Hope for Izzy
Meet Izzy
Izzy
Meet Izzy
My name is Sandra Alvarez and my husband is Zef Alvarez. Isabella was our 4th child, born on April 21, 2008 weighing 7lbs 6oz. She was full term, and I didn't have any complications during my pregnancy. When Izzy was born she cried a lot. We didn't know that she had a disability until she was 8 months old. During the first year of her life, the doctors did a lot of tests on her to try to figure out why she cried so much, why she didn't want to eat, why her eyes would flutter, why she couldn't reach out for her toys, why she couldn't hold her head up....... This year was very hard for us and our other three children - they were 2, 10, and 12 years old. After many tests, They gave her many diagnosis:
Brain Malformation
Congenital Diplegia (paralysis on both sides of the body)
Congenital Quadriplegia (all limbs affected)
Infantile Cerebral Palsy
Epilepsy (seizures)
Blepharospasm (eye fluttering)
GERD -Reflux
Severe Developmental Delay
Microcephaly (small head)
Microcytic Anemia
Sleep Apnea
At 5 1/2 years old, all the medicines that Izzy was taking affected her kidneys and liver. Izzy developed
Renal Tubular Acidosis,
Osteomalacia and
Rickets
this means she has soft bones due to a vitamin D deficiency. Her kidneys are not retaining her calcium, vitamins and phosphate. Her femur, tibia, and fibula have already been fractured due to this illness.
All these labels don't make Izzy who she is. They don't define her. She is surrounded by so many people that love her and we know that someday she will overcome all these labels and sicknesses.
We just celebrated Izzy's 6th birthday. There are a lot of things she can't do like kids her age can do, like crawl, sit, walk, skip, talk, hold her toys, eat orally..... We try not to focus on the things she can't do.
Our plan to help Izzy......
In 2013 Zef and I attended a 3-day conference at The Family Hope Center (FHC) in PA - How to Help Your Child With Disabilities. We cried the entire 3 days because for the first time we felt like we were in the driver's seat of Izzy's life. All her life we have always did what the doctors told us to do....medicate her to help her feel comfortable. FHC made us realized that medicating her wasn't making her better, it was making her worse. FHC educated us on "the brain." FHC gave us hope that Izzy's brain can make new connections, but it will take a lot of work by stimulating her senses. We raised more money and went back to The FHC in June 2014, but this time we took Izzy. The team at FHC evaluated Izzy and helped us come up with a comprehensive plan to help Izzy get better. They said Izzy's neurological age is like a 4 month old with a 6.1% degree of function. The daily plan:
Breathing exersize = 40 times a day
Coordination (physical reflex movements) = 6 - 8 times a day
Olfactory (smells) - 9 times a day
Oral stimulation - 9 times a day
Vision stimulation - 6 - 9 times a day
Sensations - 9 times a day
Auditory stimulation - 9 times a day
Hydrotherapy (swimming) - 5 times a week
NUTRITION - whole foods blended diet
Our plan is to go back in 6 more months to re-evaluate the plan. Please help us!