February 28, 2011

my recent 'crushes' (as per The Idea Room)...

1. Hello Kitty Make-Up for Sephora


2. Chobani Greek Yogurt

3. Making my own cake/cupcake stands from candlestick holders and plates

4. Hello Kitty Sneakers (I am still searching for these)

5. This DPN Roll....I want to make

6. This book I recently got from KnitPicks


Strawberry Shortcake...

Tonight's dessert:

Bisquick biscuits:

2 1/3 cups Bisquick baking mix
3 Tbsp butter, melted
1/2 cup milk
3 Tbsp sugar

The strawberry shortcake biscuit recipe used to be on the side of the Bisquick box. For some unfathomable reason, the company has started to print the recipe on the inside of the box. Talk about not understanding your customers! If you can't find the recipe, here it is:

Heat oven to 425°F. Stir baking mix, melted butter, milk, and 3 Tbsp of sugar in a mixing bowl until soft dough forms. Drop by 6 spoonfuls on to a greased cookie sheet. Bake 10-12 minutes or until golden brown.
Makes 6 biscuits.

February 27, 2011

bucket gardening...

This year I'm going to try growing my tomatoes in 5 gallon food grade buckets, so I can move them around to get more sunlight. If anyone can score me some free buckets, let me know, k?


February 12, 2011

February 11, 2011

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.


February 7, 2011

my oldest daughter is getting married...

....In May and it's on the beach and reception is in the beach house we'll be renting in Virginia Beach. She lives in RI, so I'm doing most of the wedding prep. I think we're all so excited...the wedding is all we talk about now.

February 5, 2011