JAELA’s Story

Site created on July 30, 2009

DEAR FAMILY AND FRIENDS,

THANK YOU ALL FOR YOUR LOVE, SUPPORT, PRAYERS AND CONCERN FOR OUR BABY JAELA. JAELA IS DIAGNOSED WITH HURLER'S SYNDROME MPS 1 AND WAS AT CHILDREN'S HOSPITAL IN LA FOR HER BONE MARROW TRANSPLANT IN 2008. PLEASE FEEL FREE TO SIGN MY GUESTBOOK.. THANK YOU ALL AND GOD BLESS YOU ALL..


Mucopolysaccharidosis type I (MPS I) is a rare disease in which the body is missing or does not have enough of an enzyme needed to break down long chains of sugar molecules. These chains of molecules are called glycosaminoglycans use to be called mucopolysaccharides. As a result, the molecules build up in different parts of the body and cause various health problems.


LOVE,
ANJELA

Newest Update

Journal entry by Jaela Hernandez

Dear friends and family,
Jaela had an Osteotomy on her right ankle that was performed on 2/15/22. It was another heartbreaking moment to see her go through another surgery. But with God’s help, we are blessed that the surgery went well! She is now recovering which will take 6-9 weeks. The doctor was able to put on a cast. 

The first night post op, she was able to stay in the hospital for a few hours to monitor the pain block that she received. After a few hours, she was able to get discharged with her dad Chris.

I was able to take her home the 2nd night. She was exhausted from the excruciating pain all night since the pain block was wearing off. She’s prescribed with Norco PRN. After giving her pain medicine Around 6pm, the medicine started to kick in so I took advantage of washing her hair on the sink and gave her a sponge bath to feel good, brushed her teeth to continue to have good hygiene. Of course she’s on her menstrual cycle that doesn’t help her bloatness. We had to give her Norco every 4 hours as Doctor orders. We also had to give her ibuprofen in between to manage pain. She did not do so well the 2nd night as we hardly got some sleep. 


3rd night post op. Update:
 Jaela continues to have pain and mostly at night. She is on a round a clock pain medicine at this time as she struggles mostly at night. We are continuing to  put her leg up above the heart, ambulate and wiggle her toes exercise throughout the day to keep the circulation going . 
Jaela’s right foot is currently swollen but still have pink and warm around. I will continue to monitor her foot. Tonight was also rough for us, it seems she cannot tolerate the pain mostly at night so what I do is have her get up and walk around with her knee scooter to ease the pain and circulate her legs. Now she’s finally asleep. And let’s see how she’s does through the night. Praying for her continues strength and fast healing journey. 


Anjela Yumul 
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