Merry Christmas from our family to yours! :)
Photo by Jennifer
Thank you Jennifer Auby Rosenblad we love our photo! <3
Thursday, December 15, 2011
Wednesday, December 7, 2011
words from a sister's heart
12/6/11
Raven is my middle daughter, she is best at what ever she stets her mind and heart to,... she said she will not go on to college when she graduates,... but she is taking all the college tests and I found one of her rough drafts for a college app- I wanted to share it, it is a personal statement and .... here it is.
"My life has been made up of every moment I have lived and every decision I, and those around me, have made. The most influential and poignant moment in my short seventeen years was the birth of my little sister, Jeweliana, or Jewel for short. Jewel was born three months early, and though I was only six years old when she was born, I knew my life-and the life of my family would never be the same.
Jewel was born with cerebral palsy, and ten years has passed since she was born, she still can not sit up,roll,walk, ore even hold her head up by herself. Having a sister with a disability is heartbreaking, but I wouldn't trade her or the experiences our family has had for the world. I learned at a young age that life isn't fair, but you have to keep going. Jeweliana has taught me compassion, strength, kindness, persistence, and most important of all, she has taught me gratitude. Gratitude for all the things I have done, and can do. Jewel taught me to be grateful that I can get up and stand on my own two feet every morning and dress myself, gratitude for being able to brush my own teeth, and hold a pen in my own hand; these small mundane things, which she can only dream of one day being able to do.
I am forever grateful that-amidst the trails and tribulations that come with having a sister so dependent- I can call Jewel my baby sister, my inspiration , my hero. My name is Raven, and I am not the captain of the cheerleading squad, I am not class president, I have never won a science fair, but I have helped raise a child. I have attended hundreds of speech, physical and occupational therapy sessions, and I have taught my sister, against all odds, how to speak. While I haven't been to to a homecoming, or gone away to summer camp, I have volunteered with children with disabilities every summer. I've gotten to watch Jewel make her very first friend and say her first sentence; I have watched her live and thrive, and being her sister has made me the person I am today."
Raven is my middle daughter, she is best at what ever she stets her mind and heart to,... she said she will not go on to college when she graduates,... but she is taking all the college tests and I found one of her rough drafts for a college app- I wanted to share it, it is a personal statement and .... here it is.
"My life has been made up of every moment I have lived and every decision I, and those around me, have made. The most influential and poignant moment in my short seventeen years was the birth of my little sister, Jeweliana, or Jewel for short. Jewel was born three months early, and though I was only six years old when she was born, I knew my life-and the life of my family would never be the same.
Jewel was born with cerebral palsy, and ten years has passed since she was born, she still can not sit up,roll,walk, ore even hold her head up by herself. Having a sister with a disability is heartbreaking, but I wouldn't trade her or the experiences our family has had for the world. I learned at a young age that life isn't fair, but you have to keep going. Jeweliana has taught me compassion, strength, kindness, persistence, and most important of all, she has taught me gratitude. Gratitude for all the things I have done, and can do. Jewel taught me to be grateful that I can get up and stand on my own two feet every morning and dress myself, gratitude for being able to brush my own teeth, and hold a pen in my own hand; these small mundane things, which she can only dream of one day being able to do.
I am forever grateful that-amidst the trails and tribulations that come with having a sister so dependent- I can call Jewel my baby sister, my inspiration , my hero. My name is Raven, and I am not the captain of the cheerleading squad, I am not class president, I have never won a science fair, but I have helped raise a child. I have attended hundreds of speech, physical and occupational therapy sessions, and I have taught my sister, against all odds, how to speak. While I haven't been to to a homecoming, or gone away to summer camp, I have volunteered with children with disabilities every summer. I've gotten to watch Jewel make her very first friend and say her first sentence; I have watched her live and thrive, and being her sister has made me the person I am today."
Friday, December 2, 2011
aids / help/ nurses aid
12/2/11 Friday
We got our Christmas tree on Thursday.
Jewel and her sisters picked it out.
They are all happy :)
It is in the living room and it smells so good.
We will decorate soon.
It has been a mixed plate day;
Our O/T that used to work with Jewel is visiting the Islands.
It is so good to see her, we miss her so much!
We love you Crystal <3
Today we interviewed an aid who would come into our home to help out with Jewel.
The insurance company set this up.
It was very disappointing.
The candidate, had six months of schooling with first aid and CPR.
She has not worked long in this field.
She works with the elderly and has never worked with pediatrics.
She has never worked with children with cerebral palsy.
I was shocked.
Though the lady was nice, there is no way she could be of a help with no education or experience.
Each member of our family has been daily training over the past 10 1/2 years to be of help to Jewel.
We work with her day in and out.
We are all first aid and CPR -infant/child certified and some have adult certification as well.
We all have been to almost every therapy session, so we can learn and be of better help to Jewel.
How can the insurance think that someone with out specialized training come in and help with our daughter? How can a six month general nurses aid program equip some one to be a care giver to a child with is immobile with cerebral palsy with many other labels?!
The risk is high for aspiration during feeding and water for some one without training.
The risk to hurt Jewels hips is high with out the proper experience, education, understanding, and training.
The stakes are too high.
We have kept vigil over Jewel, keeping her safe, healthy and happy.
Good intentions are not enough.
One bad aspiration leads to infection leads to hospitalization .... not worth the risk!
We want to keep Jewel healthy, happy and medication / hospital free!
I am sorry if I sound ungrateful, it seemed like such a positive possibility for her and us but the gift was not satisfactory.
We got our Christmas tree on Thursday.
Jewel and her sisters picked it out.
They are all happy :)
It is in the living room and it smells so good.
We will decorate soon.
It has been a mixed plate day;
Our O/T that used to work with Jewel is visiting the Islands.
It is so good to see her, we miss her so much!
We love you Crystal <3
Today we interviewed an aid who would come into our home to help out with Jewel.
The insurance company set this up.
It was very disappointing.
The candidate, had six months of schooling with first aid and CPR.
She has not worked long in this field.
She works with the elderly and has never worked with pediatrics.
She has never worked with children with cerebral palsy.
I was shocked.
Though the lady was nice, there is no way she could be of a help with no education or experience.
Each member of our family has been daily training over the past 10 1/2 years to be of help to Jewel.
We work with her day in and out.
We are all first aid and CPR -infant/child certified and some have adult certification as well.
We all have been to almost every therapy session, so we can learn and be of better help to Jewel.
How can the insurance think that someone with out specialized training come in and help with our daughter? How can a six month general nurses aid program equip some one to be a care giver to a child with is immobile with cerebral palsy with many other labels?!
The risk is high for aspiration during feeding and water for some one without training.
The risk to hurt Jewels hips is high with out the proper experience, education, understanding, and training.
The stakes are too high.
We have kept vigil over Jewel, keeping her safe, healthy and happy.
Good intentions are not enough.
One bad aspiration leads to infection leads to hospitalization .... not worth the risk!
We want to keep Jewel healthy, happy and medication / hospital free!
I am sorry if I sound ungrateful, it seemed like such a positive possibility for her and us but the gift was not satisfactory.
Thursday, December 1, 2011
Pancakes for dinner
12/1/11 Thursday
Happy December first!
Woke up this morning to Jewel calling, "tree,tree, tree, tree, tree,...I want a tree, ... get up and get tree please, Grace wants tree, Makena wants tree, Raven wants tree!"
"Get tree now!"
At first I did not quite make out what she was saying and then I got it loud and clear.
One thing that is so wonderful about Jewel is that she is very persistent and will never give up or be broken.
So if by the fifteenth, "tree" if at first I did not understand, she would not give up until I got it. :)
I am thankful for this speech.
For dinner this evening I said, left overs for everyone, pick something and Jewel kept shouting something.
Was it, "bake cake?" Did she want me to bake a cake?
Jewel said, "No"
Was it, "blanket?" Was she cold?
Jewel said, "Not cold"
Back and forth I tried and tried, then I called Raven in to decipher, and still nothing.
Then she said, "look" and we looked around by the table and there was a Bisquick box with the image of a Pancake on it, and we yelled, "do you want pancake for dinner?!"
"Yes, ban cake".
Oh, the beauty of speech, to speak and be heard.
We still need to work on her "p" - this is evident and pancakes made a perfect dinner this first of December.
Happy December first!
Woke up this morning to Jewel calling, "tree,tree, tree, tree, tree,...I want a tree, ... get up and get tree please, Grace wants tree, Makena wants tree, Raven wants tree!"
"Get tree now!"
At first I did not quite make out what she was saying and then I got it loud and clear.
One thing that is so wonderful about Jewel is that she is very persistent and will never give up or be broken.
So if by the fifteenth, "tree" if at first I did not understand, she would not give up until I got it. :)
I am thankful for this speech.
For dinner this evening I said, left overs for everyone, pick something and Jewel kept shouting something.
Was it, "bake cake?" Did she want me to bake a cake?
Jewel said, "No"
Was it, "blanket?" Was she cold?
Jewel said, "Not cold"
Back and forth I tried and tried, then I called Raven in to decipher, and still nothing.
Then she said, "look" and we looked around by the table and there was a Bisquick box with the image of a Pancake on it, and we yelled, "do you want pancake for dinner?!"
"Yes, ban cake".
Oh, the beauty of speech, to speak and be heard.
We still need to work on her "p" - this is evident and pancakes made a perfect dinner this first of December.
Wednesday, November 30, 2011
Swallow exercise, Shaker
11/30/11 Wednesday
Today we learned a new exercise for Jewel to help strengthen her muscles for swallow control.
It is called Shaker/Shakir exercise;
"the child lies flat on back, (assist if you need to use two people to help with posture and positioning- Jewel needs this.) Encourage them to raise their head, help them as needed and slowly get them to touch their chin on chest, or as much as able to. Their shoulders should not raise-very important because if the shoulders come up you are using a different group of muscles. Get the child to look at their toes. Slowly with control and a little help the head goes down. Try stay relaxed, breathing " out" on the up and "in" on the down. I found a great web page that has this exercise and many more, check it out. Repetition and consistency is key to be able to see results. If I drop the ball Jewel fails, but if I am consistent she will progress and reap the benefits.
http://stroke.about.com/od/caregiverresources/qt/swallowxrcs.htm
The second exercise we did was with a candy cane. She is in her wheel chair and she sees the candy can on the table, she brings her head down, like a chin tuck and you put the candy can by her mouth and she has to suck. This is to help the muscles in the lip get stretched and form a tight lip closure. This will help with drinking safely with out drooling and with her "p,b, m"- sounds for speech. Some children can do other exercises to help with lip closure but in Jewel's condition this is the best exercise that will help her. After each suck and swallow, help the child get their heads back up and take time to catch their breath. This is very tiring for them, be encouraging and remind them; no teeth, no bitting - just sucking. :) We have seen gains in Jewel's drinking with these techniques, this will help her get stronger and hopefully get more control thus becoming safer. Her breathing sounds less wet and rattily since doing all her new swallow strengthening games and exercises. Staying calm and relaxed is a challenge for her but she is always making strides. I am grateful to all the therapists who have helped teach us how to best help our daughter. Some of these therapists are so talented and they truly have a gift and calling in their field of expertise. They have come alongside us and changed our quality of life, thank you! I am learning that it is me who is changing and becoming a better person because of my daughter, Jewel. Thank you Jewel! Thank you Raven and Makena who always come alongside Jewel and help her. They have learned to help their sister in feeding, drinking, and speech. Not an easy task but a worthy one. They encourage Jewel to use a full sentence and they constantly ask more of her, daily laughing and singing with her. Today she sang and it was truly a delightful moment. We must take nothing for granted and always be willing to go the extra mile for our children.
-"It is the nature of man to rise to greatness if greatness is expected of him/her" John Steinbeck
Today we learned a new exercise for Jewel to help strengthen her muscles for swallow control.
It is called Shaker/Shakir exercise;
"the child lies flat on back, (assist if you need to use two people to help with posture and positioning- Jewel needs this.) Encourage them to raise their head, help them as needed and slowly get them to touch their chin on chest, or as much as able to. Their shoulders should not raise-very important because if the shoulders come up you are using a different group of muscles. Get the child to look at their toes. Slowly with control and a little help the head goes down. Try stay relaxed, breathing " out" on the up and "in" on the down. I found a great web page that has this exercise and many more, check it out. Repetition and consistency is key to be able to see results. If I drop the ball Jewel fails, but if I am consistent she will progress and reap the benefits.
Shaker Exercise
Lie flat on your back and raise your head as though you were trying to fixate your gaze on your toes. While you do this, make sure not to raise your shoulders. This simple exercise improves swallowing ability if it is performed three to six times per day for at least six weeks. If you get good at it, increase the duration of each head lift and the number of repetitions.Hyoid Lift Maneuver
This is a rather simple exercise, although it may sound more like a task performed in one of those reality TV shows. Place a few small pieces of paper (about 1 inch in diameter) over a blanket or a towel. Then place a straw in your mouth and suck one of the pieces of paper to its tip. Keep sucking on the straw to keep the paper attached, bring it over a cup or a similar container and stop sucking. This will release the paper into the container. Your goal is to place about 5 to 10 pieces of paper into the container.http://stroke.about.com/od/caregiverresources/qt/swallowxrcs.htm
The second exercise we did was with a candy cane. She is in her wheel chair and she sees the candy can on the table, she brings her head down, like a chin tuck and you put the candy can by her mouth and she has to suck. This is to help the muscles in the lip get stretched and form a tight lip closure. This will help with drinking safely with out drooling and with her "p,b, m"- sounds for speech. Some children can do other exercises to help with lip closure but in Jewel's condition this is the best exercise that will help her. After each suck and swallow, help the child get their heads back up and take time to catch their breath. This is very tiring for them, be encouraging and remind them; no teeth, no bitting - just sucking. :) We have seen gains in Jewel's drinking with these techniques, this will help her get stronger and hopefully get more control thus becoming safer. Her breathing sounds less wet and rattily since doing all her new swallow strengthening games and exercises. Staying calm and relaxed is a challenge for her but she is always making strides. I am grateful to all the therapists who have helped teach us how to best help our daughter. Some of these therapists are so talented and they truly have a gift and calling in their field of expertise. They have come alongside us and changed our quality of life, thank you! I am learning that it is me who is changing and becoming a better person because of my daughter, Jewel. Thank you Jewel! Thank you Raven and Makena who always come alongside Jewel and help her. They have learned to help their sister in feeding, drinking, and speech. Not an easy task but a worthy one. They encourage Jewel to use a full sentence and they constantly ask more of her, daily laughing and singing with her. Today she sang and it was truly a delightful moment. We must take nothing for granted and always be willing to go the extra mile for our children.
-"It is the nature of man to rise to greatness if greatness is expected of him/her" John Steinbeck
Friday, November 25, 2011
Thanksgiving
11/25/11 Friday
There is so much to be grateful for, almost to much to list, but I thought I'd post a few things;
Jewel's big smile and her sparkling eyes filled with wonder.
She tells us daily that she loves us.
The laughter she shares with her sisters as it rings through our home.
The fact that she can scream for us by name from the bed room.
On the 15th of this month we went to Shriners Hospital for Children and they said that she was doing well.
Dr. said that her spine was straight and that the x-rays showed that the balls of her hips were more in the sockets than out, as shown in the prior x-rays. He said that Jewel has always been making gains since he met her. Such a good report!
She is reading more, and figuring out the stringing of sounds together make words.
She is starting to say, "th" correctly.
She does not have accidents and is completely potty trained~ Yes!
She takes, Calm a relaxing magnesium supplement by Peter Gillham. This balances calcium intake and restores healthy magnesium levels. Thus the result is a calmer body and less ridged tight tone and spasticity. I make three ounces each morning with a teaspoon of powder and as the drink cools, she takes sips through out the day. Jewel calls this, 'terrible water' because of the taste but it has an amazing calming affect on her body's muscles.
She has made some huge strides in math, finally showing a comprehension of simple addition.
When she does not understand, she is quick to tell us, "don't get it."
She is medication free.
She lives at home and is able to home school.
She has a friend Ava, whom she loves :)
Her temper tantrums have subsided because she is able to tell us what she needs and we can mostly understand her speech now.
She is bluntly honest. When we were talking about my orange sparkled painted toes, she said; "look like doo doo, sorry. I like dark purple better."
I am grateful for Jewels delight in Christmas and her ability to beg for the Christmas lights to go up. She found a co-conspirator in Raven and two weeks ago the Christmas lights were hung off our lanai/balcony and inside our living room. Every night she demands that the, "out side lights on, lights on please!" She had the lights up in the beginning of November and she had Makena write her Christmas list for her. Days ago she got some one to hang the stockings up. She can be so focused and a little task master, as she daily calls for; "play doll, dance!"
I am grateful for my family who is committed in keeping Jewel healthy, happy, strong. -Thank you Gary, Makena and Raven.
I am grateful for the gift of prayer and miracles. -Thank you to all those who have and still keep Jewel in their prayers, thus constantly cover her.
I am grateful for how she has changed me into a better person. -Thank you Jewel.
I am grateful for those professionals who have taught us all how better to help her. - Thank you Carol, Susan, Miguel, Crystal, Beth, Mathew, Angela, Angie, Amanda,... and some I can not recall at this time.
I am grateful for those in our community who have come along side her to help her. Some do not charge for their services because they want to help and they believe in her. -Jimmy, John, Kim, John C., Cindy
I am grateful for Jewel's dream to be a Hula dancer.
I am grateful for Cindy taking Jewel horseback riding years ago and teaching us so much. She tirelessly has come along side us and pushed us all. She was the reason Jewel go to achieve her dream of riding in the fourth of July Rodeo parade!
Thank you for the team that helped Jewel and Cookie Dough aka Billy in the parade; Kandi, Cindy, Carie, Yvonne, and Raven.
I am grateful that Cookie Dough still is able to take Jewel riding on his back.
I am grateful that our neighbor is happy to help lead the old horse so that Raven and Jewel can keep on with our Hippo-therapy. -Thank you Lindsey.
I am grateful that the owner of the horse believes in Hippo-therapy and has helped us keep Jewel's hips healthy. She has never charged us, she just opened her heart to us. -Thanky you Kandi.
I am grateful for the couple who bought Jewel her gait trainer. -Thank you Gill and Marian Levitt.
I am grateful for Jewel's dog Grace and those who trained her and us at HCI, Hawaii Canines for Independence. -Mo, Kate, Kathy, Elise, Kimmy, Donna, ...
I am grateful for Camp Imua and the experiences it has given to Makena, Raven, Jewel and myself. Thank you Imau Family Services all the staff, sponsors & donors.
I am grateful for all the lessons and trials for they have brought us all closer as a family and as a community. We have grown stronger, kinder, more compassionate, more patient, more understanding, filled with more joy, laughter and forgiveness and so much more.
I am grateful for Shriners and Dr. Pellette.
I am grateful for Dr. Mc Donald.
I am grateful for today and all the gifts it brings with it :)
Let us take nothing for granted for even the smallest act of kindness can make the largest impact!
There is so much to be grateful for, almost to much to list, but I thought I'd post a few things;
Jewel's big smile and her sparkling eyes filled with wonder.
She tells us daily that she loves us.
The laughter she shares with her sisters as it rings through our home.
The fact that she can scream for us by name from the bed room.
On the 15th of this month we went to Shriners Hospital for Children and they said that she was doing well.
Dr. said that her spine was straight and that the x-rays showed that the balls of her hips were more in the sockets than out, as shown in the prior x-rays. He said that Jewel has always been making gains since he met her. Such a good report!
She is reading more, and figuring out the stringing of sounds together make words.
She is starting to say, "th" correctly.
She does not have accidents and is completely potty trained~ Yes!
She takes, Calm a relaxing magnesium supplement by Peter Gillham. This balances calcium intake and restores healthy magnesium levels. Thus the result is a calmer body and less ridged tight tone and spasticity. I make three ounces each morning with a teaspoon of powder and as the drink cools, she takes sips through out the day. Jewel calls this, 'terrible water' because of the taste but it has an amazing calming affect on her body's muscles.
She has made some huge strides in math, finally showing a comprehension of simple addition.
When she does not understand, she is quick to tell us, "don't get it."
She is medication free.
She lives at home and is able to home school.
She has a friend Ava, whom she loves :)
Her temper tantrums have subsided because she is able to tell us what she needs and we can mostly understand her speech now.
She is bluntly honest. When we were talking about my orange sparkled painted toes, she said; "look like doo doo, sorry. I like dark purple better."
I am grateful for Jewels delight in Christmas and her ability to beg for the Christmas lights to go up. She found a co-conspirator in Raven and two weeks ago the Christmas lights were hung off our lanai/balcony and inside our living room. Every night she demands that the, "out side lights on, lights on please!" She had the lights up in the beginning of November and she had Makena write her Christmas list for her. Days ago she got some one to hang the stockings up. She can be so focused and a little task master, as she daily calls for; "play doll, dance!"
I am grateful for my family who is committed in keeping Jewel healthy, happy, strong. -Thank you Gary, Makena and Raven.
I am grateful for the gift of prayer and miracles. -Thank you to all those who have and still keep Jewel in their prayers, thus constantly cover her.
I am grateful for how she has changed me into a better person. -Thank you Jewel.
I am grateful for those professionals who have taught us all how better to help her. - Thank you Carol, Susan, Miguel, Crystal, Beth, Mathew, Angela, Angie, Amanda,... and some I can not recall at this time.
I am grateful for those in our community who have come along side her to help her. Some do not charge for their services because they want to help and they believe in her. -Jimmy, John, Kim, John C., Cindy
I am grateful for Jewel's dream to be a Hula dancer.
I am grateful for Cindy taking Jewel horseback riding years ago and teaching us so much. She tirelessly has come along side us and pushed us all. She was the reason Jewel go to achieve her dream of riding in the fourth of July Rodeo parade!
Thank you for the team that helped Jewel and Cookie Dough aka Billy in the parade; Kandi, Cindy, Carie, Yvonne, and Raven.
I am grateful that Cookie Dough still is able to take Jewel riding on his back.
I am grateful that our neighbor is happy to help lead the old horse so that Raven and Jewel can keep on with our Hippo-therapy. -Thank you Lindsey.
I am grateful that the owner of the horse believes in Hippo-therapy and has helped us keep Jewel's hips healthy. She has never charged us, she just opened her heart to us. -Thanky you Kandi.
I am grateful for the couple who bought Jewel her gait trainer. -Thank you Gill and Marian Levitt.
I am grateful for Jewel's dog Grace and those who trained her and us at HCI, Hawaii Canines for Independence. -Mo, Kate, Kathy, Elise, Kimmy, Donna, ...
I am grateful for Camp Imua and the experiences it has given to Makena, Raven, Jewel and myself. Thank you Imau Family Services all the staff, sponsors & donors.
I am grateful for all the lessons and trials for they have brought us all closer as a family and as a community. We have grown stronger, kinder, more compassionate, more patient, more understanding, filled with more joy, laughter and forgiveness and so much more.
I am grateful for Shriners and Dr. Pellette.
I am grateful for Dr. Mc Donald.
I am grateful for today and all the gifts it brings with it :)
Let us take nothing for granted for even the smallest act of kindness can make the largest impact!
Monday, October 31, 2011
Pumpkin Patch
I love doing family outings. I love when the whole family gathers itself together and does something for a common goal.
A lot of time our family day is an adventure; either we get lost, car breaks down, or we take turns having meltdowns. I'm not sure if it is the fact that I was raised on the belief of familial like the Brady Bunch happened in real life, but whatever the reason-I always value and have fun with my family.
Today we went to the Kula Pumpkin patch, (i'm sure it has a real name, but this is what I'm calling it).
In order to get out of the house in one piece, Jewel and I decided to bring her doll Kanani (though dad drew the line when we asked to bring Kanani's dog...) and when Raven suggested we bring therapy dog grace, I told her no. Haha, we take turns being the chief or the indians.
Anyway, the ride up to the patch was very long and windy, and sort of irratable. Half of the family likes the music very loud and the other half is in the minority and so their vote sometimes doesn't count.
We opted out of bringing Jewel's chair because as mom mentioned in the previous post-it really doesn't fit her anymore. It is big and clunky and her head cocks back to the side or ceiling sometimes, since the chair is not at a 90degree angle. We have asked the insurance for a new chair six months ago, but nothing has come of it. Keep praying for a new wheelchair with Jewel. I have the perfect one picked out, it is called a "kid rock" chair by quantam rehab and it is just amazing.
It was really fun when we got to the patch-even though it was a million degrees-who heard of Kula being hot and sweaty?!
Here are some photos, if you plan to go-the patch is located right across from Rice park, and it closes at 4, so come early. They have the best teri burgers so definitely bring money for a pumpkin (around 5-10 dollars depending on size) and 3$ for a burger.
Click the photos to enlarge them. (c)Makena Gadient
A lot of time our family day is an adventure; either we get lost, car breaks down, or we take turns having meltdowns. I'm not sure if it is the fact that I was raised on the belief of familial like the Brady Bunch happened in real life, but whatever the reason-I always value and have fun with my family.
Today we went to the Kula Pumpkin patch, (i'm sure it has a real name, but this is what I'm calling it).
In order to get out of the house in one piece, Jewel and I decided to bring her doll Kanani (though dad drew the line when we asked to bring Kanani's dog...) and when Raven suggested we bring therapy dog grace, I told her no. Haha, we take turns being the chief or the indians.
Anyway, the ride up to the patch was very long and windy, and sort of irratable. Half of the family likes the music very loud and the other half is in the minority and so their vote sometimes doesn't count.
We opted out of bringing Jewel's chair because as mom mentioned in the previous post-it really doesn't fit her anymore. It is big and clunky and her head cocks back to the side or ceiling sometimes, since the chair is not at a 90degree angle. We have asked the insurance for a new chair six months ago, but nothing has come of it. Keep praying for a new wheelchair with Jewel. I have the perfect one picked out, it is called a "kid rock" chair by quantam rehab and it is just amazing.
It was really fun when we got to the patch-even though it was a million degrees-who heard of Kula being hot and sweaty?!
Here are some photos, if you plan to go-the patch is located right across from Rice park, and it closes at 4, so come early. They have the best teri burgers so definitely bring money for a pumpkin (around 5-10 dollars depending on size) and 3$ for a burger.
Click the photos to enlarge them. (c)Makena Gadient
Thursday, October 27, 2011
Special needs car seat evaluation
10/27 11 Thursday
We are in the process of getting Jewel evaluated for a special needs car seat, and apparently there are no people qualified on Maui to do this, so we will be flying to Honolulu to get her evaluated.
She has just out grown her car seat and all the tweaking and pulling and tugging can not make it grow bigger. We ran into a dead end with the 5 point harness idea, the seasoned drag car racing men were willing to donate a harness and install it for the pure joy of helping a child. But upon further deliberation and research they decided that it was too risky since we had a teenage boy die in a car accident due to internal bleeding caused by the 5 point harness. So for safeties sake we scrap this project.
We will be flying out in november to Shriners Children's hospital for this car seat evaluation and Jewel will be checked up by her doctor there as well. A post surgery nurse has the certification to do the car seat evaluation. I am very nervous because it is a chore to travel with Jewel, she is too large for me to carry her across the airport and she has out grown her wheel chair. Non the less I am grateful for the opportunity and resources that show themselves available for Jewel. What if I lived somewhere with out any of these facilities and expertise, this would be sad for Jewel.
She has taken steps forward in her independent reading and steps back in her skin breakdown, her ability to wear her AFO's that she is currently out growing, frustration, miscommunication, and then there is music and laughter and fun times with her sisters. Our life is a marathon and not for the weak at heart.
One of my sweet friends passed away on Monday and she has three lovely daughters, it has been a difficult passing for us that loved her and are left behind, though this just inspires me to savour every moment and be the ray of light I was designed to be. This passing has brought up some of my own fears of what if this happens to me.... but I will fight those thoughts and savour each moment of life instead. In spite of all the challenges of the day, today is a good day to live to the fullest.
We are in the process of getting Jewel evaluated for a special needs car seat, and apparently there are no people qualified on Maui to do this, so we will be flying to Honolulu to get her evaluated.
She has just out grown her car seat and all the tweaking and pulling and tugging can not make it grow bigger. We ran into a dead end with the 5 point harness idea, the seasoned drag car racing men were willing to donate a harness and install it for the pure joy of helping a child. But upon further deliberation and research they decided that it was too risky since we had a teenage boy die in a car accident due to internal bleeding caused by the 5 point harness. So for safeties sake we scrap this project.
We will be flying out in november to Shriners Children's hospital for this car seat evaluation and Jewel will be checked up by her doctor there as well. A post surgery nurse has the certification to do the car seat evaluation. I am very nervous because it is a chore to travel with Jewel, she is too large for me to carry her across the airport and she has out grown her wheel chair. Non the less I am grateful for the opportunity and resources that show themselves available for Jewel. What if I lived somewhere with out any of these facilities and expertise, this would be sad for Jewel.
She has taken steps forward in her independent reading and steps back in her skin breakdown, her ability to wear her AFO's that she is currently out growing, frustration, miscommunication, and then there is music and laughter and fun times with her sisters. Our life is a marathon and not for the weak at heart.
One of my sweet friends passed away on Monday and she has three lovely daughters, it has been a difficult passing for us that loved her and are left behind, though this just inspires me to savour every moment and be the ray of light I was designed to be. This passing has brought up some of my own fears of what if this happens to me.... but I will fight those thoughts and savour each moment of life instead. In spite of all the challenges of the day, today is a good day to live to the fullest.
Wednesday, September 21, 2011
Velva soft weighted pressure vests
9/21/11 Wednesday,
We are looking into getting Jewel a weighted vest.
This vest can act like a pressure vest due to the design. It velcrows together at the sides and on top of the shoulders, making it easy peasy to put on. You can make the sides and top snug thus increasing the pressure and helps with calming. I figure that we can put in either weights or ice packs in the inside pockets to cool the child or add weights for sensory proprioceptive feedback and stability.
http://www.velvasoft.com/velvasoft-weighted-vest.html
This weighted vest is made of koolnit technology, looks like the top vest but helps with children who tend to overheat and children with cerebral palsy tend to overheat. When children can not regulate their temperature they can dehydrate thus risking hospitalization. The Koolnit is 6.8oz 100% polyester mesh fabric that is light weight, durable and washable.
http://www.velvasoft.com/koolnit-weighted-vest1.html
Seems like e-bay and amazon have used vests but not many of this brand. An occupational therapist brought one over and it seems like a nice fit. I am seriously considering ordering one, check it out. Shipping to Hawaii is what kills us on this end.
We are looking into getting Jewel a weighted vest.
This vest can act like a pressure vest due to the design. It velcrows together at the sides and on top of the shoulders, making it easy peasy to put on. You can make the sides and top snug thus increasing the pressure and helps with calming. I figure that we can put in either weights or ice packs in the inside pockets to cool the child or add weights for sensory proprioceptive feedback and stability.
http://www.velvasoft.com/velvasoft-weighted-vest.html
This weighted vest is made of koolnit technology, looks like the top vest but helps with children who tend to overheat and children with cerebral palsy tend to overheat. When children can not regulate their temperature they can dehydrate thus risking hospitalization. The Koolnit is 6.8oz 100% polyester mesh fabric that is light weight, durable and washable.
http://www.velvasoft.com/koolnit-weighted-vest1.html
Seems like e-bay and amazon have used vests but not many of this brand. An occupational therapist brought one over and it seems like a nice fit. I am seriously considering ordering one, check it out. Shipping to Hawaii is what kills us on this end.
used pediatric equipment for sale
9/21/11 Wednesday
I found this site this morning, this page lists used pediatric equipment for sale.
http://www.rehabequipmentexchange.com/pediatric_equipment_for_sale
I found this site this morning, this page lists used pediatric equipment for sale.
http://www.rehabequipmentexchange.com/pediatric_equipment_for_sale
Tuesday, September 20, 2011
Weighted Gloves for Handwriting
http://www.therapro.com/Weighted-Glove-for-Handwriting-P73176.aspx
Looking at Weighted Gloves for Jewel to use while practicing her handwriting. These look pretty spot on. :-)
Looking at Weighted Gloves for Jewel to use while practicing her handwriting. These look pretty spot on. :-)
the Zaky pillow calming hand
9/20/11 Tuesday
Have you heard of the Zaky hand?
It is more than a pillow an amazing hand with healing results.
http://www.nurturedbydesign.com/en/thezaky/parents-healthy.php
I just remembered about the Zaky hand when I was researching a couple of days ago.
I am looking to purchase a used Velva Soft pressure weighted vest sized Small.
Then I remembered about the Zaky hand, it has an amazing history, design with so many helpful results in the neonatal care unit and with babies in general. I want to get a used one for Jewel, new from the site is spare change short of $100 and can be purchased on Amazon for much less.
It has clinical studies and evidence based that this hand calms the child, helps reduce Apneas/bradycardia, promotes brain development with deeper sleep, aids with self temperature regulation, children cry less, feel safer, helps with correct positioning when the child is sleeping or in a car seat, and much more.
It is designed by a parent which makes it perfect in my eyes.
My friend had one given to her baby in the NICU at Kapi'olani hospital a few years back and she said it worked. She would keep the hand on her to pick up her scent and then leave it on her son when she went to go pump her milk :) nice hey! Hospitals can opt to have the Zaky hand in their NICU and full term nurseries.
I have Jewel sleeping with me and most of the night she is on one of my arms and I thought I may just try get a used Zaky hand to see if this will help her and give my arm a rest, at least for part of the night.
The hands come in different colors and are filled with some sort of safe beans that will not smother the child. Go check it out, they even have the Kangaroo Zaky for home and hospital Kangaroo Care! Awesome!! And for you crafty people out there who can not afford the prices of this hand you should look into making your own! I do not know what you can fill it with but buck wheat comes to mind, they have great buck wheat pillows out there that people use, they stay cool all night and have some weight to them. I may try this myself. We all need a helping hand.
Have you heard of the Zaky hand?
It is more than a pillow an amazing hand with healing results.
http://www.nurturedbydesign.com/en/thezaky/parents-healthy.php
I just remembered about the Zaky hand when I was researching a couple of days ago.
I am looking to purchase a used Velva Soft pressure weighted vest sized Small.
Then I remembered about the Zaky hand, it has an amazing history, design with so many helpful results in the neonatal care unit and with babies in general. I want to get a used one for Jewel, new from the site is spare change short of $100 and can be purchased on Amazon for much less.
It has clinical studies and evidence based that this hand calms the child, helps reduce Apneas/bradycardia, promotes brain development with deeper sleep, aids with self temperature regulation, children cry less, feel safer, helps with correct positioning when the child is sleeping or in a car seat, and much more.
It is designed by a parent which makes it perfect in my eyes.
My friend had one given to her baby in the NICU at Kapi'olani hospital a few years back and she said it worked. She would keep the hand on her to pick up her scent and then leave it on her son when she went to go pump her milk :) nice hey! Hospitals can opt to have the Zaky hand in their NICU and full term nurseries.
I have Jewel sleeping with me and most of the night she is on one of my arms and I thought I may just try get a used Zaky hand to see if this will help her and give my arm a rest, at least for part of the night.
The hands come in different colors and are filled with some sort of safe beans that will not smother the child. Go check it out, they even have the Kangaroo Zaky for home and hospital Kangaroo Care! Awesome!! And for you crafty people out there who can not afford the prices of this hand you should look into making your own! I do not know what you can fill it with but buck wheat comes to mind, they have great buck wheat pillows out there that people use, they stay cool all night and have some weight to them. I may try this myself. We all need a helping hand.
Thursday, September 15, 2011
2400 Spirit Adjustable Positioning System APS Car Seat
2400 Spirit™ Adjustable Positioning System™ (APS™) Car Seat
US Patent # D636,190 S
US Patent # D636,190 S
Columbia Medical has redefined the adaptive car seat industry with the launch of its new Spirit 2400 Adjustable Positioning System (APS) Car Seat that features optional swing-away trunk and hip supports normally found only in complex wheelchair seating systems. The Spirit APS is designed for users between 25-130lbs., and up to 66 inches in height. It comes standard with features such as soft-padded head support, low profile sides to make transfers of passengers easier, plush machine-washable upholstery, 5-point harness for safety and a recline bar to provide optional recline (tilt). Also, installation is made easier as the vehicle shoulder belt can be used as the tether in most installations.
For users requiring additional positioning, the Spirit is the only car seat that offers swing-away trunk and hip supports that are individually adjustable and can be fitted exactly to the user's specifications. The support assemblies, along with the pads, can be ordered in various sizes to accommodate varying trunk and hip widths. The swing-away latch mechanisms enable a full 180 degree range so that they swing completely out of the way during transfers of the individual in and out of the seat.
The Spirit was designed to enhance the lives of children with special needs by providing a car seat for support and comfort. Columbia Medical invites you to "Let the Spirit Move You.(TM)"
For users requiring additional positioning, the Spirit is the only car seat that offers swing-away trunk and hip supports that are individually adjustable and can be fitted exactly to the user's specifications. The support assemblies, along with the pads, can be ordered in various sizes to accommodate varying trunk and hip widths. The swing-away latch mechanisms enable a full 180 degree range so that they swing completely out of the way during transfers of the individual in and out of the seat.
The Spirit was designed to enhance the lives of children with special needs by providing a car seat for support and comfort. Columbia Medical invites you to "Let the Spirit Move You.(TM)"
MSRP: $995.00
2500 therapedic integrated positioning system IPS car seat
2500 Therapedic™Integrated Positioning System™ (IPS™) Car Seat
The first choice of parents and therapists for the safe transport of individuals with disabilities. The Therapedic Model 2000 accommodates individuals weighing between 40 - 130 pounds and between 54 - 66 inches in height.
MSRP: $1,734.00
200 therapedic integrated positioning system IPS car seat
2000 Therapedic™Integrated Positioning System™ (IPS™)Car Seat
The first choice of parents and therapists for the safe transport of individuals with disabilities. The shell sides, along with positioning pads, provide "integrated" lateral support. The Therapedic Model 2000 accommodates individuals weighing between 20 - 102 pounds and up to 60 inches in height.
MSRP: $995.00
car seat links
Here is another helpful link on car seats,
http://pediatrics.about.com/od/carseats/a/special_needs.htm
I am finding that almost all these special needs car seats start at $1000.00-$3000.00 plus shipping.
Unless you can find one used or use a regular car seat and custom fit it to your child with rolled up towels, and small pillows and neck pillows. Yes all this is extra work and will make the child hotter but this is what we have done for Jewel all along. We have never had a special needs car seat for her. Up until now she has fitted into regular car seats with rolled up towels, folded towels and her sisters in the back seat giving her support. They help re position her, put her legs in criss cross position when her hips are spasming and they put her head back in the car seat when she flops out. God bless sisters!
http://pediatrics.about.com/od/carseats/a/special_needs.htm
I am finding that almost all these special needs car seats start at $1000.00-$3000.00 plus shipping.
Unless you can find one used or use a regular car seat and custom fit it to your child with rolled up towels, and small pillows and neck pillows. Yes all this is extra work and will make the child hotter but this is what we have done for Jewel all along. We have never had a special needs car seat for her. Up until now she has fitted into regular car seats with rolled up towels, folded towels and her sisters in the back seat giving her support. They help re position her, put her legs in criss cross position when her hips are spasming and they put her head back in the car seat when she flops out. God bless sisters!
... still looking at car seats and cost
http://pediatrics.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=pediatrics&cdn=health&tm=159&f=10&su=p284.12.336.ip_p1051.4.336.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.preventinjury.org/SNTtrainedPpl.asp
| The Automotive Safety Program has collected a list of child passenger safety technicians who have attended the training, "Safe Travel for All Children: Transporting Children with Special Health Care Needs." Individuals who have met the requirements to instruct the training are noted with "Instructor" after their names. Select a state or all states below to view the list. on the site you punch in your state and it will give you a listing like this one for Hawaii. |
| John Kaizuke Dept. of Health Hawaii State 1582 Kamehameha Ave. Hilo, HI 96720 808-933-0911 jtkaizuk@mail.health.state.hi.us  |
| J. Mike Meyer Shriners Hospitals for Children - Honolulu 1310 Punahou St. Honolulu, HI 96826 808-216-9989 jmeyer@shrinenet.org |
| Jill Taosaka Kapiolani Medical Center for Women & Children 1319 Punahou St Honolulu, HI 96826 808-483-4917 jillt@kapiolani.org |
| Mary Jo Sweeney Kauai Community College 3-1901 Kaumualii Hwy. Lihue, HI 96756 800-742-9606 maryswee@hawaii.edu |
more car seats
9/15/11
Car Seats, we are still looking and found this one;
It is a Special Tomato car seat for the special needs child.
For those who have a bigger budget for car seats check out this site;
http://www.specialtomato.com/specialtomatompscarseatsmall.html
Item# ST9288SCS
Price:$1,270.06
Copied and pasted from the site; "The Special Tomato Multi-Positioning Seat (MPS) can now be used in the Car! The special needs car seat version provides proper seating support for your child that has been crash tested and is safe for use in the car. The Special Tomato Car Seat is a soft, lightweight and durable seating surface with cushions that allow for customized support. The cushions move up and down on a hook and loop track allowing for growth of your child and length of use of the Car Seat. The cushions are made from a latex free material that is peel and tear resistant and impermeable to fluids. The cushions are supported by an outer shell that maintains position. Included with the Special Tomato Car Seat is Hip-Flex® adjustment that provides 30 degrees of pivot. This provides the proper alignment of your child's pelvis while using the special needs car seat from Special Tomato. The perfect solution to your car travel needs from Special Tomato!
Why is the Special Tomato Car Seat Perfect for Your Child?
Car Seats, we are still looking and found this one;
It is a Special Tomato car seat for the special needs child.
For those who have a bigger budget for car seats check out this site;
http://www.specialtomato.com/specialtomatompscarseatsmall.html
Item# ST9288SCS
Price:$1,270.06
Copied and pasted from the site; "The Special Tomato Multi-Positioning Seat (MPS) can now be used in the Car! The special needs car seat version provides proper seating support for your child that has been crash tested and is safe for use in the car. The Special Tomato Car Seat is a soft, lightweight and durable seating surface with cushions that allow for customized support. The cushions move up and down on a hook and loop track allowing for growth of your child and length of use of the Car Seat. The cushions are made from a latex free material that is peel and tear resistant and impermeable to fluids. The cushions are supported by an outer shell that maintains position. Included with the Special Tomato Car Seat is Hip-Flex® adjustment that provides 30 degrees of pivot. This provides the proper alignment of your child's pelvis while using the special needs car seat from Special Tomato. The perfect solution to your car travel needs from Special Tomato!
Why is the Special Tomato Car Seat Perfect for Your Child?
- Choose from 2 cushion sizes to lengthen the life of the car seat by an average of 7 years
- Choose from 2 headrest options:
- Standard Headrest
- Headrest with Laterals
- Hip-Flex includes 15 degree hip extension and 15 degree hip flexion
- 5-Year Warranty
- Small Size Weight Capacity is 80 lbs
- Made from Latex Free materials
- Impermeable to fluids
- Peel and Tear Resistant
- Included with the MPS Car Seat are:
- Adjustable Seat, Head and Back Cushions
- Seat Shell
- LATCH Strap
- Tether Strap ® must be used
- Safety Attachment Straps ® For use outside the vehicle
- Has been successfully tested and approved for aircraft travel (FAA approved) PLEASE NOTE: NHSTA School Bus Rules/Regulations do not include special needs car seat regulations for children over 40 lbs. The MPS Car Seat is not tested for INSTALLATION DIRECTLY INTO A SCHOOL BUS SEAT. Please note that we do offer the Push Chair Kit which conforms to WC19 standards for use with a tie down system in transport. PLEASE NOTE: The Car Seat does not come with a Footrest. The Footrest cannot be used while the seat is being used in a vehicle. PLEASE NOTE: The Car Seat cannot be used in Canada. PLEASE NOTE: There is a 10-year Expiration Date for the MPS Car Seat and the MPS Push Chair Kits for use during transportation! The MPS Seat itself can be used beyond 10 years with the Wooden Mobile Base or attached to a standard chair for more than 10 years!"
CAR SEATS
9/15/2011 Thursday
Still researching the issues with car seats;
Jewel has out grown her $50 Walmart car seat, we have found great tall supportive booster seats to replace this one but they all do not come with a 5 point harness. Jewel needs a 5 point harness to keep her safe in the car. Even though Jewel is 10 and tall, her muscle control is pretty much like that of an infant, so she needs the support of the straps to keep her in the car seat.
Special needs car seats are crazy expensive putting almost all of them out of our reach.
So we have been researching on line, on face book and asking around.
I went to our local auto parts store the other day because the owner has been a part of the drag race circuit for years. I enquired about enlisting his help with ordering a 5 point harness and installing it in my car, since the drag racers have to do this all the time for their vehicles. I think this is a brilliant and affordable, viable, and sustainable idea. Someone should start this, it will save the special needs community tons of money, as long as it is done with safety standards and integrity in mind. Someone out there should become certified to install 5 point harnesses in our cars for our children.
Britax was one of the car seats that some families mentioned on face book.
They have head safety technology and you can custom fit your child, you log in your child's age, weight and hip measurements and they will fit you with a car seat! Pretty awesome, I love this part of fitting the car seat to your child's measurements, brilliant and logical!!!! =]
It will cost you around $400 plus shipping. If that is in your budget or maybe you have a community of support go and check it out.
http://www.britaxusa.com/car-seats
Still researching the issues with car seats;
Jewel has out grown her $50 Walmart car seat, we have found great tall supportive booster seats to replace this one but they all do not come with a 5 point harness. Jewel needs a 5 point harness to keep her safe in the car. Even though Jewel is 10 and tall, her muscle control is pretty much like that of an infant, so she needs the support of the straps to keep her in the car seat.
Special needs car seats are crazy expensive putting almost all of them out of our reach.
So we have been researching on line, on face book and asking around.
I went to our local auto parts store the other day because the owner has been a part of the drag race circuit for years. I enquired about enlisting his help with ordering a 5 point harness and installing it in my car, since the drag racers have to do this all the time for their vehicles. I think this is a brilliant and affordable, viable, and sustainable idea. Someone should start this, it will save the special needs community tons of money, as long as it is done with safety standards and integrity in mind. Someone out there should become certified to install 5 point harnesses in our cars for our children.
Britax was one of the car seats that some families mentioned on face book.
They have head safety technology and you can custom fit your child, you log in your child's age, weight and hip measurements and they will fit you with a car seat! Pretty awesome, I love this part of fitting the car seat to your child's measurements, brilliant and logical!!!! =]
It will cost you around $400 plus shipping. If that is in your budget or maybe you have a community of support go and check it out.
http://www.britaxusa.com/car-seats
Wednesday, September 14, 2011
helpful face book pages for the special needs families
9/14/11 Wednesday,
I wanted to share some of the more helpful face book pages that I have found for the special needs community;
I love EXCEPTIONAL FAMILY, they are family friendly and full of great posts, run by a family for families.
MEDICAL SUPPLY EXCHANGE, is a face book page where families advertise medical supplies they are willing to sell for cheap, some families just want you to pay for the shipping through pay pay and other posts are families looking for medical supplies that their insurance will not cover or they can not afford. It is an amazing and creative way to help this community.
ZACK'S LIST;your pediatric equipment exchange source from Canada
SPECIAL NEEDS SWAP MEET; have to request to join
DANIELLE'S FOUNDATION, a great non profit created for cerebral palsy and brain injured children.
MY CHILD WITHOUT LIMITS
THE COFFEE KLATCH, for all special needs, lost of information.
SNOWDROP CHILD DEVELOPMENT
BEST BUDDIES INTERNATIONAL
FRIENDSHIP CIRCLE OF MICHIGAN
ONEVOICE
A4CWSN-iPad apps
MOMSWITHAPPS
LILLIE'S PAD
APP STORE
DAN HABIB; he promotes inclusion for our children in schools, he made Including Samuel documentary and others he is working on, he has conceived and promoting I am Norm campaign to redefine normal.
INCLUDING SAMUEL; documentary made by Dan Habib on inclusion.
CERTAIN PROOF; A QUESTION OF WORTH; about the documentary being hosted and screened in your neighborhood or school.
CAMP IMUA; special needs camp for Maui counties school aged community.
IMUA FAMILY SERVICES, Maui counties therapeutic servesis for birth to three years of age, they are the only early intervention available on Maui that specializes in pediatric therapies.
UNITED CEREBRAL PALSY
CEREBRAL PALCY FAMILY NETWORK
Maybe you will make a face book page that will help other families :)
..... and there is so much more, new pages being made by families daily! It is easy to get lost and loose track of time on the computer so I go early morning when the house is sleeping and this is when I do my research. Happy trails on the quest to connect to the large cyber community out there.
I wanted to share some of the more helpful face book pages that I have found for the special needs community;
I love EXCEPTIONAL FAMILY, they are family friendly and full of great posts, run by a family for families.
MEDICAL SUPPLY EXCHANGE, is a face book page where families advertise medical supplies they are willing to sell for cheap, some families just want you to pay for the shipping through pay pay and other posts are families looking for medical supplies that their insurance will not cover or they can not afford. It is an amazing and creative way to help this community.
ZACK'S LIST;your pediatric equipment exchange source from Canada
SPECIAL NEEDS SWAP MEET; have to request to join
DANIELLE'S FOUNDATION, a great non profit created for cerebral palsy and brain injured children.
MY CHILD WITHOUT LIMITS
THE COFFEE KLATCH, for all special needs, lost of information.
SNOWDROP CHILD DEVELOPMENT
BEST BUDDIES INTERNATIONAL
FRIENDSHIP CIRCLE OF MICHIGAN
ONEVOICE
A4CWSN-iPad apps
MOMSWITHAPPS
LILLIE'S PAD
APP STORE
DAN HABIB; he promotes inclusion for our children in schools, he made Including Samuel documentary and others he is working on, he has conceived and promoting I am Norm campaign to redefine normal.
INCLUDING SAMUEL; documentary made by Dan Habib on inclusion.
CERTAIN PROOF; A QUESTION OF WORTH; about the documentary being hosted and screened in your neighborhood or school.
CAMP IMUA; special needs camp for Maui counties school aged community.
IMUA FAMILY SERVICES, Maui counties therapeutic servesis for birth to three years of age, they are the only early intervention available on Maui that specializes in pediatric therapies.
UNITED CEREBRAL PALSY
CEREBRAL PALCY FAMILY NETWORK
Maybe you will make a face book page that will help other families :)
..... and there is so much more, new pages being made by families daily! It is easy to get lost and loose track of time on the computer so I go early morning when the house is sleeping and this is when I do my research. Happy trails on the quest to connect to the large cyber community out there.
Incentive Spirometer helps our reading lessons
9/14/11
Reading with Jewel is a progressively slow and steady process.
She has become a willing and eager student.
I am using Teach your child to read in 100 easy lessons by Siegfried Engelmann, Phyliss Haddox, Elaine Bruner. It takes about 20+ minutes. (Along with the Bob books.) The red print is for you to read to your child and the first red print says; I'm going to teach you how to read. ...The work is hard, but I think you can do it. ... =] I like the positive parent queuing, it is simple but some lessons may need breaks or to be divided into two lessons. Jewel insists on writing some of the letters on her dry erase board tray and even though this is difficult it is very satisfying for her. This way the letters are reinforced by her seeing, me saying, her saying, us writing. She gets very short of breath which makes talking very challenging so we break from the lesson and do some Spirometer blowing, (Incentive Spirometer). It is the blue one and the mouth piece is the straw like one. This helps her take deep breaths in to be able to blow the ball up the shaft. Relaxation and breath are key. Staying calm yourself is critical because our children pickup our feelings and mirror them back to us. We have been playing card pairs and Jewel is getting better at remembering where the cards are! Any blow toy can help the child enjoy playing and improving their relaxation, deep breathing, and lip closure, any way you can keep it fun will help the duration of the activity and attitude of the child stay positive because the blowing can become work and cumbersome. Spirometers can be purchased for as little as $5 and some blow toys can be purchased at the dollar store. But never leave the child with small toys that can lodge in their throats and suffocate them. Keeping it fun is our goal. Every child needs to have fun and play, we learn a lot through playing and this is a way we try to incorporate both. We are still using ice pops for helping Jewel with swallow strengthening and lip closure, though I have to limit it one per day since there are too many dyes and food coloring additives that are not good for the body. We use the otter pops with apple juice from Cost co but there are still chemicals and additives in these.
Reading with Jewel is a progressively slow and steady process.
She has become a willing and eager student.
I am using Teach your child to read in 100 easy lessons by Siegfried Engelmann, Phyliss Haddox, Elaine Bruner. It takes about 20+ minutes. (Along with the Bob books.) The red print is for you to read to your child and the first red print says; I'm going to teach you how to read. ...The work is hard, but I think you can do it. ... =] I like the positive parent queuing, it is simple but some lessons may need breaks or to be divided into two lessons. Jewel insists on writing some of the letters on her dry erase board tray and even though this is difficult it is very satisfying for her. This way the letters are reinforced by her seeing, me saying, her saying, us writing. She gets very short of breath which makes talking very challenging so we break from the lesson and do some Spirometer blowing, (Incentive Spirometer). It is the blue one and the mouth piece is the straw like one. This helps her take deep breaths in to be able to blow the ball up the shaft. Relaxation and breath are key. Staying calm yourself is critical because our children pickup our feelings and mirror them back to us. We have been playing card pairs and Jewel is getting better at remembering where the cards are! Any blow toy can help the child enjoy playing and improving their relaxation, deep breathing, and lip closure, any way you can keep it fun will help the duration of the activity and attitude of the child stay positive because the blowing can become work and cumbersome. Spirometers can be purchased for as little as $5 and some blow toys can be purchased at the dollar store. But never leave the child with small toys that can lodge in their throats and suffocate them. Keeping it fun is our goal. Every child needs to have fun and play, we learn a lot through playing and this is a way we try to incorporate both. We are still using ice pops for helping Jewel with swallow strengthening and lip closure, though I have to limit it one per day since there are too many dyes and food coloring additives that are not good for the body. We use the otter pops with apple juice from Cost co but there are still chemicals and additives in these.
Monday, September 12, 2011
documentary, A Certain Proof - a question of worth
9/12/11 Monday
Aloha
Daily I have taken to research the face book pages that have been put together by organizations and families designed for the 'special needs community'. I do not like to separate myself from other families by saying we are 'special needs' because I believe at the heart and core we are all the same and as families our needs are the same. We just have to see outside of the box we have labeled ourselves into.
A family with a child who is on the path to being a prima ballerina is on a journey that becomes specialized just like having a child who is differently abled. Same but different.
This morning I found this documentary and viewed its trailer;
www.certainproof.com
I hope that you are able to view this trailer in your hometown, I have e-mailed Footpath pictures to see if they will be doing a screening on Maui, info@footpathpictures.com
Their documentaries are designed to make a difference.
Are we worth any less because of our inability to walk or talk?
Are we worth more because we are beautiful or have nice things?
It is far too easy for me to say that we are all of worth no mater our race, creed, income, education, talent, and ability. For in our daily lives we automatically catalog and separate the outside world in our brains with out even thinking about it. We all have prejudices but through exposure, education and relationships we can build a better understanding of the breadth, depth, and scope that worth really is.
When Jewel was not developing as her sisters had I did not understand or know what to do.
I thought she was broken, and I cried a lot because I felt so helpless.
Daily she has and is teaching our family about worth and the gift of life, sacrifice, struggle and joy.
We are learning more about ourselves through her limitations.
We have to see beyond the 'box' of limits the world has put on human life, we have to tear down the labels and make our own definitions because the burden of proof is a celebration of our lives as we live together striving always to be love.
Aloha
Daily I have taken to research the face book pages that have been put together by organizations and families designed for the 'special needs community'. I do not like to separate myself from other families by saying we are 'special needs' because I believe at the heart and core we are all the same and as families our needs are the same. We just have to see outside of the box we have labeled ourselves into.
A family with a child who is on the path to being a prima ballerina is on a journey that becomes specialized just like having a child who is differently abled. Same but different.
This morning I found this documentary and viewed its trailer;
www.certainproof.com
I hope that you are able to view this trailer in your hometown, I have e-mailed Footpath pictures to see if they will be doing a screening on Maui, info@footpathpictures.com
Their documentaries are designed to make a difference.
Are we worth any less because of our inability to walk or talk?
Are we worth more because we are beautiful or have nice things?
It is far too easy for me to say that we are all of worth no mater our race, creed, income, education, talent, and ability. For in our daily lives we automatically catalog and separate the outside world in our brains with out even thinking about it. We all have prejudices but through exposure, education and relationships we can build a better understanding of the breadth, depth, and scope that worth really is.
When Jewel was not developing as her sisters had I did not understand or know what to do.
I thought she was broken, and I cried a lot because I felt so helpless.
Daily she has and is teaching our family about worth and the gift of life, sacrifice, struggle and joy.
We are learning more about ourselves through her limitations.
We have to see beyond the 'box' of limits the world has put on human life, we have to tear down the labels and make our own definitions because the burden of proof is a celebration of our lives as we live together striving always to be love.
Monday, August 29, 2011
:) Happy Dance
8/29/11 Monday,
I am late for work but wanted to share;
I was dressing Jewel this morning and it is easier for me to do this when she is on my bed,
this way I am not bending over too far.
As I was getting her clothes together, Jewel said;
"look mom, happy dance"
There she was lying on our bed, feet dangling off and she was gently wiggling,
she looked pretty straight to me with head looking up at ceiling and it was the perfect happy dance!
So Jewel has been showing everyone her 'happy dance' this morning.
Thank you Jewel, you have the perfect happy dance! :)
Everyone should have a happy dance, it is a great way to start the day!
I am late for work but wanted to share;
I was dressing Jewel this morning and it is easier for me to do this when she is on my bed,
this way I am not bending over too far.
As I was getting her clothes together, Jewel said;
"look mom, happy dance"
There she was lying on our bed, feet dangling off and she was gently wiggling,
she looked pretty straight to me with head looking up at ceiling and it was the perfect happy dance!
So Jewel has been showing everyone her 'happy dance' this morning.
Thank you Jewel, you have the perfect happy dance! :)
Everyone should have a happy dance, it is a great way to start the day!
Thursday, August 25, 2011
poem by Sam Levenson on Beauty
8/2/11 Thursday
Dear Makena, Raven and Jewel
I found this poem and I think it says what is important and what makes a lady beautiful.
always remember this poem;
Dear Makena, Raven and Jewel
I found this poem and I think it says what is important and what makes a lady beautiful.
always remember this poem;
"Time Tested Beauty Tips
For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his or her fingers through it once a day.
For poise, walk with the knowledge you'll never walk alone.
People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; Never throw out anybody.
Remember, If you ever need a helping hand, you'll find one at the end of your arm.
As you grow older, you will discover that you have two hands, one for helping yourself, the other for helping others.
The beauty of a woman is not in the clothes she wears, the figure that she carries, or the way she combs her hair. The beauty of a woman must be seen from in her eyes, because that is the doorway to her heart, the place where love resides.
The beauty of a woman is not in a facial mole, but true beauty in a woman is reflected in her soul. It is the caring that she lovingly gives, the passion that she shows, and the beauty of a woman with passing years only grows!"
— Sam Levenson
For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his or her fingers through it once a day.
For poise, walk with the knowledge you'll never walk alone.
People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; Never throw out anybody.
Remember, If you ever need a helping hand, you'll find one at the end of your arm.
As you grow older, you will discover that you have two hands, one for helping yourself, the other for helping others.
The beauty of a woman is not in the clothes she wears, the figure that she carries, or the way she combs her hair. The beauty of a woman must be seen from in her eyes, because that is the doorway to her heart, the place where love resides.
The beauty of a woman is not in a facial mole, but true beauty in a woman is reflected in her soul. It is the caring that she lovingly gives, the passion that she shows, and the beauty of a woman with passing years only grows!"
— Sam Levenson
Lesson from the Dentist
8/24/11 Wednesday,
We always see the dentist at the pedodontist office at 8am to be the first clients in and avoid germs, this was the objective and has stayed habit.
We were there this morning before the doors were open, it is Jewel's 6 month check up.
The usual, teeth poking, flossing, brushing and fluoride.
We swaddle Jewel in a velcro blanket, this time we used 2 since she has grown so much in length.
I sit on the dentist chair with her, today she her AFOs on and her legs are kept by me in a frog position to help break her tone. I hold her hands as well and speak to her talking her through the visit.
This morning Jewel kept saying, "scared, scary."
I did not see how tightly wound up I got.
My whole mission is to keep Jewel calm, safe and to explain the visit and for her to know that she is not alone, that her Mommy is there. We have done this same routine since she was tiny and had brittle breaking teeth that need a lot of painful and expensive dental work, with extraction and many caps to save her teeth.
Today I remind her that Dr. Sato is a father of 2 daughters, the same dentist that always takes care of her.
He flys in from Honolulu twice a week to Maui for years now.
I remind her to breath deeply and think of happy thoughts, reminding her that if she cries she will get all congested and have a hard time breathing.
I focus in on reminding the dentist and hygienist that I have now learnt that Jewel is a mouth breather.
I consistently repeat to Jewel how she needs to nose breath over and over again.
Jewel asks questions, "what doing", and I tell her what the dentist is doing and why, this continues as the dentist and hygienist affirm how good Jewel is doing, how wide she is opening her mouth and they are positively affirming how helpful she is being. I am right there helping re-position her head and just being in their faces like I always have.
I have become like the comic strip of the sculpture who is carving a self portrait, but ends up carving the mirror out of the soap stone since the artist is so close to the mirror that she loses her perspective and her focus thus carving the mirror which she was holding and not a bust of herself.
This was me and I did not see it.
After all was done and said, no dentist fingers or tools were bitten and no cavities were found, the visit came to a completion with the exchange of a tooth brush for Jewel.
This is when the dentist reminded me that Jewel is his best patient, and that I am a good mother. Even though I have just learnt that Jewel is solely a mouth breather and all the risks that come with that, and I am diligently doing all sorts of homework with her to help with her suck, swallow and breath co-ordination I need to remember that Jewel does not do things like the 'book' says to do. In spite of this Jewel has always done well, that her survival instincts are strong and have always worked for her during her dentist visits. I need to trust in Jewel and her body's primitive instincts to protect herself. She is healthy, happy and growing nicely. She eats table food and drinks water from a bendy straw. She is doing well and I need to see, acknowledge and trust in her ability to handle the dentist visit, it has been working for 10 years and I needed to relax and honor her way.
Just as I was taking her off the dentist chair she got her happy thought and shouted, "Santa" and smiled flashing her dimples and pearly whites. I guess it does not matter when you get your happy thought as long as they come :)
The lesson I learnt today;"Trust in Jewel, trust in myself and trust in God", this is something my mother in law said to me right after Jewel was born, and good advise just like dreams do not have expiration dates on them.
We always see the dentist at the pedodontist office at 8am to be the first clients in and avoid germs, this was the objective and has stayed habit.
We were there this morning before the doors were open, it is Jewel's 6 month check up.
The usual, teeth poking, flossing, brushing and fluoride.
We swaddle Jewel in a velcro blanket, this time we used 2 since she has grown so much in length.
I sit on the dentist chair with her, today she her AFOs on and her legs are kept by me in a frog position to help break her tone. I hold her hands as well and speak to her talking her through the visit.
This morning Jewel kept saying, "scared, scary."
I did not see how tightly wound up I got.
My whole mission is to keep Jewel calm, safe and to explain the visit and for her to know that she is not alone, that her Mommy is there. We have done this same routine since she was tiny and had brittle breaking teeth that need a lot of painful and expensive dental work, with extraction and many caps to save her teeth.
Today I remind her that Dr. Sato is a father of 2 daughters, the same dentist that always takes care of her.
He flys in from Honolulu twice a week to Maui for years now.
I remind her to breath deeply and think of happy thoughts, reminding her that if she cries she will get all congested and have a hard time breathing.
I focus in on reminding the dentist and hygienist that I have now learnt that Jewel is a mouth breather.
I consistently repeat to Jewel how she needs to nose breath over and over again.
Jewel asks questions, "what doing", and I tell her what the dentist is doing and why, this continues as the dentist and hygienist affirm how good Jewel is doing, how wide she is opening her mouth and they are positively affirming how helpful she is being. I am right there helping re-position her head and just being in their faces like I always have.
I have become like the comic strip of the sculpture who is carving a self portrait, but ends up carving the mirror out of the soap stone since the artist is so close to the mirror that she loses her perspective and her focus thus carving the mirror which she was holding and not a bust of herself.
This was me and I did not see it.
After all was done and said, no dentist fingers or tools were bitten and no cavities were found, the visit came to a completion with the exchange of a tooth brush for Jewel.
This is when the dentist reminded me that Jewel is his best patient, and that I am a good mother. Even though I have just learnt that Jewel is solely a mouth breather and all the risks that come with that, and I am diligently doing all sorts of homework with her to help with her suck, swallow and breath co-ordination I need to remember that Jewel does not do things like the 'book' says to do. In spite of this Jewel has always done well, that her survival instincts are strong and have always worked for her during her dentist visits. I need to trust in Jewel and her body's primitive instincts to protect herself. She is healthy, happy and growing nicely. She eats table food and drinks water from a bendy straw. She is doing well and I need to see, acknowledge and trust in her ability to handle the dentist visit, it has been working for 10 years and I needed to relax and honor her way.
Just as I was taking her off the dentist chair she got her happy thought and shouted, "Santa" and smiled flashing her dimples and pearly whites. I guess it does not matter when you get your happy thought as long as they come :)
The lesson I learnt today;"Trust in Jewel, trust in myself and trust in God", this is something my mother in law said to me right after Jewel was born, and good advise just like dreams do not have expiration dates on them.
Thursday, August 18, 2011
understanding
8/18/11 Thursday
No law or ordinance is mightier than understanding. -Plato
Jewel's frustration sometimes comes from not being understood.
I am understanding her need is no different than mine.
We have made a wonderful break through with Jewel's reading.
I think it is timing, knowledge and the creative process of not giving up and trying alternate avenues.
In the past Jewel was not able to physically tolerate and support this position of being on all fours on the floor.
Being able to be on all fours with gravity's help and our minimal touch is what helped facilitate reading.
Patience, ... waiting for Jewel to respond, read or ask for help.
Her processing takes a little longer than ours, being aware of this and respecting her way.
Weight bearing is critical to being able to use your limbs in a functional movement, so this position is multi-faceted.
Jewel is able to listen to audio books from the library and follow the story line and comprehend, for this we are very grateful. She has just finished listening to Inkheart and Inkspell by Cornelia Funke, one more in the series to go. One of us is always sitting by her during the audio book, ready to answer questions when she says, "I do not get it" or laugh with her or be sad with her. We do not just put her in her wheel chair with audio book on and leave, this is important to know because a child should always have a parent or caregiver close by to connect with.
I still read books out-loud with my teens, and we talk and connect as we read along. A most memorable book that we read together was, To Kill a Mockingbird by Harper lee. We had taken three copies out of the library and daily took turns reading together. We cried and laughed together, I stopped and explained ideas, history, life and we connected and grew in understanding. A most best time that I savour in my heart forever.
Yesterday Jewel read Book 3 and book 4 in the Bob book series by Bobby Lynn Maslen, scholastic. I had her in her chair and she was very relaxed. Her breath was very shallow due to the irritation of all the sugar cane harvest burning. I applied some slight pressure to her head in a downward motion thus stabilizing her head and I held the book up in front of her. She gets a good laugh out of the illustrations and after she has had time to look and we comment briefly on the pictures we begin reading. I wait and help only when she says, "help". Book 3 was a review on Mat and she did well. Book 4 brought more help from me, Jewel was tired after this but her focus and attitude was strong and happy, willing to go to the page that said, The End.
Understanding takes time, but a worthy and important act for both her and I. How can we be kind, show sympathy, be considerate or sensitive with out understanding. Understanding our needs and taking care of them eliminates stress and sickness. Understanding our children and helping them meet their needs makes our world a better place. Stepping out of the one sided dimension and participating in the two dimensional world brings us to three dimensional. I am enriched when I can learn from my children and understand them thus my life becomes fuller and more meaningful. Being disconnected from them is a cold, sad, angry and frustrating place. I choose to take the time to understand more deeply.
The noblest pleasure is the joy of understanding. -Leonardo da Vinci
I must understand that Jewel's physical condition makes learning more encompassing, first we have to physically put her in a position that will facilitate supportive and correct body posture. She can not yet do this by herself. Once this is done we have to be calm and make sure her needs are met, is she comfortable, is she thirsty, hungry, happy. We take out distractions; like people, things, noises that will steel her attention and set her tone and spasticity into motion. Once these needs have been met we patiently go on to help with the task like reading. We still want to process to be full of life, love, wonder, fun and organic. Learning should be fun! Then we start and stop, taking many breaks for her to catch her breath literally and for us to adjust our attitude remembering and understanding her needs and the process and desired outcome. Everything is a matter of choosing to be love, patient, peaceful and understanding.
It was character that got us out of bed, commitment that moved us into action, and discipline that enabled us to follow through. -Zig Ziglar
No law or ordinance is mightier than understanding. -Plato
Jewel's frustration sometimes comes from not being understood.
I am understanding her need is no different than mine.
We have made a wonderful break through with Jewel's reading.
I think it is timing, knowledge and the creative process of not giving up and trying alternate avenues.
In the past Jewel was not able to physically tolerate and support this position of being on all fours on the floor.
Being able to be on all fours with gravity's help and our minimal touch is what helped facilitate reading.
Patience, ... waiting for Jewel to respond, read or ask for help.
Her processing takes a little longer than ours, being aware of this and respecting her way.
Weight bearing is critical to being able to use your limbs in a functional movement, so this position is multi-faceted.
Jewel is able to listen to audio books from the library and follow the story line and comprehend, for this we are very grateful. She has just finished listening to Inkheart and Inkspell by Cornelia Funke, one more in the series to go. One of us is always sitting by her during the audio book, ready to answer questions when she says, "I do not get it" or laugh with her or be sad with her. We do not just put her in her wheel chair with audio book on and leave, this is important to know because a child should always have a parent or caregiver close by to connect with.
I still read books out-loud with my teens, and we talk and connect as we read along. A most memorable book that we read together was, To Kill a Mockingbird by Harper lee. We had taken three copies out of the library and daily took turns reading together. We cried and laughed together, I stopped and explained ideas, history, life and we connected and grew in understanding. A most best time that I savour in my heart forever.
Yesterday Jewel read Book 3 and book 4 in the Bob book series by Bobby Lynn Maslen, scholastic. I had her in her chair and she was very relaxed. Her breath was very shallow due to the irritation of all the sugar cane harvest burning. I applied some slight pressure to her head in a downward motion thus stabilizing her head and I held the book up in front of her. She gets a good laugh out of the illustrations and after she has had time to look and we comment briefly on the pictures we begin reading. I wait and help only when she says, "help". Book 3 was a review on Mat and she did well. Book 4 brought more help from me, Jewel was tired after this but her focus and attitude was strong and happy, willing to go to the page that said, The End.
Understanding takes time, but a worthy and important act for both her and I. How can we be kind, show sympathy, be considerate or sensitive with out understanding. Understanding our needs and taking care of them eliminates stress and sickness. Understanding our children and helping them meet their needs makes our world a better place. Stepping out of the one sided dimension and participating in the two dimensional world brings us to three dimensional. I am enriched when I can learn from my children and understand them thus my life becomes fuller and more meaningful. Being disconnected from them is a cold, sad, angry and frustrating place. I choose to take the time to understand more deeply.
The noblest pleasure is the joy of understanding. -Leonardo da Vinci
I must understand that Jewel's physical condition makes learning more encompassing, first we have to physically put her in a position that will facilitate supportive and correct body posture. She can not yet do this by herself. Once this is done we have to be calm and make sure her needs are met, is she comfortable, is she thirsty, hungry, happy. We take out distractions; like people, things, noises that will steel her attention and set her tone and spasticity into motion. Once these needs have been met we patiently go on to help with the task like reading. We still want to process to be full of life, love, wonder, fun and organic. Learning should be fun! Then we start and stop, taking many breaks for her to catch her breath literally and for us to adjust our attitude remembering and understanding her needs and the process and desired outcome. Everything is a matter of choosing to be love, patient, peaceful and understanding.
It was character that got us out of bed, commitment that moved us into action, and discipline that enabled us to follow through. -Zig Ziglar
Wednesday, August 17, 2011
Jewel read her first book today!
8/16/11 Tuesday
Wow, Jewel read her first book/s today.
I feel like it is still a dream, but regardless of how dreamy this reality is, the fact remains to be announced and celebrated that Jewel read her first book today!
The book/s are those of the Bob books by scholastic.
Raven and I had Jewel on all fours, with feet tucked under and on a wedge.
I shoved a rolled up towel in between her chest to help prop her up.
Raven was in charge of giving Jewel's head some help for stability since Jewel tends to sway her head back and forth.
We lay the book on the floor and I waited for her to read; Mat, this is the title for book 1 in collection 1.
My finger pointed to the word and we waited.
Jewel read and spoke, "Mat", I had to pinch myself!
The stick pictures were a distraction, so I covered them up until Jewel read the words, then uncovered the top of the page and we laughed, as we looked and spoke about the picture.
Then we moved on to the next page.
Book one repeats the word Mat on three consecutive pages, then we have Mat sat.
Sam.
Sam sat.
Mat sat. Sam sat.
Mat sat on Sam.
Sam sat on Mat.
Mat sat. Sam sat.
The End
and this was Jewel's very first book read all by herself in entirety at age 10 1/2.
Then Jewel wanted to read book 2 called Sam.
and this she read by herself, with us patiently waiting and helping her body and reminding her to breath deeply through her nose and to remember to say the last letter of the word.
She was on a roll and insisted on reading book 3 called Dot.
I gave her a few helps as she pushed through, lighting up when she read; "The End"
This left us all exhausted and exhilarated.
There have been days that I wanted to give up, but we continue to show Jewel alphabet flash cards and read to her daily. Our team has tirelessly continued to help teach Jewel, when I am tired or discouraged then Makena or another family member fill in and on many days she has all of us teaching her. Well done Gary, Makena, Raven and Jewel. Jewel listens to audio books and enjoys getting lost in a good book. She told me that she "really, really want to read" and she told Makena that she would like to, "hide under bed and read". Recently I wondered if it was fair to her to keep teaching her and encouraging her to read, and the answer is yes, keep dreaming and keep reaching for the stars and moon. As you walk daily in your tasks one day the fruit of your labour will blossom and bare fruit. Ask the questions and live the answers.
Wow, Jewel read her first book/s today.
I feel like it is still a dream, but regardless of how dreamy this reality is, the fact remains to be announced and celebrated that Jewel read her first book today!
The book/s are those of the Bob books by scholastic.
Raven and I had Jewel on all fours, with feet tucked under and on a wedge.
I shoved a rolled up towel in between her chest to help prop her up.
Raven was in charge of giving Jewel's head some help for stability since Jewel tends to sway her head back and forth.
We lay the book on the floor and I waited for her to read; Mat, this is the title for book 1 in collection 1.
My finger pointed to the word and we waited.
Jewel read and spoke, "Mat", I had to pinch myself!
The stick pictures were a distraction, so I covered them up until Jewel read the words, then uncovered the top of the page and we laughed, as we looked and spoke about the picture.
Then we moved on to the next page.
Book one repeats the word Mat on three consecutive pages, then we have Mat sat.
Sam.
Sam sat.
Mat sat. Sam sat.
Mat sat on Sam.
Sam sat on Mat.
Mat sat. Sam sat.
The End
and this was Jewel's very first book read all by herself in entirety at age 10 1/2.
Then Jewel wanted to read book 2 called Sam.
and this she read by herself, with us patiently waiting and helping her body and reminding her to breath deeply through her nose and to remember to say the last letter of the word.
She was on a roll and insisted on reading book 3 called Dot.
I gave her a few helps as she pushed through, lighting up when she read; "The End"
This left us all exhausted and exhilarated.
There have been days that I wanted to give up, but we continue to show Jewel alphabet flash cards and read to her daily. Our team has tirelessly continued to help teach Jewel, when I am tired or discouraged then Makena or another family member fill in and on many days she has all of us teaching her. Well done Gary, Makena, Raven and Jewel. Jewel listens to audio books and enjoys getting lost in a good book. She told me that she "really, really want to read" and she told Makena that she would like to, "hide under bed and read". Recently I wondered if it was fair to her to keep teaching her and encouraging her to read, and the answer is yes, keep dreaming and keep reaching for the stars and moon. As you walk daily in your tasks one day the fruit of your labour will blossom and bare fruit. Ask the questions and live the answers.
Thursday, August 4, 2011
crying and Anchors
8/4/11 Thursday morning, and I guess I am not getting up to blog as consistently as I used to.
I am in a different season and I feel my presents needed more as my girls are all growing up so fast.
I am trying to reflect and be present more than I used to.
I wanted to post about crying and routines.
I am reflecting the nature of crying, specifically with Jewel. I have found that she has different cries, one for pain and one for stress, one for temper and whining, one for sad and they are all slightly different. I knew immediately at the Shriners appointment that she was in pain and took her away from the doctor. In a mater of seconds I was able to find where it was hurting by doing a quick body check, for Jewel did not respond to my questioning of where she was hurting. You just have to trust your instincts with children who are not too verbal. I did not understand why she did not verbalize that her leg was hurting, or at least say, "owie" like I have tough her. You see the AFOs had pinched her calf and made two blood blister bruises. After asking the O/T her thoughts on this we both asked Jewel if she knew where the pain was coming from and she said, "no." The O/T said that it is possible that Jewel lives with pain daily and it is harder for her to isolate the source. She is getting better at telling me at times but I have to remember that she can not always tell me the origin of where the pain is coming from, so we practice staying calm and responding quickly with visible signs, asking questions and physically checking her body. I have to console her and remind her to breath and stay calm while I figure out what, where the pain is coming from. I can not imagine being in so much pain and not being able to tell someone immediately that my leg hurts. But crying is her way of communicating with us.
Then there is the stress crying, some times is it because we are not picking up on signs that we are placing too much pressure on Jewel, or that she is placing it on herself or that we are not giving her enough time to respond or we are not listening to her. When she cries due to stress it takes longer to calm her down for we have missed the signs and cues so we have to back track to what we were doing with her before the crying started. This process takes longer but well worth it getting to the source of the tears and frustration. We all need to be heard, we need to know that someone cares, that we are loved and worth being listened to.
In a busy day of scheduling and daily tasks it is easy to want to rush from event to home but I have to remember to slow down. That daily routine brings about more calm and ease for Jewel as far as her needs being met and her knowing what to expect next. Though having said that it is also enriching to take her out of this routine and bring her to a movie, a play or just go out with her into the world. This is where anchors come in, anchors will ground us and keep us safe. We have many types of anchors, some are for our mind, spirit, soul, and body. Meals and meal times are one of our important anchors, nap times for some but Jewel has never napped, that is another story. Healthy snacks and meals are what Jewel needs to anchor her day, and then we can change up the activities and some of the routines. She also needs her AFOs in the day, at night her swash buckle hip adductor brace and stander / gait trainer and wheel chair time during the day to support proper body alignment and function. Lots of water during the day is another anchor and if these anchors are in place she is a happy camper. I am trying to fit in more weight baring on her arms and more academics as far as her reading by her self. But a good day is built with anchors in place and if the winds blow hard and the waves come crashing the anchors will keep us grounded and in a good space.
I am in a different season and I feel my presents needed more as my girls are all growing up so fast.
I am trying to reflect and be present more than I used to.
I wanted to post about crying and routines.
I am reflecting the nature of crying, specifically with Jewel. I have found that she has different cries, one for pain and one for stress, one for temper and whining, one for sad and they are all slightly different. I knew immediately at the Shriners appointment that she was in pain and took her away from the doctor. In a mater of seconds I was able to find where it was hurting by doing a quick body check, for Jewel did not respond to my questioning of where she was hurting. You just have to trust your instincts with children who are not too verbal. I did not understand why she did not verbalize that her leg was hurting, or at least say, "owie" like I have tough her. You see the AFOs had pinched her calf and made two blood blister bruises. After asking the O/T her thoughts on this we both asked Jewel if she knew where the pain was coming from and she said, "no." The O/T said that it is possible that Jewel lives with pain daily and it is harder for her to isolate the source. She is getting better at telling me at times but I have to remember that she can not always tell me the origin of where the pain is coming from, so we practice staying calm and responding quickly with visible signs, asking questions and physically checking her body. I have to console her and remind her to breath and stay calm while I figure out what, where the pain is coming from. I can not imagine being in so much pain and not being able to tell someone immediately that my leg hurts. But crying is her way of communicating with us.
Then there is the stress crying, some times is it because we are not picking up on signs that we are placing too much pressure on Jewel, or that she is placing it on herself or that we are not giving her enough time to respond or we are not listening to her. When she cries due to stress it takes longer to calm her down for we have missed the signs and cues so we have to back track to what we were doing with her before the crying started. This process takes longer but well worth it getting to the source of the tears and frustration. We all need to be heard, we need to know that someone cares, that we are loved and worth being listened to.
In a busy day of scheduling and daily tasks it is easy to want to rush from event to home but I have to remember to slow down. That daily routine brings about more calm and ease for Jewel as far as her needs being met and her knowing what to expect next. Though having said that it is also enriching to take her out of this routine and bring her to a movie, a play or just go out with her into the world. This is where anchors come in, anchors will ground us and keep us safe. We have many types of anchors, some are for our mind, spirit, soul, and body. Meals and meal times are one of our important anchors, nap times for some but Jewel has never napped, that is another story. Healthy snacks and meals are what Jewel needs to anchor her day, and then we can change up the activities and some of the routines. She also needs her AFOs in the day, at night her swash buckle hip adductor brace and stander / gait trainer and wheel chair time during the day to support proper body alignment and function. Lots of water during the day is another anchor and if these anchors are in place she is a happy camper. I am trying to fit in more weight baring on her arms and more academics as far as her reading by her self. But a good day is built with anchors in place and if the winds blow hard and the waves come crashing the anchors will keep us grounded and in a good space.
Tuesday, August 2, 2011
life is good
8/1/11 August is here and I am back,
last week was wonderful because Jewel received her AFOs, they arrived in the mail and she has been waring them again, better posture less tone and spasticity. We are so grateful to Shriners for this! Thank you!
Her owie on her elbow has healed up nicely and daily life continues.
On sunday 7/31/11 Jewel got to ride Cookie Dough for at least 30min, it was a good ride. She has not been on the old horse since June since he had been sick. Her Aunty Cindy met us at the horses and we groomed him, cleaned his hooves, fed him and loved on him before we were sure he was ready to take a walk with Jewel. Cindy lead him, Raven was the back rider and I the side walker. These walks are so good for the horse as well. We just bought some senior food and rice bran for him, this helps keep on his weight. We bought some Canola oil as well to add 1/4 cup into his evening meal for weight gain and shinny coat. We always soak his alfalfa cubes for this helps him eat otherwise it just falls back out of his mouth. Jewel was a trooper, though she did not sit up the whole ride, she did not whine either, she slumped over for the last part, but I am assured from all the reading that this is still therapeutically beneficial for her hips. We hope to go riding soon.
Jewel is all into wanting a tower for her Rupunzel barbie so we will be making one out of cardboard and paper mache. Jewel is happy and healthy and enjoying her time with her Da and Sissies and her dog Grace. I miss having the speech therapist come and give direction and fine tune her progress from gross to refine. We have been blessed to have some of the finest therapists come through our home to help with Jewel and hopefully this will continue. Have a great day, today is another adventure for Jewel and her sisters always make life wonderful.
last week was wonderful because Jewel received her AFOs, they arrived in the mail and she has been waring them again, better posture less tone and spasticity. We are so grateful to Shriners for this! Thank you!
Her owie on her elbow has healed up nicely and daily life continues.
On sunday 7/31/11 Jewel got to ride Cookie Dough for at least 30min, it was a good ride. She has not been on the old horse since June since he had been sick. Her Aunty Cindy met us at the horses and we groomed him, cleaned his hooves, fed him and loved on him before we were sure he was ready to take a walk with Jewel. Cindy lead him, Raven was the back rider and I the side walker. These walks are so good for the horse as well. We just bought some senior food and rice bran for him, this helps keep on his weight. We bought some Canola oil as well to add 1/4 cup into his evening meal for weight gain and shinny coat. We always soak his alfalfa cubes for this helps him eat otherwise it just falls back out of his mouth. Jewel was a trooper, though she did not sit up the whole ride, she did not whine either, she slumped over for the last part, but I am assured from all the reading that this is still therapeutically beneficial for her hips. We hope to go riding soon.
Jewel is all into wanting a tower for her Rupunzel barbie so we will be making one out of cardboard and paper mache. Jewel is happy and healthy and enjoying her time with her Da and Sissies and her dog Grace. I miss having the speech therapist come and give direction and fine tune her progress from gross to refine. We have been blessed to have some of the finest therapists come through our home to help with Jewel and hopefully this will continue. Have a great day, today is another adventure for Jewel and her sisters always make life wonderful.
Wednesday, July 27, 2011
Shriners Children's hospital locations
Mexico Mexico City, MX Av. del Iman No. 257, Col. Pedregal de Santa Ursula, Deleg. Coyoacan, 04600, Mexico, D.F. 011-52-555-424-7850 | ||
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