Wednesday, February 23, 2011
Monday, February 21, 2011
It's not the first time, and it won't be the last...
From PWS Mom blog:
She asked what Prader-Willi was and I briefly explained that it is something that affects the brain and makes it so you never feel full.
She said laughing,"Maybe that's what I have."
I kind of chuckled to be polite but I still cringe every time someone says that to me. They are joking of course. But I don't think it's funny.
This really hit home with me. I've had this exact same conversation and thoughts a few times already with people who mean well.
I cringe also... for the person who said it; for my daughter; and for the person I used to be who might have said the same thing - not knowing the sickening reality of PWS and not aware of how hurtful a light comment can sometimes be.
Sunday, February 20, 2011
She's quite proud of herself....
"Who says I have low muscle tone?
Hmmm, I wonder if Mommy will notice that I just dumped over the laundry..."
Ooops! Caught!
Maybe if I smile real big, she won't notice the laundry on the floor
Thursday, February 17, 2011
Crazy Communication Milestone Day!
This past year and a half has been difficult in more ways than one. Only recently did I realize that I really had hardly ever written down any milestone that Olivia has reached; so when I look back I am only sure of the specific date for a few things. I'm really going to remedy that going forward.
Today was just a strange day in a really good way. Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded. It was as if her body and her brain finally realized she could move and do so much more than just sit there. It took her almost a week to try and venture out of the area we did her therapy in all the time. At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther. To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room. Now it's thrilling to see her try and follow us from room to room. She still doesn't do it as much as I would like, but it's neat to know she wants to be with us.
Earlier this week, Amelia was playing dragon and roaring alot. Sunday, right after Mia roared, so did Livie - who was right next to her. It was so funny! She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again.
About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since. Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times. She doesn't really say mama a lot, but she has been able to say that one for a while. She also has tried to say "eat" but with no sound coming out. It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut. She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e". Try it and you will know what I am talking about. It's kind of funny that she mimics the movement but can't quite get sound to come out. All of these words are approximations, but they are in context and I will take it!
Our speech therapist is really an amazing woman. We have been so blessed with our therapists. She has so much knowledge and explains so much to us. Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences. It's neat to see Olivia starting this process. It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are. I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech.
She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps. She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them. She bounces constantly and has been pulling herself to stand everywhere trying to reach things. She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old. She's WAY more inquisitive than I remember Amelia being at this stage. Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more.
Olivia also walked today with a toy walker! Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it. She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again. She was going from the therapist to myself and back again. She was exhausted after therapy was over and slept an hour longer than normal for her nap.
This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that. I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier. We just didn't have an endo that was current on PWS at the time, but now we have a great one.
Today was just a strange day in a really good way. Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded. It was as if her body and her brain finally realized she could move and do so much more than just sit there. It took her almost a week to try and venture out of the area we did her therapy in all the time. At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther. To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room. Now it's thrilling to see her try and follow us from room to room. She still doesn't do it as much as I would like, but it's neat to know she wants to be with us.
Earlier this week, Amelia was playing dragon and roaring alot. Sunday, right after Mia roared, so did Livie - who was right next to her. It was so funny! She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again.
About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since. Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times. She doesn't really say mama a lot, but she has been able to say that one for a while. She also has tried to say "eat" but with no sound coming out. It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut. She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e". Try it and you will know what I am talking about. It's kind of funny that she mimics the movement but can't quite get sound to come out. All of these words are approximations, but they are in context and I will take it!
Our speech therapist is really an amazing woman. We have been so blessed with our therapists. She has so much knowledge and explains so much to us. Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences. It's neat to see Olivia starting this process. It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are. I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech.
She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps. She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them. She bounces constantly and has been pulling herself to stand everywhere trying to reach things. She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old. She's WAY more inquisitive than I remember Amelia being at this stage. Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more.
Olivia also walked today with a toy walker! Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it. She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again. She was going from the therapist to myself and back again. She was exhausted after therapy was over and slept an hour longer than normal for her nap.
This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that. I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier. We just didn't have an endo that was current on PWS at the time, but now we have a great one.
Monday, February 14, 2011
Top Ten Good Things About Prader Willi Syndrome Babies
1) When she was first born and didn't make any sound and slept anytime she wasn't being stimulated, it was easy to take a nap. Theoretically. If it wasn't for the enteral pump, bottle feeding for therapy, breast pumping, PT/OT/ST, eating and taking a shower once a week, I would have definitely been able to sleep.
2) I could take her with me anywhere. She never cried, moved or made a noise. People who didn't know me told me I was a great mom with an amazing baby and I just smiled and said, "YES, I AM". Let them envy. I have plenty of my own for their baby's healthy screams.
3) She could fall asleep anytime, anywhere. I never worried about not scheduling therapy during her naptimes, because she fell asleep anytime she wasn't being stimulated. I figured she got enough sleep, get her up and get her to work. The more therapy, the merrier.
4) She was very snuggly. She never tried to wriggle out of my arms.
5) She would let anyone hold her without crying. So I told everyone, "See, she really likes you!!" All she cared was that she had physical contact with someone. Although to be honest, she has always shown a clear preference for men. Hussy.
6) She has a high pain tolerance. So when I dropped her on her head, she only cried for about 5 seconds.
Kidding. She cried for 10. OH, still kidding... I didn't drop her on her head. Chill. I have accidentally poked or prodded her in the process of changing a diaper or moving her around while trying to wrestle a 4 year old at the same time - you moms know what I am talking about - and with no real reaction.
7) She'll eat anything now that she's on baby food. So I feel like a great mom, feeding her a wide variety of fruits, vegetables and meats with no protest. She only "kind of" spits out things by smooshing it out her mouth, but it's mostly bland food. She has a good palate at an early age. She loves mommy's cooking. She is the only one in the family who doesn't complain when I make collard greens.
8) Since she was failure to thrive, we're on Neosure now that my year of pumping milk is over with and it's paid for by insurance. Regular milk is expensive. Thanks, Tricare.
9) I never had to get up in the middle of the night every 2 hours. It was more like every few minutes to listen to her breathe, check her temperature to make sure her body was holding temp and reposition her head and body so she wasn't too floppy. I learned to sleep with one ear open until she stabilized at home. I never woke up to screaming cries, but the sound of the alarm on the enteral pump going off to tell me it was time to pump milk and feed her again.
Wait, wasn't that supposed to be a good thing? Oh well. Fail for #9.
10) When she finally smiled at me almost a year after she was born, I knew it wasn't gas. She was smiling AT ME, and I EARNED THAT SMILE!
2) I could take her with me anywhere. She never cried, moved or made a noise. People who didn't know me told me I was a great mom with an amazing baby and I just smiled and said, "YES, I AM". Let them envy. I have plenty of my own for their baby's healthy screams.
3) She could fall asleep anytime, anywhere. I never worried about not scheduling therapy during her naptimes, because she fell asleep anytime she wasn't being stimulated. I figured she got enough sleep, get her up and get her to work. The more therapy, the merrier.
4) She was very snuggly. She never tried to wriggle out of my arms.
5) She would let anyone hold her without crying. So I told everyone, "See, she really likes you!!" All she cared was that she had physical contact with someone. Although to be honest, she has always shown a clear preference for men. Hussy.
6) She has a high pain tolerance. So when I dropped her on her head, she only cried for about 5 seconds.
Kidding. She cried for 10. OH, still kidding... I didn't drop her on her head. Chill. I have accidentally poked or prodded her in the process of changing a diaper or moving her around while trying to wrestle a 4 year old at the same time - you moms know what I am talking about - and with no real reaction.
7) She'll eat anything now that she's on baby food. So I feel like a great mom, feeding her a wide variety of fruits, vegetables and meats with no protest. She only "kind of" spits out things by smooshing it out her mouth, but it's mostly bland food. She has a good palate at an early age. She loves mommy's cooking. She is the only one in the family who doesn't complain when I make collard greens.
8) Since she was failure to thrive, we're on Neosure now that my year of pumping milk is over with and it's paid for by insurance. Regular milk is expensive. Thanks, Tricare.
9) I never had to get up in the middle of the night every 2 hours. It was more like every few minutes to listen to her breathe, check her temperature to make sure her body was holding temp and reposition her head and body so she wasn't too floppy. I learned to sleep with one ear open until she stabilized at home. I never woke up to screaming cries, but the sound of the alarm on the enteral pump going off to tell me it was time to pump milk and feed her again.
Wait, wasn't that supposed to be a good thing? Oh well. Fail for #9.
10) When she finally smiled at me almost a year after she was born, I knew it wasn't gas. She was smiling AT ME, and I EARNED THAT SMILE!
A valentine heard around the world...
Happy Valentine's Day from Beaufort, South Carolina to somewhere in Afghanistan.
I'm seeing boats on the water and Spanish moss blowing in the wind; and you are seeing snow capped mountains.
I see our children dressed up in princess outfits, giggling and laughing; you see sweaty men in military uniforms.
I see our girls food smeared faces smiling up at me; you see the dirt stained faces of the Afghan children.
Someday soon, we'll see the same things at the same time. Until then, know you are loved and missed by your girls.
I'm seeing boats on the water and Spanish moss blowing in the wind; and you are seeing snow capped mountains.
I see our children dressed up in princess outfits, giggling and laughing; you see sweaty men in military uniforms.
I see our girls food smeared faces smiling up at me; you see the dirt stained faces of the Afghan children.
Someday soon, we'll see the same things at the same time. Until then, know you are loved and missed by your girls.
Valentine's Day Dinner
Shrimp Cocktail
Salad with onion vinaigrette
Garlic Roasted Pork Butt
Rosemary Potatoes
Collard Greens with Onion and Bacon
Green Beans (for mom)
Macaroni and Cheese (for Amelia)
Fresh Pineapple
Tiramisu
Wine
Almost everything but the tiramisu, wine and pineapple were bought on sale.
Salad with onion vinaigrette
Garlic Roasted Pork Butt
Rosemary Potatoes
Collard Greens with Onion and Bacon
Green Beans (for mom)
Macaroni and Cheese (for Amelia)
Fresh Pineapple
Tiramisu
Wine
Almost everything but the tiramisu, wine and pineapple were bought on sale.
Spell Check
This post is for you, Barbara!
Surprise.
Exercise.
Definitely.
I never use spell check (which is obvious to my friend Barbara who often sends me emails with one word in them... correctly spelled). Most of the time it's a genuine typing error because I know how to spell very well; but there are three words that I always have to think twice about and most of the time I still get it wrong. I am clueless as to why I can't remember such simple words.
So Barb, I typed very slowly tonight. Just for you. ;)
Surprise.
Exercise.
Definitely.
I never use spell check (which is obvious to my friend Barbara who often sends me emails with one word in them... correctly spelled). Most of the time it's a genuine typing error because I know how to spell very well; but there are three words that I always have to think twice about and most of the time I still get it wrong. I am clueless as to why I can't remember such simple words.
So Barb, I typed very slowly tonight. Just for you. ;)
Valentine's Day Box
Last year Amelia had her first Valentine's Day at school, but I barely pulled it together in time. If not for a dear friend of mine (thank you Lori W), I would not have even had valentines for her to take to school. It was completely off my radar screen because of all the work Olivia was taking at the time.
This year, we received a notice early to have shoe boxes and valentines ready for tomorrow. So my uncrafty self came up with a fun craft that Amelia and I could do together. It's stolen and modified from a more complicated craft online, but I love how it turned out. It literally cost me nothing, as I already had the supplies.
The best part of it is the fun we have had making this together. We worked on it a little bit each day, and she was always so excited to do her part. She was able to do most of it herself, with just a small amount of input from me. She can hardly wait to go to school tomorrow and show off her work. Not only that, but she had a few design suggestions that were better than mine. Seriously, I am very lame in the decorating department. Bested by a 4 year old.
Yesterday while finishing up, she was also rocking a pink fairy costume with pink/orange argyle leggings and black boots; she'd asked me to pin her hair up into "princess hair" and then she got dressed. She definitely has some style.
Here is what we did: (I took pictures, but on a video camera that I don't know how to download from)
1) Covered a shoe box in scrapbook paper. I cut the pieces to fit, she put glue on the box and put the paper on.
2) She stamped the inside lid of the box with all kinds of her little stamps - flowers, birds, hearts, etc
3) She wrote her name on a piece of scrapbook paper and that was glued to the side of the box.
4) I took another, complementary vintage pinkish design scrapbook paper, drew 6 rectangles on them and let her cut along the lines using the scrapbooking scissors with the wavy lines that make pretty edges. I didnt' care if it was perfect, she cut pretty well but it still looked hand made. Nice.
5) Then I picked out purple, pink, red, blue crayons and gave her a pencil sharpener to shave crayons with into small bowls.
6) I tore off two sheets of waxed paper and laid one sheet on top of a paper sack on an ironing board. The paper sack is essential if you don't want to buy another fabric cover for your ironing board. I had also lowered the ironing board to its lowest height.
7) She sprinkled the different colors around the wax paper. One thing I would do differently if I did a project like this again is to have her leave a bit more room between the colors. They spread pretty well once they melted.
8) I put the second piece of wax paper on top and then let her iron, with my hand on top of hers on the iron. She pretty much directed the iron; I just wanted to make sure I had it just in case. The wax melted instantly.
9) While the crayons were cooling, she wrote her name on the back of all the cards.
10) Once cool, and while she was still writing, I took the fancy scrapbooking scissors and cut out hearts free form.
11) She worked over a paper bag; put glue on the hearts and put them in the middle of the scrapbook paper on the pretty design. Originally I wanted her to put the hearts on the white part of the paper, the back of it by her name. I thought the hearts would show up better. Shows how much design sense I have. She didn't like that idea, hence the change.
12) She saw some purple ribbons and wanted that, so she picked out two types of ribbon and I cut them and made little bows by just wrapping the skinny one around the middle of the bigger one and tying it in a knot. She glued those onto the cards.
All this took about 4-5 days, working a little bit each day on it to accomodate the attention span of a 4 year old. It was a peaceful, fun project to do together. I can hardly wait to see her excitement again in the morning as she takes them to school.
This year, we received a notice early to have shoe boxes and valentines ready for tomorrow. So my uncrafty self came up with a fun craft that Amelia and I could do together. It's stolen and modified from a more complicated craft online, but I love how it turned out. It literally cost me nothing, as I already had the supplies.
The best part of it is the fun we have had making this together. We worked on it a little bit each day, and she was always so excited to do her part. She was able to do most of it herself, with just a small amount of input from me. She can hardly wait to go to school tomorrow and show off her work. Not only that, but she had a few design suggestions that were better than mine. Seriously, I am very lame in the decorating department. Bested by a 4 year old.
Yesterday while finishing up, she was also rocking a pink fairy costume with pink/orange argyle leggings and black boots; she'd asked me to pin her hair up into "princess hair" and then she got dressed. She definitely has some style.
Here is what we did: (I took pictures, but on a video camera that I don't know how to download from)
1) Covered a shoe box in scrapbook paper. I cut the pieces to fit, she put glue on the box and put the paper on.
2) She stamped the inside lid of the box with all kinds of her little stamps - flowers, birds, hearts, etc
3) She wrote her name on a piece of scrapbook paper and that was glued to the side of the box.
4) I took another, complementary vintage pinkish design scrapbook paper, drew 6 rectangles on them and let her cut along the lines using the scrapbooking scissors with the wavy lines that make pretty edges. I didnt' care if it was perfect, she cut pretty well but it still looked hand made. Nice.
5) Then I picked out purple, pink, red, blue crayons and gave her a pencil sharpener to shave crayons with into small bowls.
6) I tore off two sheets of waxed paper and laid one sheet on top of a paper sack on an ironing board. The paper sack is essential if you don't want to buy another fabric cover for your ironing board. I had also lowered the ironing board to its lowest height.
7) She sprinkled the different colors around the wax paper. One thing I would do differently if I did a project like this again is to have her leave a bit more room between the colors. They spread pretty well once they melted.
8) I put the second piece of wax paper on top and then let her iron, with my hand on top of hers on the iron. She pretty much directed the iron; I just wanted to make sure I had it just in case. The wax melted instantly.
9) While the crayons were cooling, she wrote her name on the back of all the cards.
10) Once cool, and while she was still writing, I took the fancy scrapbooking scissors and cut out hearts free form.
11) She worked over a paper bag; put glue on the hearts and put them in the middle of the scrapbook paper on the pretty design. Originally I wanted her to put the hearts on the white part of the paper, the back of it by her name. I thought the hearts would show up better. Shows how much design sense I have. She didn't like that idea, hence the change.
12) She saw some purple ribbons and wanted that, so she picked out two types of ribbon and I cut them and made little bows by just wrapping the skinny one around the middle of the bigger one and tying it in a knot. She glued those onto the cards.
All this took about 4-5 days, working a little bit each day on it to accomodate the attention span of a 4 year old. It was a peaceful, fun project to do together. I can hardly wait to see her excitement again in the morning as she takes them to school.
Unexpected Prayers
At night, snuggled together in the covers, Amelia and I say prayers together. I would say the Lord's Prayer every night while she listened, and then one day out of the blue, she repeated the whole thing with me. There is something magical about listening to a child pray. We're nestled together, her cheek pressed to mine and I hear her sweet voice.
Every night, I pray outloud. I want Amelia to know that I come to God for help, for praise, for thanks. Every night she listens. Every once in a while, she wants to pray outloud. Mostly she likes to pray in her mind, she says. She's quiet for a minute, then tells me she's done. Occasionally she will tell me she wants to say the same prayer again outloud. She'll tell God thank you for friends, family, toys... ask him to watch out for Olivia and Daddy, often talk about relatives.
Lately, I've been asking God to help me become a better mommy, to learn all I can about the intricacies of my children, along with the other things I pray about. What I meant for it to be was an example of how we can go to God in all things and to be an example in asking for self discipline (which she surely needs right now).
What it turned out to be was far different. Last night, she prayed "in her mind" and then wanted to share with me the prayer outloud. It was tender and sweet, right up to the point where she prayed "for mommy to be a better person". I know she was repeating what she'd heard me pray, but I couldn't stop my reaction. I said, "I AM a good person!!" She immediately got the giggles and I knew I'd made a monumental mistake. The kind your kids don't forget. It had my attention, so she was going to repeat it over and over. She did, last night. In the car today on the way home from church. Again tonight. "Dear God... please help mommy be a better person". What kid prays for that? Seriously, it makes me feel like she's praying for a better mommy.
I just hope she doesn't start telling people she prays for her mommy to be a better person. I know she's messing with me. It's working.
Every night, I pray outloud. I want Amelia to know that I come to God for help, for praise, for thanks. Every night she listens. Every once in a while, she wants to pray outloud. Mostly she likes to pray in her mind, she says. She's quiet for a minute, then tells me she's done. Occasionally she will tell me she wants to say the same prayer again outloud. She'll tell God thank you for friends, family, toys... ask him to watch out for Olivia and Daddy, often talk about relatives.
Lately, I've been asking God to help me become a better mommy, to learn all I can about the intricacies of my children, along with the other things I pray about. What I meant for it to be was an example of how we can go to God in all things and to be an example in asking for self discipline (which she surely needs right now).
What it turned out to be was far different. Last night, she prayed "in her mind" and then wanted to share with me the prayer outloud. It was tender and sweet, right up to the point where she prayed "for mommy to be a better person". I know she was repeating what she'd heard me pray, but I couldn't stop my reaction. I said, "I AM a good person!!" She immediately got the giggles and I knew I'd made a monumental mistake. The kind your kids don't forget. It had my attention, so she was going to repeat it over and over. She did, last night. In the car today on the way home from church. Again tonight. "Dear God... please help mommy be a better person". What kid prays for that? Seriously, it makes me feel like she's praying for a better mommy.
I just hope she doesn't start telling people she prays for her mommy to be a better person. I know she's messing with me. It's working.
Saturday, February 12, 2011
Chicken Pox
Olivia has chicken pox and a fever of 100.4 earlier today. The chicken pox is very mild and this version apparently an attenuated virus, which is good. I'm thrilled at several things...
She isn't too fussy, just tired. Doesn't feel uncomfortable - because she has a reduced sensitivity to pain, I don't think she really notices anything itchy.
She's very snuggly and keeps reaching for my pants leg to be picked up. :)))))))))
She had a fever. A normal fever. I wonder what this means for us... it's not typical that PWS children have fevers and the doc said a low fever was typical for this type of chicken pox. It's actually great news that she had a fever in my mind. I don't know enough about it to know otherwise, but it feels like it's a good thing.
I was supposed to make a meal for Family Promise tonight and be a dinner host... couldn't because we're not supposed to be around kids for 48 hours. I made the meal and dropped it off, went home to do some work and then went back to pick up my containers two hours later. I should be sleeping right now.
She isn't too fussy, just tired. Doesn't feel uncomfortable - because she has a reduced sensitivity to pain, I don't think she really notices anything itchy.
She's very snuggly and keeps reaching for my pants leg to be picked up. :)))))))))
She had a fever. A normal fever. I wonder what this means for us... it's not typical that PWS children have fevers and the doc said a low fever was typical for this type of chicken pox. It's actually great news that she had a fever in my mind. I don't know enough about it to know otherwise, but it feels like it's a good thing.
I was supposed to make a meal for Family Promise tonight and be a dinner host... couldn't because we're not supposed to be around kids for 48 hours. I made the meal and dropped it off, went home to do some work and then went back to pick up my containers two hours later. I should be sleeping right now.
Exhausted
It's been an extremely busy month. Every day I want to sit and write about what we've been doing but all I do is surf and let my brain veg when I finally get a chance to sit down.
Last Friday Mom and I drove the girls to Roanoke, Virginia to see my niece in a play at Hollins University. What was a 7 hour drive ended up taking us 2 days. My brand new van broke down right outside of Charlotte, NC. Thank goodness for the wonderful people at Hendrick Honda... although it was after hours (7 pm) and the service department was closed, they found a mechanic to drive out to where we were and check out the van. We definatelly needed a tow according to him.
Mom waited for the van to get towed almost 4 hours... the first tow truck driver threw the keys at her when she asked him why he was taking the plastic covering off the extra key. Crazy! The mechanic drove myself, Olivia and Amelia back to the dealer in a loaner van, where we dropped him off and found a place to stay for the night. I checked in, dropped our stuff off and tried to get the girls to go to sleep. They finally fell asleep a little after midnight, just in time to get 15 minutes of rest before I had to wake them up to go get mom. Poor Amelia... she was as floppy as Olivia when she was a baby. I could NOT get her to wake up and ended up carrying a 4 year old in one arm and a 17 month old in a baby carrier in the other arm down to the first floor and out the door. I dropped their blankies in the freezing rain and generally had a rough time.
We finally got the girls back into bed after picking up mom; and they worked on our car first the next day. When they realized they couldn't fix it quickly, they gave us another vehicle, this time a rental, and had us go on our merry way. We booked it to Hollins and made it just in time to see the last 30-45 minutes of Katie's play. She has no idea how hard we worked every angle to get there on time. It was great to see her.
Finally home late Sunday night. What was supposed to be a quick trip turned out to be one of the longest and hardest short trips I've ever taken.
Thank goodness Olivia has Prader Willi Syndrome. She was calm and quiet the whole time :) I guess there's something to be said for a baby who doesn't ever really get fussy. I hear she will make up for it later, but I am enjoying the flexibility for now.
The bad part of the trip is that it was so exhausting, somehow I misplaced my camera or it fell somewhere and I didn't notice it. I'm missing a disk that was stored in there with some priceless pics of Amelia as a baby. Don't ask me why I was dumb enough to put them in the storage part of the camera case. I'm hoping that I find it somehow.
Last Friday Mom and I drove the girls to Roanoke, Virginia to see my niece in a play at Hollins University. What was a 7 hour drive ended up taking us 2 days. My brand new van broke down right outside of Charlotte, NC. Thank goodness for the wonderful people at Hendrick Honda... although it was after hours (7 pm) and the service department was closed, they found a mechanic to drive out to where we were and check out the van. We definatelly needed a tow according to him.
Mom waited for the van to get towed almost 4 hours... the first tow truck driver threw the keys at her when she asked him why he was taking the plastic covering off the extra key. Crazy! The mechanic drove myself, Olivia and Amelia back to the dealer in a loaner van, where we dropped him off and found a place to stay for the night. I checked in, dropped our stuff off and tried to get the girls to go to sleep. They finally fell asleep a little after midnight, just in time to get 15 minutes of rest before I had to wake them up to go get mom. Poor Amelia... she was as floppy as Olivia when she was a baby. I could NOT get her to wake up and ended up carrying a 4 year old in one arm and a 17 month old in a baby carrier in the other arm down to the first floor and out the door. I dropped their blankies in the freezing rain and generally had a rough time.
We finally got the girls back into bed after picking up mom; and they worked on our car first the next day. When they realized they couldn't fix it quickly, they gave us another vehicle, this time a rental, and had us go on our merry way. We booked it to Hollins and made it just in time to see the last 30-45 minutes of Katie's play. She has no idea how hard we worked every angle to get there on time. It was great to see her.
Finally home late Sunday night. What was supposed to be a quick trip turned out to be one of the longest and hardest short trips I've ever taken.
Thank goodness Olivia has Prader Willi Syndrome. She was calm and quiet the whole time :) I guess there's something to be said for a baby who doesn't ever really get fussy. I hear she will make up for it later, but I am enjoying the flexibility for now.
The bad part of the trip is that it was so exhausting, somehow I misplaced my camera or it fell somewhere and I didn't notice it. I'm missing a disk that was stored in there with some priceless pics of Amelia as a baby. Don't ask me why I was dumb enough to put them in the storage part of the camera case. I'm hoping that I find it somehow.
Wednesday, January 26, 2011
Rising Kindergartener
Amelia goes to a Montessori school where she's in a class with 3-6 year olds. At any given time in class, there are children quietly working away on math, art, history, geography, napping, reading, eating snack. They work on an individual rug that is about the size of your standard outside door mat. After they finish each work, they take it back to the shelf they picked it out from and go get another work to set on their mats. They stay away from each other's mats, or work together on a project. It's all very quiet and very productive.
There are "works" available for each stage of development, and the children choose what they work on. Amelia has been fascinated with being one of the kindergarteners since she saw them graduate on stage last year. In her class, she can actually do kinder work if she chooses it.
Tonight they had a meeting for parents of rising kindergarteners for questions, and I found out that while she could choose the work now, she hasn't been. She has stuck with the work that is the precurser for the more advanced work. When I asked her why she hasn't tried something new, she told me that it was for the kindergarteners, not her! I had no idea that she got that idea in her head.
So on the way home tonight, I told her the meeting was to tell us that she could now do all the kindergartener's work and you would have thought I handed her the best present ever. She was so excited and wanted to turn around and go back to school to do her work. At home, she was jumping around and telling Grandma all about being able to do that more advanced work now. I'm excited to see what happens with her. I can't believe she was holding herself back!
On another (food related) note... I made a griddled sandwich for dinner tonight using Rudi's Rosemary bread. Sliced a bunch of brisket I had made and frozen in chunks a while back, layered it on the sandwich with some horseradish cheddar and horseradish sauce and griddled the whole thing. It was so good! I had some Frogmore Stew for lunch. All of this is still eating out of my freezer and pantry. I have a long way to go to empty out all of it.
There are "works" available for each stage of development, and the children choose what they work on. Amelia has been fascinated with being one of the kindergarteners since she saw them graduate on stage last year. In her class, she can actually do kinder work if she chooses it.
Tonight they had a meeting for parents of rising kindergarteners for questions, and I found out that while she could choose the work now, she hasn't been. She has stuck with the work that is the precurser for the more advanced work. When I asked her why she hasn't tried something new, she told me that it was for the kindergarteners, not her! I had no idea that she got that idea in her head.
So on the way home tonight, I told her the meeting was to tell us that she could now do all the kindergartener's work and you would have thought I handed her the best present ever. She was so excited and wanted to turn around and go back to school to do her work. At home, she was jumping around and telling Grandma all about being able to do that more advanced work now. I'm excited to see what happens with her. I can't believe she was holding herself back!
On another (food related) note... I made a griddled sandwich for dinner tonight using Rudi's Rosemary bread. Sliced a bunch of brisket I had made and frozen in chunks a while back, layered it on the sandwich with some horseradish cheddar and horseradish sauce and griddled the whole thing. It was so good! I had some Frogmore Stew for lunch. All of this is still eating out of my freezer and pantry. I have a long way to go to empty out all of it.
Monday, January 24, 2011
Before and After
The house smells so good every time I walk into it today - garlic, onions, bacon - too bad none of it was for us! I often volunteer to cook meals for people who need them. I'm on a committee at our church and also for the base I live on to deliver fresh, hot meals. When our church does Family Promise, I volunteer for a shift and cook for them also. I'm often making a bit extra and handing it out to whomever is stopping by that day - Sunday when I made corn chowder, we invited a friend of Mia's over to play and they stayed for dinner. Sometimes its my friends, and sometimes it's the excellent therapists that end up walking away with a bite or two of some goodie.
Today I made a meal for a beautiful woman who has cared for Amelia and other children during church services. I really wanted to be able to give back to her during a time of need. I made sweet cornbread, collard greens, and more beans and sausage to drop off. I never thought I would like collard greens. I've had them a time or two and they just seemed so bland to me. But it turns out with enough bacon and onions, along with a touch of garlic, anything tastes scrumptious. I sweat those items first, then jammed the greens into the pot on top. Sprinkle kosher salt, cracked pepper, and sugar and put the lid on to let them cook away. I think most people add a bit of stock but the lid was heavy and they had their own liquid. They probably would have tasted good with a bit of heat and some acid - like maybe some cayenne or red pepper flakes, very subtle; or garnished afterwards with a shake or two of tabasco and/or vinegar.
I also cooked up some pears for Olivia and hummus for home group (bible studies in someone's home). I made another dip for home group tonight out of stuff hanging out in my fridge. 2 blocks of cream cheese, big handful of sun dried tomatoes, a jar of feta in oil (minus the oil), 2 garlic cloves, a tiny glad container (about 1/4 cup) of pureed basil from my garden a while ago, 4-5 black olives that were left over from a salad the other night. It turned out great. I think it would also make a great stuffing for chicken; or with some roasted red peppers and fresh spinach spread on a hot crepe and folded for a "crepe sandwich" would be YUM.
Every time I cook now, I think of Olivia. Every.Single.Time. It's an awareness I wish I didn't have; sort of like the first time you found out there wasn't Santa Claus. I think to myself... Does this have too many carbs? How many calories are in this dish? How can I keep the flavor and lose the calories?
Will this be the last time I cook this?
No, actually it feels more like the way the world changed September 11, 2001.
The world no longer felt as safe, happy and innocent as it had just seconds before, with the sick feeling that nothing would ever be the same again. It's how my world changed when we got the PWS diagnosis.
Today I made a meal for a beautiful woman who has cared for Amelia and other children during church services. I really wanted to be able to give back to her during a time of need. I made sweet cornbread, collard greens, and more beans and sausage to drop off. I never thought I would like collard greens. I've had them a time or two and they just seemed so bland to me. But it turns out with enough bacon and onions, along with a touch of garlic, anything tastes scrumptious. I sweat those items first, then jammed the greens into the pot on top. Sprinkle kosher salt, cracked pepper, and sugar and put the lid on to let them cook away. I think most people add a bit of stock but the lid was heavy and they had their own liquid. They probably would have tasted good with a bit of heat and some acid - like maybe some cayenne or red pepper flakes, very subtle; or garnished afterwards with a shake or two of tabasco and/or vinegar.
I also cooked up some pears for Olivia and hummus for home group (bible studies in someone's home). I made another dip for home group tonight out of stuff hanging out in my fridge. 2 blocks of cream cheese, big handful of sun dried tomatoes, a jar of feta in oil (minus the oil), 2 garlic cloves, a tiny glad container (about 1/4 cup) of pureed basil from my garden a while ago, 4-5 black olives that were left over from a salad the other night. It turned out great. I think it would also make a great stuffing for chicken; or with some roasted red peppers and fresh spinach spread on a hot crepe and folded for a "crepe sandwich" would be YUM.
Every time I cook now, I think of Olivia. Every.Single.Time. It's an awareness I wish I didn't have; sort of like the first time you found out there wasn't Santa Claus. I think to myself... Does this have too many carbs? How many calories are in this dish? How can I keep the flavor and lose the calories?
Will this be the last time I cook this?
No, actually it feels more like the way the world changed September 11, 2001.
The world no longer felt as safe, happy and innocent as it had just seconds before, with the sick feeling that nothing would ever be the same again. It's how my world changed when we got the PWS diagnosis.
Movies on a Military Base
Yesterday I took Amelia to see Yogi Bear at the Parris Island base theater. We usually get movies here about a month or two after they come out in town - they play here on Friday and Sunday and at MCAS Thursday and Saturday. Movies change each showing, so on Sunday it was 3 different movies starting at 2:00 pm.
It's very inexpensive to see a movie here, so I don't mind waiting a month...
$2.00 - movie ticket
$2.50 - small popcorn, small drink, regular size candy of your choice
$ .25 - refills on soda
We ran into a bunch of our neighbors there (the theater is about 2 blocks away from housing) and Amelia found a little friend to sit and giggle with throughout the movie. At the start of the movie, the National Anthem plays, and everyone stands up, faces the screen and is silent until it's over with. This is actually one of my favorite parts. Anyone who is active duty, in uniform or not, will stand at attention with their backs rigid, heads straight forward, arms at their sides with their hands in position. When it's over, everyone sits down and continues on.
When was the last time you heard the Pledge of Allegience or the National Anthem outside of a football game?
It's very inexpensive to see a movie here, so I don't mind waiting a month...
$2.00 - movie ticket
$2.50 - small popcorn, small drink, regular size candy of your choice
$ .25 - refills on soda
We ran into a bunch of our neighbors there (the theater is about 2 blocks away from housing) and Amelia found a little friend to sit and giggle with throughout the movie. At the start of the movie, the National Anthem plays, and everyone stands up, faces the screen and is silent until it's over with. This is actually one of my favorite parts. Anyone who is active duty, in uniform or not, will stand at attention with their backs rigid, heads straight forward, arms at their sides with their hands in position. When it's over, everyone sits down and continues on.
When was the last time you heard the Pledge of Allegience or the National Anthem outside of a football game?
Photos soon!
My camera charger found its way back home :) I left it in KC on our Thanksgiving.
I think I am going to try and eat as much stuff from my pantry and freezer as I can without buying anything else. I just bought milk and cream cheese this week - on sale for .99, and with 30 cents off coupons I couldn't pass it up. I really want to buy some to freeze but that would ruin my whole point in eating up the stuff I have.
Tonight I made corn chowder - chopped up about 4-5 stalks celery, two onions. Threw them in a heavy pot (used Le Creuset tonight) with some butter and thyme and let them sweat for a while till they were bright and crunchy and delicious smelling. Then I tossed in a big cooking spoonful of flour, stirred it around and cooked for a while to get the raw flour taste out. When that was done, I poured in a bunch of white wine from my handy dandy box o' wine with the pour spout, stirred around and cooked out the sharp wine taste. Finished it up with 7 small cans of corn, juice and all; a box of turkey stock (I didn't have that much chicken stock); and what was left of my pint of cream. I think it was about half a cup. Stir well, simmer for a while, season with salt and pepper to taste, puree half and pour back in. TaDa! Soup for the masses. I'm going to freeze the extra. All in all it ended up being about a gallon of soup.
I think I am going to try and eat as much stuff from my pantry and freezer as I can without buying anything else. I just bought milk and cream cheese this week - on sale for .99, and with 30 cents off coupons I couldn't pass it up. I really want to buy some to freeze but that would ruin my whole point in eating up the stuff I have.
Tonight I made corn chowder - chopped up about 4-5 stalks celery, two onions. Threw them in a heavy pot (used Le Creuset tonight) with some butter and thyme and let them sweat for a while till they were bright and crunchy and delicious smelling. Then I tossed in a big cooking spoonful of flour, stirred it around and cooked for a while to get the raw flour taste out. When that was done, I poured in a bunch of white wine from my handy dandy box o' wine with the pour spout, stirred around and cooked out the sharp wine taste. Finished it up with 7 small cans of corn, juice and all; a box of turkey stock (I didn't have that much chicken stock); and what was left of my pint of cream. I think it was about half a cup. Stir well, simmer for a while, season with salt and pepper to taste, puree half and pour back in. TaDa! Soup for the masses. I'm going to freeze the extra. All in all it ended up being about a gallon of soup.
Saturday, January 22, 2011
Wholesome Baby Food
Wholesome Baby Food is a great site I stumbled across today. Wish I had found it years ago. You'd think, being a former Chef, I would have tried harder. Still having teeny mommy guilt about that. But honestly, it's more like mommy annoyance because I want her to eat more of what we are eating.
Fun with Food
Well, I might as well have fun with food while I still can.
Yesterday I made Tuscan Beans and Sausage (white beans, garlic, onion, celery, carrot, sausage, seasonings) and some sweet cornbread. I went all out and spread the cornbread with melted honey and butter mixed together. Delish! Olivia loved the beans and sausage, I didn't give her the cornbread. My mom mashed it all up for her.
This morning I was thinking perhaps she loved it TOO much. Diapers were a big change. :(
Yesterday I made Tuscan Beans and Sausage (white beans, garlic, onion, celery, carrot, sausage, seasonings) and some sweet cornbread. I went all out and spread the cornbread with melted honey and butter mixed together. Delish! Olivia loved the beans and sausage, I didn't give her the cornbread. My mom mashed it all up for her.
This morning I was thinking perhaps she loved it TOO much. Diapers were a big change. :(
A few new communication breakthroughs...
We've spent months trying to teach Olivia to do things that most babies learn pretty early. While the specific process is slightly different for each "thing" we try to teach her, it basically involves us (my mother currently, my father when he was taking his turn here, the four therapists, myself) physically moving her body to do the "thing" over and over again; all the while doing the "thing" ourselves.
If anyone has a better word for me right now than "thing" please comment. It's 2am and I'm tired and literally at a loss for some words.
Months = Since she's been born. Since before she could actually move any part of her body on her own.
We = we, the team of people- my fabulous therapists, doctors and family
Besides the obvious physical skills, we've also been working on social movements - waving hello, goodbye, giving kisses. Over and over again, kiss the dolly. Kiss, kiss, kiss. We say the word, make the motion, bring her dolly to her face. She's recently been bobbing her head toward the dolly for a kiss with her nose and sometimes with her mouth open. I keep telling her she's not allowed to kiss like that until she's married.
Back to the breakthroughs. Olivia has always had this connection with her daddy, even in the hospital when she wasn't too responsive to anyone else - but especially not me. She would respond a bit more, slight responses that you could barely detect at first, but more as time went on and she became stronger. Maybe it was just a blink, or a slight focusing of the eyes in his direction, or a twitch when he spoke. Rafe was the first person to make her smile (when the smile consisted of the tiniest of upturns of her mouth), the first to get her to laugh. She did those things very rarely, but when they did happen it was with him.
This past week, Rafe called from Afghanistan and had some time to talk/play with Livie on the phone - not so many people waiting in line to talk at that time. I put the phone on speaker and her whole face brightened up when she heard his voice. She got this huge smile on her face and was reaching for the phone. I assumed she just wanted to punch the buttons. He kept talking and I said, not expecting a response, "Livie, do you want to kiss daddy? Give daddy a kiss". Rafe was telling her he loved her, asking for a kiss and (most important) making kissing noises in the phone. She leaned forward, bobbed her nose on the phone and leaned back. I thought it was a fluke, but we kept on doing it. She did it 3 more times! Each time I told her to give daddy a kiss, and he made kissing noises, she would lean forward to the phone to "kiss" with her nose; she held out her hands and brought the phone to her face like she would with her doll and deliberately touched her face/nose to the phone. It all happened in slow motion because of her muscle issues, but it was amazing to see how purposeful she was.
And... the significance of her recognizing his voice 5 months after he left is not lost on me. Not just in a familial way, but in a cognitive, she's got brain function kind of way.
Not quite as exciting, but still cool, is that she waved goodbye to me today. It took a few minutes for her to process what she needed to do, but she finally did it in slow motion again.
She also recognized her speech therapist and her OT this week and got very excited when she saw them, stopping what she was doing and crawling toward them immediately (for the ST) and leaning toward the OT when she was in my arms. She actively seeks me when she is crawling around. She will crawl to the feet of someone and slowly "climb" her arms/hands up your pant leg to indicate she wants you to pick her up.
She's so stinkin' cute.
If anyone has a better word for me right now than "thing" please comment. It's 2am and I'm tired and literally at a loss for some words.
Months = Since she's been born. Since before she could actually move any part of her body on her own.
We = we, the team of people- my fabulous therapists, doctors and family
Besides the obvious physical skills, we've also been working on social movements - waving hello, goodbye, giving kisses. Over and over again, kiss the dolly. Kiss, kiss, kiss. We say the word, make the motion, bring her dolly to her face. She's recently been bobbing her head toward the dolly for a kiss with her nose and sometimes with her mouth open. I keep telling her she's not allowed to kiss like that until she's married.
Back to the breakthroughs. Olivia has always had this connection with her daddy, even in the hospital when she wasn't too responsive to anyone else - but especially not me. She would respond a bit more, slight responses that you could barely detect at first, but more as time went on and she became stronger. Maybe it was just a blink, or a slight focusing of the eyes in his direction, or a twitch when he spoke. Rafe was the first person to make her smile (when the smile consisted of the tiniest of upturns of her mouth), the first to get her to laugh. She did those things very rarely, but when they did happen it was with him.
This past week, Rafe called from Afghanistan and had some time to talk/play with Livie on the phone - not so many people waiting in line to talk at that time. I put the phone on speaker and her whole face brightened up when she heard his voice. She got this huge smile on her face and was reaching for the phone. I assumed she just wanted to punch the buttons. He kept talking and I said, not expecting a response, "Livie, do you want to kiss daddy? Give daddy a kiss". Rafe was telling her he loved her, asking for a kiss and (most important) making kissing noises in the phone. She leaned forward, bobbed her nose on the phone and leaned back. I thought it was a fluke, but we kept on doing it. She did it 3 more times! Each time I told her to give daddy a kiss, and he made kissing noises, she would lean forward to the phone to "kiss" with her nose; she held out her hands and brought the phone to her face like she would with her doll and deliberately touched her face/nose to the phone. It all happened in slow motion because of her muscle issues, but it was amazing to see how purposeful she was.
And... the significance of her recognizing his voice 5 months after he left is not lost on me. Not just in a familial way, but in a cognitive, she's got brain function kind of way.
Not quite as exciting, but still cool, is that she waved goodbye to me today. It took a few minutes for her to process what she needed to do, but she finally did it in slow motion again.
She also recognized her speech therapist and her OT this week and got very excited when she saw them, stopping what she was doing and crawling toward them immediately (for the ST) and leaning toward the OT when she was in my arms. She actively seeks me when she is crawling around. She will crawl to the feet of someone and slowly "climb" her arms/hands up your pant leg to indicate she wants you to pick her up.
She's so stinkin' cute.
Wednesday, January 19, 2011
More on the baby food...
Yesterday I made roasted carrots and parsnips, forgot the ginger, but Livie loves them today.
I also made a "loaded baked potato" - 2 heads cauliflower, 1 head broccoli and about 8 small baked potatoes mashed without the skins. Pureed the veggies and then mixed it all together with some (GASP) velveeta cheese. Hey, I'm all about using up what I have in the fridge. I should have used cheddar cheese but I didn't have any and didn't feel like running to the store. I didn't have time to put in ice cube trays last night, and this morning it was a bit stiff and very hard to spoon into the trays cold. I have a 21" pastry bag left over from my culinary days so I just put it all in the bag and piped it into the trays. It took less than a minute!
So today for lunch she had a cube of the potato mix, a cube of the carrots and parsnips, and some pureed blueberry applesauce. It seems sort of strange to me that my daughter who will eventually eat everything is getting a wider variety of foods to try than my first daughter, who is now quite picky about food. I knew better, I knew I should have exposed Mia to more stuff when she was a baby... oh well. The crazy thing is that Amelia likes soft shell crab, smoked salmon/capers/cream cheese bagels, and shrimp. The stuff she does like is expensive!
I also made a "loaded baked potato" - 2 heads cauliflower, 1 head broccoli and about 8 small baked potatoes mashed without the skins. Pureed the veggies and then mixed it all together with some (GASP) velveeta cheese. Hey, I'm all about using up what I have in the fridge. I should have used cheddar cheese but I didn't have any and didn't feel like running to the store. I didn't have time to put in ice cube trays last night, and this morning it was a bit stiff and very hard to spoon into the trays cold. I have a 21" pastry bag left over from my culinary days so I just put it all in the bag and piped it into the trays. It took less than a minute!
So today for lunch she had a cube of the potato mix, a cube of the carrots and parsnips, and some pureed blueberry applesauce. It seems sort of strange to me that my daughter who will eventually eat everything is getting a wider variety of foods to try than my first daughter, who is now quite picky about food. I knew better, I knew I should have exposed Mia to more stuff when she was a baby... oh well. The crazy thing is that Amelia likes soft shell crab, smoked salmon/capers/cream cheese bagels, and shrimp. The stuff she does like is expensive!
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