2. Like this simple way for the food to be served....we'll do this.
3. Really like this idea of everyone writing messages to Lauren & Nick on stones....hmmm.
May 5, 2011
May 1, 2011
Changes...
This coming Wednesday Porter is getting his GTube replaced into a Button (aka: a Mic-Key) and....
After 4 years and 2 months, Porter is officially off of his TPN!!!! Yes, I said he is OFF his TPN!
Now we are monitoring him for a couple of weeks and if his levels stay good off the TPN his central line will get replaced with a Port (so funny to think of Porter getting a Port, eh?)...woohoo!
Oh and this is something cute Porter did tonight as James tucked him into bed after hooking up his GTube/Elecare. Porter has been so used to having his TPN backpack every night that he said to James;"Backpack missing?" James told him he didn't need it now, but he asked about his backpack again.
So many new changes and still Porter smiles daily and keeps us giggling and feeling blessed. He teaches us daily and we are so proud to be his family.
After 4 years and 2 months, Porter is officially off of his TPN!!!! Yes, I said he is OFF his TPN!
Now we are monitoring him for a couple of weeks and if his levels stay good off the TPN his central line will get replaced with a Port (so funny to think of Porter getting a Port, eh?)...woohoo!
Oh and this is something cute Porter did tonight as James tucked him into bed after hooking up his GTube/Elecare. Porter has been so used to having his TPN backpack every night that he said to James;"Backpack missing?" James told him he didn't need it now, but he asked about his backpack again.
So many new changes and still Porter smiles daily and keeps us giggling and feeling blessed. He teaches us daily and we are so proud to be his family.
April 25, 2011
Monday's Blog Spotlight
~ alittlelovliness ~
I love this gal's blog! Here's just a glimpse of...
Her photographs of flowers...
Things she sews, like these Sweet PillowCase Rompers for her girls....
and her amazing Party Themes.....
Check out her blog.
I'm sure it'll take some time to surf through all her 'little loveliness', because I'm still going through it all and I am 'wowed'.
April 18, 2011
Celebrating Earth Week....
Genesis Today doesn’t just use ANY fruits, they are SUPERFRUITS! They’re packed with nutrients, including vitamins, minerals, essential fats, protein, and especially antioxidants.
They also practice Sustainability: There’s a reason it rhymes with responsibility. Sustainability is one of their most cherished guiding principles. From their successful recycling program at their own office (nearly 53 tons in 2009!), to their choice of PETE recycled bottles for their juices, and of course their fruit farming practices, they’re making sustainability a priority, one day at a time.
About Genesis Today Acai Berry Juice: They don’t call it the “beauty berry” for nothing. Acai berries are packed with antioxidants that support healthy skin, hair and nails. They’ve also been known to provide natural energy support — how delicious is that? Find it in the refrigerated section of Walmart and other fine retailers, next to the orange juice.
Follow: Celebrate Earth Day 2011 , Coupon Katarina
and Genesis Today on FaceBook and enter to win!!!
and Genesis Today on FaceBook and enter to win!!!
April 1, 2011
March 28, 2011
pretty chandelier...
I'm going to do this to the brass chandelier I have. Some white spray paint, clear beads, clear candle cups and silk roses...viola!
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March 27, 2011
rainy day....
Another cold and rainy one here! James & I have to grocery shop. Looks like it's going to be a homemade soup and muffins kind of day, eh?
March 14, 2011
today...
Outside my window...it’s sunny, but chilly and thins are starting to bloom
I am thinking...about all the plans for Lauren and Nick's Wedding
I am thankful for...my sweet family
From the kitchen...chocolate chip cookies are baking.
I am wearing...navy pants, pink top, bare feet
I am creating...pug coffee cozies
I am going...to rest for today
I am reading...blogs on knitting
I am hoping...I can find an outfit for the wedding
I am hearing...Porter giggling
Around the house...laundry has to get folded
One of my favorite things...these Pug Posters!!!!
I am thinking...about all the plans for Lauren and Nick's Wedding
I am thankful for...my sweet family
From the kitchen...chocolate chip cookies are baking.
I am wearing...navy pants, pink top, bare feet
I am creating...pug coffee cozies
I am going...to rest for today
I am reading...blogs on knitting
I am hoping...I can find an outfit for the wedding
I am hearing...Porter giggling
Around the house...laundry has to get folded
One of my favorite things...these Pug Posters!!!!
March 10, 2011
Happy Birthday 'Honey-Bunny'...
My Husband, James is 39 today. I'm taking him out for breakfast, buying him a Star Wars book (not coming out until the 22nd though), making subs for supper and buying him an ice cream cake. That's all he wanted.
Love you 'Honey-Bunny'!
Love you 'Honey-Bunny'!
March 9, 2011
Wedding colors....
Talked to Lauren and she added tangerine to her wedding colors, so it's AQUA, TANGERINE and WHITE....FABULOUS Wedding Colors!
She also agreed that a small cake and cupcakes would be her choice....so, look what I found from
Bratty Cakes (in CA): These are perfect!!!!!!!!!! I think I'm going to have to order the cupcakes from a local cupcakery....wonder who can replicate these???
She also agreed that a small cake and cupcakes would be her choice....so, look what I found from
Bratty Cakes (in CA): These are perfect!!!!!!!!!! I think I'm going to have to order the cupcakes from a local cupcakery....wonder who can replicate these???
cake pops...
making these for the wedding...probably in an aqua blue and a white. making the cupcake stands to display them also.
Also, going to make chocolate covered strawberries, so the plethora of cake plates I'm making will be quite handy, eh?
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.
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?
links:
February 24, 2011
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
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