5/31/11 Tuesday is last day of May
It truly has been a full month, filled with lots of gifts.
Jewel awoke with another dry overnight diaper, more dry diapers than not!
They say that gratitude brings us into the present moment.
I am grateful for my daughters, Makena, Raven and Jeweliana and their bubbling personalities, their vibrance, and their creativity. I am grateful for my children's energy and good health. I am grateful for the silence and the sounds of life, to be able to hear my children's voices and giggles. I am grateful to hear Jewel's voice coming in clearly. I am grateful for Jewel's dry overnight diapers, her ability to control her bladder and bowel movements, her ability to tell us she needs to go to the bathroom, her ability to eat, drink and breath. I am grateful for Jeweliana's gains and positive attitude. I cherish our time/s together for each moment great or hard is a gift. I am thankful that we live in a place that values family and children no matter of their ability. I am grateful that my girls and I watch each others backs, that I have fun loving girl friends and that I belong to HSLDA who look out for our freedom to homeschool. I am grateful for my great clients who support me. I am grateful for our therapists. I am grateful for the dreams we have dreamt that have brought us where we are today. I am grateful for a mind and heart that believes in things yet not seen and for believing in the endless possibilities available to us. I am grateful for Jewel's desire to ride in the Rodeo fourth of July parade. I am grateful for strength, joy and provisions for today :)
"Dreams are the seeds of change. Nothing ever grows without a seed, and nothing ever changes without a dream." Debby Boone
Our O/T session was good. Jewel got to stretch over a very large medicine ball. We were able to put her in some nice positions with the ball supporting and stretching her body. We were able to look at Jewel's chair and her needs. I am told that a wheel chair should give 90 degree ankle, 90 degree knee and 90 degree hip position and support. We will be researching a new chair for her. The therapist said that Jewel's diagnosis is spastic cerebral palsy with athetoid and left hip subluxation, shallow acetabulum. She also has tonic neck reflexes and a bunch of other reflexes. This will help us with the directions of therapy but we will never limit Jewel and our hopes, dreams and expectations for her xx
Tuesday, May 31, 2011
Monday, May 30, 2011
sprouting
5/30/11 Monday
Jewel went into her stander for 1 hr 40 min., yes, wearing her AFO's and her sneakers. No sneakers in stander. Jewel went into her gait trainer for 2 hours! She had her sneakers on and music to motivate, though she did not walk the whole time. She has been doing great in her wheel chair and equipment.
We are noticing more speech, clearer but still short 2-3 word phrases! I notice if we pause enough in a conversation she interjects with comments here and there that are totally appropriate to the conversation and a bit humorous at times. We have noticed that Jewels hands are more open and softer looking, more functional. We are so happy for this! Things are a sprouting :)
Memorial day holiday, libraries are closed! No new Harry Potter for Jewel, so it is time to break out the new book on CD I got for her. Yolonda's Genius by Carol Fenner, an unabridged production - read by Novella Nelson. Riveting and captivating, Novella hooked Jewel right in with her velvet voice and the story line is tough and real! :) Yes we love books and books on tape/CD. Thank you Kathleen for this recommendation.
We went to check up on our garden and on Cookie Dough and all is well. We bought him some hoof conditioner and a comb. The owner was tending the garden and I am pleased to report that seeds have sprouted. Yes, water melon, sweet potatoes, sunflowers and broccoli have sprouted, we have caught the gardening fever. The owner said that he found out more information on Cookie Dough, we will talk more to him later, because we want to write a story about this incredible horse!
We have found a home for Grace, (she is Jewel's companion therapy dog), for the two days that Jewel and I will be at Camp Imua. This is a huge relief to have Grace taken care of, she is my furry daughter :) We love her so much and she is an important part of our family, she is a huge part of Jewel's world. Makena and Raven will be there volunteering for the whole week. I can only go for two days, for I need to go back to work. We got another duffel bag for Raven for apparently she needs to bring more stuff! We will be shopping for snacks soon, we need to pack treats that will help the girls stay energized and camp only serves three meals a day, which will not suffice. We have hollow legs and need to replenish, it is also comforting for the girls to have some treats and they always share with their cabin mates and their campers, if they are allowed to eat the treats.
Makena did another photo shoot today, it was of an 18 month old. Raven assisted as she always does. They are an amazing talented team and I am impressed by Makena's skill and progress and her ability to make money. Go girls!
Jewel went into her stander for 1 hr 40 min., yes, wearing her AFO's and her sneakers. No sneakers in stander. Jewel went into her gait trainer for 2 hours! She had her sneakers on and music to motivate, though she did not walk the whole time. She has been doing great in her wheel chair and equipment.
We are noticing more speech, clearer but still short 2-3 word phrases! I notice if we pause enough in a conversation she interjects with comments here and there that are totally appropriate to the conversation and a bit humorous at times. We have noticed that Jewels hands are more open and softer looking, more functional. We are so happy for this! Things are a sprouting :)
Memorial day holiday, libraries are closed! No new Harry Potter for Jewel, so it is time to break out the new book on CD I got for her. Yolonda's Genius by Carol Fenner, an unabridged production - read by Novella Nelson. Riveting and captivating, Novella hooked Jewel right in with her velvet voice and the story line is tough and real! :) Yes we love books and books on tape/CD. Thank you Kathleen for this recommendation.
We went to check up on our garden and on Cookie Dough and all is well. We bought him some hoof conditioner and a comb. The owner was tending the garden and I am pleased to report that seeds have sprouted. Yes, water melon, sweet potatoes, sunflowers and broccoli have sprouted, we have caught the gardening fever. The owner said that he found out more information on Cookie Dough, we will talk more to him later, because we want to write a story about this incredible horse!
We have found a home for Grace, (she is Jewel's companion therapy dog), for the two days that Jewel and I will be at Camp Imua. This is a huge relief to have Grace taken care of, she is my furry daughter :) We love her so much and she is an important part of our family, she is a huge part of Jewel's world. Makena and Raven will be there volunteering for the whole week. I can only go for two days, for I need to go back to work. We got another duffel bag for Raven for apparently she needs to bring more stuff! We will be shopping for snacks soon, we need to pack treats that will help the girls stay energized and camp only serves three meals a day, which will not suffice. We have hollow legs and need to replenish, it is also comforting for the girls to have some treats and they always share with their cabin mates and their campers, if they are allowed to eat the treats.
Makena did another photo shoot today, it was of an 18 month old. Raven assisted as she always does. They are an amazing talented team and I am impressed by Makena's skill and progress and her ability to make money. Go girls!
if Life gives you lemmons
5/30/11 Friday
It is the Beatles kinda morning, and it is setting the tone of the morning.
I love it when Jewel shows delight in music and I love that she knows the words and always tries to sing, she is a bit slow but she loves it.
I wanted to talk about family dynamics. I believe we all have special needs and quirks, the more members to a family the more prevalent this is. I am always trying to respect the fact that I have three daughters and to honor their needs. Truthfully, to have a child that does not walk, or use their hands to self feet, this child takes up most of your energy and it can get consuming. Balance, I am always striving to balance but lets face it this child with cerebral palsy just has more needs and we all need to pitch in and help. The whole family and the community where necessary. I am not saying that the other girls have any less worth or need less love or concern. No, they are all equally important and worthy of love and help in their individual areas of need. One of my great burdens is how am I going to keep on doing what I need to do when the older girls are off to college doing their own life. My husband is an alcoholic and sometimes does not come home. There I said it, being totally transparent. Why did I share this, well it is the elephant in our home that no one speaks about. Well actually we do talk about it we are tired of it. We never talk about it to others, Oh no, we pretend that everything is peachy. It is my thorn, how can I rely on someone who is not there, someone who is sometimes there, someone who forgets to come home and take his children to an event, put his girls to bed. It is something that is a reality in a lot of homes and if you have a special needs child you are not excluded from the realities of life. I wish I got special consideration and a pass from God that made for a healthy family with healthy parents where special children were concerned. It is the women of this family who have kept this unit together, since my pregnancy with Jewel I have had to rely on my daughters ages 6 and 7 to help me. Crazy hey, but please do not judge us. I share because it is a deep pain and in constant thoughts, dealings and prayers. I share because I want that special family who reads this to know that they are not alone. I have no answers. I have found a way to keep my family together by doing it as a team, though if we did not have this problem of a Da who is some times here and some times not, I would still advocate doing family as a team. So if you are a relative, please fill in the gap and if you are a neighbor and know a single mother/father or a family with a special child please come along side them and fill in the gap. I want to thank all my family members and friends who have helped us. There are so many things that we have been blessed with. Thank you for all the rides picking up my older daughters, and dropping them off, and the constant covering of prayers. Car pooling with us and inviting us to your parties and homes for tea. The work referrals, the equipment for Jewel, the groceries left at our door and the list goes on. We have lived with the feeling of shame because it is hard and feels like a dirty secret that my husband is an addict. He is a super guy when he is sober and around. Life happens while you are making plans and having fun and in pain but know that you are not alone if you are reading this and in my shoes. There are seasons of giving and seasons of receiving. Remember that you are worthy of love, your are stronger and braver than you think and always make lemon aide or lemon meringue pie if life gives you lemons. Today I rest in the belief that God is in charge of our family and that His perfect plan is in place.
It is the Beatles kinda morning, and it is setting the tone of the morning.
I love it when Jewel shows delight in music and I love that she knows the words and always tries to sing, she is a bit slow but she loves it.
I wanted to talk about family dynamics. I believe we all have special needs and quirks, the more members to a family the more prevalent this is. I am always trying to respect the fact that I have three daughters and to honor their needs. Truthfully, to have a child that does not walk, or use their hands to self feet, this child takes up most of your energy and it can get consuming. Balance, I am always striving to balance but lets face it this child with cerebral palsy just has more needs and we all need to pitch in and help. The whole family and the community where necessary. I am not saying that the other girls have any less worth or need less love or concern. No, they are all equally important and worthy of love and help in their individual areas of need. One of my great burdens is how am I going to keep on doing what I need to do when the older girls are off to college doing their own life. My husband is an alcoholic and sometimes does not come home. There I said it, being totally transparent. Why did I share this, well it is the elephant in our home that no one speaks about. Well actually we do talk about it we are tired of it. We never talk about it to others, Oh no, we pretend that everything is peachy. It is my thorn, how can I rely on someone who is not there, someone who is sometimes there, someone who forgets to come home and take his children to an event, put his girls to bed. It is something that is a reality in a lot of homes and if you have a special needs child you are not excluded from the realities of life. I wish I got special consideration and a pass from God that made for a healthy family with healthy parents where special children were concerned. It is the women of this family who have kept this unit together, since my pregnancy with Jewel I have had to rely on my daughters ages 6 and 7 to help me. Crazy hey, but please do not judge us. I share because it is a deep pain and in constant thoughts, dealings and prayers. I share because I want that special family who reads this to know that they are not alone. I have no answers. I have found a way to keep my family together by doing it as a team, though if we did not have this problem of a Da who is some times here and some times not, I would still advocate doing family as a team. So if you are a relative, please fill in the gap and if you are a neighbor and know a single mother/father or a family with a special child please come along side them and fill in the gap. I want to thank all my family members and friends who have helped us. There are so many things that we have been blessed with. Thank you for all the rides picking up my older daughters, and dropping them off, and the constant covering of prayers. Car pooling with us and inviting us to your parties and homes for tea. The work referrals, the equipment for Jewel, the groceries left at our door and the list goes on. We have lived with the feeling of shame because it is hard and feels like a dirty secret that my husband is an addict. He is a super guy when he is sober and around. Life happens while you are making plans and having fun and in pain but know that you are not alone if you are reading this and in my shoes. There are seasons of giving and seasons of receiving. Remember that you are worthy of love, your are stronger and braver than you think and always make lemon aide or lemon meringue pie if life gives you lemons. Today I rest in the belief that God is in charge of our family and that His perfect plan is in place.
Friends and summer
5/29/11 Sunday
I went to the acupuncturist to see how it would be, and I think I will get a lot of benefit just for my health and to get balanced. Sam is good, I can not imagine how Jewel will do when we get to take her for she is in constant motion and she gets very tight. He said not to worry, we will deal with that when we get to that point in time at her session. He encouraged me to stay in the present and not project fears into the future or go to negative places from the past. I had a great relaxing session and will go again. Sam said if the needles do not work for Jewel then he will use a form of acupuncture.
Jewel's friend got to come to visit with her at the pool today. We roasted corn,potatoes, sweet potatoes and had hot dogs. The girls are so good together, Ava and Jewel are real friends. They swam and Raven held Jewel in the pool and her whole body got so relaxed, she does not have to fight gravity as much in the pool especially the parts in the water. Then the O/T arrived and we did the aqua therapy, it was great to see Jewel's hands so open and all in all it was a good session. Jewel seems to get frustrated at some points and it is hard for her to move on beyond the frustration or anger at times. It is also challenging for us to under stand the source of these emotions at times.We helped her weight bare on her arms on a boogie board and there was a lot of support and encouragements, especially since her sisters and friend were all there. Jewel gets very hurt when her Da says he will be there or he will be back and he does not show. She is amazingly intelligent and sensitive in spite of her physical disability. I want to protect my children from everything and unfortunately I can not. Makena and Raven's friends who are visiting came by and they had a lot of fun together, the girls are sweet and nice and together they are all in their element talking about books, dreams, college and stuff. What I love about Anna, Kate, and Aspen the most is that they love their families especially their siblings, so they understand and respect our closeness and how Makena and Raven always watch out for Jewel. These girls always talk directly to Jewel and I love them all. Last night Makena told Jewel not to sass her and they spoke about Jewel's friend. Makena asked Jewel if she saw her friend sass her mom and Jewels reply was, "no, I turned my head." She always cracks us up, always a funny girl. We made too much food and will have a lot of left overs, though the water melon sure got eaten up fast :) Friends and summer, a perfect combination.
I went to the acupuncturist to see how it would be, and I think I will get a lot of benefit just for my health and to get balanced. Sam is good, I can not imagine how Jewel will do when we get to take her for she is in constant motion and she gets very tight. He said not to worry, we will deal with that when we get to that point in time at her session. He encouraged me to stay in the present and not project fears into the future or go to negative places from the past. I had a great relaxing session and will go again. Sam said if the needles do not work for Jewel then he will use a form of acupuncture.
Jewel's friend got to come to visit with her at the pool today. We roasted corn,potatoes, sweet potatoes and had hot dogs. The girls are so good together, Ava and Jewel are real friends. They swam and Raven held Jewel in the pool and her whole body got so relaxed, she does not have to fight gravity as much in the pool especially the parts in the water. Then the O/T arrived and we did the aqua therapy, it was great to see Jewel's hands so open and all in all it was a good session. Jewel seems to get frustrated at some points and it is hard for her to move on beyond the frustration or anger at times. It is also challenging for us to under stand the source of these emotions at times.We helped her weight bare on her arms on a boogie board and there was a lot of support and encouragements, especially since her sisters and friend were all there. Jewel gets very hurt when her Da says he will be there or he will be back and he does not show. She is amazingly intelligent and sensitive in spite of her physical disability. I want to protect my children from everything and unfortunately I can not. Makena and Raven's friends who are visiting came by and they had a lot of fun together, the girls are sweet and nice and together they are all in their element talking about books, dreams, college and stuff. What I love about Anna, Kate, and Aspen the most is that they love their families especially their siblings, so they understand and respect our closeness and how Makena and Raven always watch out for Jewel. These girls always talk directly to Jewel and I love them all. Last night Makena told Jewel not to sass her and they spoke about Jewel's friend. Makena asked Jewel if she saw her friend sass her mom and Jewels reply was, "no, I turned my head." She always cracks us up, always a funny girl. We made too much food and will have a lot of left overs, though the water melon sure got eaten up fast :) Friends and summer, a perfect combination.
weekends together
5/28/11 Saturday
It seems like our schedule has sped up since it is the end of school year, graduations and summer.
We are trying to cram everything in and these times are fun and exciting especially for the girls.
We bought more senior horse food for Cookie Dough and Rice bran for weight gain, you see older horses like Cookie Dough have a hard time keeping their weight on, especially since he has lost some teeth and we have to soak all his food. Cookie Dough can not just forage and eat hay and grass any more because the grass just ends up falling out of his mouth in big clumps. Older horses need extra care to keep the weight on, it is not healthy to have an over weight horse either. Some passing tourists have reported Cookie Dough to the animal shelter as been to skinny, but they know he is old and that we are feeding him. I was told that the rule of thumb was that if you can see an animals ribs then they are too thin and malnourished. Rest assured that Cookie Dough is not malnourished, and we give him vitamins in his food mix.
One of the big girls close friend just flew in with her family and they are so exceited to spend time with her. How much can you cram into a week is the question.
We decided to take the whole family to see some of Makena and Raven's friends graduate from high school. I was going to take the easy road and just split us up or do one event as a family and then split up taking Jewel home, but the older kids wouldn't hear of it. Makena said that it was important for Jewel to get out and learn how to behave and interact, and she was right. I was just thinking of the easy way for us all. I get stuck in our routine, I like Jewel's food and stuff to be close by, I guess we all grow when we are not in our comfort zones. The graduation was beautiful as always and far too long for Jewel, I fed her keeping her happy until the food was gone and she became unsettled. The graduation was outdoors right on the grass cupping the beach and ocean, a perfect setting, but the sun became to much and since it was not about Jewel or an entertaining show she got board fast. So I pushed her in her wheel chair taking a nice leisurely walk, we ended up passing a Luau by the hotel and she far preferred watching the polynesian dancers. It is always tiring to take Jewel out to events, but being out doors made it worth it. We put a diaper on her knowing that the bathrooms would not be close, brought lots of water but apparently not enough food. All in all Jewel did well and was happy to be with us taking in the new sights. After graduation we went to one of the after parties. We stayed until 10 pm and she got to eat lots of good food, be with her family and other families and even go swimming with the kids. Makena took Jewel into the pool and they had lots of fun together, these moments are so special. Jewel wants to be included and to do what her sisters and the other children are doing, this is not always possible and when we can get her to join in on the fun, she and we are very happy. Driving home we saw large dear, and a huge buck. We have a lot of dear on this part of the Island, they come out at night and it can be quite dangerous when they run in front of your car. We pulled over to see if Makena could get some pictures, and Jewel yelled, "dangerous," and "stay in car, scary." We did not let Makena out in the dark and we were not able to spot the dear again. Such happy moments when everyone helps out and this is when doing family as a team makes it magical.
It seems like our schedule has sped up since it is the end of school year, graduations and summer.
We are trying to cram everything in and these times are fun and exciting especially for the girls.
We bought more senior horse food for Cookie Dough and Rice bran for weight gain, you see older horses like Cookie Dough have a hard time keeping their weight on, especially since he has lost some teeth and we have to soak all his food. Cookie Dough can not just forage and eat hay and grass any more because the grass just ends up falling out of his mouth in big clumps. Older horses need extra care to keep the weight on, it is not healthy to have an over weight horse either. Some passing tourists have reported Cookie Dough to the animal shelter as been to skinny, but they know he is old and that we are feeding him. I was told that the rule of thumb was that if you can see an animals ribs then they are too thin and malnourished. Rest assured that Cookie Dough is not malnourished, and we give him vitamins in his food mix.
One of the big girls close friend just flew in with her family and they are so exceited to spend time with her. How much can you cram into a week is the question.
We decided to take the whole family to see some of Makena and Raven's friends graduate from high school. I was going to take the easy road and just split us up or do one event as a family and then split up taking Jewel home, but the older kids wouldn't hear of it. Makena said that it was important for Jewel to get out and learn how to behave and interact, and she was right. I was just thinking of the easy way for us all. I get stuck in our routine, I like Jewel's food and stuff to be close by, I guess we all grow when we are not in our comfort zones. The graduation was beautiful as always and far too long for Jewel, I fed her keeping her happy until the food was gone and she became unsettled. The graduation was outdoors right on the grass cupping the beach and ocean, a perfect setting, but the sun became to much and since it was not about Jewel or an entertaining show she got board fast. So I pushed her in her wheel chair taking a nice leisurely walk, we ended up passing a Luau by the hotel and she far preferred watching the polynesian dancers. It is always tiring to take Jewel out to events, but being out doors made it worth it. We put a diaper on her knowing that the bathrooms would not be close, brought lots of water but apparently not enough food. All in all Jewel did well and was happy to be with us taking in the new sights. After graduation we went to one of the after parties. We stayed until 10 pm and she got to eat lots of good food, be with her family and other families and even go swimming with the kids. Makena took Jewel into the pool and they had lots of fun together, these moments are so special. Jewel wants to be included and to do what her sisters and the other children are doing, this is not always possible and when we can get her to join in on the fun, she and we are very happy. Driving home we saw large dear, and a huge buck. We have a lot of dear on this part of the Island, they come out at night and it can be quite dangerous when they run in front of your car. We pulled over to see if Makena could get some pictures, and Jewel yelled, "dangerous," and "stay in car, scary." We did not let Makena out in the dark and we were not able to spot the dear again. Such happy moments when everyone helps out and this is when doing family as a team makes it magical.
Saturday, May 28, 2011
caring for each other
5/27/11 Friday
7:30am and Makena and Raven have their dental checkups and cleaning. Since having Jewel we always take the first appointment so we will avoid the public and germs.
I am trying to teach all the girls the importance of self care, regular hair trims, regular dental check ups and eye exams. Our bodies need to be healthy and maintained, I have not been a good example for I leave my self till last, most of the time I put the money towards therapy and neglect my teeth and self. Makena does not want her eyes checked and this has brought some tears, emotions, short words and passion. Jewel said to Makena, "be happy". Jewel always adds depth and love and humor to our lives. She is always asking, "you ok?", "you sad", or " your teeth hurt?" Such compassion and caring, nothing slips passed this girl.
I have submitted out long distance evaluation to snowdrop.com and I am looking forward to their help.
Raven and I took Jewel back to the optometrist to get the photo for the other eye, and suddenly she burst out crying and this was the end of the visit. All the conversations with Makena have scared Jewel about the eye doctor and created some anxiety which I failed to notice. So we will try another day.
1pm and we met up with Carrie and her daughters, she is so great with horses. Jewel said,"hola" to Carrie's girls and Makena let Jewel know that they may not understand this so she said,"hello". I love how Jewel's social skills are improving, she used to be very shy and just grind her teeth. Carrie is a horse whisperer and the horses love her, they are prey animals and feel so safe and content around Carrie because she is confident and the leader around them. She led Cookie Dough while Raven and Jewel rode for 23 minutes, and it was a great Hippo-therapy session. We took care of all the horses, groomed billy and Java. Washed water buckets and topped up water. The mini horse summer is on a diet, she is as sweet as pie. Cookie Dough tripped a few times and since Carrie was there reassuring me, we were abel to carry on. With out her there I would have stopped five minutes into the ride. From my heart to yours, thank you Carrie!
Jewel said,"Awana's tonight", she is able to anticipate and keep track of the days of the week and the events they bring, this is so wonderful.
Last Awana club night for this season, it brought pizza and fun times. We forgot to bring Jewel's water cup or extra bendy straws. :( Jewel was not able to drink out of the Styrofoam cup, she has been trained not to drink if she does not feel it is safe. We have explained aspirating to her and how dangerous this is, Jewel needs to be calm and in the proper position to take water in safely. Jewel is always thirsty and she drinks as if this is the last water on earth. She hardly ever seems to quench her thirst, we must watch that she is not dehydrated. How sad that we forgot her cup in the hustle and bustle of getting to club. It was hot at the club and her sadness and desire for water took over, until another mommy rescued the evening. She found two skinny straws for mixing coffee with and voila it worked and Jewel got her much needed water safely and the evening commenced. Thank you! Jewel got a card from one of her friends which made her feel very special. The clubbers collected $78.00 for Camp Imua! What a great bunch of kids!
-"As we mature spiritually, we exhibit a growing capacity to care for and appreciate one another in the body of Christ, regardless of our differences. Being part of an agenda beyond ourselves liberates up to complete each other rather than compete with each other. " - Joseph Stowell
7:30am and Makena and Raven have their dental checkups and cleaning. Since having Jewel we always take the first appointment so we will avoid the public and germs.
I am trying to teach all the girls the importance of self care, regular hair trims, regular dental check ups and eye exams. Our bodies need to be healthy and maintained, I have not been a good example for I leave my self till last, most of the time I put the money towards therapy and neglect my teeth and self. Makena does not want her eyes checked and this has brought some tears, emotions, short words and passion. Jewel said to Makena, "be happy". Jewel always adds depth and love and humor to our lives. She is always asking, "you ok?", "you sad", or " your teeth hurt?" Such compassion and caring, nothing slips passed this girl.
I have submitted out long distance evaluation to snowdrop.com and I am looking forward to their help.
Raven and I took Jewel back to the optometrist to get the photo for the other eye, and suddenly she burst out crying and this was the end of the visit. All the conversations with Makena have scared Jewel about the eye doctor and created some anxiety which I failed to notice. So we will try another day.
1pm and we met up with Carrie and her daughters, she is so great with horses. Jewel said,"hola" to Carrie's girls and Makena let Jewel know that they may not understand this so she said,"hello". I love how Jewel's social skills are improving, she used to be very shy and just grind her teeth. Carrie is a horse whisperer and the horses love her, they are prey animals and feel so safe and content around Carrie because she is confident and the leader around them. She led Cookie Dough while Raven and Jewel rode for 23 minutes, and it was a great Hippo-therapy session. We took care of all the horses, groomed billy and Java. Washed water buckets and topped up water. The mini horse summer is on a diet, she is as sweet as pie. Cookie Dough tripped a few times and since Carrie was there reassuring me, we were abel to carry on. With out her there I would have stopped five minutes into the ride. From my heart to yours, thank you Carrie!
Jewel said,"Awana's tonight", she is able to anticipate and keep track of the days of the week and the events they bring, this is so wonderful.
Last Awana club night for this season, it brought pizza and fun times. We forgot to bring Jewel's water cup or extra bendy straws. :( Jewel was not able to drink out of the Styrofoam cup, she has been trained not to drink if she does not feel it is safe. We have explained aspirating to her and how dangerous this is, Jewel needs to be calm and in the proper position to take water in safely. Jewel is always thirsty and she drinks as if this is the last water on earth. She hardly ever seems to quench her thirst, we must watch that she is not dehydrated. How sad that we forgot her cup in the hustle and bustle of getting to club. It was hot at the club and her sadness and desire for water took over, until another mommy rescued the evening. She found two skinny straws for mixing coffee with and voila it worked and Jewel got her much needed water safely and the evening commenced. Thank you! Jewel got a card from one of her friends which made her feel very special. The clubbers collected $78.00 for Camp Imua! What a great bunch of kids!
-"As we mature spiritually, we exhibit a growing capacity to care for and appreciate one another in the body of Christ, regardless of our differences. Being part of an agenda beyond ourselves liberates up to complete each other rather than compete with each other. " - Joseph Stowell
bubble bath
5/26/11 Thursday
Thursday brought a full day that had wings lightening the load.
I had to switch up my work schedule and clean 2-3 houses each day earlier this week but in return I got Thursday off to spend at home!
Jewel awoke with a dry diaper, Yes! I took her to the bathroom after she awoke and she said, "bubble bath", and I was thrilled to have understood what she said, so next we took a bubble bath :)
It is nice to be able to do this and not say, 'no' because I have to go to work. I am very grateful for my work, I have the nicest client in the world and I love them. I am grateful that Jewel lives at home with us and that we can communally take care of her.
Then Jewel went to her body worker with her Da and Raven.
Makena and I stayed behind to clean up, do chores and just spend the morning together.
I have amazing daughters and my life and heart are full, they are a gift and the aroma of life xoxoxo
Then upon Jewel's return it was old fashioned 10 minute oatmeal and organic yogurt, with peppermint tea.
The tea was not a hit, but six sips through a straw are better than none, since her body worker recommends her drinking this to aid with her lungs and get rid of her congestion. She does not like the tea.
Her O/T came by and we had a session. Jewel was very relaxed after her session with John the body worker and it made the occupational therapy session so much more manageable. Angela directed me as I worked with Jewel during the whole session. Still working on basics, gentle movements as sitting and rocking Jewel to create relaxation, working on stretching and seperating torso from trunk in slow diagonal stretches and as you feel the muscles release, the O/T would stretch Jewels arm, a four armed maneuver. This is then followed by diagonal arm movements, as in encouraging Jewel to reach for her Barbie doll with out loosing her 'calm and relaxed' body. We do as much as we can when we can with Jewel with out allowing the tasks to consume our life. Searching for balance and trying to always remember the lessons I am learning. Jewel teaches me to slow down and enjoy the moment what ever that is. She has taught us all so much and in return her sissies have taught her lots and there is so much love and joy amongst the girls. The older girls have needs and wants that need to be met and some how we make it through another day. It is always a balancing act. Jewel teaches me to look deeper at what we call "simple tasks" and into my own heart. Thank you Jewel, thank you for your light and joy.
I took Jewel to get her bangs/fringe trimmed and Makena's hair trimmed as well. The salon workers know and love my girls, it is always a special event and treat for them. I did not wait as long this time, for too soon I know that I would be hearing Jewel say, "cut hair". Then off to the eye doctor for Jewel's eye exam. I prepared her for the visit by telling her what to expect, "that we would be there the whole time, and this was not a test, we are just checking the health of your eyes." Jewel did so well, she chose the symbols instead of the alphabet. The optometrist was so patient, she waited for Jewel's reply, gold star! When it came to the picture of the horse, Jewel shouted out, "Cookie Dough", the doctor looked at me confused by the response and we explained that Jewel's horse's name is Cookie Dough. Her Da was trying to give Jewel help to the correct pictures, and I had to remind them both that this was not a test of right and wrong. I talked and directed Jewel through the visit, reminding her to, "breath and relax." Jewel saw the computer photos of her Da's eyes and she chose to get her eyes photographed as well. It was challenging to co-ordinate getting her to kneel on the chair and hold her head into the slot and hold her hands while she is trying to tear the machine apart. We managed to get one photo of her eye and this was all she was able to do. The visit was positive and her eyes are doing well, and the photo shows a strong healthy eye! Whoop! Then off to the horses and garden.
Jewel loves being at the garden, even though I have to hold her up and her head flops about. Raven loves being there as well and the two of them talk as Raven waters and feeds the horses. Most times I am verbally cueing Jewel, " stand up on both feet, push down on flat feet, both feet, yes!, that's it, now make like a strong tree, put your roots deep into the ground and push up, lift you head, great work Jewel, ... and on it goes" I am enjoying these moments more since I am not grading them. Just learning to slow down, breath in the moment and know that this is good. When Jewel says, "I do", I say ,"yes you can, right now we are getting you stronger so you can do it on your own later", this is far better than a NO.
Jewel has finished listening to book four from the Harry Potter series. She enjoys laughing and talking about the books with her sisters. A full day of being together is the best day on the planet! xx I love my children. <3
Thursday brought a full day that had wings lightening the load.
I had to switch up my work schedule and clean 2-3 houses each day earlier this week but in return I got Thursday off to spend at home!
Jewel awoke with a dry diaper, Yes! I took her to the bathroom after she awoke and she said, "bubble bath", and I was thrilled to have understood what she said, so next we took a bubble bath :)
It is nice to be able to do this and not say, 'no' because I have to go to work. I am very grateful for my work, I have the nicest client in the world and I love them. I am grateful that Jewel lives at home with us and that we can communally take care of her.
Then Jewel went to her body worker with her Da and Raven.
Makena and I stayed behind to clean up, do chores and just spend the morning together.
I have amazing daughters and my life and heart are full, they are a gift and the aroma of life xoxoxo
Then upon Jewel's return it was old fashioned 10 minute oatmeal and organic yogurt, with peppermint tea.
The tea was not a hit, but six sips through a straw are better than none, since her body worker recommends her drinking this to aid with her lungs and get rid of her congestion. She does not like the tea.
Her O/T came by and we had a session. Jewel was very relaxed after her session with John the body worker and it made the occupational therapy session so much more manageable. Angela directed me as I worked with Jewel during the whole session. Still working on basics, gentle movements as sitting and rocking Jewel to create relaxation, working on stretching and seperating torso from trunk in slow diagonal stretches and as you feel the muscles release, the O/T would stretch Jewels arm, a four armed maneuver. This is then followed by diagonal arm movements, as in encouraging Jewel to reach for her Barbie doll with out loosing her 'calm and relaxed' body. We do as much as we can when we can with Jewel with out allowing the tasks to consume our life. Searching for balance and trying to always remember the lessons I am learning. Jewel teaches me to slow down and enjoy the moment what ever that is. She has taught us all so much and in return her sissies have taught her lots and there is so much love and joy amongst the girls. The older girls have needs and wants that need to be met and some how we make it through another day. It is always a balancing act. Jewel teaches me to look deeper at what we call "simple tasks" and into my own heart. Thank you Jewel, thank you for your light and joy.
I took Jewel to get her bangs/fringe trimmed and Makena's hair trimmed as well. The salon workers know and love my girls, it is always a special event and treat for them. I did not wait as long this time, for too soon I know that I would be hearing Jewel say, "cut hair". Then off to the eye doctor for Jewel's eye exam. I prepared her for the visit by telling her what to expect, "that we would be there the whole time, and this was not a test, we are just checking the health of your eyes." Jewel did so well, she chose the symbols instead of the alphabet. The optometrist was so patient, she waited for Jewel's reply, gold star! When it came to the picture of the horse, Jewel shouted out, "Cookie Dough", the doctor looked at me confused by the response and we explained that Jewel's horse's name is Cookie Dough. Her Da was trying to give Jewel help to the correct pictures, and I had to remind them both that this was not a test of right and wrong. I talked and directed Jewel through the visit, reminding her to, "breath and relax." Jewel saw the computer photos of her Da's eyes and she chose to get her eyes photographed as well. It was challenging to co-ordinate getting her to kneel on the chair and hold her head into the slot and hold her hands while she is trying to tear the machine apart. We managed to get one photo of her eye and this was all she was able to do. The visit was positive and her eyes are doing well, and the photo shows a strong healthy eye! Whoop! Then off to the horses and garden.
Jewel loves being at the garden, even though I have to hold her up and her head flops about. Raven loves being there as well and the two of them talk as Raven waters and feeds the horses. Most times I am verbally cueing Jewel, " stand up on both feet, push down on flat feet, both feet, yes!, that's it, now make like a strong tree, put your roots deep into the ground and push up, lift you head, great work Jewel, ... and on it goes" I am enjoying these moments more since I am not grading them. Just learning to slow down, breath in the moment and know that this is good. When Jewel says, "I do", I say ,"yes you can, right now we are getting you stronger so you can do it on your own later", this is far better than a NO.
Jewel has finished listening to book four from the Harry Potter series. She enjoys laughing and talking about the books with her sisters. A full day of being together is the best day on the planet! xx I love my children. <3
My books are like water; those of the great geniuses are wine. (fortunately) everybody drinks water.-Mark Twain
Friday, May 27, 2011
Carly Fleishmann - autism
http://www.youtube.com/watch?v=34xoYwLNpvw
This is a great video segment about autism and a girl named Carly Fleishmann.
It shows how far parents need to go, a marathon of ceaseless repetition and constant care, never ending love belief in our children and their abilities. This is so enlightening about the world of autism for this young girl.
Here is Carly's blog page;
http://www.carlysvoice.com/
Here is Carly's twitter site;
http://twitter.com/#!/Carlysvoice
This is a great video segment about autism and a girl named Carly Fleishmann.
It shows how far parents need to go, a marathon of ceaseless repetition and constant care, never ending love belief in our children and their abilities. This is so enlightening about the world of autism for this young girl.
Here is Carly's blog page;
http://www.carlysvoice.com/
Here is Carly's twitter site;
http://twitter.com/#!/Carlysvoice
Thursday, May 26, 2011
YES YOU CAN! -team Hoyt -cerebral palsy
Today we watched an amazing video on the father and son athletes, Team Hoyt. Rick was born with cerebral palsy and he and his father race in ironman competitions, triathlons and marathons. They are an inspiration to us all. Their motto in life is "YES YOU CAN!"
Here is a video about them.
http://www.teamhoyt.com/
This is such a tender and heart warming story of a rich life and strong bond between this father and son team. It is nice to see how the father honors his son. I am blessed by their story and their lives, thank you team Hoyt!
Here is a video about them.
http://www.teamhoyt.com/
This is such a tender and heart warming story of a rich life and strong bond between this father and son team. It is nice to see how the father honors his son. I am blessed by their story and their lives, thank you team Hoyt!
Caroline Casey - legally blind
Get up and make a cup of tea and sit down to listen to Caroline Casey talk, you will be deeply inspired!
http://www.ted.com/talks/caroline_casey_looking_past_limits.html
http://www.ted.com/talks/caroline_casey_looking_past_limits.html
TED.com says, "Caroline Casey has dedicated the past decade of her life to changing how global society views people with disabilities. In 2000, she rode 1,000 kilometers across India on an elephant to raise funds for Sight Savers. Then, as founding CEO of Kanchi in Dublin, she developed a set of best practices (based on ISO 9000 quality standards) for businesses, to help them see "disabled" workers as an asset as opposed to a liability. Hundreds of companies have adopted the standards, changing their policies and attitudes.
In 2004, Casey started the O2 Ability Awards to recognize Irish businesses for their inclusion of people with disabilities, both as employees and customers. The initiative has received international praise and, in 2010, a parallel program was launched in Spain."
slow down
5/25/11 Wednesday
Jewel had a great day of homeschooling, which mostly consists of her core subjects of reading to her, phonics, history reading, math and books on DVD and clocking in time in her stander. She is halfway through the fourth Harry Potter book.
Here Da and sissies took her swimming and she got to go in her stander and gait trainer twice!
She was constantly aligned in a supportive position in her wheel chair, stander or gait trainer in her AFOs. Jewel has been talking a lot today, mostly repeating words and three word sentences. Today she copied Raven and said, "Chai tea late", wow how cool it that, and it was crisp and clean, with perfect annunciation.
We took her to feed the horses and work in her planter box. There are twelve planters full of food growing, a couple of banana trees, a taro patch and two of the planters are labeled as Jewel's garden. I supported Jewel for her to be able to stand up, look about and we encouraged her to take some steps. Giving Jewel support at her hips helps a lot. Raven did most of the watering and tending to the garden and she fed and topped the water for the horses. I just decided to chill with Jewel and enjoy the moment with out constantly spoiling the moment with demands and pressure of do this and do that. We have a Maui bumper sticker that says it perfectly, 'Slow down this aint the mainland.' I tend to be a human doing instead of a human being :) So we just slowed down and enjoyed the time at the garden together, I lightened up and had a good time. Jewel did well with less pressure and she stood nicely and took some steps here and there. I encouraged and praised her. We had fun.
Her aunties came by that evening and we put her in her gait trainer and put some music on. Jewel, sissies, Aunties, Grace and I all danced in our tiny living room. This KidWalk II gait trainer Rocks!! Thank you to the people at Prime Engineering who designed this amazing piece of freedom equipment and to Marian and Gill who blessed Jewel with this wonderful gift! Life is like planting a sunflower seed, you never know how much of a harvest awaits when that flower blooms and the center is packed full of sunflower seeds.
Winnie the Phooh quote-"If ever there is tomorrow when we're not together ... there is something you must always remember, you are braver than you believe, stronger than you seem and smarter than you think, but the most important thing is even if we're apart I'll always be with you."
Jewel had a great day of homeschooling, which mostly consists of her core subjects of reading to her, phonics, history reading, math and books on DVD and clocking in time in her stander. She is halfway through the fourth Harry Potter book.
Here Da and sissies took her swimming and she got to go in her stander and gait trainer twice!
She was constantly aligned in a supportive position in her wheel chair, stander or gait trainer in her AFOs. Jewel has been talking a lot today, mostly repeating words and three word sentences. Today she copied Raven and said, "Chai tea late", wow how cool it that, and it was crisp and clean, with perfect annunciation.
We took her to feed the horses and work in her planter box. There are twelve planters full of food growing, a couple of banana trees, a taro patch and two of the planters are labeled as Jewel's garden. I supported Jewel for her to be able to stand up, look about and we encouraged her to take some steps. Giving Jewel support at her hips helps a lot. Raven did most of the watering and tending to the garden and she fed and topped the water for the horses. I just decided to chill with Jewel and enjoy the moment with out constantly spoiling the moment with demands and pressure of do this and do that. We have a Maui bumper sticker that says it perfectly, 'Slow down this aint the mainland.' I tend to be a human doing instead of a human being :) So we just slowed down and enjoyed the time at the garden together, I lightened up and had a good time. Jewel did well with less pressure and she stood nicely and took some steps here and there. I encouraged and praised her. We had fun.
Her aunties came by that evening and we put her in her gait trainer and put some music on. Jewel, sissies, Aunties, Grace and I all danced in our tiny living room. This KidWalk II gait trainer Rocks!! Thank you to the people at Prime Engineering who designed this amazing piece of freedom equipment and to Marian and Gill who blessed Jewel with this wonderful gift! Life is like planting a sunflower seed, you never know how much of a harvest awaits when that flower blooms and the center is packed full of sunflower seeds.
Winnie the Phooh quote-"If ever there is tomorrow when we're not together ... there is something you must always remember, you are braver than you believe, stronger than you seem and smarter than you think, but the most important thing is even if we're apart I'll always be with you."
Wednesday, May 25, 2011
Life is a journey not the destination
5/25/11 Wednesday
Sometimes I feel that writing this blog is such vanity when so much catastrophe is going on in the world. I am talking about all the recent natural disasters, the wars and conflicts, poverty and daily human suffering.
So I think this will be my effort to share something good, like planting a seed.
Last night Jewel just lay on the bed with her mouth gapping wide open like a little bird, so I start my 20 questions.
Is something wrong?, do you have a hair in your mouth?-(she sometimes does), are you thirsty?, ... nothing just silence, then I say do you need your teeth brushed? and I am greeted with that big dimpled smile.
Silly me, I should have waited or expected a reply, instead I revert back to the guessing game.
Jewel does have speech, she likes to remind me that it is "hard" to speak, there is a lot to co-ordinate. The trunk/breath/mid-line posture/planning what she wants to say/actually getting the words out in a way that we can understand. I have been talking to Jewel more about taking responsibility, if we forget to brush her teeth she needs to tell us and I think it is working. :)
"Life is a journey - not a destination" -Ralph Waldo Emerson
Wednesday took us to feed the horses and plant in Jewel's planter boxes. "I do, I help", this is what she constantly tells me. But it is hard for her and I to do the gardening, so we watch Raven do the planting.
I had Jewel in her AFOs and in her running shoes, but I could not get her in a nice position. I tried to separate the trunk from the hips and it was not working, Oh how I miss Crystal our last O/T! I was tired and I let Jewel know that she can help, we just have to figure out how. These moments are hellish moments, fueled by frustration and the fears of failure and helplessness. I want so much to help Jewel help her self and to reach her goals and dreams. We spent so much time at the planters that there was no time to ride Cookie Dough. Raven planted some sweet potatoes and watermelon in one planter box and sunflowers, broccoli and carrots in the other. Sweet! We have no drip system in place so we will have to figure out the watering. Maybe if Jewel can water this will be good. We will try at some point to bring her gait trainer down as well. We are so thank full that we have this haven to go to, that the owners let us come feed and ride the horses and plant on the land. We are privileged to have this place of peace to come to, may it always remain a joy and may my fears and expectations never dull the moments we have here. We will strive to improve no matter how small the gain if only in our attitude, we will remember to breath and stay relaxed, remembering that it is the repetitive sharpening of our skills that will enable us to reach our goals. These moments are beautiful, expressive and forever xx
Sometimes I feel that writing this blog is such vanity when so much catastrophe is going on in the world. I am talking about all the recent natural disasters, the wars and conflicts, poverty and daily human suffering.
So I think this will be my effort to share something good, like planting a seed.
Last night Jewel just lay on the bed with her mouth gapping wide open like a little bird, so I start my 20 questions.
Is something wrong?, do you have a hair in your mouth?-(she sometimes does), are you thirsty?, ... nothing just silence, then I say do you need your teeth brushed? and I am greeted with that big dimpled smile.
Silly me, I should have waited or expected a reply, instead I revert back to the guessing game.
Jewel does have speech, she likes to remind me that it is "hard" to speak, there is a lot to co-ordinate. The trunk/breath/mid-line posture/planning what she wants to say/actually getting the words out in a way that we can understand. I have been talking to Jewel more about taking responsibility, if we forget to brush her teeth she needs to tell us and I think it is working. :)
"Life is a journey - not a destination" -Ralph Waldo Emerson
Wednesday took us to feed the horses and plant in Jewel's planter boxes. "I do, I help", this is what she constantly tells me. But it is hard for her and I to do the gardening, so we watch Raven do the planting.
I had Jewel in her AFOs and in her running shoes, but I could not get her in a nice position. I tried to separate the trunk from the hips and it was not working, Oh how I miss Crystal our last O/T! I was tired and I let Jewel know that she can help, we just have to figure out how. These moments are hellish moments, fueled by frustration and the fears of failure and helplessness. I want so much to help Jewel help her self and to reach her goals and dreams. We spent so much time at the planters that there was no time to ride Cookie Dough. Raven planted some sweet potatoes and watermelon in one planter box and sunflowers, broccoli and carrots in the other. Sweet! We have no drip system in place so we will have to figure out the watering. Maybe if Jewel can water this will be good. We will try at some point to bring her gait trainer down as well. We are so thank full that we have this haven to go to, that the owners let us come feed and ride the horses and plant on the land. We are privileged to have this place of peace to come to, may it always remain a joy and may my fears and expectations never dull the moments we have here. We will strive to improve no matter how small the gain if only in our attitude, we will remember to breath and stay relaxed, remembering that it is the repetitive sharpening of our skills that will enable us to reach our goals. These moments are beautiful, expressive and forever xx
Tuesday, May 24, 2011
Temple Grandin
5/24/11 Tuesday
I have been slowly trying to get up earlier each morning. I used to get up very early and stay up very late, not so good burning the candle at both ends. So I decided to stay up late to connect with the big girls and wake up a little later, but now that summer daylight is upon us and camp just around the corner I think it is time to start waking up at 5am again.
I decided I would like to print this blog out into a soft book for Jewel and maybe write a bit more about all girls so as to be keeping a little something for all of them to read. This blog has been a nice way to carve a little time out for myself and work to clear out my head. Raven said it is definitely too long to be a blog and I'd get more hits if it were shorter. I just figure it will find the people it needs to find and that is good enough for me. :)
Thank you Buck for lending us your DVD, Temple Grandin.
An excellent film and true story, it is nice to know that Temple Grandin lives to day! Wow, too cool!
My favorite line in the movie, 'Different but not less!'
Temple Grandin, autism was her challenge, life was her triumph.
What are you waiting for go rent the movie already, or get it gently used off of e-bay or amazon for just dollars!!!
Temple Grandin has her own book and web site for autism and aspergers so go check it out,
http://www.templegrandin.com/
Raven made a "Dream list";
Jewel 5/18/11 -"I want to be a movie star"
Raven 5/18/11 -"To print my script"
Makena 5/18/11 -"To film a movie in 2011"
"We should consider every day lost in which we have not danced at least once"- Friedrich Nietzche
I have been slowly trying to get up earlier each morning. I used to get up very early and stay up very late, not so good burning the candle at both ends. So I decided to stay up late to connect with the big girls and wake up a little later, but now that summer daylight is upon us and camp just around the corner I think it is time to start waking up at 5am again.
I decided I would like to print this blog out into a soft book for Jewel and maybe write a bit more about all girls so as to be keeping a little something for all of them to read. This blog has been a nice way to carve a little time out for myself and work to clear out my head. Raven said it is definitely too long to be a blog and I'd get more hits if it were shorter. I just figure it will find the people it needs to find and that is good enough for me. :)
Thank you Buck for lending us your DVD, Temple Grandin.
An excellent film and true story, it is nice to know that Temple Grandin lives to day! Wow, too cool!
My favorite line in the movie, 'Different but not less!'
Temple Grandin, autism was her challenge, life was her triumph.
What are you waiting for go rent the movie already, or get it gently used off of e-bay or amazon for just dollars!!!
Temple Grandin has her own book and web site for autism and aspergers so go check it out,
http://www.templegrandin.com/
Raven made a "Dream list";
Jewel 5/18/11 -"I want to be a movie star"
Raven 5/18/11 -"To print my script"
Makena 5/18/11 -"To film a movie in 2011"
"We should consider every day lost in which we have not danced at least once"- Friedrich Nietzche
Chromosome abnormality
5/23/11 Monday
Sharing is caring, and in that spirit I wanted to post some information.
I met a nice family while fundraising the other day, their daughter is seven and has not been able to be diagnosed by the medical community. They say it is some chromosome disorder. So I put in a call to a friend of mine, she is an amazing mother and has a son with a chromosome abnormality, though I would never know to be around him. He is not her only child, she has homeschooled her son along side her other child, worked diligently with him and he recently graduated from high school, his story is nothing short of inspiring and miraculous.
This is what she said, "Dr. Dwight Yim pediatric / geneticist at Kaiser helped them, he flies in from Oahu to Maui.
They also got support from a group called "Unique" based in the UK"
Their web site is;
http://www.rarechromo.org/html/home.asp
http://www.rarechromo.org/html/home.asp
Hope this information is helpful to someone out there.
And yes, I did pass this info. on to the family I met from sunday, networking is very important and word of mouth is very powerful. My friend found this site years ago through a Google search, she said that they are a great help, and she said that if you have a chromosomal karyotype for your child, they can send it to Unique, and Unique will give them whatever info they have on it, and even contact info of others that have children with similar abnormalities. (if they are interested in contacting others.)
Sharing is caring, and in that spirit I wanted to post some information.
I met a nice family while fundraising the other day, their daughter is seven and has not been able to be diagnosed by the medical community. They say it is some chromosome disorder. So I put in a call to a friend of mine, she is an amazing mother and has a son with a chromosome abnormality, though I would never know to be around him. He is not her only child, she has homeschooled her son along side her other child, worked diligently with him and he recently graduated from high school, his story is nothing short of inspiring and miraculous.
This is what she said, "Dr. Dwight Yim pediatric / geneticist at Kaiser helped them, he flies in from Oahu to Maui.
They also got support from a group called "Unique" based in the UK"
Their web site is;
http://www.rarechromo.org/html/home.asp
http://www.rarechromo.org/html/home.asp
Hope this information is helpful to someone out there.
And yes, I did pass this info. on to the family I met from sunday, networking is very important and word of mouth is very powerful. My friend found this site years ago through a Google search, she said that they are a great help, and she said that if you have a chromosomal karyotype for your child, they can send it to Unique, and Unique will give them whatever info they have on it, and even contact info of others that have children with similar abnormalities. (if they are interested in contacting others.)
Monday, May 23, 2011
Weekend
5/21/11 Saturday
Time flies by when you are keeping busy. I am consciously trying to stay present in my day, for the busy work of the day pretentiously rises up in its importance. Sometimes I feel like I am in a pressure cooker, being cooked alive, slowly dying to the lists of the day. I always hit the ground running in the morning and it is a long distance run until bed time. I am always trying to be present and grateful for the moment savoring it all, enjoying it all, at least this is the goal. Saturday brought its business as usual. For a lot of events we split up as a family and go to different functions to be represented. Today was jammed with activities as the start of summer seems to bloom. We decided to stay together through the list of events. We crammed into the car with Jewel's wheel chair and took us all to a friends BBQ, what a fun and an excellent decision in spite of being jammed like a can of tuna on the ride to and there, well worth it. My friend Terese is going to Sweden for a year, this was her going away barbeque. A bitter sweet event, but I am happy for her. Jewel had so much fun, she was in her AFOs and in her wheel chair. (lately her chair keeps loosing screws and bolts, note to self, look into this.) But right positioning never the less, my girlfriends enjoyed seeing my hip and lap free. The are concerned for my body, got to love those ladies! They keep my going with their encouragement and laughter. Friends Rock! Jewel did not participate with the kids on the water castle but all the children were given a small water gun and this made her day! She really is a wild child at heart, she was consumed with that water gun the whole time. Even though I had to fill and refill she wanted to hold the gun and squirt independently. This was not possible, but she tried the whole afternoon to do it independently. "I do" I assisted, hand over hand and she tried to squirt every one numerous times, they would look over and she was smiling from dimple to dimple, so happy and beautiful. Jewel has come a long way, she never liked being in a group like this, and would grind her teeth a lot. Now she tries so hard to join in on all the fun, thank you Jewel for showing us all your great spirit and zest for fun and life. I think I may look into getting multivitamins for myself so I can keep up with Jewel :)
After the BBQ we went to feed the horses, the owners have been away and some of us have picked up the feeding schedule amongst ourselves to feed the horses. This is always nice for me and Cookie Dough keeps looking better to me. Jewel sits in a child's car seat, it is not perfect but we try, the adaptive car seats are very expensive. Her sisters help her stay comfortable in it during the ride, they will adjust her head back into midline, read to her, sing with her, help her feet/legs stay in correct positioning, they will encourage her to help and breath to stay "settled/calm". We are always fighting her high tone. We picked up another kid on the way home and it is truly amazing that we fit 6 people, car seat, and wheelchair in a four door, five seater car. Yes, Jewel was in the car seat, Raven with the wheel chair up front, and Makena and her friend double buckled in the seat belt all the way. Safety first!
5/22/11 Sunday
Sunday brought more things to do and as busy as we have been, we still can not do all the things we want and need to do. My friend Carrie brought down some planter boxes for Jewel to start a garden at the horses, many families have started their little plot. I've yet to purchase dirt but we have a good start, lined it and put some stones and rocks in, and horse manure of course. We will grow, sweet potatoes, sunflowers, broccoli, watermelon and beets. Maybe we can figure out how Jewel can water. We bathed Cookie Dough in the afternoon and he really did enjoy this, as long as we keep the water to a gentle trickle from the hose. My friend Anne bought some special shampoo and Raven helped, between the three of us bathing him, Cookie Dough now looks dashingly handsome! I think it was therapeutic for all of us including the horse :) Thank you Cookie Dough!
Fundraising for the morning was intense and left me drained. But this is the nature of fundraising. A group of us met outside of Walmart and took shifts fundraising for Camp Imua. The goal is to stay positive and energetic the whole time. I make sure my team looks good, we do not eat or sit down during our shift, (or talk to each other or on cell phone). I make sure everyone is well versed withe history of the organization for they will be educating the public. Smile, smile, smile :) I remind all that it is not the amount, but getting the word out. "every bit helps" and it sure does add up. We are the faces of Camp Imua and their PR. My goal on our shift is to take care of my girls and the friends they bring along to help. They take pride in spreading the word about camp Imua, "a special camp for special kids", heightening awareness about special needs, about inclusion, education, and much more. "the money stays on Maui, send a keiki to camp, a special needs camp free to Maui county's children with disabilities", is some of the things these teenagers have to shout out to the shoppers going in and out of the doors to the store. You have mili seconds to make a connection and reach that citizen. Eye contact, smile and body posture is what we all understand regardless of the words we speak. Many of the shoppers are from the Philippines, Tonga, Samoa, and the pacific Islands, some can not read the signs or do not understand the words we shout out but they can see the photos of the children in the picture boards we have and they always give. Island people are family people and they all love the children and want to help. I am always humbled by most of the peoples generosity, I tell the girls to focus on the people who give and not to judge those who do not, maybe next time they will be able to, we do not know their story, stay positive and respectful to all. Smile if you do not know what to say, and keep it fun and positive for all. This event was a little different because we handed out a 'wish list' of the items we needed for camp, like crayons, flashlights, balls, bubbles, hoola hoops, etc and people took that list and came out with items, we were so thrilled with the positive response. More than three shopping carts were filled with wish list items during the morning shift, now this should be on the news, hey! We have done rather well as far as the money collected on all of our shifts, but it is not about the money, it is about spreading the word and educating the public, the more you do this, the more money will come in. Volunteers are a special breed of folks, they are skilled and have big hearts, they are very sensitive and canvasing for money can be brutal. So keep your group close, keep it real and fun, take care of each other, keep the shifts to no more than three hours so no one burns out. I have met so many beautiful people in the volunteer arena, they are amazingly talented people with the hearts the size of the community. They have their story to, their trials and heart aches but they know the secret of giving back and they joy that comes hand in hand by helping others. They know all about thinking globally and doing it locally in their own back yard, it is so empowering for our youth to be a part of the solution. Jewel did not join us, she slept in and it was Harry Potter marathon on our TV this weekend, sigh. Many of the volunteers are the children who go to camp as counselors and the campers themselves, who have special needs, came to fundraise. They come with their parents, siblings and grandparents, it is truly beautiful and so lovely to be apart of this large family. It was nice to see friends at the fundraiser and friends who gave money and supplies for camp. I am so grateful that I live on Maui during these times xx One of the volunteers brought Jewel ear plugs and a fold up tray to try out and a dvd for us to watch, Temple Grandin, autism was her challenge, life was her triumph. We need these positive stories to fuel up on our journey, thank you Buck! The caring of this circle never tires, we are blessed.
Water therapy, hydro therapy is a good thing. Jewel had her O/T session in the pool and it was grate, she was so relaxed and there in no gravity to fight, for the parts of her body that is in the water. The water relaxes her and we worked or relaxation, weight baring on the boogie board, side lying on the board, reach and grasping. The O/T said that homeschooling is best for Jewel and she was going to send me a link that supports this. Even though this has been our philosophy, that home is cool, to homeschool, there is so much constant pressure to send our special needs daughter to school. How do the parents know what therapy is done in school and how can they do the follow up at home? I have been blessed to home school all the girls thus far and never take it for granted. The school has their objectives, to help the child sit at the desk and hold a pencil, once this is achieved, there is not much therapy done at school because their mandate and objective has been reached. I just spoke with a frustrated mum about this. She said that her daughter with spina bifida does not get any therapy at school because her daughter can sit and hold a pencil. It is fun and not so much pressure, a positive session. These sessions get us all out of the house, and into the water and sun.
Time flies by when you are keeping busy. I am consciously trying to stay present in my day, for the busy work of the day pretentiously rises up in its importance. Sometimes I feel like I am in a pressure cooker, being cooked alive, slowly dying to the lists of the day. I always hit the ground running in the morning and it is a long distance run until bed time. I am always trying to be present and grateful for the moment savoring it all, enjoying it all, at least this is the goal. Saturday brought its business as usual. For a lot of events we split up as a family and go to different functions to be represented. Today was jammed with activities as the start of summer seems to bloom. We decided to stay together through the list of events. We crammed into the car with Jewel's wheel chair and took us all to a friends BBQ, what a fun and an excellent decision in spite of being jammed like a can of tuna on the ride to and there, well worth it. My friend Terese is going to Sweden for a year, this was her going away barbeque. A bitter sweet event, but I am happy for her. Jewel had so much fun, she was in her AFOs and in her wheel chair. (lately her chair keeps loosing screws and bolts, note to self, look into this.) But right positioning never the less, my girlfriends enjoyed seeing my hip and lap free. The are concerned for my body, got to love those ladies! They keep my going with their encouragement and laughter. Friends Rock! Jewel did not participate with the kids on the water castle but all the children were given a small water gun and this made her day! She really is a wild child at heart, she was consumed with that water gun the whole time. Even though I had to fill and refill she wanted to hold the gun and squirt independently. This was not possible, but she tried the whole afternoon to do it independently. "I do" I assisted, hand over hand and she tried to squirt every one numerous times, they would look over and she was smiling from dimple to dimple, so happy and beautiful. Jewel has come a long way, she never liked being in a group like this, and would grind her teeth a lot. Now she tries so hard to join in on all the fun, thank you Jewel for showing us all your great spirit and zest for fun and life. I think I may look into getting multivitamins for myself so I can keep up with Jewel :)
After the BBQ we went to feed the horses, the owners have been away and some of us have picked up the feeding schedule amongst ourselves to feed the horses. This is always nice for me and Cookie Dough keeps looking better to me. Jewel sits in a child's car seat, it is not perfect but we try, the adaptive car seats are very expensive. Her sisters help her stay comfortable in it during the ride, they will adjust her head back into midline, read to her, sing with her, help her feet/legs stay in correct positioning, they will encourage her to help and breath to stay "settled/calm". We are always fighting her high tone. We picked up another kid on the way home and it is truly amazing that we fit 6 people, car seat, and wheelchair in a four door, five seater car. Yes, Jewel was in the car seat, Raven with the wheel chair up front, and Makena and her friend double buckled in the seat belt all the way. Safety first!
5/22/11 Sunday
Sunday brought more things to do and as busy as we have been, we still can not do all the things we want and need to do. My friend Carrie brought down some planter boxes for Jewel to start a garden at the horses, many families have started their little plot. I've yet to purchase dirt but we have a good start, lined it and put some stones and rocks in, and horse manure of course. We will grow, sweet potatoes, sunflowers, broccoli, watermelon and beets. Maybe we can figure out how Jewel can water. We bathed Cookie Dough in the afternoon and he really did enjoy this, as long as we keep the water to a gentle trickle from the hose. My friend Anne bought some special shampoo and Raven helped, between the three of us bathing him, Cookie Dough now looks dashingly handsome! I think it was therapeutic for all of us including the horse :) Thank you Cookie Dough!
Fundraising for the morning was intense and left me drained. But this is the nature of fundraising. A group of us met outside of Walmart and took shifts fundraising for Camp Imua. The goal is to stay positive and energetic the whole time. I make sure my team looks good, we do not eat or sit down during our shift, (or talk to each other or on cell phone). I make sure everyone is well versed withe history of the organization for they will be educating the public. Smile, smile, smile :) I remind all that it is not the amount, but getting the word out. "every bit helps" and it sure does add up. We are the faces of Camp Imua and their PR. My goal on our shift is to take care of my girls and the friends they bring along to help. They take pride in spreading the word about camp Imua, "a special camp for special kids", heightening awareness about special needs, about inclusion, education, and much more. "the money stays on Maui, send a keiki to camp, a special needs camp free to Maui county's children with disabilities", is some of the things these teenagers have to shout out to the shoppers going in and out of the doors to the store. You have mili seconds to make a connection and reach that citizen. Eye contact, smile and body posture is what we all understand regardless of the words we speak. Many of the shoppers are from the Philippines, Tonga, Samoa, and the pacific Islands, some can not read the signs or do not understand the words we shout out but they can see the photos of the children in the picture boards we have and they always give. Island people are family people and they all love the children and want to help. I am always humbled by most of the peoples generosity, I tell the girls to focus on the people who give and not to judge those who do not, maybe next time they will be able to, we do not know their story, stay positive and respectful to all. Smile if you do not know what to say, and keep it fun and positive for all. This event was a little different because we handed out a 'wish list' of the items we needed for camp, like crayons, flashlights, balls, bubbles, hoola hoops, etc and people took that list and came out with items, we were so thrilled with the positive response. More than three shopping carts were filled with wish list items during the morning shift, now this should be on the news, hey! We have done rather well as far as the money collected on all of our shifts, but it is not about the money, it is about spreading the word and educating the public, the more you do this, the more money will come in. Volunteers are a special breed of folks, they are skilled and have big hearts, they are very sensitive and canvasing for money can be brutal. So keep your group close, keep it real and fun, take care of each other, keep the shifts to no more than three hours so no one burns out. I have met so many beautiful people in the volunteer arena, they are amazingly talented people with the hearts the size of the community. They have their story to, their trials and heart aches but they know the secret of giving back and they joy that comes hand in hand by helping others. They know all about thinking globally and doing it locally in their own back yard, it is so empowering for our youth to be a part of the solution. Jewel did not join us, she slept in and it was Harry Potter marathon on our TV this weekend, sigh. Many of the volunteers are the children who go to camp as counselors and the campers themselves, who have special needs, came to fundraise. They come with their parents, siblings and grandparents, it is truly beautiful and so lovely to be apart of this large family. It was nice to see friends at the fundraiser and friends who gave money and supplies for camp. I am so grateful that I live on Maui during these times xx One of the volunteers brought Jewel ear plugs and a fold up tray to try out and a dvd for us to watch, Temple Grandin, autism was her challenge, life was her triumph. We need these positive stories to fuel up on our journey, thank you Buck! The caring of this circle never tires, we are blessed.
Water therapy, hydro therapy is a good thing. Jewel had her O/T session in the pool and it was grate, she was so relaxed and there in no gravity to fight, for the parts of her body that is in the water. The water relaxes her and we worked or relaxation, weight baring on the boogie board, side lying on the board, reach and grasping. The O/T said that homeschooling is best for Jewel and she was going to send me a link that supports this. Even though this has been our philosophy, that home is cool, to homeschool, there is so much constant pressure to send our special needs daughter to school. How do the parents know what therapy is done in school and how can they do the follow up at home? I have been blessed to home school all the girls thus far and never take it for granted. The school has their objectives, to help the child sit at the desk and hold a pencil, once this is achieved, there is not much therapy done at school because their mandate and objective has been reached. I just spoke with a frustrated mum about this. She said that her daughter with spina bifida does not get any therapy at school because her daughter can sit and hold a pencil. It is fun and not so much pressure, a positive session. These sessions get us all out of the house, and into the water and sun.
Friday, May 20, 2011
sisters
5/19/11 Thursday
We are actively keeping Jewel in her wheel chair, stander, gait trainer and AFOs.
It is definitely a team effort, and takes stamina and commitment.
Jewel is still doing great at keeping her panties dry, but then again it is the team/our family that helps her reach her goals and full potential at this time.
Jewel is still addicted to listening to Harry Potter on CD and she does not mind hearing the books and disks over and over again, at this point I wish we had a extra room for me to take shelter away from Harry!
The gait trainer is a lot of work for Jewel and she has yet to figure out how those things called legs work.
Her sisters put on music for her while she is in the gait trainer and this seems to be a good combination.
Listening to books on CD while in the gait trainer takes too much effort to listen and move about.
We went to feed the horses today and got 'punked' by Cookie Dough.
As we were departing he went down on all fours and then rolled side ways on the gravel, he got a bit still and Raven and I burst into tears, we thought he had just died in front of us! But that big 'ol dog was just scratching an itch and he got up and walked away! How he fooled us, and really this is our greatest fear, that he may pass on. He is an old horse, maybe even thirty. Nobody seems to know his age except that he is old. He is looking so much healthier lately and he has our hearts, we are in love with him. He truly is the type of horse songs are written about. We love you Cookie Dough xxo
5/20/11 Friday
Friday has come and left us like a passing cloud.
Just the same routine, always making lists and re-evaluating.
Hoping to be able to work with a speech pathologist soon, Jewel says;" modder instead of mother, I know dat instead of that, gary instead of scary and tank you instead of thank you, boom stick instead of broom stick, tree instead of three." I guess we need more work on her blends. Although I am grateful for her speech I am always trying to help her speak clearer. Setting the bar a bit higher to see if she can reach it.
I am in the process of filling out forms for the distance evaluation for Jewel through the snowdrop organization in England, cross your fingers. I am feeling good about this decision.
Just made an acupuncture appointment for Jewel and will post updates on this.
I am a weight to our team for I still seem to be so tired.
Today Jewel and her sisters had a lot of fun with the gait trainer. They put the music on, they put her in the gait trainer while I am at work, they ceaselessly encourage her.
They truly have a special sister bond, the three of them, it is such a blessing that they share. And they demonstrate the love they have for each other in tireless actions always helping Jewel.
They helped Jewel put something back into the shelf and this is monumental!
"applause :)"
Makena told me if ever things got too hard for me to balance work and taking care of Jewel, I would always have her to help. She said she would not go to college, she would stay and help. I do not want this, I want my girls to go off and go to college and live their lives, but this is the love they have for each other. It is deeply rooted and real. I would never allow this, she needs to go and live her life but it was very sweet and enduring. If only we were all willing to help each other like this, or at least to do our share of our own work and responcibility.
Celebrate every moment, take nothing for granted, dance, fly a balloon, be grateful for everything.
We have food in the fridge and we are all accounted for and healthy, life is some what like a puzzle and we are finding some peace with the pieces.
"We succeed in enterprises which demand the positive qualities we possess, but we excel in those which can also make use of our defects." -Alexis de Tocqueville
We are actively keeping Jewel in her wheel chair, stander, gait trainer and AFOs.
It is definitely a team effort, and takes stamina and commitment.
Jewel is still doing great at keeping her panties dry, but then again it is the team/our family that helps her reach her goals and full potential at this time.
Jewel is still addicted to listening to Harry Potter on CD and she does not mind hearing the books and disks over and over again, at this point I wish we had a extra room for me to take shelter away from Harry!
The gait trainer is a lot of work for Jewel and she has yet to figure out how those things called legs work.
Her sisters put on music for her while she is in the gait trainer and this seems to be a good combination.
Listening to books on CD while in the gait trainer takes too much effort to listen and move about.
We went to feed the horses today and got 'punked' by Cookie Dough.
As we were departing he went down on all fours and then rolled side ways on the gravel, he got a bit still and Raven and I burst into tears, we thought he had just died in front of us! But that big 'ol dog was just scratching an itch and he got up and walked away! How he fooled us, and really this is our greatest fear, that he may pass on. He is an old horse, maybe even thirty. Nobody seems to know his age except that he is old. He is looking so much healthier lately and he has our hearts, we are in love with him. He truly is the type of horse songs are written about. We love you Cookie Dough xxo
5/20/11 Friday
Friday has come and left us like a passing cloud.
Just the same routine, always making lists and re-evaluating.
Hoping to be able to work with a speech pathologist soon, Jewel says;" modder instead of mother, I know dat instead of that, gary instead of scary and tank you instead of thank you, boom stick instead of broom stick, tree instead of three." I guess we need more work on her blends. Although I am grateful for her speech I am always trying to help her speak clearer. Setting the bar a bit higher to see if she can reach it.
I am in the process of filling out forms for the distance evaluation for Jewel through the snowdrop organization in England, cross your fingers. I am feeling good about this decision.
Just made an acupuncture appointment for Jewel and will post updates on this.
I am a weight to our team for I still seem to be so tired.
Today Jewel and her sisters had a lot of fun with the gait trainer. They put the music on, they put her in the gait trainer while I am at work, they ceaselessly encourage her.
They truly have a special sister bond, the three of them, it is such a blessing that they share. And they demonstrate the love they have for each other in tireless actions always helping Jewel.
They helped Jewel put something back into the shelf and this is monumental!
"applause :)"
Makena told me if ever things got too hard for me to balance work and taking care of Jewel, I would always have her to help. She said she would not go to college, she would stay and help. I do not want this, I want my girls to go off and go to college and live their lives, but this is the love they have for each other. It is deeply rooted and real. I would never allow this, she needs to go and live her life but it was very sweet and enduring. If only we were all willing to help each other like this, or at least to do our share of our own work and responcibility.
Celebrate every moment, take nothing for granted, dance, fly a balloon, be grateful for everything.
We have food in the fridge and we are all accounted for and healthy, life is some what like a puzzle and we are finding some peace with the pieces.
"We succeed in enterprises which demand the positive qualities we possess, but we excel in those which can also make use of our defects." -Alexis de Tocqueville
Wednesday, May 18, 2011
5/18/2011 Wednesday
We bought Jewel a pair of light pink soccer socks to go under her AFOs and they work nicely.
This way there will be enough skin coverage to avoid skin breakdown.
Jewel had a grate O/T session with Carol, she helped with adjusting Jewel in her gait trainer and did lots of myofascial release.
I am so exhausted I think this state should be illegal and I feel rather overwhelmed with all the things I would like to do and get done for and with Jewel and her sisters. I hate this brain fog feeling, Moms should,.... feel lots happier and be full of endless energy. On monday I came home from work and fell asleep, totally forgetting that I still had another client waiting. Big Oops, this is a first and lets hope the last time this ever happens!
Hope you are making time to take care of you because the saying goes, you can not give what you do not have. So I will be attempting to refuel, happy trails to you.
We bought Jewel a pair of light pink soccer socks to go under her AFOs and they work nicely.
This way there will be enough skin coverage to avoid skin breakdown.
Jewel had a grate O/T session with Carol, she helped with adjusting Jewel in her gait trainer and did lots of myofascial release.
I am so exhausted I think this state should be illegal and I feel rather overwhelmed with all the things I would like to do and get done for and with Jewel and her sisters. I hate this brain fog feeling, Moms should,.... feel lots happier and be full of endless energy. On monday I came home from work and fell asleep, totally forgetting that I still had another client waiting. Big Oops, this is a first and lets hope the last time this ever happens!
Hope you are making time to take care of you because the saying goes, you can not give what you do not have. So I will be attempting to refuel, happy trails to you.
Simple pleasures.
5/17/11 Tuesday
We took Jewel to the horses, Cindy picked us up and it is good to see her and catch up.
We spoke about graduations, weddings and just the business of life in general.
Cindy has recently gotten married and her daughter is about to graduate from high school, both of our days are so busy and these rides to the horses give us some time to unload and just laugh.
We are always looking to find some meaningful balance, doing what we want and not just what we need to do. I am trying to live in the present and savour each moment, this is my way of feeling grateful and fulfilled. Raven and Cindy were trying to get me to lead Cookie Dough and I had to decline and feel okay about my decision. I am most comfortable being a side walker at this time and I can not force myself to be what I am not. I am not able to lead with confidence and ease. Raven and Jewel rode for 30 minutes together. Cookie Dough is looking good and eating well. He walked nicely and did not do much tripping. Someone came by earlier and weed-waked the area a couple of days ago, making it a lot easier to see where we were stepping. Jewel reminded us that it is, " really hard". It is hard work for Jewel to ride and keep pushing her trunk and head up and work on weight baring on her hands. You would think that we would consciously be aware of this but we want so much for Jewel that at times we forget while we push her to do more, do better. There was a moment when I realized that it was just as important for Jewel to just enjoy the moment and just enjoy her horse. She loves Billy aka Cookie Dough and he loves her, this is the gift. The perfect gift of love reciprocated. Sometimes we loose sight of the simple pleasures and demand so much, always looking for the next gain. Our lives are full of little gifts that we need to enjoy.
We took Jewel to the horses, Cindy picked us up and it is good to see her and catch up.
We spoke about graduations, weddings and just the business of life in general.
Cindy has recently gotten married and her daughter is about to graduate from high school, both of our days are so busy and these rides to the horses give us some time to unload and just laugh.
We are always looking to find some meaningful balance, doing what we want and not just what we need to do. I am trying to live in the present and savour each moment, this is my way of feeling grateful and fulfilled. Raven and Cindy were trying to get me to lead Cookie Dough and I had to decline and feel okay about my decision. I am most comfortable being a side walker at this time and I can not force myself to be what I am not. I am not able to lead with confidence and ease. Raven and Jewel rode for 30 minutes together. Cookie Dough is looking good and eating well. He walked nicely and did not do much tripping. Someone came by earlier and weed-waked the area a couple of days ago, making it a lot easier to see where we were stepping. Jewel reminded us that it is, " really hard". It is hard work for Jewel to ride and keep pushing her trunk and head up and work on weight baring on her hands. You would think that we would consciously be aware of this but we want so much for Jewel that at times we forget while we push her to do more, do better. There was a moment when I realized that it was just as important for Jewel to just enjoy the moment and just enjoy her horse. She loves Billy aka Cookie Dough and he loves her, this is the gift. The perfect gift of love reciprocated. Sometimes we loose sight of the simple pleasures and demand so much, always looking for the next gain. Our lives are full of little gifts that we need to enjoy.
Simple Gifts was written by Shaker Elder Joseph Brackett, Jr. in 1848. Simple Gifts'Tis the gift to be simple,
'tis the gift to be free,
'tis the gift to come down where you ought to be,
And when we find ourselves in the place just right,
It will be in the valley of love and delight.
When true simplicity is gained,'Tis the gift to be loved and that love to return,
To bow and to bend we shan't be ashamed.
To turn, turn will be our delight,
'Til by turning, turning we come round right
'Tis the gift to be taught and a richer gift to learn,
And when we expect of others what we try to live each day,
Then we'll all live together and we'll all learn to say,
'Tis the gift to have friends and a true friend to be,
'Tis the gift to think of others not to only think of "me",
And when we hear what others really think and really feel,
Then we'll all live together with a love that is real.
Tuesday, May 17, 2011
old friends
5/15/11 Monday
Looking for the right Neoprene weighted vest for Jewel, any suggestions?
Jewel spent time in her gait trainer today, wish we could get more feedback and instructions.
We will be patient, things take time, and the more she is in her gait trainer the more we will
be able to work out her positioning. Hoping to get a P/T who can help specifically with the gait trainer!
We are making sure she is snug and her hips are supported and the angle and height we are not so certain of.
I bought a dry erase board, it is tricky to write, balance the board where Jewel can comfortably see and then help her with her head to support midline positioning. I want her to master her reading, and the way has not come yet. So many physical details to work out to get her situated, if only I had four more hands. Wonder if a moma octopus feels this way to. Maybe a weighted vest will help? I know that we are not where we ought to be in math and reading, but history, listening and comprehension and vocabulary is coming along nicely.
So nice to connect up with old friends.
Carrie came riding with us and it was a great session, she is a great horse person!
Cookie Dough did not stumble with her, and Raven rode with Jewel. I was a side walker, this is my comfort zone, Makena filmed part of the session. Carrie established a relationship and boundaries with Cookie Dough. Raven felt so safe, she said there was no tension or stress factor coming from me.
Thank you Carrie for taking time out of your day to help us and Jewel.
Carrie uses horse whispering techniques and it was a honor to be a part of this session, Jewel rode for 40 minutes, mostly with Raven and then solo, facing the rear of the hors. Whoop!
Life is so magical when we take time out to help each other! It was nice to get the help at the horses and to spend time with an old friend. We also got to spend time with her daughters which was a bonus.
Jewel was famished when she got home, all the fresh air worked up a huge appetite :)
She is taking a break from Harry and watching Tangled. (thank goodness)
Looking for the right Neoprene weighted vest for Jewel, any suggestions?
Jewel spent time in her gait trainer today, wish we could get more feedback and instructions.
We will be patient, things take time, and the more she is in her gait trainer the more we will
be able to work out her positioning. Hoping to get a P/T who can help specifically with the gait trainer!
We are making sure she is snug and her hips are supported and the angle and height we are not so certain of.
I bought a dry erase board, it is tricky to write, balance the board where Jewel can comfortably see and then help her with her head to support midline positioning. I want her to master her reading, and the way has not come yet. So many physical details to work out to get her situated, if only I had four more hands. Wonder if a moma octopus feels this way to. Maybe a weighted vest will help? I know that we are not where we ought to be in math and reading, but history, listening and comprehension and vocabulary is coming along nicely.
So nice to connect up with old friends.
Carrie came riding with us and it was a great session, she is a great horse person!
Cookie Dough did not stumble with her, and Raven rode with Jewel. I was a side walker, this is my comfort zone, Makena filmed part of the session. Carrie established a relationship and boundaries with Cookie Dough. Raven felt so safe, she said there was no tension or stress factor coming from me.
Thank you Carrie for taking time out of your day to help us and Jewel.
Carrie uses horse whispering techniques and it was a honor to be a part of this session, Jewel rode for 40 minutes, mostly with Raven and then solo, facing the rear of the hors. Whoop!
Life is so magical when we take time out to help each other! It was nice to get the help at the horses and to spend time with an old friend. We also got to spend time with her daughters which was a bonus.
Jewel was famished when she got home, all the fresh air worked up a huge appetite :)
She is taking a break from Harry and watching Tangled. (thank goodness)
“It's the circle of life, and it moves us all, through despair and hope, through faith and love, 'till we find our place, on the path unwinding”-Elton John
Sunday, May 15, 2011
good 'ol dayz
5/15/2011 Sunday
Time for dinner but instead we are having fun.
Jewel is in her gait trainer, Kidwalk II, the music is wafting through the room and all the girls are dancing.
Life can not get better than this :) These moments make up for the hard ones.
The girls laugh at the way I dance but "we all just dance like white girls" says Raven, I think I dance more like a free spirit. :)
We had a lazy day at the pool with our good friend Kathleen and her son John.
Jewel was fascinated with his spray bottle and wanted a turn spraying him, "I do, I do" was Jewel's request. Together we are a great shot. We got lots of good eats and lazy times in the sun under shade.
Jewel had an O/T session in the water, we worked on relaxation going into the hot tub for a short time and weight baring on the boogie board in the pool. We are always watching that her face does not go under the water, which is difficult with her lack of head control, but there were great moments for Jewel in the pool. Instead of the therapist forcing Jewel's body she wants Jewel to make that connection in her body herself.
I do not know if we will ever adjust to the loss of our old therapist, so I am keeping an open mind and open heart with the new therapist.
We need a pediatric physical therapist who is familiar with gait trainers and can work a few sessions with Jewel.
5/14/11 Saturday was the charity walk, and we ended up doing it with out Jewel because she was still sound asleep when we left at 6 am. We walked for Hawaii Canines for Independence, they place people with service and companion therapy assistance dogs, and Camp Imua for special needs school aged children in Maui county. I think we actually gained weight doing this walk with all the snacks that were handed out during the walk and not to mention the Hawaiian style local good breakfast grinds, nummie :)
Jewel got invited to a birthday party and we had a blast. I forgot how much fun hula hoops were! They had a "professional hula hoop teacher/performer" and it was magical and fun! Jewel kept saying, "I do", and I bet the more she learns to relax that she and I will be able to figure out some hula hoop moves! I highly advocate having a simple hula hoop party! Jewel sat in her wheel chair with her AFOs and sneakers, a bit hot but well worth it! It is so important to have friends, thank you Gracie for inviting Jewel to celebrate your birthday with you! xxo
5/13/11 Friday was all about Prom for the big girls, borrowing shoes from the neighbor, picking plumeria flowers for hair pieces, make up, curling iron and hairspray, giggles, pictures and some tears from Mom, savoring every micro second, my heart is full.
Jewel and I tagged along as the girls got dolled up at their friend's house, what fun. She kept saying,"Yogurt you sad", "Uggie dog" ... translated this means, Mom if you are sad take my stuffed animal Uggie dog and you will feel better. Jewel calls me Yogurt and I call her Banana :) She is very observant of my feelings, Jewel knows that I am feeling happy and sad that her sisters have one more year in high school before they are off to college. My heart is full and bursting with joy from my children.
5/12/11 Thursday.... on the phone with the awesome company with A BIG HEART, and this is Prime Engineering. This is where we got Jewel's stander, Super Stand and her gait trainer, Kidwalk II.
Jewel went with her Da and sissy Raven to the body worker. While John was working on her, we were on the phone with Bruce the owner of the company. He was helping us put in a new part in our stander, since we live on an Island there is not a lot of help here for this kind of trouble shooting, so he led us step by step over the phone. We were successful because of their commitment to help their clients. They have an excellent customer relations and will only give you the best! Please check them out if you are deciding to purchase a piece of equipment! The world is a nicer place to live in when there is such excellent support and helping hands. Makena did the adjustments needed and she replaced the part with Bruce's direction, apparently I am a bit challenged in this department of following instructions and comprehending. I would still be on the phone with them if it was not for Makena's help and willingness to help, Thank you Makena xxo I love you xxo Mom
The blog was down on wednesday and thursday, I could not log on to the blog and I panicked when my pages disappeared and Makena kept reassuring me that they would reappear and she was right :)
Time for dinner but instead we are having fun.
Jewel is in her gait trainer, Kidwalk II, the music is wafting through the room and all the girls are dancing.
Life can not get better than this :) These moments make up for the hard ones.
The girls laugh at the way I dance but "we all just dance like white girls" says Raven, I think I dance more like a free spirit. :)
We had a lazy day at the pool with our good friend Kathleen and her son John.
Jewel was fascinated with his spray bottle and wanted a turn spraying him, "I do, I do" was Jewel's request. Together we are a great shot. We got lots of good eats and lazy times in the sun under shade.
Jewel had an O/T session in the water, we worked on relaxation going into the hot tub for a short time and weight baring on the boogie board in the pool. We are always watching that her face does not go under the water, which is difficult with her lack of head control, but there were great moments for Jewel in the pool. Instead of the therapist forcing Jewel's body she wants Jewel to make that connection in her body herself.
I do not know if we will ever adjust to the loss of our old therapist, so I am keeping an open mind and open heart with the new therapist.
We need a pediatric physical therapist who is familiar with gait trainers and can work a few sessions with Jewel.
5/14/11 Saturday was the charity walk, and we ended up doing it with out Jewel because she was still sound asleep when we left at 6 am. We walked for Hawaii Canines for Independence, they place people with service and companion therapy assistance dogs, and Camp Imua for special needs school aged children in Maui county. I think we actually gained weight doing this walk with all the snacks that were handed out during the walk and not to mention the Hawaiian style local good breakfast grinds, nummie :)
Jewel got invited to a birthday party and we had a blast. I forgot how much fun hula hoops were! They had a "professional hula hoop teacher/performer" and it was magical and fun! Jewel kept saying, "I do", and I bet the more she learns to relax that she and I will be able to figure out some hula hoop moves! I highly advocate having a simple hula hoop party! Jewel sat in her wheel chair with her AFOs and sneakers, a bit hot but well worth it! It is so important to have friends, thank you Gracie for inviting Jewel to celebrate your birthday with you! xxo
5/13/11 Friday was all about Prom for the big girls, borrowing shoes from the neighbor, picking plumeria flowers for hair pieces, make up, curling iron and hairspray, giggles, pictures and some tears from Mom, savoring every micro second, my heart is full.
Jewel and I tagged along as the girls got dolled up at their friend's house, what fun. She kept saying,"Yogurt you sad", "Uggie dog" ... translated this means, Mom if you are sad take my stuffed animal Uggie dog and you will feel better. Jewel calls me Yogurt and I call her Banana :) She is very observant of my feelings, Jewel knows that I am feeling happy and sad that her sisters have one more year in high school before they are off to college. My heart is full and bursting with joy from my children.
5/12/11 Thursday.... on the phone with the awesome company with A BIG HEART, and this is Prime Engineering. This is where we got Jewel's stander, Super Stand and her gait trainer, Kidwalk II.
Jewel went with her Da and sissy Raven to the body worker. While John was working on her, we were on the phone with Bruce the owner of the company. He was helping us put in a new part in our stander, since we live on an Island there is not a lot of help here for this kind of trouble shooting, so he led us step by step over the phone. We were successful because of their commitment to help their clients. They have an excellent customer relations and will only give you the best! Please check them out if you are deciding to purchase a piece of equipment! The world is a nicer place to live in when there is such excellent support and helping hands. Makena did the adjustments needed and she replaced the part with Bruce's direction, apparently I am a bit challenged in this department of following instructions and comprehending. I would still be on the phone with them if it was not for Makena's help and willingness to help, Thank you Makena xxo I love you xxo Mom
The blog was down on wednesday and thursday, I could not log on to the blog and I panicked when my pages disappeared and Makena kept reassuring me that they would reappear and she was right :)
Friday, May 13, 2011
Gone
5/13/11 Friday
Wow, everything I posted since monday has mysteriously disappeared off the blog :(
The blog site was having issues yesterday and I was not able to log in and now some pages are missing, gone for good, even from the saved and edit backup pages.
Wow, everything I posted since monday has mysteriously disappeared off the blog :(
The blog site was having issues yesterday and I was not able to log in and now some pages are missing, gone for good, even from the saved and edit backup pages.
Thursday, May 12, 2011
Harry
5/11/11 Wednesday
"Harry, Harry, Harry"
"Harry Po tt er"
Jewel is addicted to Harry Potter audio books.
Good heavens, she is a complete nut for these compact disks since Makena brought the first set home from the library. Jewel is on book three, disk 7 already. She has listened to the complete book one at least three times! You know what this means, ... so have we!
"Be quiet, Listening", is her response to us moving around her.
We have always read to her and borrowed all the books on tape from the library.
We even tried the books for the blind but the machines for those tapes are so archaic and do not work well.
I bough her one set of compact disks by James Herriot on Dog stories. She loves these, even with the heavy English accent.
We can never read fast enough for her and the audio books are great for this, they are consistent and we can do our work around changing the cds for her. I have yet to read the last chapters of Ella enchanted for her, life just happens while you are reading books.
-"Imagination is more important than knowledge. A person starts to live when he can live outside himself." Albert Einstein
The marks from the hip adductor brace on Jewel's legs have taken three days to diminish.
This is not good and we will watch for this, we do not want to repeat this because it encourages skin break down. The weather has been humid, hot and muggy which is not fun for us but it makes Jewel more aggravated and it kicks her tone up a notch, so we have all the fans on, and doors open.
"Harry, Harry, Harry"
"Harry Po tt er"
Jewel is addicted to Harry Potter audio books.
Good heavens, she is a complete nut for these compact disks since Makena brought the first set home from the library. Jewel is on book three, disk 7 already. She has listened to the complete book one at least three times! You know what this means, ... so have we!
"Be quiet, Listening", is her response to us moving around her.
We have always read to her and borrowed all the books on tape from the library.
We even tried the books for the blind but the machines for those tapes are so archaic and do not work well.
I bough her one set of compact disks by James Herriot on Dog stories. She loves these, even with the heavy English accent.
We can never read fast enough for her and the audio books are great for this, they are consistent and we can do our work around changing the cds for her. I have yet to read the last chapters of Ella enchanted for her, life just happens while you are reading books.
-"Imagination is more important than knowledge. A person starts to live when he can live outside himself." Albert Einstein
The marks from the hip adductor brace on Jewel's legs have taken three days to diminish.
This is not good and we will watch for this, we do not want to repeat this because it encourages skin break down. The weather has been humid, hot and muggy which is not fun for us but it makes Jewel more aggravated and it kicks her tone up a notch, so we have all the fans on, and doors open.
Wednesday, May 11, 2011
Happy Girls
5/10/11 Tuesday
We talked about Jewel's desire to dance the Hawaiian dance.
"Hula." She beams with joy when we talk about the hula.
Jimmy the massage therapist showed Jewel how to do the hula yesterday.
As Jewel lay on his massage table he picked up her hips ever so gently but firmly and showed Jewel how the hips need to travel around the Islands. Oh boy did she love this! There are many things I love about Jimmy but my favorite is he never says anything negative or limiting to Jewel. Yes, he believes that she will be able to ride in the rodeo procession as does he believe that Jewel can dance the hula, thank you Jimmy!!
I believe in manicures. I believe in overdressing. I believe in primping at leisure and wearing lipstick. I believe in pink. I believe happy girls are the prettiest girls. I believe that tomorrow is another day, and... I believe in miracles.-Audrey Hepburn
The big girls are all hubba-bubbing about prom, hair up-dos, high heels, shoes, shopping borrowing prom dresses, and too much hair spray. Jewel keeps asking her sissies,"what you doing?!" And half the time they do not know, they are just giggling and having fun.
Left Jewel with out an overnight diaper on, and about 2am she yelled,"no diaper, sorry."
Well accidents are bound to happen.
Jewel chose to stay home and not fund raise since it was, "too hot."
So Makena, Raven and I hit the pavement in a ritzy neighborhood asking for donations towards;1.) HCI Hawaii Canines for Independence, they train service dogs right here on Maui. Grace, Jewel's dog and sometimes dragon comes from HCI. Since the girls are into supporting two charities we were raising funds for 2.) Camp Imua as well. Camp Imua is a free week long camp, for Maui counties school aged special needs population. This camp has been servicing our children for 35 years and although it has changed in some ways it still remains free to the campers and I hope this never changes. It is run by teenagers and a handful of adults, it is an amazing experience. Jewel has gone for the past two years, I am her caregiver and Raven and Makena have been volunteer, this year will be their third year as caregivers. This saturday there will be a charity walk and all the funds raised for the different charities will be matched by the hotel and lodging industry, pretty sweet! It is only three miles for the walk and it is nice to be a part of the community and doing our share. We were so burnt out going from door to door and mostly people with empty pockets were greeting us but there were a few generous gems who kept our spirits up and made it worth while canvasing. Note to self; give money and a cool glass of water with a smile to the next charity collector who comes by our door, and thank them.
Remember, if you ever need a helping hand, you will find one at the end of each of your arms. As you grow older, you will discover that you have two hands, one for helping yourself and the other for helping others.--Audrey Hepburn
http://physical-therapy.advanceweb.com/Archives/Article-Archives/Heightened-Awareness-2.aspx
We have noticed that Jewel eliminates and sleeps better when she does at least an hour in her stander. Our goal is at least 2hrs a day or maybe even twice a day! They say that supported standing is a pre-gait activity. So time in Stander first then time in her Gait trainer :)
Nothing is impossible, the word itself says I'm possible! -Audrey Hepburn
We talked about Jewel's desire to dance the Hawaiian dance.
"Hula." She beams with joy when we talk about the hula.
Jimmy the massage therapist showed Jewel how to do the hula yesterday.
As Jewel lay on his massage table he picked up her hips ever so gently but firmly and showed Jewel how the hips need to travel around the Islands. Oh boy did she love this! There are many things I love about Jimmy but my favorite is he never says anything negative or limiting to Jewel. Yes, he believes that she will be able to ride in the rodeo procession as does he believe that Jewel can dance the hula, thank you Jimmy!!
I believe in manicures. I believe in overdressing. I believe in primping at leisure and wearing lipstick. I believe in pink. I believe happy girls are the prettiest girls. I believe that tomorrow is another day, and... I believe in miracles.-Audrey Hepburn
The big girls are all hubba-bubbing about prom, hair up-dos, high heels, shoes, shopping borrowing prom dresses, and too much hair spray. Jewel keeps asking her sissies,"what you doing?!" And half the time they do not know, they are just giggling and having fun.
Left Jewel with out an overnight diaper on, and about 2am she yelled,"no diaper, sorry."
Well accidents are bound to happen.
Jewel chose to stay home and not fund raise since it was, "too hot."
So Makena, Raven and I hit the pavement in a ritzy neighborhood asking for donations towards;1.) HCI Hawaii Canines for Independence, they train service dogs right here on Maui. Grace, Jewel's dog and sometimes dragon comes from HCI. Since the girls are into supporting two charities we were raising funds for 2.) Camp Imua as well. Camp Imua is a free week long camp, for Maui counties school aged special needs population. This camp has been servicing our children for 35 years and although it has changed in some ways it still remains free to the campers and I hope this never changes. It is run by teenagers and a handful of adults, it is an amazing experience. Jewel has gone for the past two years, I am her caregiver and Raven and Makena have been volunteer, this year will be their third year as caregivers. This saturday there will be a charity walk and all the funds raised for the different charities will be matched by the hotel and lodging industry, pretty sweet! It is only three miles for the walk and it is nice to be a part of the community and doing our share. We were so burnt out going from door to door and mostly people with empty pockets were greeting us but there were a few generous gems who kept our spirits up and made it worth while canvasing. Note to self; give money and a cool glass of water with a smile to the next charity collector who comes by our door, and thank them.
Remember, if you ever need a helping hand, you will find one at the end of each of your arms. As you grow older, you will discover that you have two hands, one for helping yourself and the other for helping others.--Audrey Hepburn
http://physical-therapy.advanceweb.com/Archives/Article-Archives/Heightened-Awareness-2.aspx
We have noticed that Jewel eliminates and sleeps better when she does at least an hour in her stander. Our goal is at least 2hrs a day or maybe even twice a day! They say that supported standing is a pre-gait activity. So time in Stander first then time in her Gait trainer :)
Nothing is impossible, the word itself says I'm possible! -Audrey Hepburn
Monday, May 9, 2011
Realize it
5/9/11 Monday
Aloha, I have been reading the pages on the Snowdrop blog,
http://snowdrop-snowdropblog.blogspot.com
http://snowdrop-snowdropblog.blogspot.com/
check out May 8,2011 Article on stimulating and directing brain plasticity, very interesting!http://www.eurekalert.org/pub_releases/2011-02/miot-mpo022811.php the supporting article brings hope to my mind.
Happy reading, happy learning! :)
Jewel is up and the morning has shifted into full speed, she did not sleep well, (so neither did I) for she seemed very congested, now to find the source. Is it her diet or environmental or ...?!
Jewel awoke with another dry overnight diaper :) YES!
Her hip adductor brace left very harsh lines on her thighs, so we will watch and be real careful next time.
If the read mark leaves with in an hour it is still okay, but these are still there. I must have been tired an put the brace on in a incorrect fashion. We watch because of fear of skin break down, we want to avoid the skin break down as much as possible. Skin break down brings the possibility of infection and then the child can not wear the AFO or brace until the skin has healed.
Today Jewel did 2-hrs in her Super Stand stander, yeah for Jewel!
Right after the timer went off Jewel said," I can't take it, really can't take it, get out!"
Awesome sentences Jewel!
I just love the words Jewel uses.
Today we fed the horses but we did not ride, because Jewel just got her massage from Jimmy.
He worked on her legs and thoracic and neck. Jimmy noticed an improvement in Jewel's body since she has been in her stander, wheelchair and AFO's as much as possible. We tried this in the past but she and we were not ready, but now we are all ready for this step. We are trying to keep Jewel off the floor (on her back) and in functional supportive positions only. This is keeping her aligned, her hips in and the rest of her body pretty straight and less twisted and contorted. If the child is on its belly and weight baring on arms like this, it is optimal and great for integrating the primitive movements into functional movements and stability before mobility. But the child on its back it bad because all the spasticity and tone and primitive non functional movements kick in, side lying is better. We wanted Jewel to get the relaxation and full benefit of the body work.
We had an O/T come and work with Jewel on sunday. The session was all about relaxation and finding the 'calm' in Jewel's body. We used a big exercise ball and gently rolled Jewel on it, getting her to feel the 'settled' feeling in her body and we encouraged her to keep breathing. The O/T said the right motivation after relaxation will be the reward, so we colored with Jewel after. We did not get all the functional body relaxation and movements we wanted but there has to be emotional satisfaction and joy, this is where the hand over hand coloring comes in. This was a reward and I am keeping an open mind and heart because I miss our old therapist so badly. We will go on with a great attitude of gratitude, and the gratitude is that for the first time Jewel's insurance has approve 16 physical therapy sessions. The lesson is keep knocking and some door may finally open, even if it takes ten years or more. Remember you are your child's voice and advocate, never tire from what is right for them. Even through your exhaustion you are impaction their quality of life thus making the world a better place.
Our team has one team member who consistently shows themselves unreliable and it makes us weaker at times and yet still more determined to help Jewel make gains. I am sure that most families with special needs children are taxed on every side, and each family has their weaker links, but no matter what the case may be we need to carry on and give all we got and strive to help Jewel make those gains. Focus on what you can do, the task in front of you because there will always be more work that needs doing.
"An ideal is one thing; living up to it is quite another ... We may be said to have an ideal only when we put forth an effort to realize it. Strength does not come from physical capacity. It comes from an indomitable will." -Mahatma Gandhi
Glad for today :)
Aloha, I have been reading the pages on the Snowdrop blog,
http://snowdrop-snowdropblog.blogspot.com
http://snowdrop-snowdropblog.blogspot.com/
check out May 8,2011 Article on stimulating and directing brain plasticity, very interesting!http://www.eurekalert.org/pub_releases/2011-02/miot-mpo022811.php the supporting article brings hope to my mind.
Happy reading, happy learning! :)
Jewel is up and the morning has shifted into full speed, she did not sleep well, (so neither did I) for she seemed very congested, now to find the source. Is it her diet or environmental or ...?!
Jewel awoke with another dry overnight diaper :) YES!
Her hip adductor brace left very harsh lines on her thighs, so we will watch and be real careful next time.
If the read mark leaves with in an hour it is still okay, but these are still there. I must have been tired an put the brace on in a incorrect fashion. We watch because of fear of skin break down, we want to avoid the skin break down as much as possible. Skin break down brings the possibility of infection and then the child can not wear the AFO or brace until the skin has healed.
Today Jewel did 2-hrs in her Super Stand stander, yeah for Jewel!
Right after the timer went off Jewel said," I can't take it, really can't take it, get out!"
Awesome sentences Jewel!
I just love the words Jewel uses.
Today we fed the horses but we did not ride, because Jewel just got her massage from Jimmy.
He worked on her legs and thoracic and neck. Jimmy noticed an improvement in Jewel's body since she has been in her stander, wheelchair and AFO's as much as possible. We tried this in the past but she and we were not ready, but now we are all ready for this step. We are trying to keep Jewel off the floor (on her back) and in functional supportive positions only. This is keeping her aligned, her hips in and the rest of her body pretty straight and less twisted and contorted. If the child is on its belly and weight baring on arms like this, it is optimal and great for integrating the primitive movements into functional movements and stability before mobility. But the child on its back it bad because all the spasticity and tone and primitive non functional movements kick in, side lying is better. We wanted Jewel to get the relaxation and full benefit of the body work.
We had an O/T come and work with Jewel on sunday. The session was all about relaxation and finding the 'calm' in Jewel's body. We used a big exercise ball and gently rolled Jewel on it, getting her to feel the 'settled' feeling in her body and we encouraged her to keep breathing. The O/T said the right motivation after relaxation will be the reward, so we colored with Jewel after. We did not get all the functional body relaxation and movements we wanted but there has to be emotional satisfaction and joy, this is where the hand over hand coloring comes in. This was a reward and I am keeping an open mind and heart because I miss our old therapist so badly. We will go on with a great attitude of gratitude, and the gratitude is that for the first time Jewel's insurance has approve 16 physical therapy sessions. The lesson is keep knocking and some door may finally open, even if it takes ten years or more. Remember you are your child's voice and advocate, never tire from what is right for them. Even through your exhaustion you are impaction their quality of life thus making the world a better place.
Our team has one team member who consistently shows themselves unreliable and it makes us weaker at times and yet still more determined to help Jewel make gains. I am sure that most families with special needs children are taxed on every side, and each family has their weaker links, but no matter what the case may be we need to carry on and give all we got and strive to help Jewel make those gains. Focus on what you can do, the task in front of you because there will always be more work that needs doing.
"An ideal is one thing; living up to it is quite another ... We may be said to have an ideal only when we put forth an effort to realize it. Strength does not come from physical capacity. It comes from an indomitable will." -Mahatma Gandhi
Glad for today :)
Sunday, May 8, 2011
Happy Days
5/5 Thursday, Happy Days
some of the same and a little new,
Jewel was exceptionally relaxed today, this was a good thing.
Still putting her AFO's on, into wheel chair and stander.
Avoiding floor at all costs.
I am not going to analyze why her body is so relaxed, we will just enjoy this gift. :_)
We went to the horses and Makena led the horse, Gary and I were side walkers and
Raven rode with Jewel. All in all the session was good, 20 min. ride, I am still very nervous when the horse trips but nobody is perfect. I am still very tired and on antibiotics.
We are still actively looking for a new occupational therapist to work with Jewel and us.
I let Jewel wear her AFO's to bed then took them off at 10pm, I am tempted to try them longer or even over night. Her Da is not in favor of this.
5/6 Friday
Another dry diaper to wake up to! Though there have been occasional wet morning diaper here and there.
The building up of the Awana Grand Prix was almost too much for Jewel.
This is Jewel's fourth year racing her balsa wood car, each year it is a different one, she has had a dog car, cat car and seal car. When we arrived we signed her dragon car in and it was weighed and checked and allotted the number #17.
Jewel cried a lot in the beginning of the evening, the stimulation may have been too much.
Her upside down smile :( was almost too much for our hearts to bare.
Makena ended up taking her out of her wheelchair and she carried her sister around, always including her in as much activities and helping her have a voice and encouraging her to make choices.
This is so enduring to witness and is such a gift.
Raven was the runner for Jewel's car.
The dragon car won the first two heats, so very exciting. Then it lost the next two races thus disqualifying its place in the race.
Jewel was contented and handled the wins and losses very well, she is a good sport.
We passed Jewel around giving her time with each of us and intern giving each of us a physical break.
She lightened up when she was out of her wheel chair.
Then they had every one vote for the best design, and the votes were tallied up.
At the end of the evening the last two cars came in at a tie twice and then there was the final win for the gold fish car. Overall a lovely evening and so exiting as the finally of the racing drew to a close and the winners announced. It is such fun to watch the Dads get into the racing, for in reality it is their cars racing :) Each clubber gets a blue ribbon for participating.
Then the announcement for the best design, third place was a lady bug car, second place was the tootsie roll and first place ...... drum roll Jeweliana's Dragon Car!!! whoop! What fun!
Jewel almost jumped out of my arms, she was smiling and screaming with joy,
"I win, I win!" Her smile brought me to tears, and she worked the room to cheer so loud, she was radiant and ecstatic, expressing her joy.
It is such an honor to be voted best design by your peers!
Later that evening Jewel said, "I a winner", yes Jewel you are a winner indeed!
Next she wanted to call her friend Ava right away and tell her the great news.
After she thanked her Uncle Don for helping her, she is always so grateful.
In Hawaii the youth call the adults Uncle and Aunty out of respect and cultural tradition, one does not have to be related by blood or marriage to be called Aunty or Uncle. The Hawaiian culture perpetuated the family and it is all about including. Desert was served after and Raven made the best cupcakes, from scratch and very sweet, a real hit, because none were left. Thank you Raven!!
It was hard for Jewel to go bed, all she wanted to to was hold her trophy.
This can be a dangerous thing especially with her lack of arm control and spastic movements but we watched her closely and let her hold her first place trophy for a while :)
What a wonderful thing for Jewel to experience and for us to be a part of. Makena and Raven raced their cars at the Awana club when they were little and we have never had a win until this evening. Though we always felt that our cars were the best and most creative, as I am sure each clubber feels a certain amount of pride and attachment for their cars.
Sweet dreams Winner :)
5/7 Saturday
What a day, shopping with Raven and her friend is skill of endurance, and I did have a fun time! You see I learnt the meaning of, ' shop until you drop' as a college student visiting New York city! This does not mean you purchase lots, but it does mean you have fun trying on things. :)
They know how to find the gems at the second hand stores.
Makena assisted at a wedding, and Jewel was in and out of her AFOs and Wheel chair through out the day, we will train her Da but until then we will stay calm and carry on. We have decided that arguing is too stressful for all of us, every one thinks they are chief in our home, we just need to do what is best for Jewel with out the emotions that go with it. Good luck since we are such an emotional team.
"At the end of the day, we can endure much more than we think we can." -Frida Kahlo
5/8 Sunday
Happy Mother's day to all the Mommies out there xxo
For all Moms out there,
May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm up your face,
and rains fall soft upon your fields.
and until we meet again,
May God hold you in the palm of His hand. -An Old Irish Blessing
Friday, May 6, 2011
Post 100% by Jeweliana
Tonight is awana car race.I am racing my dragon car.
I won in design! The dragon won! YAY!
Thank you to Mom and Uncle Don.
I am a winner!
[Blog post] Done.
I won in design! The dragon won! YAY!
Thank you to Mom and Uncle Don.
I am a winner!
[Blog post] Done.
Photos of the Awana cars, Jewel and her Da, Jewel and Commander /Uncle Don, Jewel with her sissies and Mom with the first place trophy for best design!
Thursday, May 5, 2011
Jewel in her gait trainer!!!!
Makena here, and I feel like a kid in a candy shop, a camera nerd trying on new lens, a photographer with just the right lighting and beautiful models to take photos of in this natural light...eh, you get my idea. :)
Last night Jewel and I decided we had waited long enough and we were going to put together her KidWalk II gait trainer. Today we had had enough and she went in it for the first time.
Immediately after we strapped her in, she said "dance!" and Raven put Ke$ha's cd on and we were all dancing. It was so amazing. I've got some video of Jewel in her gait trainer, and mom's reaction when she first saw Jewel standing without human assistant. And yes, mom and I jumped around in glee.
Now here is some things Jewel has to say about her gait trainer.
Jewel
no way! i walk!
no fair! the color [supposed to be] red!
Makena: Do you like it?
Jewel No! I love it!
Makena:Does anything hurt when you are in it?
Jewel:Butt!
Makena:When you sit instead of stand?
Jewel:Ya
Makena:You are supposed to be standing only. haha
PS. When I showed Jewel the above photo, she didn't like it. I asked her why, and she said because of her shoes. So we will take a new photo when she can show off her shoes to you all. :)
ETA:
Last night Jewel and I decided we had waited long enough and we were going to put together her KidWalk II gait trainer. Today we had had enough and she went in it for the first time.
Immediately after we strapped her in, she said "dance!" and Raven put Ke$ha's cd on and we were all dancing. It was so amazing. I've got some video of Jewel in her gait trainer, and mom's reaction when she first saw Jewel standing without human assistant. And yes, mom and I jumped around in glee.
Now here is some things Jewel has to say about her gait trainer.
Jewel
no way! i walk!
no fair! the color [supposed to be] red!
Makena: Do you like it?
Jewel No! I love it!
Makena:Does anything hurt when you are in it?
Jewel:Butt!
Makena:When you sit instead of stand?
Jewel:Ya
Makena:You are supposed to be standing only. haha
PS. When I showed Jewel the above photo, she didn't like it. I asked her why, and she said because of her shoes. So we will take a new photo when she can show off her shoes to you all. :)
ETA:
Wednesday, May 4, 2011
Ohana means family
I’m Makena Gadient, the sister of Jeweliana a camper at Camp Imua, two time volunteer and have been fundraising for Camp Imua 2011 for the past 7 months.
I love Camp Imua because it changes lives. The biggest change is in the campers outlook on life. It gives each one a positive outlook on life and social experience, creates friends and builds bridges between the disabled and the abled. These kids matter and Camp Imua gives them a week of inclusion and friendship that isn’t based on ability, grade or money. Camp Imua supports families, and this experience helps bring these kids one step closer to reaching their full potential.
Camp Imua changes lives. Plain and simple.
These are the words that Makena and Raven shared today at the United Way committee, and Jewel's smile said what she could not say! I was so proud of my girls, the way they shared their light and their story. I know they were very nervous and I was so proud of them. You see Camp Imua is 'Ohana' and 'Ohana means family and family means that nobody gets left behind', from the movie Lilo and Stitch. But this is true to life, and this is what I witnessed, we came to share a five minute testimony in gratitude and for Camp Imua. The 'Aunties' that came from Imua Family Services, six or seven of them, board members and staff alike, all came to support the fundraising efforts for the children, "keiki" of Maui County so nobody gets left behind. I was so proud to be a part of this Ohana, to do our small part helping raise awareness and funds. It is good to be a part of my community.
Camp Imua by Raven, sister of Jewel;
It’s funny, you know, when the campers come up on the first day of camp, they’ll tell us, that they look forward to camp Imua more than Christmas… and I’ll tell you what, I think I look forward to camp more than Christmas as well.
It’s be hard to list all the amazing things about camp in only five minutes but I’ll try my best.
My sister and I volunteered for the first time back in 2009, when our youngest sister, Jewel decided to go to camp for the very first time. We had heard about camp when she was younger and still receiving therapy from Imua, but we never followed through with it until 09; but our whole family is glad we did!
Jewel made her very first friend at Camp Imua, a little girl named Ava; not only did Ava and Jewel become friends during camp, but by hearing Ava’s story, (she’s had something crazy like, 32 surgeries by only 8 years old) inspired and encouraged us to get a surgery done that Jewel needed.
You watch kids grow and change while at camp, my camper last year, never talked, but when she came to camp Imua, she started talking. That’s the kind of things you see happen at camp.
Campers get to do all kinds of things they wouldn’t get to do, while at camp Imua, zip-lining, surfing, horseback riding, and much, much more. The campers look past all the things they can’t do, and look at all the things they can do while at camp Imua. It helps them achieve their full potential, and aspire to keep going.
FUN FUN FUN FUN!!!!
But I’ll end with this, if any of you have a list of things you have to do before you die, add volunteering for Camp Imua down on it. Even if you don’t like working with kids, or you’re not a “camp person”, it will really change your life. Seeing the love, and happiness that Camp Imua brings to the special needs kids on Maui, is just that, life changing.
Camp Imua is all about acceptance and seeing the campers as kids, not just as differently able, or challenged kids. You see high school kids rise up and become the campers friends. Camp Imua connects you, the kids you work with at camp Imua, you see at the store like borders, or Costco, and mark my words, the don’t forget you, and you, you don’t forget them either.
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