Joshua Harris
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Meet Joshua Harris. Joshua is seven years old and will begin second grade this fall. We try to have Josh as fully included as possible in school, having him removed from his peers only for therapies and other special services. Josh loves being around other kids, especially his two brothers. Josh has excellent receptive language skills and signs yes, no, or 'uh-uh' appropriately for whatever he's asked. He loves to watch children's movies, especially ones that have lots of little kids, characters with silly voices, music and lots of color.
Joshua was born prematurely, at 32 weeks gestation. He had a Grade IV intraventricular and subdural brain hemorrhage. No one has determined why. Secondary to that event, Josh was diagnosed with hydrocephalus (he has a ventriculoperitoneal shunt), cerebral palsy (spastic quadraparesis), liver failure (which has resolved), laryngeal malacia (the reason for Josh's trach), ocular motor apraxia, speech apraxia, and global developmental delay. Though Josh can eat soft and pureed foods, he has a feeding tube for fluids and to get some of his calories.
Josh had 10 surgeries during his first year of life. We were all on a veritable roller coaster ride. Just before Josh was two, one of his home care nurses gave him way too much formula in his feeding tube, much too quickly. He aspirated it all into his lungs. He had to be on a special oscillating ventilator for a long time in the PICU. Again, it was touch and go. With lots of prayers and Josh's dynamic spirit, he prevailed. He's only had a couple of surgeries after that, including eye surgery and surgery to replace his trach (he had it out for about three months). Now, at age seven, he's facing a very difficult spine fusion surgery to resolve his neuromuscular scoliosis. It might be up to 10 hours long. We are certain that Josh will be much more comfortable after the surgery, though, so we have faith that it's worth the initial discomfort.
Josh is a very feisty young man. Though he is nonambulatory and nonverbal (it's hard for us to say this, because Josh verbalizes so much in his own way), he has a dynamic personality and attracts many people. Josh was one of the first children at our local children's hospital to use the Passy-Muir valve. He was comfortable with it immediately and has been enjoying vocalizing and blowing "raspberries" ever since. Josh first got the valve when he was a little over a year old. Now, Josh uses the low profile valve - the purple one. Josh's wheelchair is a custom purple, his new glasses are purple, his hand splints are purple, and now his speaking valve is purple!
While Josh tolerates the speaking valve very well, for some reason he does not tolerate capping his trach, so decannulation has been put off for awhile. Nevertheless, Josh continues to thrive and make his voice heard, and for that we count our blessings everyday!
Josh has nursing care, mostly at night, as his needs can sometimes be quite complex. Josh's favorite nurse is Nurse Shirley, who has taken care of him since he first came home from the NICU. Life can be taxing for this little fellow (who gets a big smile on his face when we fuss over what a big boy he is), but he maintains a zest for life and has more determination than one could imagine.
Josh has already been on several vacations around the country with the family and has consistently lived up to his reputation of being a real trooper! We look forward to even more adventures with the three thriving Harris boys!
Debbi and Victor Harris
Joshua's Parents
