Ever since Isis was born, she's had trouble with what the professionals call the "suck, swallow, breathe reflex." Apparently being able to do at least 2 of these at the same time is quite a complex endeavor, and many of us, including kids with cerebral palsy, have trouble managing this. In order to get sprung from the NICU, Isis had to prove that she could drink all of her milk from a bottle for 24 hours. She managed this fine and we were sent home, where she immediately began having trouble with bottles, choking and gasping and the like. Nursing was less troublesome, because, I gather, it is harder for a baby to get milk from the breast than from a bottle.
By the time she was 8 months old, though, Isis was not gaining weight and things were looking grim for a number of other reasons. Her doctor finally said she was going to have to get a g-tube (a port that is surgically placed into the stomach where breast milk or formula can be poured in via a tube.) I dutifully pumped breast milk and supplemented it with rice milk because I was vehemently opposed to formula and fully committed to the benefits that only breastmilk could give her. At the time, doctors were saying this was the end of Isis eating by mouth, mainly because a medicine she was taking was causing her to have reflux (GERD) that itself caused a whole other host of side effects.
I was planning to be a Dr. Sears, attachment parenting, whole foods mom, so this news was devastating. At the time, I was studying herbal medicine with books by Susun Weed. I did not want my kids nutritional needs being met primarily by Ross Labs!
Things evened out on the GERD front, we adjusted to life with a feeding tube (which made giving the three medicines she took three times per day so much easier) and I began to research how I could naturally nourish my kid who has profound feeding disorders.
I needed food that was:
High in fiber (to combat the constipation that comes along with the spastic and floppy muscle tone fluctuations secondary to cerebral palsy)
High in fat and calories (to get her to gain weight)
Had the same vitamin and mineral content of the foods we all eat
Was soft and could somehow be pureed or ground into a texture that she could orally manage.
In the seven or so years since then, I have learned quite a bit. I am going to share what I have learned here for any parent or loved one who is embarking on this same journey. Each entry in this topic will be labeled "Pleasing Purees" so they can be easily found. I hope this information can help you and your loved ones to enjoy food. It has for my daughter who is now older, on the growth chart and (thank God) out of distress.
Sep 20, 2010
Sep 13, 2010
Why we keep going to Euro-Peds
 |
| at Euro-Peds, August 2010, Day 2 |
Because she is a kid with cerebral palsy, sitting on the floor with her arms down and her head up takes major practice and many warm-up activities. A two week visit to Euro-Peds allows for forty hours to practice all kinds of skills, and warm-up all kinds of muscles that a typical one hour weekly PT session just cannot accomplish. With forty hours of massage, stretching, warm-ups, strength training and repetitive exercises under her belt, Isis has a chance to make strides at home, in school and in life that she otherwise would not have.
On a recent bike ride through the neighborhood, she reached up and, using her thumb and first finger, plucked her glasses off of her face. That trick was impossible for her to do previously. And plucking glasses off leads to accurately hitting switches in class and more intentional use of her hands in many avenues of life. The journey begins with the first pluck. Ha!
Sep 12, 2010
Please Give to 5th Annual Run for Isis
RUN FOR ISIS 2010
PORTLAND MARATHON
Dear Friend:
Your contribution to the Run for Isis these last five years has impacted the life of my niece, Isis, tremendously. I want to express thanks and gratitude on her behalf. I have once again chosen to do the Run for Isis, more specifically, the Portland Marathon, on October 10, 2010. In this sixth year, I am asking for you to consider a financial contribution to enhance her life.
Isis, who is eight years old, has spastic, athetoid quadriplegia Cerebral Palsy (CP). Barring phenomenal breakthroughs in medicine, she will remain speechless, taking nutrition from a gastric feeding tube, and confined to a wheelchair, for the duration of her life.
Each year, I raise money and put my body to the test, as a means of working hard for the contributions, and a way to honor the physicality we all take for granted, so that Isis may attend a private physical therapy clinic, Euro-Peds, where she undergoes intensive therapy. The assistance she receives at Euro-Peds greatly enhances the possibility of Isis' progression in an effective and innovative manner toward inclusion in everyday life.
Your contributions have made a considerable difference. Since 2005, the first year of fund raising, Isis has taken six trips to Euro-Peds (each trip costs approximately $8,000) in Pontiac, Michigan where she has benefited from countless hours of one on one physical therapy. This intensive therapy has helped Isis learn the basic proprioceptive knowledge that in order to walk she must lift one leg at a time - something she had no concept of before – and something most parents of typical, able-bodied children cannot comprehend.
Isis has a wonderful spirit and tremendous will to live. She has an irresistible smile. Her disposition is sunny; she laughs at goofy jokes, adores music and watching people dance, and generally movement of any kind. How unfortunate that she was born into a body that has made purposeful movement of any kind a mist, a wisp of a scent that constantly eludes her.
Like all children, Isis is growing every day, and growth spurts that cause typical children some aches or pains can be devastating to a child with cerebral palsy. A large growth spurt could cause Isis to lose the somatic knowledge she has learned over the long and grueling schedule of therapies. Growth spurts can cause muscular weakness and risk of spinal curvatures, or scoliosis, which can only be corrected with bulky braces or neurosurgery to straighten the spine. Currently Isis has a sixteen-degree curve in her spine, so these are possibilities we fear and attempt to prepare for. The only hope to impede this rather dire setback is the possibility housed in the little body and enormous mind of Isis. Intensive therapy at Euro-Peds helps tone and exercise her body, and it has also given her a chance to be in a nurturing place where there is a sense of belonging and where people really believe she has the potential to excel. This is why I run a marathon on her behalf: I believe in and honor her quest for independence and inclusion in community activities, sports, school and, eventually, employment. I train hard and run as fast as possible to glorify the independence you and I take for granted. I suffer in training sometimes at 4am due to my work schedule to baptize this sentiment.
Suffice it to say, your contributions these past two years have helped Isis avail herself of opportunities, which previously were out of her reach and made them possible. As with training for any race of any distance, preparing Isis for a better life starts with one day at a time. Can you help me get her closer to her life dreams by contributing again this year? Your consideration is deeply appreciated.
Please Note:
In their restructuring as a for-profit hospital, the Doctors Hospital of Michigan (where the Euro-Peds clinic is housed) has consulted with tax accountants and decided to end the named accounts. Whereas in previous years donors had the option of sending a tax-deductible contribution for Isis to the North Oakland Foundation, this is no longer legal or possible. We were very sad to learn of this and are seeking other, tax-deductible options in the future.
If you wish to contribute, please send a check payable to Euro-Peds with "Isis" in the memo line. These funds are aggregated by staff at the Doctors Hospital of Michigan and will be reserved in a special account just for her (to pay for another visit to Euro-Peds.) The mailing address is:
We hope you will still choose to contribute. On behalf of Isis and my sister, we thank you for your consideration.
PORTLAND MARATHON
Dear Friend:
Your contribution to the Run for Isis these last five years has impacted the life of my niece, Isis, tremendously. I want to express thanks and gratitude on her behalf. I have once again chosen to do the Run for Isis, more specifically, the Portland Marathon, on October 10, 2010. In this sixth year, I am asking for you to consider a financial contribution to enhance her life.
Isis, who is eight years old, has spastic, athetoid quadriplegia Cerebral Palsy (CP). Barring phenomenal breakthroughs in medicine, she will remain speechless, taking nutrition from a gastric feeding tube, and confined to a wheelchair, for the duration of her life.
Each year, I raise money and put my body to the test, as a means of working hard for the contributions, and a way to honor the physicality we all take for granted, so that Isis may attend a private physical therapy clinic, Euro-Peds, where she undergoes intensive therapy. The assistance she receives at Euro-Peds greatly enhances the possibility of Isis' progression in an effective and innovative manner toward inclusion in everyday life.
Your contributions have made a considerable difference. Since 2005, the first year of fund raising, Isis has taken six trips to Euro-Peds (each trip costs approximately $8,000) in Pontiac, Michigan where she has benefited from countless hours of one on one physical therapy. This intensive therapy has helped Isis learn the basic proprioceptive knowledge that in order to walk she must lift one leg at a time - something she had no concept of before – and something most parents of typical, able-bodied children cannot comprehend.
Isis has a wonderful spirit and tremendous will to live. She has an irresistible smile. Her disposition is sunny; she laughs at goofy jokes, adores music and watching people dance, and generally movement of any kind. How unfortunate that she was born into a body that has made purposeful movement of any kind a mist, a wisp of a scent that constantly eludes her.
Like all children, Isis is growing every day, and growth spurts that cause typical children some aches or pains can be devastating to a child with cerebral palsy. A large growth spurt could cause Isis to lose the somatic knowledge she has learned over the long and grueling schedule of therapies. Growth spurts can cause muscular weakness and risk of spinal curvatures, or scoliosis, which can only be corrected with bulky braces or neurosurgery to straighten the spine. Currently Isis has a sixteen-degree curve in her spine, so these are possibilities we fear and attempt to prepare for. The only hope to impede this rather dire setback is the possibility housed in the little body and enormous mind of Isis. Intensive therapy at Euro-Peds helps tone and exercise her body, and it has also given her a chance to be in a nurturing place where there is a sense of belonging and where people really believe she has the potential to excel. This is why I run a marathon on her behalf: I believe in and honor her quest for independence and inclusion in community activities, sports, school and, eventually, employment. I train hard and run as fast as possible to glorify the independence you and I take for granted. I suffer in training sometimes at 4am due to my work schedule to baptize this sentiment.
Suffice it to say, your contributions these past two years have helped Isis avail herself of opportunities, which previously were out of her reach and made them possible. As with training for any race of any distance, preparing Isis for a better life starts with one day at a time. Can you help me get her closer to her life dreams by contributing again this year? Your consideration is deeply appreciated.
Please Note:
In their restructuring as a for-profit hospital, the Doctors Hospital of Michigan (where the Euro-Peds clinic is housed) has consulted with tax accountants and decided to end the named accounts. Whereas in previous years donors had the option of sending a tax-deductible contribution for Isis to the North Oakland Foundation, this is no longer legal or possible. We were very sad to learn of this and are seeking other, tax-deductible options in the future.
If you wish to contribute, please send a check payable to Euro-Peds with "Isis" in the memo line. These funds are aggregated by staff at the Doctors Hospital of Michigan and will be reserved in a special account just for her (to pay for another visit to Euro-Peds.) The mailing address is:
Doctors’ Hospital of Michigan
Euro-Pēds
461 W. Huron St., Suite 406
Pontiac, MI 48341
Euro-Pēds
461 W. Huron St., Suite 406
Pontiac, MI 48341
We hope you will still choose to contribute. On behalf of Isis and my sister, we thank you for your consideration.
May 19, 2010
Grants and Gifts from Over the Years
In addition to the generous donations from Run for Isis donors, we have received funding and gifts from many generous charities, public and non-profit organizations, as well as run-of-the mill folks. Now that I have a soap box, allow me to step up on it to give a Shout-Out to them all.
Ohio Developmental Disabilities Council
I wrote a funded grant for the very first trip we took to Euro-Peds to cover the costs of lodging in and mileage to and from Detroit. If memory serves, the grant was to support my work as a parent, seizing the opportunity to network with professionals as well as other families while my daughter recieved what was, at the time, state of the art treatment. I couched my request in terms that, if funded, I could take what I had learned in and out of the clinic to many families. Hurray, they said yes!
First Hand Foundation
Another funded grant I wrote to cover some of the (cash-pay) costs of a two-week clinic visit to Euro-Peds. They graciously wrote a check to cover one-fifth of the cost. As a first-time grant-writer, I was, at this point 2-0.
Euro-Peds Scholarship
If a family can show financial need, there is a scholarship program at the Euro-Peds clinic. We were the grateful recipients of this program, which deducted one-fifth of the cost- also on our first trip. Can someone say 3-0?
Variety Children's Charity
Variety has a program called "Variety Kids on the Go!" which wants to get kids out and about and moving! They gave my baby her very own first bicycle. Five months after completing paperwork and submitting the application, a brand-new Freedom Concepts adapted tricycle arrived on our doorstep 2 weeks before Christmas (a coincidence, but still...) After wanting a bicycle for years, here was our chance. I vowed then and there to take full advantage of our windfall and told my girl she would be taking daily bike rides from now on. View our journey on Flickr here. 4-0. (Note: funding your dream projects is much easier than you think. Perservere and ye shall prevail.)
Children's Miracle Network
Traveling to and staying in another city while your child receives treatment which is crucial to her physical/cognitive/emotional development is quite expensive. The parent who works loses the pay and gains new expenses not limited to lodging, travel and food while gone. A friend told me about this program which helps defray lodging costs during these necessary visits. Contact the medical social worker at your local children's hospital to receive this essential support. I did and it has saved us thousands of dollars! Don't forget to donate to CMN at any opportunity because the work they do is really incomparable!
The Luke Billings Foundation
This foundation, conceived by local parents, has helped countless children from central Ohio attend Euro-Peds and other therapies that are necessary yet not covered by insurances. They covered one-fifth of the cost of one session for my daughter and I am so grateful for it. Ironically, this was the session where my 6 year-old finally learned how to roll over!
I want to express once more how very much it means to me that I have the opportunity to say a public Thank You to so many generous people and organizations! It takes a village and your help has made it all possible.
Ohio Developmental Disabilities Council
I wrote a funded grant for the very first trip we took to Euro-Peds to cover the costs of lodging in and mileage to and from Detroit. If memory serves, the grant was to support my work as a parent, seizing the opportunity to network with professionals as well as other families while my daughter recieved what was, at the time, state of the art treatment. I couched my request in terms that, if funded, I could take what I had learned in and out of the clinic to many families. Hurray, they said yes!
First Hand Foundation
Another funded grant I wrote to cover some of the (cash-pay) costs of a two-week clinic visit to Euro-Peds. They graciously wrote a check to cover one-fifth of the cost. As a first-time grant-writer, I was, at this point 2-0.
Euro-Peds Scholarship
If a family can show financial need, there is a scholarship program at the Euro-Peds clinic. We were the grateful recipients of this program, which deducted one-fifth of the cost- also on our first trip. Can someone say 3-0?
Variety Children's Charity
Variety has a program called "Variety Kids on the Go!" which wants to get kids out and about and moving! They gave my baby her very own first bicycle. Five months after completing paperwork and submitting the application, a brand-new Freedom Concepts adapted tricycle arrived on our doorstep 2 weeks before Christmas (a coincidence, but still...) After wanting a bicycle for years, here was our chance. I vowed then and there to take full advantage of our windfall and told my girl she would be taking daily bike rides from now on. View our journey on Flickr here. 4-0. (Note: funding your dream projects is much easier than you think. Perservere and ye shall prevail.)
Children's Miracle Network
Traveling to and staying in another city while your child receives treatment which is crucial to her physical/cognitive/emotional development is quite expensive. The parent who works loses the pay and gains new expenses not limited to lodging, travel and food while gone. A friend told me about this program which helps defray lodging costs during these necessary visits. Contact the medical social worker at your local children's hospital to receive this essential support. I did and it has saved us thousands of dollars! Don't forget to donate to CMN at any opportunity because the work they do is really incomparable!
The Luke Billings Foundation
This foundation, conceived by local parents, has helped countless children from central Ohio attend Euro-Peds and other therapies that are necessary yet not covered by insurances. They covered one-fifth of the cost of one session for my daughter and I am so grateful for it. Ironically, this was the session where my 6 year-old finally learned how to roll over!
I want to express once more how very much it means to me that I have the opportunity to say a public Thank You to so many generous people and organizations! It takes a village and your help has made it all possible.
May 18, 2010
Run 4 Isis Rising
In 2002 Isis was born with a severe and irreversible form of cerebral palsy. Never expected to survive her first night, she is now almost eight years old. In 2005, her uncle Alexi had the great idea of running marathons as a way to raise funds for Isis to receive intensive physical therapy at the Euro-Peds clinic in Michigan. Those marathons have so far raised enough money for six life-changing visits, as well as many lessons and pieces of equipment. As Isis ages, the needs change, and the running continues.
We are currently considering the formation of a Run for Isis 501c3 nonprofit organization. This would be a way for donors to contribute to Isis and her future (whether it includes trips to Michigan or not...)
We started this blog as a central site that Run for Isis donors and supporters can visit to:
Learn about recent Run for Isis events
Check out marathon schedules
View photos & videos of Isis's progress
We thank you for your support, and hope you will contribute to the Run for Isis. Please follow this blog and invite your friends to pay us a visit.
We are currently considering the formation of a Run for Isis 501c3 nonprofit organization. This would be a way for donors to contribute to Isis and her future (whether it includes trips to Michigan or not...)
We started this blog as a central site that Run for Isis donors and supporters can visit to:
Learn about recent Run for Isis events
Check out marathon schedules
View photos & videos of Isis's progress
We thank you for your support, and hope you will contribute to the Run for Isis. Please follow this blog and invite your friends to pay us a visit.
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