Wednesday, April 25, 2007

Tyler's journey....part 1

We started this blog to record Tyler's experience as a desmoid tumor patient. But, his journey started long before his diagnosis of Desmoid tumor in October 2006.

He was born healthy, but suffered reactions to his two and four month DTP immunizations. We couldn't believe it until he had the same reaction twice. We were told the odds and felt they were in our favor. Now we know, we should've had Tyler buying Lotto tickets. He is that 1 in 300,000 guy they tell you about. He was diagnosed as microcephalic, developmentally delayed, has fluctuating tone (CP), cortical visual impairment, and hearing loss that ranges from mild to moderate.

It has been an interesting life with him. He has always been a pleasant, happy person. In fact, if he cries - it results in an ER visit about 70% of the time. Thankfully, those times have been few. Although he has had several surgeries, he has been the healthiest of our children. He has had one ear infection in his life and that was from swimmer's ear just last summer. He gets bronchiolitis once a year and that's about it.

Our state has a Communication Intervener program for children who are considered to be "deafblind." Tyler's vision and hearing impairments impact his ability to communicate and to learn. The Intervener helps Tyler to understand what is going on around him and facilitates communication with other students and adults in his life at school. She does this through the use of object cues and what we call co-signing (she signs into his hands and helps him to form the signs). He has modified several signs and has had to be patient while we play detective and try to figure out what he's trying to tell us.

We try to always talk to him about anything he is going through, even though we are not sure how much he understands of what we say. Right know, it seems as though he pays much more attention to me when I'm speaking now that he is so sick. My theory is that his senses are much more heightened or that he is much more on the defensive because of all the trauma and discomfort.

This particular part of his story actually started in January of 2005 when he received a baclofen pump implant in his abdomen to help alleviate the spasticity in his hips. It was a resounding success. He then had his left hip repaired in May of 2005. His tone was manageable, but Ty hit puberty and grew 10 inches in 8 months. The result was a very quick increase in his scoliosis angle. He went from 32 degrees to 98 degrees in just over a year. We made arrangements for him to have spinal fusion surgery in December 2006.

Back up a couple months. In June 2006, we took him in for a regularly scheduled pump refill. I mentioned to the doctor that his pump was sitting at a funny angle - it was no longer flat on his stomach. She told us that baclofen pumps sometimes shift - they are inserted into a pocket of the muscle fascia and can tend to move a bit. He was having problems voiding urine, so we took him to an appointment with a urologist. She could find nothing wrong, and said it was just a part of him getting older.

4 comments:

Adria said...

I'm looking forward to the rest of the story. I love the title of your blog.

Sniktaw 7 said...

Thank you, he is going to overcome this, no matter how it turns out.

sippinghotchocolate said...

i think i'm going to cry.

summershine said...

Raising Tyler must be a very difficult job, but you sound like an optimistic and resilient person.
We just got our 2 month old daughter vaccinated.
That concern over a reaction is always there, and I'm so sorry it actually happened to Tyler.
He is so blessed to have such a loving family to help him out.