A New Diagnosis

I was looking through all my old pictures of Stephen because as we approach his first birthday, I was wanting to get a picture of him with a picture from his first days of life. I’ve seen a lot of pictures like that, and I thought it’d be nice to have one to show how far we’ve come in the last year.

I was prepared for painful memories. The early days were hard, and I don’t think I’ve really processed it yet because they were a blur. That’s why I took so many pictures and started my blog. I wanted to document his story, and I was afraid I wouldn’t remember things.

Turns out, I shouldn’t have been afraid of forgetting. There are things in life that leave scars on your heart, and this was certainly one of them.

I’ll never forget the drive to the hospital or the contraction that made me realize I was really in labor.

I’ll never forget the rush of the nurses trying to stop labor, being asked what hospital I wanted to be transferred to, or the doctor praying over me before surgery.

I’ll never forget hearing my son’s first cry.

I’ll never forget seeing him for the first time, hooked up to so many machines.

I’ll never forget them taking him away from me.

I’ll never forget seeing him in the NICU for the first time.

I’ll never forget how naïve I was during his first few days, not understanding how serious the situation was.

I’ll never forget hearing my son had bleeding in the brain.

I’ll never forget sitting in that conference room and those doctors telling me we had the option of discontinuing life support.

I’ll never forget feeling like my son was dying.

We were told so many possible outcomes that day. He could be a vegetable. He could be blind and/or deaf. He might never talk. He might never walk. He might not ever know who we were.

Well let me tell you something.

My son knows who we are. He knows I’m his mother. He knows his daddy. He adores his sister.

He can see. There’s damage to his optic nerve (which I’ll be getting to), but he looks at me and beams the most beautiful smile I’ve ever seen.

He can hear. He has a preference in music, and he even has a favorite song.

That doctor never told us what he could do, only what he may not do. And at the time, that made me very angry. How could he be so negative? How could he not give us hope?

And it took me a while to realize this: it’s not a doctor’s job to give us hope. It’s their job to present us with facts. It’s their job to tell me what troubles my child is facing. It’s their job to tell me how we’re going to deal with it. It’s not their job to pat me on the back and tell me everything will be ok because they don’t know if it will be.

“Science only goes so far, then comes God.” The Notebook

If I didn’t have my faith, I don’t know how I would’ve survived those next few days.

We were given the choice to remove all those tubes and wires and let him go.

I can’t say I’ve never prayed harder. Because I was so defeated and my heart was in so much pain, I couldn’t find the energy. I prayed for two things: to know if he was telling us it was time to go home and for courage to let him go if/when he was ready.

But God has plans for my sweet little boy, and I’ve watched him grow and blossom for eleven months. Do we still have challenges ahead of us? Of course. But I’ve witnessed a miracle. And that miracle reminds me every day that every breath is precious and not a single day of his life will be taken for granted.

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We had our first MRI since January on July 11^th. Stephen did great with it, and I’m happy to report the cyst on his brain is much smaller that it was in January. His shunts are still working very well. The only note the neurosurgeon had was his left shunt appears to have shifted down and may require a revision in the future. For now, we’ll just keep an eye on it. His next MRI is scheduled for January, and I pray the shunt stays put.

I mentioned in my last post that at Stephen’s developmental clinic, they had some concerns about his vision. We were seen by a pediatric ophthalmologist at Mary Bridge on August 11^th, and I was not prepared for the diagnosis we received.

Have you ever heard of Cortical Visual Impairment (CVI)? Cause I sure hadn’t prior to this appointment.

“Cortical visual impairment (CVI) is a term used to describe visual impairment that occurs due to brain injury.  CVI differs from other types of visual impairment which are due to physical problems with the eyes.  CVI is caused by damage to the visual centers of the brain, which interferes with communication between the brain and the eyes.  The eyes are able to see, but the brain is not interpreting what is being seen.” (source)

[I really encourage you to visit that page (especially if you’re our family) to learn about CVI. This video also has a lot of great information.]

Stephen’s eyes are perfect. But due to the bleeding in the brain he experienced, there is damage to his brain. We knew as he developed, we would begin to see what the damage was and how severe it is.

The damage affected his optic nerve. So as mentioned above, his eyes are seeing everything, but the damaged optic nerve isn’t able to transfer the information to the brain.

After hearing the information from the doctor, I asked if there were therapies for something like this, or if it isn’t something that could be improved. If it’s simply learning to cope with blindness, ok we can do that. We’ll figure it out. But if there’s anything that could be done to improve whatever vision he does have, we’ll do whatever we have to do.

The doctor told me that because we live as far out as we do, it “wouldn’t be worth our time to drive to therapies that wouldn’t make much of a difference anyway.”

I stopped listening at that point.

After we left the office, I sat in my car nursing Stephen and searching the internet for any information I could find on CVI and therapies. I wanted to find success stories, if there were any.

And I learned there are many success stories.

I contacted a lady at Washington State School for the Blind (WSSB) because I didn’t know where to go from there. I had a diagnosis and a less-than-helpful doctor. I figured they could, at the very least, point me in a direction.

I spent quite a bit of time on the phone with the lady from WSSB. She was immensely helpful and sent my contact information to our Early Intervention office (In-Tot).

We had our initial meeting with In-Tot on Wednesday the 17th. It went well and we have our first Occupational Therapy meeting Tuesday the 30^th.

Stephen will be 11 months old (7.5 months adjusted) on Sunday. He’s around 15 lbs. He should weigh more than that, and it’s my fault that he doesn’t. Summer has been crazy busy for us, and between work and busy weekends, I fell way behind on supplementing him. We’re back on track now, and the numbers are going up daily on the scale.

We see the pulmonologist again in a few weeks, and I’m sure we’ll start talking about the dreaded RSV season that is fast approaching. My next post will be primarily about RSV and the steps we’ll be taking to hopefully avoid it. It will be boring, but my target audience is our families and close friends, as RSV season will affect them the most.

I’ll end this post with some footage of my sweet little boy’s first belly laugh. This was something we were told he may never do. But he does. This little miracle of mine laughs, and I swear my heart skips a beat every time he does.