Here We Are Again...

Sitting in the dark of, yet another, stale hospital room. It makes me think. Life started this way for SS too. From day one, it was hospitals, doctors, and tests. I remember needing an x-ray on my foot and them forcing me to take a pregnancy test. I remember nearly fainting in fear when the doctor told me I was pregnant again. I remember the hushed and hurried calls to the OB, requesting me to be seen the next day. I remember the OB rushing me off to the perinatologist for in depth ultrasounds at 10 weeks. I remember the whispers and request that I return in 4 weeks for more tests. I remember the night I went into preterm labor and the subsequent nights spent up every 4 hours taking medication. There were tons of hospital visits and even more doctors visits, even before she was born. Before there was autism, there was ALWAYS something with her.

Here we are again. Leads and wires sticking out all over the place to monitor her every move and breath. This is the second time this year she has been hooked into a computer like an extra mainframe, but it won't be the last.

I look at her innocent little face, all covered in wires and tape, and think, "Does it end? Will there ever be answers for her?"

She is nine years old now. In nine years, we have seen more specialists for her than I have ever seen in my life. Yet, we have less answers than we did. How is that?

First, there was PDD-NOS and Sensory Processing Disorder. I was alright with that. It hit home hard, her being the second child diagnosed with ASD in a year, but we rolled with it.

Then the seizures started. She was diagnosed with Childhood Seizure Disorder. That was like a knife to the eye. It was so terrifying and unexpected that as her mother, I was certain it couldn't get worse. That was her first round of wires. We went two years with medications, and when she seemed to be growing out of them, we took her off.

Not six months later, came the ADHD diagnosis. We expected that. We waited to see if we could find an alternative to medication, but nothing worked, so on the medicine she went. Six months after that, she started having seizures again and was found wandering in school alone. That kicked off round two of the testing and monitoring. EEG's and other such tests were ordered. We were in the hospital for 2 days for them. Nothing was ever found and they subsided to about one every 3 months. They were diagnosed as absence seizures and we opted to keep her off medication since they were so infrequent.

Nine months later, she had a cancer scare. The left side of her neck and face swelled to the size of a golf ball. The tests that went into diagnosing what it was were numerous. Blood tests, urine tests, and x-rays. When they found it was not cancer, but a rare form of cat scratch fever that was resistant to medication as a solitary treatment, there was a CT ordered. Then the poor dear ended up with a needle in her lymph node to drain it. She had to remain awake for the procedure and was so brave.

A few months ago, the seizures started up again. We switched pediatricians due to insurance issues at that time. We ended up with new everything, including a new neurologist. This neurologist decided to throw out the seizure diagnosis as definite because the EEG's never showed anything. She ordered more tests to be done. She asked me to keep a journal. I did so and with astounding results. I even got an episode on tape. The neurologist said it didn't look like anything she had seen. She said to go through with all the tests and if they reveal nothing, she will refer her to yet another specialist.

Another set of wires later, we had MRI results stating there was a small mass, likely uneventful, in her pituitary gland. Another MRI was ordered for 6 months later and a referral to the neurosurgeon was ordered.

And here we sit. More wires. More monitoring. This is just a sleep study and really a non-event, but in the dark, I can't help but wonder. We have another EEG scheduled for next month sometime, a psychiatrist appointment, and a neuropsychiatrist appointment all coming up before the end of the year. Those are just the ones we are absolutely sure of. How many more? Where are those answers?

We started with a straight forward diagnosis and a reasonable expectation. Today, I sit in this unyielding chair watching my baby girl, realizing we are further away than we were. Where there were answers, there are now questions. Where she has ASD and CSD, she now has a big question mark. Yeah, they know it's ASD, but as for the other things, they have no answers. They don't even know how much her ASD is affecting her functioning. They don't know what is affecting anything at any given time. What does that mean? It means I have no answers.

This is one of those days where I wish life were different. Not because it's hard, or because it's frustrating, but simply for her. It hurts my soul to see her so comfortable with wires and staying overnight in the hospital. It makes my heart bleed for her when she recalls with vivid detail, all of the things she has been through, and doesn't show fear or apprehension. She shows to the nurses and doctors that this is normal. It is a part of her life. That kills me. I wish it wasn't. I wish she didn't have that ease and familiarity with all of this. No child asks for this. No parent should go through it. Yet, here we are, again.