thank you for all the people!

Happy 1st Birthday Shyra

HAPPY BIRTHDAY SHYRA!

The DOCTRON (Electric Accupuncture)

Irrigation

Pix of Shyra at PCMC last October

Shyra Updates

Its been months since I've updated Shyra's Blog I can't seem to find time to think of the right words to type. Last October Shyra was confined at PCMC, because of complications with her vowel movement. This answer the questions why is she having a fever every week. The diagnosis was ecoli virus in her urinary tract and annus which is the cause of high fever and must was treated with co-amoxiclav medecine. This infection is due to her lazy vowel movement. The procedures done during her confinement where fleet enima and irrigation. She was also given Erciflora and lactulus (lila) for easy release of vowel. The doctor suggested that we should irrigate her evryday 2x a day and should take lactulus 2x a day and erciflora 3x a day. Sacrifices must be made for Shyra. After a week another procedure was done UROVIDEO DYNAMICS it is a test to analys how her urinay system works. A doctron was recommended by Dr Dave Bolong and the continue of cathetherization.

How do I irrigate shyra?

It's not easy, the materials that we used are NGT fg# 10, Warm plain NSS, gloves, KY Gelly and syringe.

ANAK Foundation

Check out this Spina Bifida Foundation in the Philippines
www.anakfoundation.org

New pix of shyra

Stem Cells Can help Spina Bifida Patients

While surfing the net I have stumbled upon a website which is all about stem cell treatment. I have click on one patient which is undergoing the treatment and he have Spina bifida on his L1 and his name is Spencer Tomc. He have videos and blogs as testimony while undergoing stem cell treatment that shows good development. Check out his blog at http://stemsellschina.com/blog/SpencerT/ I was getting interested with the procudures and I contacted Spencer's mom and would ask some questios regarding the procedure. If you are interested in seeing the testimonial video just click on this site: http://vimeo.com/5969749

Treatment for Spina Bifida

There is no known treatment for Spina Bifida, all I know is when the damage from the nerves is done it can not be repaired. Most of the progressing damage can be prevented by surgery but after surgery the remaining damaged will be irreversible or maybe will lead to paralysis. But to improve the living of a person with Spina Bifida he or she will undergo various therapy depending on the irreversible damage.


Surgery is the first step on preventing irreversible damages, ideally it should be done within 24 hours from birth of a baby detected with spina bifida. In surgery, the surgeon would open the meningocele, take out any form of mass, if any, release the nerves and close the gap to prevent further infections.

Physical therapy is also done even if the patient undergone surgery. This can help the patient and the patient's parents if there are any needed exercises or massage, if the patient is going to use clutches or orthopedic shoes or even wheelchair if the paralysis is extensive. With therapy there is a chance that the patient can walk.


Bladder Catheterization can be helpful to patients with urinary problems. The patient will undergo Intermittent Catheterization which is putting catheter every 6 hours to the patient to completely empty their bladder. In doing this the materials to be used must be sanitized and clean to prevent further infection. It is advise to keep a record book and measure the amount of urine you get every after catheterization. If the amount you get ranges from 1cc to 5cc this is the time the doctor will advise you that the patient will urinate on her own and will not need to be catheterized.

Shyra's experience.

Shyra a baby detected with Spina Bifida after 3 days from birth undergone Surgery after a month and now undergoing therapy and catheterization. For her therapy within her first 7 months she wore a deinnis-brown splint with orthopedic shoes. We hope that her club foot can be corrected and give her an ability to walk. She also undergo catheterization every 6 hours to prevent further kidney damage.

The materials we used for catheterization are as follows:

• feeding tube # 5
• syringe 10cc
• measuring cup
• sanitized gloves
• alcohol
• k.y. jelly
• betadine
• cotton

How do we do it?

I want to share the things I done during cathetrization but I was thought by the doctor how to do it and constantly training and reminding me. I recommend that before doing it, its best to consult the doctor first.

Step 1. Make sure that all hands are clean, Wash it thoroughly

Step2. make sure all materials are clean and sanitized.

Step3. Wash hands with alcohol for several times.

Step4. Put on your gloves and apply k.y. jelly on the tip of the feeding tube

Step5. The feeding tube is then inserted in the urinary tract were urine is released normally.

Step6. Open the other end of the feeding tube to release the urine and wait until finish.

Step7. Clean the baby thoroughly.

Step8. Measure the Urine and record it.

Step9. Wash the materials used with soap: measuring cup, syringe and feeding tube

Step10. Discharge the syringe and feeding tube after used to prevent contamination and remember to sanitize again the materials used.

Remember that the best cure that a baby can have are prayers and faith.

Complication still continues

After the flew and infection Shyra have a problem moving her vowel. It was soft, watery and yelloew in color and we thought it was diarrhea for 3 days when I was about to bring her to the doctor it become normal again but after 3 days or so she did not move her vowel for 5 days and last night Aug 25 at last her vowel movement was regular again. What really is happening to her? I am troubled.

Complications

I was disturbed by the complications that happened for the past few days. It all started with a fever, Shyra's temperature was soaring at 38.9 degrees Celsius and it is her first time for the past 8 months to get sick with fever. My husband and I were troubled and her specialists are 4 to 5 hours drive away from our home and right now we are having financial crisis. We took Shyra at our family pediatrician, the diagnosis is as what I have suspected, complication, she has (UTI) Urinary Tract Infection, her puss cells are more than the normal limit of an adult which should be 0-2 in number but hers is 18-20. The doctor given her an anti-biotic which is CEFEXIME to be taken 2 times a day and paracetamol to lower her temperature. All the while I thought that we can never face another problem with her, but I realize that anything right now is possible and my husband and I should be on guard for any changes. I am now seeing different causes of this infection, First is her regular cleaning of diaper clothe or disposable diaper, because she moves her vowel for 30 min to an hour therefore resulting in an unchanged diaper or neglect of the nanny (yaya), second, I sometimes neglect the schedule of catheterizing, I have work and sometimes I come home late and nobody else but me would do it, third, the catheter equipments are not fully sanitized. I have nobody to blame but myself and neglect is the best cause I can come up with. Her fever went down after 4 days and she was happy again, but after a day she is now having problems with uncontrolled vowel. We constantly given her banana and water but after 4 days it returned to normal again. I didn't know whats happening but I guess the UTI fever have weaken her resistance and now she have a dry cough which I think she got it from her father. My husband has a cold for the past few weeks and with constant reminder of "do not kiss the baby" he neglects it, anyway who can resist a cute baby?

A Miracle and a Smart Baby

Since the birth of Shyra we are praying for miracles and faith is all that we need at that time, after 6 months from operation, I can testify that miracles are real. But it will never be possible if there are no help financially and spiritually. Today our baby is showing good results and my husband and I are happy about it. I thought I would feel abandoned and depressed but now happiness is all around the corner. Shyra is improving very well, in physical appearance she looks like a healthy baby girl, her motor skills are okay, she is now trying to stand on her own and walk on her own even though she always fell and can not step her foot normally. We encourage her to walk, we even refurnished her sister's walker for her to use. This are very good signs I presume and now I am expecting that she can really walk without clutches and wheelchairs, I want her to be normal. She is a very beautiful and bright girl, as the video evidence and pictures, I am overwhelmed with the things she do now and I can not even explain myself clearly. Hope these miracles continue.
For the parents who have spina bifida, all I want to say is with a little patience, faith, friends and love we can get positive result.

While you were sleeping

A portrait

Shyra Superstar!

Taking a bath with her ate

"Mommy I like this toy"

She is getting cold

Here ate teaches her how to play

Shyra Have Flu

With a soothing cold gel on her forehead to ease the fever

A rising star

Shyra's Check Up

I have realized that going back and forth with Shyra for one day without any companion is very exhausting. These are treasured moments together during our trip. Enjoy!

Our bus ride back at Lucena City

At Dra. Ortiz's Clinic while waiting for her

She fell asleep along San Pablo

The ride to Manila, Shyra enjoyed watching the view outside the window.