September 8th...

Went out in the pouring rain to let the chickens out into their run. Thankful that we covered the run w/ corrugated roofing. They are dry, have food and water, and can stretch their legs.

James and I still have to train them how to get in and out of their coop.
They are unsure of everything still.

======================================

Brig teaches PMan how to bake cupcakes. 
PMan read all the ingredients and directions too.

Yoda hates the Rain!!!!

Made ears for 1st Bear Cowl, and 1/3 done on 2nd cowl. 

Got another order for 2 Cream Color Bear Cowls as well...

will be working on 6 cowls thus far. 

Selling at $40 each in time for Christmas.

=============================================

Went to put the chickens in the coop for the night and 

Ouiser was already in at the top where they roost. 

Had to get the other 2 in there. 

Hoping she can coax them to climb up the ladder as well.

Porter's Progress...

For those keeping up with Porter's Progess:

 

Porter's appetite has increased greatly!

We are all so very excited, because this is what his Doctor

and our family have been working on since he was a baby!

He's almost 10 years old now and finally LOVES to eat!

Yea!!!

And now that we have only healthy food

in our house it's a win-win situation!

 

— feeling excited.

April is National Autism Awareness Month...

 

Porter sings Fireflies by OwlCity

All About Porter...

Several People have asked me to explain the issues that Porter (my youngest son) has.



Porter Has:

Hemophagocytic Lymphohistiocytosis  -A rare, cancer-like disorder in which both histiocytes and lymphocytes start to proliferate and attack body tissues or organs. Treatment is by chemotherapy, and in some (Porter’s) cases bone-marrow transplantation.

Bone marrow necrosis (BMN)-Bone marrow is dyeing...will need a bone marrow transplant soon.

Pernicious Anemia- Pernicious anemia is due to an inability to absorb vitamin B-12 (also known as cobalamin or Cbl) from the gastrointestinal tract.

B-cell Dysfunction (compromised immune system…it’s broken). Gets very, very sick easily and has to be hospitalized and given IV’s/Meds.

Hypohidrotic Ectodermal Dysplasia - Most people with hypohidrotic ectodermal dysplasia have a reduced ability to sweat (hypohidrosis) because they have fewer sweat glands than normal or their sweat glands do not function properly. Sweating is a major way that the body controls its temperature; as sweat evaporates from the skin, it cools the body. An inability to sweat can lead to a dangerously high body temperature (hyperthermia), particularly in hot weather. In some (Porter’s) cases, hyperthermia can cause life-threatening medical problems. Porter dehydrates quickly.

Autism-Autism is a devastating neurological and biological disorder that typically affects children between the ages in 18 months to five years of age. Autism currently affects 1 in every 91 children today. It is estimated there are over 1 million people in the United States alone with autism. Autism affects each individual differently and at different levels of severity. Some people with autism are severely affected, cannot speak, require constant one-on-one care, and are never able to live independently. While others who have less severe symptoms, can communicate, and eventually acquire the necessary skills to live on their own.

Chronic Diarrhea -for over 5 years now.


His Treatments:

Intravenous immunoglobulin (IVIG)- is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 3–4 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases.

Central line (4 years now)- is a catheter placed into a large vein in the neck (internal jugular vein or external jugular vein), chest (subclavian vein) or groin (femoral vein). It is used to administer medication or fluids, obtain blood tests (specifically the "mixed venous oxygen saturation"), and directly obtain cardiovascular measurements such as the central venous pressure.

TPN- for 12 hour nightly feeds via two pumps/central line. See link: http://www.merckmanuals.com/professional/sec01/ch003/ch003c.html

Drinks EleCare – 24-28 oz. daily for nutrition. EleCare is an amino-acid-based, hypoallergenic formula that is specifically designed for infants and children with special feeding issues.

Meds-Takes a plethora

Attends Blood Cancer Clinic- for blood draws to check platelet count, liver, pancreas, bone marrow, etc…etc…

BMT- Eventually, Porter will need a Bone Marrow Transplant to survive.

Has had several surgeries: NG tube, colonoscopy, endoscopy, enteroscopy, central line (2 x’s), will need a G tube and a Port placement soon to access blood.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

TACA 2009 'Real Help Now' Campaign...

I belong to TACA-Talk About Curing Autism (Virginia Chapter).

My son, Porter has Autism. We have seen Porter grow and start to heal through the GFCF diet, biomeds, supplements, probiotics and much more. We want to continue to see him grow and develop and need your support.

I am raising money for our group to help families, like ours, dealing with Autism, talking about Autism, and helping eachother on our 'Autism Journey' together.

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts. All donations go directly to TACA.org for our Chapter.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

Hugs-Peg Graham (aka: 'Porter's Mom')


About my nonprofit:
Talk About Curing Autism

Talk About Curing Autism (TACA) is a national organization dedicated to providing information, resources, and support to families affected by autism. For families who have just received the autism diagnosis,...

Talk About Curing Autism (TACA) is a national organization dedicated to providing information, resources, and support to families affected by autism. For families who have just received the autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments. TACA helps to strengthen the autism community by connecting families and the professionals who can help them, allowing them to share stories and information to help people with autism be the best they can be.


Fundraising target: $1,000
Total raised so far: $0.00

*please donate anything you can...see First Giving Widget to right of my blog, under Porter's photo.

btw...Porter's 5th birthday is tomorrow, June 4th...he'll be '5'.

gain more awareness...

To view in larger print, please visit:
Green Our Vaccines

it's a major award....

I actually won something! I entered a contest at Delicious Baby and won a clek olli Booster Seat (Paul Frank Monkey) for Porter!!!!

see the news here: Delicious Baby clek olli Booster Seat WINNERS

"FRA-GEE-LEY!"

REAL HELP NOW...

April is Autism Awareness Month!

Children with Autism Need Help. TACA is Real Help Now.



Support TACA through the Real Help Now Family & Friends Fundraising Campaign
› Find Out How to Help! and/or donate to this site: FirstGiving

Porter thanks you!

Augmentative Communication...

Porter went to CHKD for his eval for Aug. Communication yesterday. They were soooooo impressed at how far his language has developed and that he can write, use the computer, talk in sentences, ask questions....they said he won't be needing their services afterall. However, they went ahead and ordered a plethora of CD's for the computer for Porter to work on verbal skills and such....we'll get those free from the EDCD Waiver. Wahoo!

I am so tickled pink at P-Man's progress. (Now, if we can only get him to stop wiping his nose on everybody's clothes!!! ewwwww!!!!)

a walk on water...

taken from: A Walk on Water


Each year, autism affects one out of 150 infants born in the United States, with alarming evidence that the disorder is on the rise with each passing generation.

A Walk On Water is a film that follows one family from the moment they first find out their child has autism to their discovery how other families have chosen to fight back rather than accepting the status quo of perplexed scientists and the failure at the highest levels of government.

The movie examines how parents with autistic kids respond to a disorder that has robbed their children of their senses. These parents fall into two types being those who are unaware of potential causes, cures, and politics surrounding the subject and those who are swept up in the controversy and search for truth finding alternate lifestyles and medical solutions. Among scientists there is concern that mankind is playing Russian roulette with living systems and, ultimately, our own health through continued low-dose exposure to industrial chemicals and unsafe vaccines. No one can definitively state what accounts for this modern day phenomena; however, there is a growing body of evidence that genetics is the loaded gun and the environment is the trigger.

In the absence of absolute answers to autism and other disorders, we ask the question of what can be done to ensure not only our own health, but the health of the planet as well. A Walk on Water investigates these thought-provoking issues on a grass-roots level, and seeks to provide answers, in a manner that stimulates a debate at all levels of society, from government policies to concerned parents.

watch the trailer (give it time to buffer first):a walk on water- trailer

Looking for an Attendant for Porter...

Home Attendant (for Autistic Child) (Chesapeake, VA)

--------------------------------------------------------------------------------
Reply to: pegstamps@gmail.com [?]
Date: 2009-02-11, 12:40PM EST



I'm looking For a 'Home Attentant' for my 4 ½ yr old little boy, who has Autism.
He is active, but happy and needs someone to do one-on-one care and therapy skills during the morning and afternoon hours during the week.

Attentant must me trustworthy and able to follow intructions as given.
Need someone to perform the duties whether I'm present or not and who can relate well with children with special needs.

Some ABA experience is preferred, but not necessary to help teach social, language, cognitive and self-care skills.
Special Needs (ie: Autism) experience a must though.

Own vehicle to transport to and from therapy 2 times per week. (Mon and Fri)

Hours TBD. Up to 35 hours per week
Background check will be given.

Autism: New GFCFSF foods...

So Delicious Coconut Milk Yogurt

NEW! The world's first (that we know of) coconut milk yogurt is now So Delicious! You'll be amazed from the very first spoonful at this amazingly creamy yogurt experience without the dairy or soy!

Dairy Free / Lactose Free
Soy Free
Gluten Free
Rich in Medium Chain Fatty Acids
Excellent Source of Vitamin B12 (vegetarian friendly)
Formulated for Maximum Calcium Absorption
Contains Pre- and Probiotics for Enhanced Intestinal Health
Cholesterol Free
No Trans Fats
Certified Vegan

****make sure you're getting the one that says "cultured coconut milk."
-----------------------------




RICE VEGAN® - Soy Free & Casein Free

New Rice Vegan slices are redefining non-dairy with great taste and melt. These casein and soy free products are a delicious addition to your favorite vegan sandwiches, salads and meals! The tastiest vegan in the Galaxy is found in the cheese alternative section of natural foods stores.

AND....Jennifer Elizondo from NAVAN Foods sent me this link for a $1 off coupon too:
Galaxy Food $1 off coupon
...go get one and visit her store: Navan Foods

Autism Update...

I went to Sports Med today and bought more supplements, biomeds, and pro biotics for P-Man today...here's the list of what Porter is now on and will be on soon:

•MEDICATIONS/BIOMEDS/PRO BIOTICS/SUPPLEMENTS:

Zinc Sulfate
Ferrus Sulfate (Iron)
Zyrtec
Prilosec
L-Carnitine
Biotin
Polyvisol
Diflucan
Kid’s Brite (Omega 3)
Calcium Citrate
Vit C
Pea Protein (w/ vit D)- (to replace milk protein)

Just got today:
Kid’s Brite (Omega 3)-re-order
Colostrum
Cod Liver Oil Liquid
ProBio Defense
Activated Charcoal- (for yeast die off)
Milk Thistle
Super Nu Thera w/out vit. A&D
Glutathione (cream)
GABA
Selenium
COQ10-(on order)


Will be on once Dr. Madren writes a script for them:
Cholestorol
Arginine
Chondroitin Sulfate
Alpha-ketoglutaric acid
Taurine
N-acetyl glucosamine

These are all items Porter needs. After doing the tests and seeing what is low or high in his body, these will help his little body heal and feel better.

We are also weaning him slowly off Gluten. Caesein and Soy have been eliminated from his diet now. He is still on TPN nioghtly feeds, but needs to eat more by mouth, so he can eventually come off TPN. The IVIg therapy will continue for his entire life to keep him alive though.

He has an Augmentative Communication screening towards the end of this month and continues with Speech and OT and Pre K.

He will be getting an Attendant next week and will work on some ABA therapy.

Come summer...Hyperbarics!

Whew!!!

busy, busy, busy...

it seems my life has been a tad bit busy these days. meetings, appointments, errands, cleaning, organizing paperwork, organizing rooms, phone calls, more appointments, more meetings, more errands...all for porter and autism.

autism takes a front seat. porter's health and happiness. learning more each day.

right now, we need house bill 1588 passed. we need government to hear our voices.

right now, we need to order a plethora of biomeds, probiotics and supplements for my little guy, porter... to heal his gut and promote good health. and it's all out of our pockets...unless the hb 1588 gets passed.

and so....

right now, i am getting back to balance in life. eating more raw foods, walking, breathing deeper, reading, relaxing techniques...balance. so, i may say 'no' to a few things in my life i would normally say 'yes' to. i do this for me. i do this for my family. i do this to create the balance needed so i can concentrate on the 'need tos' right now. and porter is a 'need to'.

and this is the 'season' in my life right now. i welcome it with an open heart...because HE is worth it and so much more!

Autism Rally in Richmond...

Help us out...

REMINDER!! Tomorrow, November 19, 2008 at 1pm, the Virginia Mandated Benefits Commission (MBC) will announce its recommendation regarding House Bill 1588. This is a crucial time for families in Virginia that are dealing with the realities of autism.

HB 1588 will provides up to $36,000 a year in coverage for life-changing treatments, including applied behavior analysis, for children with autism. But first, the bill must receive a favorable recommendation from the MBC.

Virginians have responded to the call for action, and have inundated the members of the MBC with phone calls and e-mails. You've told them your stories. You have educated them politely and persistently, repeating the following message:
Autism is treatable. Insurance should cover treatment. Virginia families need help now!

It's time to remind the members of the MBC one last time.

HOW CAN YOU HELP?

1. CONTACT THE MBC MEMBERS ONE MORE TIME! Today and tomorrow before the MBC meeting it is crucial that every legislator who sits on the MBC hear this clear message over and over: Autism is treatable. Insurance should cover treatment. Be polite and persistent. Ask them to say "yes" to our children (who so often hear the word "no") and to HB 1588.

The Commission Members are:
Delegate Clay Athey - (540) 635-2123
Delegate Tim Hugo - (703) 968-4101
Delegate Terry Kilgore - (276) 386-7011
Delegate Donald Merricks - (434) 836-3370
Senator George Barker - (703) 303-1426
Senator A. Donald McEachin - (804) 226-4111

No matter what district you live in, please contact all of these legislators.

2. SEND AN EMAIL to the legislators on the Commission! It's very simple. You don't even need to know their email address! Just click and send!

3. ATTEND THE MBC MEETING ON WEDNESDAY. The MBC was completely surprised by the large show of support at the hearing in September. Let's show them again that autism is something that affects countless families across the Commonwealth. Meet by the clock just outside the General Assembly Building in Richmond at 12:30 pm. (For information about parking, please click here.) Please wear red and come to stand united as MBC votes on the future of our children.

4. FORWARD THIS ACTION ALERT to everyone you know! For those who are constantly looking for ways to provide support to families struggling with the challenges of autism, this is a fantastic, easy way to step up. Ask them to contact each of these legislators in support of HB 1588. Ask them to ask everyone they know to do they same. We need to flood their phone lines, fax lines and e-mail inboxes.

5. REGISTER AT AUTISM VOTES! It’s quick and easy. You will then receive e-mail alerts any time action needs to be taken in the Commonwealth. Ask your friends, neighbors and family to register at Autism Votes as well. We need thousands of voices if we plan to succeed in our effort to end discrimination against our loved ones with autism.

The clock is ticking and it is crucial that we speak for our children NOW. Thank you for your commitment to making insurance coverage for autism a reality in Virginia.

For more information on the Virginia autism insurance initiative, go to www.autismvotes.org/virginia.

Warm regards,
Judith Ursitti
Regional Director State Advocacy Relations
Autism Speaks

House Bill 1588...

(letter I sent to Randy Forbes- Chesapeake, VA Congressman: via Nicole Aponte)

(PLEASE take the time to help us parents who have children w/ Autism and forward this letter with your own adjustments to your local Congressman, Thanks!)

At the upcoming meeting on November 19, the Virginia Mandated Benefits Commission will announce its recommendation regarding House Bill 1588, the autism insurance reform bill. I am writing to ask that you support this bill as a member of the Commission and that you add your voice to a recommendation that the Virginia legislature move towards passage of this bill as well.
HB 1588 will require private insurance companies to provide coverage of medically necessary, evidence-based autism treatments and therapies, such as Applied Behavior Analysis (ABA) therapy.
Right now, 1 in 150 children is diagnosed with autism according to the CDC. This is a staggering number. This means that thousands of families in Virginia are affected and that thousands of families are paying out-of-pocket for the treatments that their child needs, even though they have private health insurance.
I am asking that you help stop insurance companies from blatantly discriminating against children with an autism diagnosis by supporting HB 1588 on November 19. Autism is treatable. Insurance should cover treatment. Virginia families need help now!

I am the mother of a son with Autism. The majority of the therapies & treatments that are currently assisting these children to obtain a better quality of life are not affordable for American families. Even families with health insurance are often left in the dark and with few options because the insurances refuse to pay for the therapies claiming they are only experimental or useful for some and not all. This could be said of many things-including psychology and modern medicine. But, parents need options. When 1 in every 150 children in our present time is diagnosed with Autism, we need a myriad of strategies available to us to find the one that best suits our children that are covered by the health insurance. We could have have a nation in the future generation of adults with autism...unable to live independently and fulfill their God given right to success and pursuit of happiness. Please support this bill and other bills to provide health insurance
coverage for Autism therapies like ABA-Applied Behavioral Analysis, RDI-Relationship Development Intervention, Speech & Occupational Therapy, Listening Therapy & Auditory Integration Therapy and Biomedical Treatment- Chelation therapy, Antioxidant therapy, etc.

Thank You for your time,
Margaret A. Graham