3/31/11 Thursday
Last day of May
A day of feeling blue.
Jewel got to see John her body worker, he talked a lot about diet.
I think we are meant to be eating less starch.
Jewel cried and unwound.
Taking her to the dentist with me was too much for her, but we were trying to save on gas, 4.50 a gallon.
Her O/T session over lapped with the HCI, Hawaiian Canines for Independence, team.
Her AFO's were hurting, the session a little overwhelming but great.
The owner Mo and Kathy one of the HCI trainers arrived. They are partners with us for Grace's life. They travel to Japan, Australia and all over checking up on their dogs and recipients, seeing if they need more training. We will be getting a taler harness since Jewel has grown and they will be coming back with more verbal commands and ideas for therapy and games for both Jewel and Grace.
Jewel's hips were hurting and it has been a long tearful day.
Her Da carries her on his back, he is very patient.
He homeschools Jewel.
It has been a long day, last night was a long night as Jewel had a small fever and asked to be sat up most of the night.
Script frenzy starts tomorrow; the challenge is to write 100pg script in 30 days.
http://scriptfrenzy.org/fr/node/4017404
Makena and Raven will be participating and I doubt that I will have any computer time. So keep following that silver lining, fly your bright flags and follow your rainbow.
Thursday, March 31, 2011
Wednesday, March 30, 2011
Myofascial Release
3/30/11
It all started off being another good day,... somehow as the day progressed,"play dolly", and "play Barbie" was not satisfied.
Dolly withdrawals and great sadness set in, announced with big tears.
Jewel had an hour P/T, physical therapy session with Carol. An awesome session in spite Jewel being so tearful. Myofascial Release is what Carol worked on. It involves applying gentle sustained pressure into the Myofascial connective tissue. This helps Jewel a lot, there is trust in this relationship since Jewel has known Carol for many years.
The use of Myofascial Release allows Carol to work on Jewel's proper body mechanics, and release and body awareness.
Each Myofascial Release Treatment session is a hands on treatment, performed directly on the skin without oils, creams or machinery. " This enables the therapist to accurately detect fascial restrictions and apply the appropriate amount of sustained pressure to facilitate release of the fascia."
Carol is helping us pick out a piece of equipment. We are looking at gait trainers, she has it narrowed down to two; the Mulholland Walkabout and Prime engineering's KidWalk. So much to consider, both come in a close tie but only one choice can be made.
Any thoughts on these specific items are welcomed.
Our occupational therapy, O/T session with Crystal was awesome as usual. She came early and got to speak with Carol, catch up on information about Jewel and the Gait Trainer, which is important for Jewel's team to do!
Jewel is watching Tangled for the third time, she loves watching her movies over and over.
I researched taking the iodine (kelp) supplements, and spoke to some one who worked for the clean up for Three Mile Island. They said do not take any supplements, unless told to. They can do harm to the thyroid and pituitary glands, some damage could be irreversible. So parents eat fresh sea vegetables and that is all. Some children's multivitamins have trace amounts of iodine and this is safe.
It all started off being another good day,... somehow as the day progressed,"play dolly", and "play Barbie" was not satisfied.
Dolly withdrawals and great sadness set in, announced with big tears.
Jewel had an hour P/T, physical therapy session with Carol. An awesome session in spite Jewel being so tearful. Myofascial Release is what Carol worked on. It involves applying gentle sustained pressure into the Myofascial connective tissue. This helps Jewel a lot, there is trust in this relationship since Jewel has known Carol for many years.
The use of Myofascial Release allows Carol to work on Jewel's proper body mechanics, and release and body awareness.
Each Myofascial Release Treatment session is a hands on treatment, performed directly on the skin without oils, creams or machinery. " This enables the therapist to accurately detect fascial restrictions and apply the appropriate amount of sustained pressure to facilitate release of the fascia."
Carol is helping us pick out a piece of equipment. We are looking at gait trainers, she has it narrowed down to two; the Mulholland Walkabout and Prime engineering's KidWalk. So much to consider, both come in a close tie but only one choice can be made.
Any thoughts on these specific items are welcomed.
Our occupational therapy, O/T session with Crystal was awesome as usual. She came early and got to speak with Carol, catch up on information about Jewel and the Gait Trainer, which is important for Jewel's team to do!
Jewel is watching Tangled for the third time, she loves watching her movies over and over.
I researched taking the iodine (kelp) supplements, and spoke to some one who worked for the clean up for Three Mile Island. They said do not take any supplements, unless told to. They can do harm to the thyroid and pituitary glands, some damage could be irreversible. So parents eat fresh sea vegetables and that is all. Some children's multivitamins have trace amounts of iodine and this is safe.
Diaper Prescription
3/29/11
Another dry diaper! Jewel has been waking up with her overnight diaper dry! How wonderful.
During the day she is still wearing panties, I lost track of the count.
She is still willing to tell us and we have to be willing to carry her to the bathroom each time.
There are less false alarms, though there are still dead runs, when we take her and sit and wait and she says,'noth'ing(nothing)'.
She does not like her Da to take her,'no tank you' she tells him :)
Working on her putting her feet down when she is done, this helps me pull her undies back up.
Our bathroom is tiny and the corners are all reinforced steel, so we have to be careful that Jewel does not hit or bang her head on a corner going into the bathroom. I stand over the toilet and give her support at her shoulders, always slightly pushing her weight forward because she has a tendency to flip back. We do not want her to flip back, it is dangerous to her and it can hurt us as well.
It has been great for Jewel's self esteem to be able to go to the bathroom even if she totally relies on us to get her there and help her through the whole process. For those parents out there who are burdened by diaper costs; if you live in the United States, the diapers should be paid for by your medical insurance, whether private or state insurance. If your child is still in diapers over the appropriate age/stage due to a medical condition, your doctor should write a diaper prescription and then wait and follow up patiently it if does not go through right away. This was passed on to me by another mother, her daughter has Spina bifida (Latin: "split spine"). We parents need to help each other by passing on any valuable information, especially ones that can off set costs to our living budget. Your medical insurance should pay for your diapers.
Jewel did not want to go and feed the horses, so Raven and I went. She groomed & exercised Cookie Dough, and we fed him. It is important for him to get his exercise, keeping him limber and less arthritic. This way he is less likely to trip as much when we take Jewel riding on him. They weed- whacked all the tall grass and this made it a lot easier on him as well. He does not do well walking in the tall grass for some reason. It looked absolutely lovely and we are so thank full to be able to help and take Jewel on Cookie Dough aka Billy. Thank you Kandi! xx Like all older animals and people, we need to watch his weight gain. He tends to become too skinny, so we soak all his food and add rice bran for weight gain. We always bring carrots each time we go, this is how we have befriended some of the other horses!
Jewel has not been in her stander or wearing her AFOs lately due to the skin break down on her left foot, ankle and heel. Funny how Cookie Dough seems to trip a lot on his left side as well. So we will take Jewel to see the Shriners's out reach clinic this friday, the othodics department will visit our Island. AFOs; ankle-foot orthoses (AFOs), medically necessary and recommended. These fiberglass shells / keep her foot in a neutral position and it gives her foot stabilizing and correct foot/ankle support while in the stander. This prevents the foot from collapsing or and gives the ankle the support to weight bare Jewel's weight whilst in the stander for 1-2hrs.
Jewel and her sisters have been counting down the days for the movie, Tangled (by Disney), to come to the rental stores.
I rented the DVD and I was impressed by Jewel's loyalty.
She would not watch the movie with out both her sisters present, Makena was working at the library and Jewel said; "waiting, Makena Tangled'. She would not watch the movie until Makena got home! Sweet love :))
Since we found the lost soft hand braces, Jewel has been wearing them again.
They open up her hand, since she usually has a closed fist with thumb in the middle.
This soft hand brace opens up the hand, keeping the thumb out and keeping the hand in a functional position. I recommend these, not for overnight sleeping, because you can not see if the fingers and hand is loosing circulation. We are always checking Jewel's skin colour, with out even thinking about it.
No rain, no rainbows.
Another dry diaper! Jewel has been waking up with her overnight diaper dry! How wonderful.
During the day she is still wearing panties, I lost track of the count.
She is still willing to tell us and we have to be willing to carry her to the bathroom each time.
There are less false alarms, though there are still dead runs, when we take her and sit and wait and she says,'noth'ing(nothing)'.
She does not like her Da to take her,'no tank you' she tells him :)
Working on her putting her feet down when she is done, this helps me pull her undies back up.
Our bathroom is tiny and the corners are all reinforced steel, so we have to be careful that Jewel does not hit or bang her head on a corner going into the bathroom. I stand over the toilet and give her support at her shoulders, always slightly pushing her weight forward because she has a tendency to flip back. We do not want her to flip back, it is dangerous to her and it can hurt us as well.
It has been great for Jewel's self esteem to be able to go to the bathroom even if she totally relies on us to get her there and help her through the whole process. For those parents out there who are burdened by diaper costs; if you live in the United States, the diapers should be paid for by your medical insurance, whether private or state insurance. If your child is still in diapers over the appropriate age/stage due to a medical condition, your doctor should write a diaper prescription and then wait and follow up patiently it if does not go through right away. This was passed on to me by another mother, her daughter has Spina bifida (Latin: "split spine"). We parents need to help each other by passing on any valuable information, especially ones that can off set costs to our living budget. Your medical insurance should pay for your diapers.
Jewel did not want to go and feed the horses, so Raven and I went. She groomed & exercised Cookie Dough, and we fed him. It is important for him to get his exercise, keeping him limber and less arthritic. This way he is less likely to trip as much when we take Jewel riding on him. They weed- whacked all the tall grass and this made it a lot easier on him as well. He does not do well walking in the tall grass for some reason. It looked absolutely lovely and we are so thank full to be able to help and take Jewel on Cookie Dough aka Billy. Thank you Kandi! xx Like all older animals and people, we need to watch his weight gain. He tends to become too skinny, so we soak all his food and add rice bran for weight gain. We always bring carrots each time we go, this is how we have befriended some of the other horses!
Jewel has not been in her stander or wearing her AFOs lately due to the skin break down on her left foot, ankle and heel. Funny how Cookie Dough seems to trip a lot on his left side as well. So we will take Jewel to see the Shriners's out reach clinic this friday, the othodics department will visit our Island. AFOs; ankle-foot orthoses (AFOs), medically necessary and recommended. These fiberglass shells / keep her foot in a neutral position and it gives her foot stabilizing and correct foot/ankle support while in the stander. This prevents the foot from collapsing or and gives the ankle the support to weight bare Jewel's weight whilst in the stander for 1-2hrs.
Jewel and her sisters have been counting down the days for the movie, Tangled (by Disney), to come to the rental stores.
I rented the DVD and I was impressed by Jewel's loyalty.
She would not watch the movie with out both her sisters present, Makena was working at the library and Jewel said; "waiting, Makena Tangled'. She would not watch the movie until Makena got home! Sweet love :))
Since we found the lost soft hand braces, Jewel has been wearing them again.
They open up her hand, since she usually has a closed fist with thumb in the middle.
This soft hand brace opens up the hand, keeping the thumb out and keeping the hand in a functional position. I recommend these, not for overnight sleeping, because you can not see if the fingers and hand is loosing circulation. We are always checking Jewel's skin colour, with out even thinking about it.
No rain, no rainbows.
Tuesday, March 29, 2011
To have a friend
Photos of Jeweliana at her friend Hazel's princess Barbie birthday party. :) Thank you Hazel for inviting Jewel to celebrate your birthday with you, we had a lot of fun!
posted 3/29/11
To have a friend.
"Nobody sees a flower, really - it is so small, we haven't time and to see takes time, like to have a friend takes time." -G. O'Keeffe
posted 3/29/11
To have a friend.
"Nobody sees a flower, really - it is so small, we haven't time and to see takes time, like to have a friend takes time." -G. O'Keeffe
Monday, March 28, 2011
The power of hippo-therapy
3/28/11 Monday
Another inspiring hippo-therapy session.
First I would like to apologize for showing Jewel riding with out a helmet, I am still contemplating whether to keep the clip of her riding with out a helmet. Safety always first!
I think we gave up on the helmet because it was chocking Jewel too much, you know all those brains she has!
Also Jewel was riding bare back by her self and it was too much for her to lift up her head with helmet, she was choking a lot which was very concerning, discouraging and just scary!
Crystal the O/T came and we did a session with Cookie Dough. We groomed him and fed him a bit, then Crystal rode him to warm him up. Fed the other horse, washed the water trough out, topped up the water and wrote in the log.
Old horses tend to be arthritic and they need warming up. Jewel rode with Crystal for 35min.! It was wonderful in spite the old horse tripping often. Jewel rode so nicely with her helmet on, she said, " elp (help) head".
We worked on her base, diagonal movements, feeling the horse's gait under her legs, pushing her feet down, weight baring on arms, lifting her head tall, tracking with her eyes, giving Cookie Dough commands to "go Cookie Dough or walk on".
Today we discussed Jewel's reliance on us and what she has to gain or loose when she is not pushed, when she is babied, verses Jewel made to follow through on a task.
Crystal always encourages Jewel to stay positive and happy while working, since we will commence with the session so she might as well enjoy it and be happy. Crystal and Jewel work well together, there is a real relationship with a lot of respect. Jewel always comes around for Crystal unless Jewel is in real pain. Makena filmed today's session for us to learn from. I just can not imagine Crystal not being a part of our lives and come the end of April she will be gone, off on her next adventure. Thank you Crystal for all you have done for Jewel and all that you have taught us xx
What a difference from last thursday, 3/24/11.
Last thursday we did a hippo-therapy session, Jewel was under the weather, bit of an ear ache and just full of whinny.
A college student came to observe, she grew up with horses and has completed four years learning about the body and kinesiology.
Jewel was not motivated and if only that young lady could have seen today, what a difference.
The O/T brought lots of written information about occupational therapy in the school system and hippo-therapy to share with the college student. The questions and conversation shared was awesome, it is nice to see seeds planted and members of the community showing an interest in hippo-therapy.
Thank You Kandi for sharing Billy aka Cookie Dough with us. This is the only thing that helps with breaking Jewel's tone and gives her relief from her hip pain. Jewel has made many therapeutic and emotional gains being able to ride this wonderful horse. She got to feed one of the baby goats today, she was thrilled. Going to the horses has enabled Jewel to dream of riding in the fourth of July parade.
Another inspiring hippo-therapy session.
First I would like to apologize for showing Jewel riding with out a helmet, I am still contemplating whether to keep the clip of her riding with out a helmet. Safety always first!
I think we gave up on the helmet because it was chocking Jewel too much, you know all those brains she has!
Also Jewel was riding bare back by her self and it was too much for her to lift up her head with helmet, she was choking a lot which was very concerning, discouraging and just scary!
Crystal the O/T came and we did a session with Cookie Dough. We groomed him and fed him a bit, then Crystal rode him to warm him up. Fed the other horse, washed the water trough out, topped up the water and wrote in the log.
Old horses tend to be arthritic and they need warming up. Jewel rode with Crystal for 35min.! It was wonderful in spite the old horse tripping often. Jewel rode so nicely with her helmet on, she said, " elp (help) head".
We worked on her base, diagonal movements, feeling the horse's gait under her legs, pushing her feet down, weight baring on arms, lifting her head tall, tracking with her eyes, giving Cookie Dough commands to "go Cookie Dough or walk on".
Today we discussed Jewel's reliance on us and what she has to gain or loose when she is not pushed, when she is babied, verses Jewel made to follow through on a task.
Crystal always encourages Jewel to stay positive and happy while working, since we will commence with the session so she might as well enjoy it and be happy. Crystal and Jewel work well together, there is a real relationship with a lot of respect. Jewel always comes around for Crystal unless Jewel is in real pain. Makena filmed today's session for us to learn from. I just can not imagine Crystal not being a part of our lives and come the end of April she will be gone, off on her next adventure. Thank you Crystal for all you have done for Jewel and all that you have taught us xx
What a difference from last thursday, 3/24/11.
Last thursday we did a hippo-therapy session, Jewel was under the weather, bit of an ear ache and just full of whinny.
A college student came to observe, she grew up with horses and has completed four years learning about the body and kinesiology.
Jewel was not motivated and if only that young lady could have seen today, what a difference.
The O/T brought lots of written information about occupational therapy in the school system and hippo-therapy to share with the college student. The questions and conversation shared was awesome, it is nice to see seeds planted and members of the community showing an interest in hippo-therapy.
Thank You Kandi for sharing Billy aka Cookie Dough with us. This is the only thing that helps with breaking Jewel's tone and gives her relief from her hip pain. Jewel has made many therapeutic and emotional gains being able to ride this wonderful horse. She got to feed one of the baby goats today, she was thrilled. Going to the horses has enabled Jewel to dream of riding in the fourth of July parade.
Sunday, March 27, 2011
little talk story
3/27/11 Sunday
Yesterday was a difficult day for both Jewel and us.
She was miserable, her hip was hurting a lot and she just wanted to cry and whine.
She did not want any part of stretching, stander and brace.
Being positive is critical especial when in pain, if we can distract her and help her get happier she relaxes and her over all well being flourishes.
Finally Raven and I stretched her legs and arms though she protested loudly. I made her wear her hip adductor brace and gave her calm water in the evening. Her high tone was causing her hips to spasm. She got some rest last night. Yesterday and Friday evening she did not get rest, she was tightly wound. She could not even enjoy her movie we rented for her, Nanny McPhee.
What do we do when we have days like these? We take turns being with Jewel, caring for her, distracting her, reading to her, playing with her, and sometimes this is not enough. We have to stay patient, calm and positive. Sometimes we have to let her cry, sympathize with her, and keep trying to get her out of this funk. Sometimes we to cry. Always praying. Jewel can be very emotionally expressive.
Jewel was a twin. I lost the other baby in the end of my first trimester. The hospital called it a "vanishing twin". I still had two placentas which made me bleed a lot. My pregnancy was full of fear. My eldest daughter was seven at the time. She was hoping to be a midwife or ob-gyn (Obstetrics and gynaecology) one day. Makena was reading a lot of nursing and midwifery books for her reading list. So at this young and tender age she knew this pregnancy was a high risk. I was medivact to Honolulu for preterm labour. I do not recommend the hospital I was sent to. It seems the medical liberties that are taken have more protective parameters in favor of the hospital and advancement of science than the patient does. This is the difference between implied and informed consent. I now know that you can refuse care, choose to be sent to another hospital, question everything, ask for someone to explain this in layman's language, refuse a nurse or doctor's care.
I now know that few in the medical world remember their oath to" do no harm".
There is a huge difference between a nurse or doctor who has a calling and passion verses those who do it as a job!
I have found out that you are treated differently because of your economic & social status,age,race,religion.
It may be better to be in a christian hospital where they value the life of the premature child.
When I went into labour we were advised that the hospital was not obligated to intervene with help since the birth would be so premature, by law she could be left to expire. President Bush changed this when he was in term.
The hospital I was in did not look at the NICU (neonatal intensive care unit) as a nursery, the children were not looked at as children because they were not full term, thus they were sick, just systems and functions. I am still angry at the abuse Jewel suffered by the hands of the Neonates.
Jewel was born vaginally, she was a dry birth since my sack had ruptured 10 days earlier. She had apgars of 6 & 7, she was 2 pounds 3 ouces and 19 centimeters long. She was perfect. She did her breathing transition on her own. She cried like a mix of baby lamb and baby kitten. She was tiny, my wedding band could fit over her foot, her skin was transparent, but it was obvious to us that she was fearfully and wonderfully made. These tiny baby's need a voice, someone to protect them.
I believe that I would have been treated better with a country vet caring for me and my child. I believe Jewel would have fared much better in the hands of a country vet. I have found that veterinarians are more compassionate and they have to go to school longer than a doctor.
When we complained about her care, were told that the NICU was a entity of its own and the hospital was not in control of it, the only solution was to sue them. Can you imagine what I felt when I was told this, I was already overwhelmed, one child in the incubator, the other two on the other island. I was watching over Jewel, pumping my milk, just wanting to go home and be a mom to my three daughters. I had no energy or resources for this.
For those who are strong enough to sue the hospital I encourage you to, for two reasons. One; you will need all the help for your child and it is expensive raising a special needs child. Almost all the equipment is astronomical and you want to get as much equipment and therapy that will help your child make gains, out of pocket costs drain your ability to stay afloat as a family. Two; Money talks in our society, when the hospital which is a business hurts financially, this is the pressure that we need to ensure that more of our children have voices and are not hurt & injured due to negligence, carelessness, and advancement of science. There are brave nurses who are willing to testify on behalf of a child, some rare advocated but they are there.
They would not give my milk to Jewel and in Hawaii you can not donate your breast milk to a milk bank.
So I just kept pumping to keep my milk in.
Then came an angel nurse; she helped me stimulate Jewel's checks to get a good attachment. She said not to watch the alarms and computers but just to watch Jewel. "Watch your baby Mom", she would coach me. "Get to know her skin colour and when it changes because of distress." Such practical advise, and it worked. I insisted on taking the ng tube(nasogastric tube is used for feeding) out and nursing her, even though the ng tube causes distress each time it is fed back into the nose, my goal was to nurse Jewel and we were going to try wholeheartedly. Those nurses who laughed at me; you suck! I got to nurse Jewel for four years! This sucking motion helps develop the muscles that will help with future eating and talking. All the nurses I met at the NICU were dead, except the one who helped me with nursing Jewel. They have lost their hearts and this makes them useless.
One of the best pieces of advice my mother in law gave me was," believe in God, believe in your self and believe in Jewel". To survive the NICU you will need these three. When Makena heard that I had gone into preterm labour she sobbed, for she knew this was not good. Makena and Raven have been the best big sister's to Jewel than you can imagine. Their faithfulness to our family has been epic, their faith is amazing. Makena is no longer interested in being a ob-gyn, she was so disturbed by the treatment of Jewel and I in the hospital. She now embraces her photography as a means of artistic expression and career. Both Makena and Raven could be a pediatric occupational therapist, physical therapist or speech pathologist, for they have been to almost every session and helped with continuing the new excises at home with Jewel. I am eternally grateful to them and their beautiful spirits. God has blessed me with three lovely daughters!
Yesterday was a difficult day for both Jewel and us.
She was miserable, her hip was hurting a lot and she just wanted to cry and whine.
She did not want any part of stretching, stander and brace.
Being positive is critical especial when in pain, if we can distract her and help her get happier she relaxes and her over all well being flourishes.
Finally Raven and I stretched her legs and arms though she protested loudly. I made her wear her hip adductor brace and gave her calm water in the evening. Her high tone was causing her hips to spasm. She got some rest last night. Yesterday and Friday evening she did not get rest, she was tightly wound. She could not even enjoy her movie we rented for her, Nanny McPhee.
What do we do when we have days like these? We take turns being with Jewel, caring for her, distracting her, reading to her, playing with her, and sometimes this is not enough. We have to stay patient, calm and positive. Sometimes we have to let her cry, sympathize with her, and keep trying to get her out of this funk. Sometimes we to cry. Always praying. Jewel can be very emotionally expressive.
Jewel was a twin. I lost the other baby in the end of my first trimester. The hospital called it a "vanishing twin". I still had two placentas which made me bleed a lot. My pregnancy was full of fear. My eldest daughter was seven at the time. She was hoping to be a midwife or ob-gyn (Obstetrics and gynaecology) one day. Makena was reading a lot of nursing and midwifery books for her reading list. So at this young and tender age she knew this pregnancy was a high risk. I was medivact to Honolulu for preterm labour. I do not recommend the hospital I was sent to. It seems the medical liberties that are taken have more protective parameters in favor of the hospital and advancement of science than the patient does. This is the difference between implied and informed consent. I now know that you can refuse care, choose to be sent to another hospital, question everything, ask for someone to explain this in layman's language, refuse a nurse or doctor's care.
I now know that few in the medical world remember their oath to" do no harm".
There is a huge difference between a nurse or doctor who has a calling and passion verses those who do it as a job!
I have found out that you are treated differently because of your economic & social status,age,race,religion.
It may be better to be in a christian hospital where they value the life of the premature child.
When I went into labour we were advised that the hospital was not obligated to intervene with help since the birth would be so premature, by law she could be left to expire. President Bush changed this when he was in term.
The hospital I was in did not look at the NICU (neonatal intensive care unit) as a nursery, the children were not looked at as children because they were not full term, thus they were sick, just systems and functions. I am still angry at the abuse Jewel suffered by the hands of the Neonates.
Jewel was born vaginally, she was a dry birth since my sack had ruptured 10 days earlier. She had apgars of 6 & 7, she was 2 pounds 3 ouces and 19 centimeters long. She was perfect. She did her breathing transition on her own. She cried like a mix of baby lamb and baby kitten. She was tiny, my wedding band could fit over her foot, her skin was transparent, but it was obvious to us that she was fearfully and wonderfully made. These tiny baby's need a voice, someone to protect them.
I believe that I would have been treated better with a country vet caring for me and my child. I believe Jewel would have fared much better in the hands of a country vet. I have found that veterinarians are more compassionate and they have to go to school longer than a doctor.
When we complained about her care, were told that the NICU was a entity of its own and the hospital was not in control of it, the only solution was to sue them. Can you imagine what I felt when I was told this, I was already overwhelmed, one child in the incubator, the other two on the other island. I was watching over Jewel, pumping my milk, just wanting to go home and be a mom to my three daughters. I had no energy or resources for this.
For those who are strong enough to sue the hospital I encourage you to, for two reasons. One; you will need all the help for your child and it is expensive raising a special needs child. Almost all the equipment is astronomical and you want to get as much equipment and therapy that will help your child make gains, out of pocket costs drain your ability to stay afloat as a family. Two; Money talks in our society, when the hospital which is a business hurts financially, this is the pressure that we need to ensure that more of our children have voices and are not hurt & injured due to negligence, carelessness, and advancement of science. There are brave nurses who are willing to testify on behalf of a child, some rare advocated but they are there.
They would not give my milk to Jewel and in Hawaii you can not donate your breast milk to a milk bank.
So I just kept pumping to keep my milk in.
Then came an angel nurse; she helped me stimulate Jewel's checks to get a good attachment. She said not to watch the alarms and computers but just to watch Jewel. "Watch your baby Mom", she would coach me. "Get to know her skin colour and when it changes because of distress." Such practical advise, and it worked. I insisted on taking the ng tube(nasogastric tube is used for feeding) out and nursing her, even though the ng tube causes distress each time it is fed back into the nose, my goal was to nurse Jewel and we were going to try wholeheartedly. Those nurses who laughed at me; you suck! I got to nurse Jewel for four years! This sucking motion helps develop the muscles that will help with future eating and talking. All the nurses I met at the NICU were dead, except the one who helped me with nursing Jewel. They have lost their hearts and this makes them useless.
One of the best pieces of advice my mother in law gave me was," believe in God, believe in your self and believe in Jewel". To survive the NICU you will need these three. When Makena heard that I had gone into preterm labour she sobbed, for she knew this was not good. Makena and Raven have been the best big sister's to Jewel than you can imagine. Their faithfulness to our family has been epic, their faith is amazing. Makena is no longer interested in being a ob-gyn, she was so disturbed by the treatment of Jewel and I in the hospital. She now embraces her photography as a means of artistic expression and career. Both Makena and Raven could be a pediatric occupational therapist, physical therapist or speech pathologist, for they have been to almost every session and helped with continuing the new excises at home with Jewel. I am eternally grateful to them and their beautiful spirits. God has blessed me with three lovely daughters!
Goodbye CP -movie
3/27/11
DVD ; Goodbye CP directed by Kazuo Hara
Makena said I should tell you more of how I personally felt and what I thought while watching this documentary.
It made me think because these young men were thought provoking with some of their statements about life with CP. They are activists bring CP to the public in Japan in the 70's. I was intrigued by the footage, hearing some of the parent's speak and was impressed with a bystander's comment in the beginning. Parts of the doc. made me feel uncomfortable, at times I was astounded by their determination to be independent. They were living their life on their terms. At one part I was angry by some ones statement about violating another. They openly discuss, comment & express their sexual experiences. They were very transparent, honest with sharing their thoughts. Beatnik artists, this is not the sweet fuzzy Disney production but rather raw.
says posted by Makena but she was just still signed in, actually posted by Ivana
DVD ; Goodbye CP directed by Kazuo Hara
I ordered this dvd from Netflix.
It is not for the faint of heart or for the young parent or underaged viewer.
It is a stark & honest voice from a group CP male activists.
This documentary is not for everyone.
I was taken in by the black and white starkness, the culture and social statements from the 70s CP young adults in Japan.
The subjects tell their story in their own creative way.
I would not have been able to watch this in the past.
That is all I have to say.
Makena said I should tell you more of how I personally felt and what I thought while watching this documentary.
It made me think because these young men were thought provoking with some of their statements about life with CP. They are activists bring CP to the public in Japan in the 70's. I was intrigued by the footage, hearing some of the parent's speak and was impressed with a bystander's comment in the beginning. Parts of the doc. made me feel uncomfortable, at times I was astounded by their determination to be independent. They were living their life on their terms. At one part I was angry by some ones statement about violating another. They openly discuss, comment & express their sexual experiences. They were very transparent, honest with sharing their thoughts. Beatnik artists, this is not the sweet fuzzy Disney production but rather raw.
says posted by Makena but she was just still signed in, actually posted by Ivana
Vidio clip, hipp-therapy Jewel 2:49
The sound is not audible, no mike on video camera. I will try to post some therapeutic information later, or ask the occupational therapist to comment. Crystal starts out with doing some diagonal movements because every functional movement is based on diagonal movements. Raven, Jewel's sissy is leading Cookie Dough, who trips a bit. Crystal who is an O/T is Jewel's therapist and back rider. I, mom, side walker, hold on to Crystals leg, so she feels secure and to have hands ready to take Jewel.
Makena up loaded this clip on 3.27/11, thank you Makena, you are wonderful,brilliant and very helpful! xxx Mom
Saturday, March 26, 2011
Video clip -Jewel on horse - 9 seconds
Jeweliana Riding her horse with her occupational therapist.
Posted on 3/26/11
Filmed by Makena.
Friday, March 25, 2011
Nick Vujicic
3/25/11 Friday
Check this web site out;http://www.lifewithoutlimbs.org/faqs-about-nick
http://www.lifewithoutlimbs.org/faqs-about-nick
you can also hear Nick speak on youtube
Some days I hit the wall, everything seems hard, and I need encouragement.
I first learnt of Nick in the Free surf magazine, he was tandem surfing with Bethany Hamilton! (She had her arm bit off by a shark).
Jewel and I watched one of Nick Vujicic's clips on youtube, and it inspired both of us. ( He was born with out arms and legs).
We are looking forward to seeing Bethany Hamilton's movie Soul surfer on April 8th, 2011.
Everything is challenging, difficult and hard for Jewel, even for me when I work with her. Life can be so frustrating!
We need inspiration and watching these two wonderful people share on youtube is what we needed today!
Jewel is more than her label and limitations, she has to want to work and fail and work to achieve her goals and dreams.
God has a perfect plan for Jewel, watch out world.
I hope I can have the strength to do right by you Jewel.
We all need to be cheered on, we all have value, a purpose, and a place.
Check this web site out;http://www.lifewithoutlimbs.org/faqs-about-nick
http://www.lifewithoutlimbs.org/faqs-about-nick
you can also hear Nick speak on youtube
Some days I hit the wall, everything seems hard, and I need encouragement.
I first learnt of Nick in the Free surf magazine, he was tandem surfing with Bethany Hamilton! (She had her arm bit off by a shark).
Jewel and I watched one of Nick Vujicic's clips on youtube, and it inspired both of us. ( He was born with out arms and legs).
We are looking forward to seeing Bethany Hamilton's movie Soul surfer on April 8th, 2011.
Everything is challenging, difficult and hard for Jewel, even for me when I work with her. Life can be so frustrating!
We need inspiration and watching these two wonderful people share on youtube is what we needed today!
Jewel is more than her label and limitations, she has to want to work and fail and work to achieve her goals and dreams.
God has a perfect plan for Jewel, watch out world.
I hope I can have the strength to do right by you Jewel.
We all need to be cheered on, we all have value, a purpose, and a place.
Thursday, March 24, 2011
Shared moments, pearls that sister's share
3/24/11
Today Jeweliana interrupted me reading "Huckelberry Fin" and said that I should be reading her "how to train your dragon book 5" instead. I tried to persuade her to let me continue reading my book by telling her "i don't have a bookmark."
Today Jeweliana interrupted me reading "Huckelberry Fin" and said that I should be reading her "how to train your dragon book 5" instead. I tried to persuade her to let me continue reading my book by telling her "i don't have a bookmark."
Jewel ingeniously suggested I use her mermaid barbie which was on the couch besides us.
With that I switched to reading her her book. xP
Isn't she brilliant?
ps the barbie bookmark did temporarily work. :) It is better fort the spine than laying it open on the floor
Horses and O/T
3/24/11
We are off to horses today.
Should be a great session with Cookie Dough. Crystal our O/T will be there and a college student will come to observe.
I am hopeful as more people are willing to give of their lives to come alongside a retired horse and a team of people helping someone achieve their full potential. Life is a wonderful dance when we make ourselves available.
Yesterday our occupational therapy session was great, first Crystal worked on loosening Jewel up. Sometimes she is like a block of wood, so Crystal works to loosen her hips and pulls her ribs lower. Crystal is all hands on and playfully loosens Jewel, even though she protests, Crystal will joke and divert Jewel's attention in conversation. She uses Grace, Jewel's service companion dog from HCI. (Hawaii Canines for Independence). Grace will come do a "visit" or "snuggle", immediately Jewel will loosen up, take a deep breath and relax. The love between Jewel and Grace is very present. Crystal then has Jewel in a side sitting position and they will work on diagonal strokes with Jewel's arm as she pets Grace. These diagonal movements are building blocks to functional movements. Since Jewel has been sick her tone and nonfunctional movements kicked in, so Crystal patiently worked at breaking those patterns to put her in functional body language and head in midline, body straight. Sounds simple, but we can break out in a sweat working with Jewel, she is very strong. We target Grace with kibble and reward her with a lot of loving praise, when we think she needs a break, we commence therapy using something else. Like yesterday they played with Jewel's yellow doll umbrella, what a fun therapy session! Thank you Crystal and Grace.
Oh, Jewel went to see John the body worker this morning. It is a lovely drive through a lush agriculture area where everything is green. As usual after John worked on Jewel, she is more relaxed, calm, content, happy and grounded. All the edges seem to have faded. Thank you John.
We are off to horses today.
Should be a great session with Cookie Dough. Crystal our O/T will be there and a college student will come to observe.
I am hopeful as more people are willing to give of their lives to come alongside a retired horse and a team of people helping someone achieve their full potential. Life is a wonderful dance when we make ourselves available.
Yesterday our occupational therapy session was great, first Crystal worked on loosening Jewel up. Sometimes she is like a block of wood, so Crystal works to loosen her hips and pulls her ribs lower. Crystal is all hands on and playfully loosens Jewel, even though she protests, Crystal will joke and divert Jewel's attention in conversation. She uses Grace, Jewel's service companion dog from HCI. (Hawaii Canines for Independence). Grace will come do a "visit" or "snuggle", immediately Jewel will loosen up, take a deep breath and relax. The love between Jewel and Grace is very present. Crystal then has Jewel in a side sitting position and they will work on diagonal strokes with Jewel's arm as she pets Grace. These diagonal movements are building blocks to functional movements. Since Jewel has been sick her tone and nonfunctional movements kicked in, so Crystal patiently worked at breaking those patterns to put her in functional body language and head in midline, body straight. Sounds simple, but we can break out in a sweat working with Jewel, she is very strong. We target Grace with kibble and reward her with a lot of loving praise, when we think she needs a break, we commence therapy using something else. Like yesterday they played with Jewel's yellow doll umbrella, what a fun therapy session! Thank you Crystal and Grace.
Oh, Jewel went to see John the body worker this morning. It is a lovely drive through a lush agriculture area where everything is green. As usual after John worked on Jewel, she is more relaxed, calm, content, happy and grounded. All the edges seem to have faded. Thank you John.
Home made chicken soup
3/23/11
Big pot of home made chicken vegetable soup!
The uninvited guest is still here, Raven came home with it, but she is only sick for half a day. She gave it to Makena who is usually sick for longer. Then what we were all dreading Jewel got it. We were diligently nursing her around the clock, watching and happily finding that she was recovering nicely. Then I got it, which is against the rules, no Mommy getting sick! I used GSE the original grapefruit seed extract and it kicked butt fast. Then Makena came home with some thing different, it took her down fast. And she seems to have shared it with Jewel. At this point every one wants the comfort of home made chicken soup, the main ingredient is love. Organic whole chicken and onion,garlic,bell pepper, celery, cilantro, kyle, zucchini, green beans, carrots, potatoes, and chives, and more garlic. Yes, nothing beats a warm bowl of mom's soup. We are all tired.
Going to see Jewel's body worker this morning.
Bought some kelp from the health food store, need to research more about giving and taking kelp.
It is Grace's morning for nail trimming, she has a nice routine of keeping her in top shape, when I have more time I will share more on her care. Jewel still calls for Grace as her dragon, it is sweet to watch how they care for each other.
Jewel is up, have a lovely day, we will, in spite of the yukies at our house xx
Big pot of home made chicken vegetable soup!
The uninvited guest is still here, Raven came home with it, but she is only sick for half a day. She gave it to Makena who is usually sick for longer. Then what we were all dreading Jewel got it. We were diligently nursing her around the clock, watching and happily finding that she was recovering nicely. Then I got it, which is against the rules, no Mommy getting sick! I used GSE the original grapefruit seed extract and it kicked butt fast. Then Makena came home with some thing different, it took her down fast. And she seems to have shared it with Jewel. At this point every one wants the comfort of home made chicken soup, the main ingredient is love. Organic whole chicken and onion,garlic,bell pepper, celery, cilantro, kyle, zucchini, green beans, carrots, potatoes, and chives, and more garlic. Yes, nothing beats a warm bowl of mom's soup. We are all tired.
Going to see Jewel's body worker this morning.
Bought some kelp from the health food store, need to research more about giving and taking kelp.
It is Grace's morning for nail trimming, she has a nice routine of keeping her in top shape, when I have more time I will share more on her care. Jewel still calls for Grace as her dragon, it is sweet to watch how they care for each other.
Jewel is up, have a lovely day, we will, in spite of the yukies at our house xx
Wednesday, March 23, 2011
Umbrellas
"Where umbrella?" , has been Jewels mantra,... until a small manila envelope arrived.
Umbrella's arrived in the mail! Whoop, whoop! :))
Yes, three little doll umbrellas arrived in the mail, what fun.
Blue,pink and yellow.
Jewel said,"no way!" So all the girls got to play with their dolls and umbrellas.
Amazing umbrellas for $2.99, a great buy. They work like real umbrellas.
So all the sisters played dollies, I love it how my older girls are not too old to play with dolls and their sissy!!
I am glad I honored their request for these umbrellas, for life is made up of small moments threaded together.
I absolutely adore my children, they are my joy, I love them all equally always and forever.
EEk Jewel is rolling this morning. I am not going to scream and do a little dance but I will do this in my heart. When I express too much outward excitement she stops doing what ever I was excited about, like rolling. I do think it just may be too much pressure to perform and she seems to be a perfectionist. When she tries to hard her high tone kicks in and frustration ends the activity. At this moment she is relaxed and is rolling a bit, she does not do this often, so I am happy!
Oh, one thing that helps the spasticity in her hips is hippo-therapy, which is horse back riding. Yahy , to natural aids that help with over all health and strengthening. !!
Enjoy the little moments in your day and respect yourself and the people in your life.
Umbrella's arrived in the mail! Whoop, whoop! :))
Yes, three little doll umbrellas arrived in the mail, what fun.
Blue,pink and yellow.
Jewel said,"no way!" So all the girls got to play with their dolls and umbrellas.
Amazing umbrellas for $2.99, a great buy. They work like real umbrellas.
So all the sisters played dollies, I love it how my older girls are not too old to play with dolls and their sissy!!
I am glad I honored their request for these umbrellas, for life is made up of small moments threaded together.
I absolutely adore my children, they are my joy, I love them all equally always and forever.
EEk Jewel is rolling this morning. I am not going to scream and do a little dance but I will do this in my heart. When I express too much outward excitement she stops doing what ever I was excited about, like rolling. I do think it just may be too much pressure to perform and she seems to be a perfectionist. When she tries to hard her high tone kicks in and frustration ends the activity. At this moment she is relaxed and is rolling a bit, she does not do this often, so I am happy!
Oh, one thing that helps the spasticity in her hips is hippo-therapy, which is horse back riding. Yahy , to natural aids that help with over all health and strengthening. !!
Enjoy the little moments in your day and respect yourself and the people in your life.
delight in your children
3/22/11
Aloha :))
It has been a few days, Jewel is recovering nicely from her cold.
She said,"hate sick"! Don't we all!
I am a mother of three, I do not know everything, nor do i prescribe doing it my way. I do not offer medical advise nor am I a physician.
I am just sharing a glimpse of our journey, our life, what we use, what we believe, and hope it encourages you and inspires you on your journey. Raising a special needs child is the same as raising a regular child, and is not the same as anything that you have every done. It is a mixed plate to the extreme, but a worthy journey and full of life, love and surprises.
I am still using; Black Elderberry from Gaia Herbs, 1tsp in the morning and one in the evening, this boosts the immune system.
I gave Jewel honey on demand and throat coat tea, room temperature.
She has been craving apple juice and we got some from the health food store, usually she just drinks water. Both Raven and Jewel seem to crave apple juice when they are sick.
I gave her Old Indian Wild Cherry Bark Syrup with Echinacea as directed on bottle for two days. Then I dropped this and used Umcka cold care for children as directed on bottle. She has gone to bed early 8pm since she said,"tired". Usually she goes to bed at 9pm, she has always gone to sleep late and never naps. She has slept well the past few nights, and has not skipped a beat with her food. This child enjoys her food.
I have found Chestal honey by Boiron is good for coughs and gives her relief. I have used this in the past. Jewel is doing much better and this means, so are we.
Jewel got to go to a princess barbie birthday party. She was so excited, picked out the Barbie with tea party accessories from the store. She arrived in her purple party dress and her Barbie ready to play. Her sisters came dressed with their Barbies as well, I guess you are never to old to dress up and play Barbies! This is Jewel's sixth birthday party that she has been invited to and she was thrilled to join in the festivities. Thank you Hazed, we all had fun at your party xx
Monday brought another Hippo-therapy session with Crystal our O/T. First we feed all the horses, except Cookie Dough because we have to soak his food for a while. Then we clean all the water troughs and fill them with fresh water. We clean Cookie Doughs hoofs and we brush him so he looks even more handsome, we hug him and love on him. Then we saddle him up. He loves his job with Jewel and we appreciate him a lot! xox
It was amazing as usual, Crystal got Jewel from limp doll to a girl sitting upright on a horse.
Makena filmed the session with our new $200 video recorder. We hope this footage will help us transition when Crystal leaves the Island in the end of April. The second half of the session the O/T got off the horse, took the saddle off and Jewel rode solo just on her bare back pad. Raven led Billy aka Cookie Dough and Crystal and I were side walkers. Crystal and I gave little physical support but a lot of verbal encouragement and a little stimulation down her spine. Jewel did very well, it was exhausting work for her but well worth the effort, she slept soundly that evening. Cookie Dough stepped on Raven's foot, poor thing, she was brave and tried hard not to cry but it hurt a lot. He is old and stumbles a lot and seems to have lead feet, but we love him lots.
On Sunday we got to hang with good friends. We relax and eat, swim and talk about good books. I am blessed to know and have such lovely friends. My heart delights in them and it is what sustains me and keeps me sane. Thank you friends xox
A few people I know are eating kelp, sea weed, taking kelp capsules for combating the possible radiation from Japan. I have not done any of this for my girls, I hope and pray that we will be fine.
We got Jewel's Doctor and her O/T to write a letter for the horse owners, stating that Jewel rides Billy aka Cookie Dough for therapeutic use only, we hope it will bring a tax break for these generous owners who have so graciously allowed Jewel to ride Billy.
We are still having problems with Jewel's AFOs; skin break down at heel and ankle. It is such an art to get her shoes that do not hurt her feet!
Life is busy, work is keeping me. Wish I could just stay home full time and have an income, maybe there will be a season for that again.
Take care and delight in your children no matter the diagnosis. Remember you are not alone.
Friday, March 18, 2011
digging at the beach
We went to the beach last month, this is a photo from it. I don't think Makena's film camera advanced correctly though...
Jeweliana loved the beach because we let her weight-bear on her arms and dig. "Dig, dig dig!" she cries happily. :) 3/18/11
Poems for Jewel;
-- At the Seaside, Robert Louis Stevenson
The Rainbow
-Christina Rossetti
Boats sail on the rivers,
And ships sail on the seas;
But clouds that sail across the sky
Are prettier than these.
And ships sail on the seas;
But clouds that sail across the sky
Are prettier than these.
There are bridges on the rivers,
As pretty as you please;
But the bow that bridges heaven,
And overtops the trees,
And builds a road from earth to sky,
Is prettier far than these.
As pretty as you please;
But the bow that bridges heaven,
And overtops the trees,
And builds a road from earth to sky,
Is prettier far than these.
Thursday, March 17, 2011
Friendship
3/17/2011
It has been a full and hectic day, like most days around here.
Jewel went to see her body worker at 9:30 am.
Another great session with John, he works on her nervous system and is very gentle with Jewel.
His touch is very light with her and she always unwinds.
He is encouraging us to look closer at her diet and cut out more starch. I will be looking into this. I remember the neonatologist telling me that nutrition was the "golden key".
Somedays I wish I had a secretary, researcher and a aid to help :)
When I got home at noon Jewel was sick, she has a sore throat and is very phlegmy.
Last november we cut out her milk with good results.
So I made up some throat coat tea, gave her honey and black elder berry to boost her immune system. Lots of water and will give her golden seal and echinacea with dinner.
Jewel received a present in the mail today from her friend Sophie x
It was a beautiful water color of sweet peas.
Thank you Sophie, Jewel said "Great, Tank You :)"
We need to get it framed and up on the wall. Tears of Joy.
I love how the internet brings us together.
Having a friend is important, friends are gifts and we need to cherish them!
I have to go and tend to Jewel xox Be well
3/17/11 Love b-lated b-day gifts
Jewel's P/T brought a Happy birthday, today you are 10 years, 1 month and 16 days old!
Gotta love it! Yes everyday is a celebration.
Jewel got an amazing jeweled butterfly tee shirt and 3 princess games; bingo, checkers, tick tak-toe and card games! Jewel kept saying Thank You! Yes, thank you Carol xox :)
Today we got Jewel a Tangled (Rupunzel) barbie, because she had such a great attitude yesterday!
Happy St. Paddies day every one, time to make some green cookie. mmmm
My left food - film
3/17/11
We rented; My Left Foot; special edition
We rented; My Left Foot; special edition
1hr 38min. 1989
Daniel Day - Lewis plays the Irish writer Christy Brown, who was born with Cerebral Palsy and was misdiagnosed as mentally disabled. I do not know if I could have watched this DVD before this point but I was ready to watch it, and recommend it. Why, because it is about a life, one that was loved and worth living, a life full of the ups and downs but a life that blossomed to its full potential. I have not studied on Christy Brown and do not know how true to life this movie is but I enjoyed it in spite of its length. Check it out! :)
Read up on Christy Brown, author, painter & poet
He wrote, My left foot.
http://christybrown.org/
speaking
3/17/11 Jewel is speaking more and articulating much clearer.
Mostly short phrases, but that girl has to keep up with a chatty mother and sisters who talk at the same time. Speak and be heard Jewel!
"not hungry" is her newest phrase :) Too bad love, I am gonna feed you any ways xx
Mitzvah
3/17/22
One of my favorite clients wants to bless Jewel with a Mitzvah.
They are grateful for their many blessings and they wish to bless Jewel.
They are thankful that the tsunami did not hurt them.
They are thankful that the tsunami did not hurt them.
One of the meanings for Mitzvah refers to an act of expressing human kindness towards another, there by changing their lives. A Mitzvah, a gift of blessing!
So they will pay for her Gait Trainer, WOW and Thank You!!
:)
So we are busy researching, talking to our P/T and getting our information together to chose a piece of equipment that this family will so generously purchase for Jewel. Contacting past therapists that have moved, for we need their advise, we need wisdom.
So much to be grateful for, so many blessings, even when we least expect it.
I am floored, teared up with gratitude and excited for this opportunity.
My posts are long winded like me, I hope if any one is reading them they will be inspired, encourage, motivated, and more. I am not an expert, I know each family must find their path and what is best for their child/ren, I am just sharing what works for me, what I have found and I hope many blessings find you. xxx
Wednesday, March 16, 2011
Shriners gives help and therapy scholarship
3/16/11 Wednesday
Missed some days.
Missed some days.
We had a lovely P/T session today, story books are made up of sessions like this.
Carol is a seasoned P/T and her love for pediatric work shows.
She used to work with Jewel when she was just a wee thing.
It is nice to have Carol back in Jewel's life.
We applied for a home school scholarship to aid with this therapy with the P/T.
We applied and received some money for this, thank you!!!
We applied and received some money for this, thank you!!!
We belong to HSLDA Home School Legal Defense Association.
http://www.hslda.org/
They have a branch of the Home School Foundation to assist families like ours, we applied for some assistance and we were allotted some funds, which have helped Jewel make some gains, for which we are very grateful for.
http://www.homeschoolfoundation.org/index.php?id=6
http://www.shrinershospitalsforchildren.org/en/CareAndTreatment/Orthopaedics/CerebralPalsy.aspx
Our session with Carol was amazing. Carol always works on stretching Jewel and uses myofascial release for this. She measured Jewel for a gait trainer, brought information regarding different choices in gait trainers. We discussed this, she did a lot of research for Jewel, which I appreciate. It is unavoidable to love the therapists, there is a bond that one can not avoid. Carol worked with Jewel's AFOs, ankle-foot orthoses (AFOs) they still need some work, so we will let Shriners Children's Hospital know. The P/T did walking and dancing with Jewel, so much great work transpired and Jewel was willing to work! She actually said "no" because she did not want to stop! We used the full length mirror as an aid for the therapist to see Jewels posture and appealed to Jewel's vanity to give eye gazed into her eyes in the mirror.
Here is a link to find a Shriners Children's Hospital in your area;
http://www.shrinershq.org/ShrinersHQ/
O/T, P/T, horses
Last thursday 3/10/11
We had a great horse therapy or hippo-therapy session.
Crystal the O/T rode with Jewel. My friend's daughter who is graduating high school came as an observer. She is an avid horse girl, involved in the local rodeo and roping club as well.
She has thought about being a P/T or an O/T so we figured we would invite her to observe and ask the O/T any questions she may have. There is nothing like witnessing the real thing to get a true taste of hippo-therapy.
It took a while for Jewel to settle down and her tone was active, but then the magic happened and Jewel settled into her seat and the gait of the horse became her gait. Jewel's hips moving with the horse. She was sitting tall with Crystal as her back rider and therapist, hardly holding Jewel, just gently stabilizing her head at the temples. So wonderful, I encourage any one with a special needs label to look into hippo-therapy! Our session was ended with Jewel doing push-ups on Billy aka Cookie Dough. Animals are a wonderful healing dimension in our lives. The goat had twins and they were a sweet sight to behold. We love going to visit the horses.
Sunday, March 13, 2011
helping each other
3/13/11 Sunday
It feels like a week has gone by since Japan got hit with earthquake,tsunami, fires, flooding, death, nuclear reactors in danger of melt downs.
We are emotionally exhausted, just from feeling so sad for the people of Japan and the bombardment of bad news from that area.
Evacuating showed us that we need to refine our list and look at how we can improve.
I went to get gas at 9pm that thursday evening and it was gridlock already, the gas stations were a traffic jam.
Jewel's ears are tuned into the news now. I am keeping the news watch to mute on the computer so as not to scare her.
Since we evacuated on thursday evening her high tone has kicked in on high mode.
When we were at my friends house where she became as stiff as an ironing board, I fed her some chamomile tea and this had a slight calming effect, healthy food also has a grounding effect on her body. Taking her outside the next day and letting her watch some movies was a good distraction for her mind, and of course her faithful service dog Grace is always at Jewel's side. No one slept on thursday evening, Jewel asked questions all night long, like; "what now, how are people, what happening,..." she blabbered these questions all night long.
She has not been in her hip adductor brace since she is fighting it too hard at this time.
I wonder about all the special needs children of Japan and I hope that they are comfortable and comforted. Jewel drinks water constantly, she eats three huge meals and snacks throughout the day. Then I wonder about the people in Japan with out food and water, I am so glad that we are able to help, even in a small way.
I am grateful for our sense of community, our desire and willingness to help each other.
I am thankful for my good friends and our love for family.
I am thankful for this evening.
May God bless and keep us safe.
Friday, March 11, 2011
3/11/11
Last night Japan was hit by a devastating earth quake, 9.1
We left our home to go stay at a friends place on higher ground.
Hawaii was on Tsunami watch.
Jewel said; "scary", "too little to die".
We are all very tired but greatfull to be alive!
Our hearts and prayers go out to the people in Japan
xoxoxoxo
Blessings
Last night Japan was hit by a devastating earth quake, 9.1
We left our home to go stay at a friends place on higher ground.
Hawaii was on Tsunami watch.
Jewel said; "scary", "too little to die".
We are all very tired but greatfull to be alive!
Our hearts and prayers go out to the people in Japan
xoxoxoxo
Blessings
Thursday, March 10, 2011
No excuses
Last night was a rough sleepless night for Jewel and I.
These nights used to be the norm and now they are stretched out with nights that bring some sleep and rest. What kept us up you ask, well the spasms in Jewel's hips kept firing and it hurts her, it is exhausting for her. They can not pull her hips out any more since she sleeps with the hip adductor brace from Shriners Children's Hospital. All their care for Jewel has been free of charge to us, thank you to all those who support Shriners.
Gary read Soul Surfer, a true story of faith, family, and fighting to get back on the board by Bethany Hamilton, to Jewel. She said, "Great book!". Jewel would like to write to Bethany. Bethany has a movie coming out soon. One of our pictures on the fridge is a photo of Bethany and Nick Vujicic on a surfboard. It comes out of the Free Surf Magazine, and the Article is titled, No Excuses. Bethany is on the surfboard and just for those who are not familiar with her she had her left arm bitten off by a shark. She is surfing tandem on the board with Nick and he was born with out arms or legs. It is a very powerful image, they do not take no for an answer, and neither should you says the article. check it out at freesurfmagazine.com
http://freesurfmagazine.com/Volume-7-Number-7/editors-note-july-2010.html
Jewel is resting now, sleep is upon her.
Today we will go with the O/T to see the horses and ride Cookie Dough.
Every moment with my children makes for a remarkable day.
Wednesday, March 9, 2011
Horse therapy
3/9/11 Wednesday snuck upon us
Today I finished reading Daughter by Mark Stewart-Jones
A beautiful heart felt book, I hate to finish this book but I am so thankful that they shared their story.
It carries a noble message of love and possibilities.
Go grad a copy for your book club or just for yourself.
Go grad a copy for your book club or just for yourself.
Another wonderful Occupational Therapy session with Crystal. Sadly these to shall come to an end after April, when Crystal shall move off Island. She has been a blessing and we are happy for her but are starting to feel sad about her departure.
I wanted to share a good book for horse therapy;
-The Horse, The Handicapped, and The Riding Team In A Therapeutic Riding Program.
A Training Manual for Volunteers.
By; Barbara Teichmann Engel, Margaret Lois Galloway & Mary P. Bull.
There are grate organizations like;
-NARHA The North American Riding for the Handicapped association
-HHFTH happy Horsemanship for the Handicapped
-American Hippo-therapy Association
-Therapeutic Equestrians inc. of California
There are a lot of courses and handbooks out there for horse therapy.
I would like to encourage horse people who have barns and horses, to consider opening their barns to help facilitate those with disabilities. A lot of seasoned retired horses who have been working horses are perfect for therapy horses in the last seasons of their lives. It gives the horses great purpose and keeps them fit, active and loved. We are so grateful to Kandi for her willingness to let Jewel ride Cookie Dough aka Billy. He is a retired rodeo horse, and had always been a working cowboy's horse. He is even tempered, very patient, and bomb proof (does not scare or startle easily). We did sign a liability release form and we are very careful, consciences when we go out to the horses. We try to help as much as we can. We are not horse people and we have learnt a lot, thank you Kandi!
Sophie from the book Daughter wants to send Jewel a piece of her Art, and I told Jewel this. Her response was, "tank you (thank you)". Her response to life is always grateful and short winded. Like when she says, "water, eese (please) and tank you". During her O/T session she said, "go away", and later on in the session, " No tank you". The work was hard and physically demanding, yet she did it and it was amazing to witness. The abled educated hands of the O/T always amazes me!
Grace has to go out, the girls are back from volunteering and for some reason I feel like crying.
Life is great, life is full of hope, warmth, memories, laughter and mystery.
I hope you have the encouragement, support, love and knowledge that you need, if not I encourage you to go find what you need.
links
3/9/11
Here are some links that may help you;
Here are some links that may help you;
1. Hawaii Canines for Independence, HCI.
They trained Jewel's service dog and our whole family
http://www.hawaiicanines.com/
2. An article from the Maui Newspaper on Jewel and HCI and the Japan team we trained with.
http://www.mauinews.com/page/content.detail/id/525890.html?nav=10
3. The Japan team got Bailey the service Dog from HCI. They took him back to Japan to work in the hospitals over there. Check it out, it will inspire, educate & blow your mind!
http://www.tylershineon.org/
It is the nature of man to rise to greatness if greatness is expected of him - John Steinbeck
Keep doing good work, it is never too late to dream and achieve the impossible!
daughters
Dear Makena, and Raven
I know that you read this blog in support of what I am doing.
Thank you for being there for me, especially since I am not very technologically savvy!
You helped put this blog up and helped upload the photos, millions of thank yous xoxoxo
You are the best daughters and big sissies to Jewel, in the whole world!
Thank you for being you, I love you lots, always and forever, Mommy :)
ps: This would be a lonely journey with out you girls!
The three of you make life fragrant, loud with laughter, and colorful!
Tuesday, March 8, 2011
Each one of us has our task for today
3/8/11 Tuesday
You got Mail!
I love that sound, I love receiving and writing letters.
Today we got a nice surprise and heard from Sophie, from the book Daughter by Mark Stewart-Jones! This is the part of technology that I love; when it brings people together.
So I didn't actually receive a letter but an e-mail :)
Jewel has bright dark blue toe nails, seems the girls painted their toes and fingernails yesterday.
We had an amazing day today. Jewel got to get her massage and Jimmy worked on her neck and worked on other needed areas as well. He is very respectful of her tolerance and never forces anything. These sessions always help with bm(bowel movements). Having a child who is not ambulatory makes for constipation issues.
Diet and environment are important to aiding this issue.
Thank you Jimmy, he has worked on Jewel since Nov. 10 and refuses to take payment.
Our O/T session with Crystal was nothing short of amazing as usual. We used a full length mirror during the session, this helps Jewel see correct body position and besides which girl does not enjoy looking at herself! Crystal requested the dollies be put away since they were too exciting for Jewel and her tone kicked in to where no therapy or functional movements were possible. We used the two mermaid barbies instead, and Grace was side by side through out the session. Jewel told Crystal to"go away", and Crystal just continues with the session, she always jokes with Jewel, keeping the tone positive. Once again we observed that Jewel does better working through out the hour session, when we give her a break she loses that momentum and energy and gets whinny. We put the harness on Grace at the end of the session and she looked so proud in her uniform. She is trained to stand and the command is "Brace", the weight is only put on her harness handle, this is distributed directly over her shoulder blades. Jewel does not apply much pressure to Grace, and the whole exercise is exhausting for both Jewel and her O/T. Service dogs love working and become an integral part of the family.
Jewel thanked me again today for her dolly umbrella, she is looking forward to it arriving in the mail.
"Never parent out of guilt", I remember Tina telling me this endless summers ago.
I had completely no idea what that statement meant.
Time and life has a way of showing us these simple yet profound truths.
Sometimes I feel torn, I have three daughters and am I doing right by all of them, am I meeting their individual needs, am I supporting their talents and dreams, am I cheering them on, am I available for them when they need me.?????? All the girls took violin for years, Jewel included, this was my gift to them for all they do for Jewel and us as a family. Then came the day I just couldn't afford more lessons and they stopped the violin. I miss hearing them practice and it is what it is, and my love for them never diminishes. I love them all with my whole heart!
I parent less out of guilt.
We have always helped Jewel as a family and each one of us has our task that we execute with her. Some of it is toilet help, some specific to speech homework, horse therapy etc. The girls and I have almost been to every therapy session, this helps us care for her during the absence of the therapist, this makes us Team Jewel! It is all good and a worthy lifestyle. We love each other, this is our life and we are grateful.
Makena just got home and let me know that the DVD; Including Samuel is not in the Hawaii library system, so she is getting the librarian to order it :)
Raising the bar
3/7/11 Monday
Jewel is happy :)
Including Samuel, a documentary by Dan Habib
www.includingsamuel.com
We received the DVD and it is a lovely documentary on Samuel's family, challenges of Cerebral Palsy and other special needs families. It is a positive voice, we need this! Please check it out!
Feeling rather like an under achiever today, I know this not true but still wishing I could do more for and with Jewel.
Almost done with the book daughter by mark stewart-jones, and I just do not want it to end.
It is a worthy book to purchase and read, again giving a voice to cerebral palsy. Amazing story of Sophie and her father, her story is very encouraging and inspiring, talk about raising the bar and dreams!! Loving this book. Thank you for sharing your story with me!!
The first thing Jewel said to me when I took her to the bathroom yesterday morning was, "thank you umbrella mommy" and "I love you". How could I resist but to go on line with her sisters and find her a dolly umbrella! Actually we found some on e-bay for $2.99 so I bough each girl an umbrella for their dolls :) Happy day!
She did this for her brown leggings, kept asking for them, even though she did not own a pair. Every morning Jewel picks out what she wants to wear and it was brown leggings, after a week of this I drove to the store and bough her a pair. She said; "I hate grey!, hate grey leggings".
End of story, now she has purple, pink (light, dark and sparkly) , green, brown, black with silver sparkles, and jeggins (jean leggings). She is too skinny and small for regular pants and the ones that fit are too short. So leggings to the solution. This girl has an eye for fashion and knows what she wants. It is good to wear what you love, honor that!
Feeling overwhelmed. Feeling positive. Our lives are worth living. Feeling inspired.
Monday, March 7, 2011
dolly Jewel
(From Left to Right)Jewel's doll Kanani, Makena's doll Marina, Raven's doll Maranda, and Jeweliana. :)
Sunday, March 6, 2011
little-big victory
3/6/11 Took Jewel to the bathroom, her diaper was dry again! Another little-big victory.
She went on the toilet and another day in big girlie panties!
What a lovely feat and journey!
I forget what day it is for being potty trained and free of diapers in the day.
Grace has a hot spot and we need to take care of this! Poor Gracie, sometimes I think she needs her own therapy cat!
persistent persuasion
3/6/11 Sunday
Jewel is still asleep, the hip adductor brace has given us all so many more moments of rest.
She went to bed say in "tank you umbrella", which means; mom I want an umbrella for my dolly and thank you for getting one. She did this for her brown leggings. She did not own brown leggings, yet every morning she would request her "brown leggings! please and tank you!" :)
She has figured out the art of persistent persuasion.
For the past week she has been saying, "cut hair", because her bangs/fringe seem to grow fast and get into her eyes. Her sisters love her hair long and were protesting this cut, they know that I am hopeless at cutting a straight line. I used to make Makena and Raven wear a striped shirt and I would attempt to follow the line on the shirt, still I would fail. Then for bangs I would put tape on their hair and follow the tape and still hopeless, it would always end up crooked. When the girls were old enough they got smart and grew out their bangs and just a couple of years ago they started getting their hair trimmed at an affordable family salon down the road. We all see Scott, he is the only male hair dresser at the salon. He cuts Jewels bangs and gives her hair a trim. The back she mostly handles, because she twirls her curls around her fingers so tightly that she can not release her finger and then out comes all the hair as she pulls her finger free. I first took Jewel to see Scott in January and they hit it off, she loved the large wall mirrors as well and felt like a big girl. I sit in the hair dresser's chair and he puts his bib around me, Jewel is in my lap and then he puts his silky brown bib with pink polka dots around her. I end up looking like a tow headed woman from Mars. He talks Jewel through the process, cuts fast and precise, he works around her floppy head. She has very weak neck muscles and it is hard for her to keep her head up straight and still like the rest of us, so I facilitate where needed. Raven sits in a chair near by complementing her sister. Jewel is all dimply smiles when the trim is over, now everyone can see her bright green eyes. The other hairdressers come by to compliment and praise, Jewel is just about jumping out of my lap from sheer joy, this attention she enjoys. The salon is small, holds x5 chairs, and has a maximum of three hair dressers and tow clients on a busy day, it is perfect for Jewel. They now know her and I always tip large because they have rocked her world!
Jewel is a minimalist at heart, she doesn't want much but will tell you when she like or wants something. She never clutters or overdoes a craft with her speech pathologist. She will chose x3 stickers at most and they will have to be tidy, even and symmetrical. I love this about her!
Our home is small, crowded, messy and eclectic.
Jewel has great taste and it has always been uniquely her own.
When I took the girls bathing suit shopping a few summers ago, there was a huge sale, Makena and Raven were trying on tons of swim suits and Jewel saw one and that was it. There was no convincing her otherwise, the pink suit she chose was not on sale, it was a Roxy, name brand. I ended up purchasing it for her, since I could not persuade her on another suite.
This morning is a long post so I will end.
I am grateful for this morning.
Jewel is waking.
Makena and Raven are still asleep.
Grace needs to go out and relieve herself.
My coffee is done.
I hope you know what swim suit you like and I hope you purchase it for yourself, we all deserve to feel beautiful and ware our favorite colors. :)
Saturday, March 5, 2011
"I have idea"
3/5/11
Jewel said to Makena this morning, "I have idea, make dolly umbrella", great idea Jewel!
I love how her vocabulary and sentences are improving!
It has opened up so many definite wants and ideas.
We use to cry a lot, all of us, since we could not understand Jewel and she would get so frustrated with us! We are all very good at guessing but sometimes this is just not enough. Sometimes when I don't get what she is saying, she says "nuting (nothing)", I hate it when she says this. It closes the door and I want so much to figure it out!
Friday, March 4, 2011
What makes us peers?
3/4/11 Still raining out, still absorbed by book; daughter by mark stewart-jones
Silly me; I have always thought in context of me/us fighting for Jewel's life, I have never thought on how she is a survivor and that she has a great will to live.
Pondering on what activities make us peers with Jewel; Jewel and her sissies, Jewel and her Da, Jewel and I... that place where it is not about ability vs. lack of ability...
Laughing with us, watching TV with us, singing with her sisters, her love for books, looking at Art at the Art Galleries (Jewel loves wood sculptures), riding Cookie Dough her horse with or without a back rider, dreaming, making up stories, re-naming people/animals, telling us that; "I hate grey", "give away", "No", "Yesss", conversations & talking with her, teasing her sisters about boys :), listening to books on CD, when she can sing rap songs by heart with her sisters. Jewel is a auditory learner.
This evening Jewel said that she wanted to paint more, read better, take Grace out more, (Grace is her service companion dog from Hawaii Canines for Independence), learn about dragons, dance more! I think we should all do more of the above !!
nuggets of information
posting things i have found, sites come and go, but here it is; (gold nuggets of information.)
1. A interesting site that showcases a piece of equipment that helps with CP and spina bifida clients. Apparatus from Switzerland
www.cp-hotline.com/etreatment01.htm
2. This site is the abc homeopathy site, with questions and answers
http://abchomeopathy.com/forum2.php/62969/
3. This is the International Academy of Classical Homeopathy site
http://www.vithoulkas.com/content/view/92/114/lang,en/
Jewel and her O/T Crystal had a great session today! We used a mirror in our session which usually helps Jewel see what good body posture looks like, plus she enjoys looking at herself :)
Crystal showed me how diagonal movements break the tone and aid with functional movement.
How to suppress certain neuropathways and activate others is going to be our quest to overcome her tone/ spasticity.
I called her doctor at Shriners Children's hospital and he was most supportive of my inquiries about what "they" currently use to treat tone.
We talked about baclofen, clinical marijuana, valium, and how these drugs are not effective in management of spasticity. I talked about how I wanted to use "alternative" way to intervene, like acupuncture, holistic, homeopathic, and that I would be looking in to these.
I look forward to finding something more natural that will help Jewel make more gains! 3/4/11
looking for alternatives
3/4/11 Friday
Raining on Maui
Looking for alternative and homeopathic ways to "treat" /eliminate spasticity in Jewel's muscles.
Help, if you know any foods, herbs, "alternative" treatments, like acupuncture, etc please post, thanks. I have seen the Baclofen pump, medical marijuana and these are no interest to me.
Thursday, March 3, 2011
Book; Daughter by Mark Stewart-Jones
3/2/2011 Wed.
Reading; daughter by mark stewart-jones
Given to me by a special book-fairy-friend, thanks friend!
Reading it slowly so that i do not rip open any of my healed wounds.
A father sharing his world with his daughter, Sophie.
Yes, she has CP (cerebral palsy) but that is not the story.
Guarding my heart as I read, I am afraid it will open up too much feeling and tears, yet I am having a harder time putting the book down.
Tuesday, March 1, 2011
Poem; I saw a child by John Anthony Davies
I Saw A Child
by John Anthony Davies
I saw a child who couldn't walk,
sit on a horse, laugh and talk.
Then ride it through a field of daisies
and yet he could not walk unaided.
I saw a child, no legs below,
sit on a horse, and make it go
through woods of green
and places he had never been
to sit and stare,
except from a chair.
I saw a child who could only crawl
mount a horse and sit up tall
Put it through degrees of paces
and laugh at the wonder in our faces
I saw a child born into strife,
Take up and hold the reins of life
and that same child was heard to say,
Thank God for showing me the way.
I love this poem, it tells volumes of what we see when we take Jewel out to ride Cookie Dough, and especially when she rides with Crystal! 3/1/2011 Tuesday
by John Anthony Davies
I saw a child who couldn't walk,
sit on a horse, laugh and talk.
Then ride it through a field of daisies
and yet he could not walk unaided.
I saw a child, no legs below,
sit on a horse, and make it go
through woods of green
and places he had never been
to sit and stare,
except from a chair.
I saw a child who could only crawl
mount a horse and sit up tall
Put it through degrees of paces
and laugh at the wonder in our faces
I saw a child born into strife,
Take up and hold the reins of life
and that same child was heard to say,
Thank God for showing me the way.
I love this poem, it tells volumes of what we see when we take Jewel out to ride Cookie Dough, and especially when she rides with Crystal! 3/1/2011 Tuesday
Choices
3/1/11
"I understand you, and I shall not attempt to make you change your mind...I have told you what I think, and that is all. I shall remain your friend even if you act contrary to my convictions, and I shall help you even if I disagree with you." Milan Kundara
Last night I pulled the plug on the documentary that was going to be about Jewel's story. I felt that all they wanted to portray was a poor unfortunate soul and send money. My daughter's life is worth living, she is more than her label people! Think I may do the doc. my self!
"I understand you, and I shall not attempt to make you change your mind...I have told you what I think, and that is all. I shall remain your friend even if you act contrary to my convictions, and I shall help you even if I disagree with you." Milan Kundara
Last night I pulled the plug on the documentary that was going to be about Jewel's story. I felt that all they wanted to portray was a poor unfortunate soul and send money. My daughter's life is worth living, she is more than her label people! Think I may do the doc. my self!
I am ultimately grateful for this experience, for the learning curve was fast and fears. It made us come together and communicate as a family, a team. This experience tested our resolve, we had to think and weigh the options for the whole family, we had to feel good about the final outcome. If we are going to put together a video or documentary, we need to be in full control, and we need to feel good about it. If a project does not feel right then something is wrong. We were forced to look deep through the cloudy emotions and we exercised our choice to protect Jewel and our family and what a liberty not to take for granted.
"A nation's greatness is measured by how it treats its weakest members." ~ Mahatma Ghandi
To be or not to be Filmed
3/1/2011 Tuesday,
I am grateful for so much; our lives, our family and every other detail.
I am so grateful for our three children, what a gift and blessing they are!
With this said, there is a burden of responsibility that comes with being a parent.
Like taking an oath to do no harm and protect always.
Encourage, nurture and cheer on!
There is an accountability of checks and balances, always checking to see what they are up, teaching and training, feeding and clothing.
Recently had the possible opportunity to tell Jewel's story through a video documentary. I guess it would be just a part of her story since she is still so young. I never realized how many bases I would have to cover, question and protect. What was her story? What was our intention, purpose and mission statement? What would we be willing to show and not willing to show. How many days and hours a day would we allow our children to be filmed.
The final vote was from my gut and it did not sit well with the intent and purpose of those in charge. I did not feel that my family would be safe and I felt that Jewel's story would be manipulated to justify their means. So I honored my gut feeling and pulled the plug on the project. If a documentary is meant to be made, the opportunity will be presented or made. We shall proceed with integrity and truth and light. The doc. will be done professionally or not at all. And as my dearest friend Kathleen said; "Jeweliana is not a cause!" You are correct Kathleen! And as Makena so eloquently put, Jewel is a whole and complete complex person, not an anonymous cold label!
There was so much pressure to do the film, to consent to a complete open door , no contract, no mission statement....you get the drift. No is a lovely word, do not be afraid to use it to protect your children, no matter the outside pressure. I must say that Jewel's O/T was amazing, very real help during this process and unconditionally supportive. Thank you Crystal! Thank you to all the workers/therapists who support Jewel and her family unconditionally!
another great documentary
Check out this documentary! It is about a family with two sons, one with cerebral palsy and including him into his class room, school and society. It is well done, deep and inspiring. http://www.includingsamuel.com/store.aspx
http://www.includingsamuel.com/store.aspx
Amazing and inspiring documentary about a boy named Samuel.
http://www.includingsamuel.com/store.aspx
Amazing and inspiring documentary about a boy named Samuel.
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