
Thanksgiving Day 4
What?! It's already the 4th? Oh my...
Today I am thankful for where I live. (If we were doing this in July, I might have a different opinion, but November is really nice!!) The weather is beautiful this time of year, especially first thing in the morning. I love using our patio furniture to enjoy dinner outside, as well as doing my work out there.
But it's not just the weather, I am thankful for all the resources I have here in Phoenix for Sadie. The Children's Hospital is amazing, there are many different therapies to choose from, and I even found a special needs dentist!!! We have established a community around our child and I could never imagine leaving this place to having to do that all over again.
Oh, and we have an awesome neighborhood. Not long after we moved, there was a block party. It was so fun to meet many of our new neighbors, but we were overwhelmed having just moved into the neighborhood. Recently, we were saying we need to have another block party, especially now that we know a few more people and have a better idea of things. Sure enough, someone showed up at our door on Halloween with a flyer!! Block party next weekend!!
What about you? Do you love where you live? Are there certain things that YOUR city has to offer that you can't imagine living without?
Today I am thankful for where I live. (If we were doing this in July, I might have a different opinion, but November is really nice!!) The weather is beautiful this time of year, especially first thing in the morning. I love using our patio furniture to enjoy dinner outside, as well as doing my work out there.
But it's not just the weather, I am thankful for all the resources I have here in Phoenix for Sadie. The Children's Hospital is amazing, there are many different therapies to choose from, and I even found a special needs dentist!!! We have established a community around our child and I could never imagine leaving this place to having to do that all over again.
Oh, and we have an awesome neighborhood. Not long after we moved, there was a block party. It was so fun to meet many of our new neighbors, but we were overwhelmed having just moved into the neighborhood. Recently, we were saying we need to have another block party, especially now that we know a few more people and have a better idea of things. Sure enough, someone showed up at our door on Halloween with a flyer!! Block party next weekend!!
What about you? Do you love where you live? Are there certain things that YOUR city has to offer that you can't imagine living without?
Saturday, November 3, 2012
Thanksgiving Day 3
There is a mommy in my special needs group who works with her husband doing photography. They provide free photography to families with special needs children. And what's cool about it is that they way they take pictures, they can capture the perfect moment, no matter what kind of special needs your child has.
Here are our family portraits for this year:
I am so excited to have them come back this weekend and take newborn pictures and sibling pictures for us!! They are truly wonderful people to give this gift to so many families, especially ours. I am so thankful to have this opportunity to know them.
Find them at www.tregphotography.com
Here are our family portraits for this year:
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| Look at all that lovely red curly hair!! |
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| Daddy's girl |
I am so excited to have them come back this weekend and take newborn pictures and sibling pictures for us!! They are truly wonderful people to give this gift to so many families, especially ours. I am so thankful to have this opportunity to know them.
Find them at www.tregphotography.com
Friday, November 2, 2012
Thanksgiving Day 2
Being part of a special needs mommy group is great, but it also has its down sides. This year I experienced loss with 3 of my special needs mommy friends (okay, so one I don't really know...but I feel close to her because her daughter reminds me of Sadie in a lot of ways). It is sad when a child dies, more sad than anything I've ever experienced...even if I've never actually met that child.
So, today I am thankful for my children. I know Sadie may not be with us forever, and the loss of the child this week reminded me that things can go downhill fast, but for now she is healthy and happy, and for that I am thankful. We don't spend time in the hospital with seizures or pneumonia or other things and I am thankful for that. Sadie is only on one medication and I am thankful for that. She is growing and eating and sleeping and is going to start school (hopefully) this month and I am SO thankful for that.
Ezra was born healthy, with no birth complications, and I am thankful for that. He is big and strong and smart and I am thankful for that.
I also know that just because things are healthy and happy now, there is no guarantee that they will be that way forever. So, I choose to be thankful for what I have each and every day.
I know that not everyone who reads this blog has healthy children, but I hope that you can still find something to be thankful for regarding your children. I hope that you are thankful that you have him/her/them, even if life is hard. Because, I'm pretty sure life would be even harder missing them each and every day because they are gone forever.
So, today I am thankful for my children. I know Sadie may not be with us forever, and the loss of the child this week reminded me that things can go downhill fast, but for now she is healthy and happy, and for that I am thankful. We don't spend time in the hospital with seizures or pneumonia or other things and I am thankful for that. Sadie is only on one medication and I am thankful for that. She is growing and eating and sleeping and is going to start school (hopefully) this month and I am SO thankful for that.
Ezra was born healthy, with no birth complications, and I am thankful for that. He is big and strong and smart and I am thankful for that.
I also know that just because things are healthy and happy now, there is no guarantee that they will be that way forever. So, I choose to be thankful for what I have each and every day.
I know that not everyone who reads this blog has healthy children, but I hope that you can still find something to be thankful for regarding your children. I hope that you are thankful that you have him/her/them, even if life is hard. Because, I'm pretty sure life would be even harder missing them each and every day because they are gone forever.
Thursday, November 1, 2012
Thanksgiving Day 1
It's November again, so I will start my 30 days of Thankfulness. Each day this month I will write about something I am thankful for. Check back often to see how truly good we have it, in spite of challenging circumstances. And I would love to see in the comments section what you're thankful for each day!!
Today I am thankful for my health. After having Ezra, I was a little slow to recover...or at least it felt that way! I couldn't really help take care of Sadie at all, and then I was told that even the little bit that I was doing was too much, and to stop. It was so hard not to be able to lift her, get her to therapy, help change her diaper, anything.
And I know, I'm only like 2.5 weeks post partum, but my recovery is SO.MUCH.BETTER. And I am thankful that I can help out again, and lift my girl and snuggle her.
But, she is so big, and she's only going to get bigger. So, I am thankful that Brian and I are strong and don't have any major back issues (yet). We are both healthy and will hopefully be able to lift Sadie for many years to come!
Do you have a child who can't walk? Do you struggle to lift and carry and transport your child? What do you do for help? Do you have a plan in place for when your child gets too big to carry?
Today I am thankful for my health. After having Ezra, I was a little slow to recover...or at least it felt that way! I couldn't really help take care of Sadie at all, and then I was told that even the little bit that I was doing was too much, and to stop. It was so hard not to be able to lift her, get her to therapy, help change her diaper, anything.
And I know, I'm only like 2.5 weeks post partum, but my recovery is SO.MUCH.BETTER. And I am thankful that I can help out again, and lift my girl and snuggle her.
But, she is so big, and she's only going to get bigger. So, I am thankful that Brian and I are strong and don't have any major back issues (yet). We are both healthy and will hopefully be able to lift Sadie for many years to come!
Do you have a child who can't walk? Do you struggle to lift and carry and transport your child? What do you do for help? Do you have a plan in place for when your child gets too big to carry?
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