Tag Archives: hospital

ER Tour

Riley’s school reading across my phone during the school day would normally put me on guard immediately. However, Riley’s bus could not even have reached the school yet.

“Hello, I am the Vice Principal of Riley’s School….”she started. “We have been trying to reach you.” You have?

Surgery Discharge

Surgery could have been yesterday in my mind. Let me see, it was back on August 25th and I am ready to recount arriving in the recovery room.

Riley made it through the surgery without complications.

Riley, however, disagreed with the complication free assessment.

Ultimate Decision

Some years ago Riley had a medical procedure done that I found barbaric. Basically it has something to do with his shunt… I called it the lightening rod procedure. Put a metal monitor (bolt) in his skull/brain (exposed) and hold him still for 48 hours, intended to be 24, so they can read what is going on. Given Riley’s expressive nature. Holding still was a task. But I did it (actually he did it… I was just along for the ride) and I never imagined anything worse…. Until recently…

Hip Subluxation

The decision has been made.

Raising a special needs child

This essay is in response to a request by CNNiReport about what it’s like to raise children with special needs:

We were going to be parents! In 2002, my amazing husband, John, and I were expecting a baby boy.

Reflections on Life’s Challenges – Kaet’s year in review

Our children go through this life facing things we would never have been able to imagine, yet they continue to grow and thrive defeating all odds. The longer they stay with us the more they teach us and allow us to grow with them. They are an inspiration even to the professionals that treat them.

As this year comes to a close I take this this moment to reflect on our experiences; some good, some bad; nonetheless all lessons in life.

Little battles

Riley and Ronan are seen here hanging out with Miss Southwest Florida 2012, Miss Caroline Kay Dixon, at Freedom Waters Foundation’sHeels & Reels last month.  Miss Dixon was very kind and sweet with my boys and was happy to don her crown again after a very full event for a photo.

One little battle after another.  This special needs life still feels like a war to me.  A never ending taking up of arms one moment and protecting my child the next.  This week they are just tiny little battles but I have become weary of heading out each day.

My Angel at 108 Degrees

As a mom of a special child I am resigning myself to the fact that there may be some things that occur to our children that are beyond the scope of knowledge of the medical profession. A very difficult “pill” to swallow as we want to believe that they can find the source and “fix” or prevent these things from happening…

As I write this, we are on day 6 of hospitalization from yet another fever episode. Kaet, without warning started showing signs of an “episode” and the school staff called 911 and then me. The school nurse describes the episodes as turning cyanotic and grey/clammy skin color along with respiratory distress. By now (as this is the 3rd time this year), we know that means the fever is coming; the nurse checked right away and got a reading of 99 degrees, shortly before EMS arrived she attempted another reading and it was just above 100 degrees; by the time EMS arrived at the ER, she had skyrocketed to 108.1 degrees!! – yes AGAIN, my baby girl’s body was “cooking”.

the survivors blog – a tribute to those who sink and those who survive

The story of the Titanic survivors has been prominent in the news lately due to the observance of the 100th anniversary of the April 14th, 1920 disaster.   Some survivors talk about the event.  Some survivors  never talked about that night, up until their passing many years later.  I am struck by how survivor stories are told (or not).  More so, it has made me think about blogging…

The NICU: Riley in Daddy’s Arms

 

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