Thursday, January 5, 2012

Filipino Food

Traditional Filipino food recipes that are simple to cook and always a pleasure to serve and eat... dishes that are always welcome on the dining table. Filipino food consist mostly of vegetables, seafood, dairy, meat and rice. Like Philippine fiestas, Filipino recipes are rich in flavor & color.
Filipino culinary arts is greatly influenced by Chinese, European, American, Arab and Asian cuisines. A fusion of various recipes adopted from earlier traders, Asian immigrants and former colonizers.
Before the Spaniards colonized the Philippines, the country's cuisine consisted of root crops, game, vegetables and seafood. Filipino food recipes then was almost always either boiled, roasted or broiled. Foreign trade brought in all kinds of spices and plants to the Philippines. And like the Filipino today, its cuisine is a gastronomic feast from different countries and cultures - from east to west.
Filipinos have embraced as their own cuisines form other countries like the noodles from the Chinese, rice and meat dishes from the Spaniards, fast-food from the Americans and even spaghetti from the Italians. All these now form part of the Philippine cuisine - with the Filipino touch, of course.
There are however many Filipino recipes from each region of the Philippines with each region having its own unique specialty. The Ilocanos from the north are known for their Pakbet - a simple but nutritious vegetable dish. While the Bicolanos are famous for their Bicol Express a hot and spicy dish simmered in coconut milk. Overall, nothing beats the fame of the tasty pork and chicken Adobo, a dish the Philippines is known for throughout the world.

UltraSound January 5th 2012

Alexis had her UltraSound today.  January is a busy month for the Dr. appt.'s. 

She saw Shriner's Children's Hosp. on January 3rd.  They want to send Alexis for some more tests.  

The UltraSound is to test for Wilms Tumor.  Praying, to rule OUT this.  

Another thing that they think Alexis has is called HemiHypertrophy.

Alexis' legs are different lengths.  Also, Alexis was born with birth marks all over her face, head, neck and under her arm.   When she was born, they were a dark purple.  We were told they were called Port Wine Stain.  

So, with the hypertrophy & birth marks, makes them think that there might be other things wrong with Alexis. 

I've posted all the other things related. 

It is scary.  Hard to be a mother, watching your child suffer and going through this stuff.  

I keep wondering why is this happening to Alexis?   I just can't explain what it is like....having to take your kid to the Dr. all the time. 
Having to come up with an explanation to tell your child.  Then being a STRONG parent and not break down and cry.  


It SUX!  It's not fair.  But we try to keep our heads up and our spirits high. 


I usually try to treat Alexis to something fun after an appt.  And even sometime the night before. 

Since last year, we have been getting our pedicures done together as a girls night out before the MRI's that she has. 

The other night, Alexis says,  Boy, I am in need of a pedi!  LOL!

 



 
 Related Disorders


Beckwith-Wiedemann Syndrome
Beckwith-Wiedemann Syndrome (BWS) is a congenital overgrowth syndrome, which can affect all systems of the body. In the great majority of cases it appears to be an isolated event with no known relatives, but there is some evidence that the condition can be inherited.
http://www.bws-support.org.uk/html/what_is_bws.html
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=85369
http://pedbase.org/b/beckwith-wiedemann-syndrome/ 



Wilms' tumor
Wilms' tumor is a rare type of kidney cancer that affects children. It causes a tumor on one or both kidneys. Having certain genetic conditions or birth defects can increase the risk of developing Wilms' tumor. Children who are at risk should be screened for Wilms' tumor every three months until they turn eight.
Possible signs of a kidney tumor include a lump in the abdomen and blood in the urine. The tumor is usually diagnosed and removed in surgery. Other treatments include chemotherapy, radiation, biologic therapy or a combination. Biologic therapy, or immunotherapy, boosts your body's own ability to fight cancer. Most children with Wilms' tumor can be cured.
National Cancer Institute
This is one family's account of having a Wilms Tumor diagnosis. Please click the link for an on page report of their Journey. Some browsers require permission to open active content, you must approve this to see the text.
One Family's Journey With Wilms

Hepatoblastoma
Hepatoblastoma is a rare tumor (an abnormal tissue growth) that originates in cells in the liver. It is the most common cancerous (malignant) liver tumor in early childhood. Most hepatoblastoma tumors begin in the right lobe of the liver. Hepatoblastoma cancer cells also can spread (metastasize) to other areas of the body. The most common site of metastasis is the lungs.
Hepatoblastoma primarily affects children from infancy to about 5 years of age. Most cases appear during the first 18 months of life. Hepatoblastoma affects white children more frequently than black children, and is more common in boys than girls up to about age 5, when the gender difference disappears. Although the exact cause of liver cancer is unknown, there are a number of genetic conditions that are associated with an increased risk for developing hepatoblastoma. They include:
  • Beckwith-Wiedemann syndrome
  • Familial adenomatous polyposis
  • Hemihypertrophy
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=78825
http://www.emedicine.com/ped/topic982.htm
Klippel-Trenaunay Syndrome
The K-T syndrome is a rare congenital malformation that is usually characterized by a triad of symptoms: 1.)Port-wine stain or "birthmark" (cutaneous capillary malformations), 2.)Soft tissue and bony hypertrophy (excessive growth of the soft tissue and /or bones), 3.)Venous malformations & lymphatic abnormalities.
 K-T usually is limited to one limb, but may occur in multiple limbs and/or head or trunk area. Internal organs may also be involved. Each case of K-T is unique and may exhibit the above characteristics to differing degrees.
http://www.k-t.org/
Cutis Marmorata Telangiectatica Congenita (CMTC)
A rare condition that mainly affects the blood vessels of the skin. It is usually seen at birth or soon after. CMTC looks like a purple, marble-like pattern on the surface of the skin. This pattern is similar to the fishnet-like blotches seen in young infants when they are cold. In children with CMTC, the marbling is more severe and always visible. The marble-like skin pattern may be limited to a certain part of the body (localized CMTC) and there may be slight depressions in the skin. CMTC also may be distributed over large areas of the body (generalized CMTC) CMTC can affect the arms, trunk and face, but usually occurs on the legs. The skin pattern may become more visible with vigorous movement, crying, or with exposure to the cold.
Related abnormalities are found in up to 50% of patients with CMTC. These abnormalities include vascular conditions such as port wine stains (red-colored patches that are present at birth) and hemangiomas (non-cancerous, blood-filled growths that appear in the first weeks of life). Other associated conditions include:
  • Overgrowth of extremities
  • Problems with teeth
  • Glaucoma (increased pressure of the fluid within the eye)
  • Delayed psychomotor development
http://www.cmtc.nl/HTML/eng_start.php
 Proteus syndrome
Proteus Syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms.  This condition was first identified by Michael Cohen Jr., DMD, PhD., in 1979.  In 1983 a German Pediatrician, Hans-Rudolf Wiedemann, named it proteus syndrome, for the Greek God Proteus “the polymorphous” presumably because of the variable manifestation in the four unrelated boys first identified with the syndrome.  At this time there are over 120 documented cases worldwide.  However, not all cases of proteus syndrome are documented, therefore it is unknown how many individuals have this syndrome. The syndrome became widely known when it was determined that Joseph Merrick(the patient depicted in the play and movie "The Elephant Man") had severe Proteus syndrome rather than neurofibromatosis as was initially suggested. Other associated conditions include:
  • Overgrowth, asymmetry, and gigantism of the limbs
  • Increased size of an organ, or the body, or bones (hypertrophy)
  • Raised rough Skin (verrucous epidermal naevi)
  • Deep lines and overgrowth of soft tissue on the soles of the feet (cerebriform connective tissue nevus)
  • Patches of overgrown blood or lymphatic vessels (vascular malformations)
  • Local overgrowth of fat (lipomas) or undergrowth of fat
  • Various tumors are more common in patients with Proteus syndrome, but most are benign
  • Deep venous thromboses (blood clots) and the lodging of these blood clots in the lungs (This can be life threatening)
 Macrocephaly-Capillary Malformation
Macrocephaly-capillary malformation (M-CM) is a multiple malformation syndrome causing abnormal body and head overgrowth and cutaneous, vascular, neurologic, and limb abnormalities. The disorder is assumed to have a genetic basis, but the precise genetic cause for M-CM is unknown and diagnosis is currently based on clinical observations. Though not every patient has all features, commonly found signs include macrocephaly, congenital macrosomia, extensive cutaneous capillary malformation (naevus flammeus or port-wine stain type birthmark over much of the body; a capillary malformation of the upper lip or philtrum is seen in many patients with this condition), body asymmetry (also called hemihyperplasia or hemihypertrophy), polydactyly or syndactyly of the hands and feet, lax joints, doughy skin, variable developmental delay and other neurologic problems such as seizures and low muscle tone.

Related Disorders
We have no medical background, just personal experiences that we can share with you
 




Monday, January 2, 2012

A LOOK BACK @ 2011 & HELLO 2012 HAPPY NEW YEARS!

Ahhh, 2011 I'm not a bit sad to see you go.

2011 was definitely a life experience for all of us. Chris & I were married for over a year. In January 2011, our 1st bad experience was devastating. Our family closest to us knows what happened. This happened and 2 weeks later, learned that Alexis had scoliosis. Starting us on our spiral of life long health problems for her. I didn't think things could get worse, & boy was I wrong.

Scoliosis 1st, her brain surgery, traction on her spinal cord, Scarlet fever from May-July, endless hospital visits, 2 MRI's, over 6-7 xrays, 2 cat scans, too many blood draws and IV's.

And thru all this we were dealing with the government/immigration, trying to get his green card.

Sept. 24th 2011 Chris got his green card! YAY! Things are looking up, right?!?!?!

October 8th, Alexis celebrated her 9th birthday. And we had so much to be thankful for. Things were looking better.

And that night, was the night, Chris dropped the bomb shell that he was afraid of this mass growing bigger and bigger, he had waited a whole year, watching this mass grow. Hoping that it would go away. Until it was too big to ignore.

Finding out that Chris has cancer. All this happened so quick.

Chris had ultra sound, Cat scan and Xrays, blood work and IV's. Then Surgery.

After recovering from that, then on to Chemotherapy.

Ahhh, I was thinking is this really happening??? Why us??? Why now?

Cancer sux, and Chemo is terrible. God Bless anyone going through this!!!!!!! It is terrible, that's all I can say.
My heart breaks for anyone suffering from this.

My prayers are with anyone who has gone thru this or is going through this.

So what good has happened with us???? Hhmm, let me think....

Well, our hearts have gotten bigger and stronger. Our family has gotten stronger.

We have been through a lot, but obviously God thinks that we are strong and can make it through this. Wait, we have made it through this.

I think the biggest most exciting thing was Chris and I got to have our honeymoon that we never had.

We went to the Philippines to see his family and me to meet them. I have a SON! I'm so honored to be a mom to his son.

Ken is wonderful and a delight. All of us cannot wait for his arrival. So, you see, things are slowly falling into place.
He has a heart of gold, wants to play Pro Basketball one day to help his country. Ahh, so sweet. Such a young age and already big wonderful dreams that will come true.

Alexis hasn't let her health problems get in the way at all of her art.
I seriously need to get a gallery for all of her art work.
I brought some over to share with the family on XMAS and everyone was amazed of her work.
I said, half of this is pre-brain surgery...and the rest is post, Not a bit of brain loss there! :)