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Photo Contest Stories

Andy (Parents - Kristi and Bruce)
Our first child, Andy was born on February 4, 2000. He had a shoulder dystocia and was stuck for 7 minutes. Once he was out, he was without oxygen for 15 minutes. His apgar scores were 0, 0, 0, 4 at 15 minutes. A g-tube was placed at 4 weeks of age and he was able to come home from the hospital at 4 ˝ weeks old. At 11 weeks old, he had a VP Shunt placed because he developed Hydrocephalus due to a Subdural Hemotoma at birth. A few days later, he had to have a revision because it was infected. Once he was finally out of the hospital at 4 months old he started receiving PT once a week. As he got older I started asking for more therapy. While he was in the Infant Program he received PT, OT, Speech, Music, and Water Therapy per week. His g-tube was removed at 16 months of age.  

As of today, Andy is in preschool. He is receiving Speech, OT, PT and OT for Sensory Integration. His diagnosis is Mild-Moderate Mixed Tone CP, possibly Athotoid (depending on who you talk to), Major Sensory Integration issues & Hydrocephalus. He is Non-Verbal. He knows and uses about 50 signs and we are working with a communication device. He is sitting independently, cruising the furniture a bit, walks short distances with a Kaye Walker, loves to climb on things, he has a strong personality that can get him into trouble.

We are very pleased with his progress and hope he will continue to gain strength the older he gets.

Capri (Parents - Tom and Diana)
We have a 6 year old diagnosed with CP, microcephaly and severe MR. Never the less she is the greatest blessing we have ever received. She is non vocal and unable to sit without being propped up.

Garrett (Mother - Brandi)
Hi, my name is Brandi Jarvis and I'm sending you photos of my son Garrett. He is 10 months actual, 6 months corrected and is a soul surviving triplet born at 23 weeks gestation. He was the smallest of the three weighing in at 1 pound, 3 ounces and is now right around 15 pounds! He has a grade 3 IVH on both sides and trudging right along! The panda bear that Garrett is hugging on one of them is a beanie baby!

Joshua (Mother - Wendy)
My name is Wendy Spivey. My husband and I are the proud parents of Joshua, age 14, Jonathan, 14, and Julian, 15.

Joshua was born on January 8, 1989. He was the second twin. It was an awful night. I went into labor at 28 weeks and was fully dilated by the time we reached the hospital. There was no stopping these guys.

Jonathan was born by natural delivery. Unfortunately, I had a placenta abruptio, and the placenta blocked Joshua inside. 25 minutes later, he was born by an emergency c-section.

 

During the C-section, my heart and breathing stopped. I had to be intubated, and didn't wake up until the next day in intensive care. The twins had to be transported to an NICU about 1 and 1/2 hours away. Jonathan was placed in an oxy-hood and Joshua had to be intubated. Jonathan weighed 3 and 1/2 pounds. Joshua weighed 3 pounds.

 

We were later told that the sudden burst of oxygen from the intubation had caused Joshua to have an Interventricular hemmorage (IVH grade 3). CT scans showed Joshua to have less than half of his brain tissue and extremely large ventricles, which created hydrocephalus.

 

At age 4 mos., Joshua had a shunt put in.

At age 18 mos., he had a failure and had it replaced.

At age 3 years, he had another failure and had it replaced again.

(Since that time...his shunt has been fine.)

 

At age 6 months, we had a neurosurgeon tell us we should put him in an institution. We didn't believe a thing the Doctor said and made up our minds to help Joshua be the best he could be. We started a journey forward and have never looked back with any regrets.

 

Joshua has had PT and OT since he was 6 months old. He had the shunts as previously mentioned. He had a Selective Dorsal Rhyzotomy at age 2. He then learned to crawl. Before that he had only pulled himself around in combat fashion.

 

He started to preschool in the Public School system at age 3 in a physically impaired class. By the time he got to Kindergarten, I had him in a full inclusion classroom with a full time personal assistant, getting all his PT and OT at school...Usually twice weekly at 45 minutes each. 

 

Joshua is extremely verbal and it seems as though he always has been. He began talking at an early age. His Cerebral Palsy manifests itself in the form of physical mobility. He has spastic diplegia. His upper body is in pretty good shape. He propels himself independently in his wheelchair. He is very auditory. His visual perception is lacking. He has great difficulty reading. In fact, he’s in 8th grade and reads on a grade equivalent of about 1.5. His listening comprehension and ability to formulate answers is on grade level.

 

I have fought the system many times….Joshua is presently receiving 5 hours per week of PT and 2 hours per week of OT. This is a battle that will continue. The school is presently making us go through re-evaluations, IEP meetings with their lawyer, etc. etc.

 

Joshua has had BOTOX, attended Euromed twice (Now he's learning to walk with crutches), and HBOT, briefly. I would be happy to discuss these ventures with anyone who is interested.

Laurel (Parents - Rochelle and Bob)
My name's Rochelle Garwood, and my husband Bob and I have a little girl named Laurel who was born 11/11/00. Laurel suffered a hypoxic incident around the time of her birth (nobody is exactly sure when) and is categorized as having mild to moderate hypoxic ischemic encephalopathy. Secondary to that, she has spastic quad CP, cortical vision impairment, has had infantile spasms (almost 2 years seizure-free), and is fed by g-tube. Laurel still doesn't quite sit independently, crawl, or talk, but she keeps edging incrementally closer to those things and she seems to understand a great deal. We have done craniosacral therapy, NACD (National Association for Child Development), and Feldenkrais with her as well as the standard PT, OT, and ST and are always interested in learning more about other treatment options.

Raeanne (Mother - Lisa)
Here is a pic for the contest of my daughter. This is shortly after her
near-drowning accident. This is actually the day that we chose to extubate
her. We took pictures because we were told that she would not make it after
she was off of the ventilator. And She is still going strong.

Zachary (Mother - Nikki)
Zachary is almost 7 months old and he is vent dependent 24/7, trach, global brain injury, encephalomalacia, ventriculomegaly, microcephaly and diaphragmatic palsy.  The NG tube is for venting only, he doesn't burp well but he takes all feeds by mouth. All that aside, he is the light of my life. 

 

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