Hellobee

This part of D’s journey jumps around in time a bit – from his birth to basically the present! D first saw a neurologist when he was a few days old and his brain was swelling. He had some EEGs done (which record brain activity) – that’s how they knew how bad the swelling was and when it was over, and they were able to confirm that he wasn’t having seizures. The neuro said he should get an MRI when he was full term, to try to assess the long-term brain damage. When we transferred hospitals to get D’s feeding tube surgically placed he was about 39w adjusted, so we decided to get the MRI done there.

Prepping for an EEG – covering his head with electrodes and cotton balls took forever!

I’ve never had an MRI before and didn’t know what to expect. For babies, they put little ear muffs on, and swaddle them in this heavy plastic blanket thing, and then they are supposed to lay flat and be very still. Apparently, most very young babies like the noise and the dark and the tightness, and they sleep right through it, but D was not one of those babies! He was crying and moving too much so they gave up after about 3o minutes. We ended up keeping him sedated and intubated after his feeding tube surgery so they could do it then when he would have no choice but to cooperate.

Failed first MRI attempt and successful 2nd

Our NICU social worker set up a meeting that Mr. Tiger and I could have with the neurologist to talk about the results – I suppose she was preparing us for pretty devastating news. However, the neurologist popped in when I was hanging out with D in his room several hours before the meeting and said, “I don’t want to wait to tell you good news!”

He “only” had scattered, minor brain damage, and she said it wasn’t focused in the area of the brain that’s responsible for speech or movement. It took a while for that good news to settle in as good news, partly since the neuro wasn’t a touchy-feely-type person and was very straightforward – if it had been me I would have been high-fiving people! Later when we returned to our original NICU I spoke with our favorite doctor, and she confirmed that it was great news (woo hoo!), and it looked like he wouldn’t have cerebral palsy (CP). I immediately went home to google and was inundated with websites on how to sue your doctor if your child has CP, so I just gave up on learning more and put it out of my mind.

We had one visit with K’s current neurologist when he was home the first time, but at that time she took more of a “wait and see” approach, since he was only a few weeks adjusted and they didn’t expect a lot out of him. About a month after D came home from the hospital the second time we went back for a checkup. She was happy to see how good he looked (compared to the scary hospital reports), but had some areas of concern. She felt that he balled his fists too much, that his right arm and left leg were weak, and that he pointed his toes (known as “drop foot”) too much. We discussed some massages and exercises I could do with him, and she said she’d refer us for physical therapy (PT). I left feeling pretty good, almost like I had a homework assignment that I was confident I could complete. Later that week I was filing away the stack of paperwork that had accumulated on our counter, and I came across the neuro visit summary. I glanced it over and noticed that she had added a diagnosis to his long list – cerebral palsy.

My heart just dropped. Thankfully this was after the kids were in bed. I called Mr. Tiger (who was at work) and lost it. He tried to reassure me but was obviously shaken as well. I felt betrayed. The only time this had been mentioned as a possibility was when the NICU doctor said that he didn’t have it. I emailed D’s regular pediatrician and asked if this was a true diagnosis, not just something put so the insurance would approve the PT referral. Then I started googling again, and just crying and abandoning any hopes and dreams I had for him. I started thinking that we would have to move, since our house has 3 levels and is on a hill, how would we roll his wheelchair around? Would he be able to go to school? I would need to quit my job, etc etc. As I’ve mentioned before, this is how I process new information – I flip out, and then regroup.

It took a few days, and conversations with lots of people I respect and trust, for me to feel like everything would be ok. D’s pediatrician told me to think of it as a description rather than a prognosis, and she said that CP gets unfair stigma. After all, I had been perfectly fine with getting D regular PT, fine with doing the exercises to work on his muscles… the official diagnosis didn’t change any of that. He was the same baby – my curious, snuggly, tough little boy.

I know a lot more, now. I know that CP isn’t a death sentence — many people with CP have really rich, fulfilling lives. CP can mean a huge spectrum of capabilities, from totally reliant on a wheelchair/other devices, to needing surgery or braces, or just having a weaker limb. I found websites and blogs that weren’t based on suing people, but were based on living and thriving. Regardless of what his physical limits end up being, I know that D is going to have a great life – he has an awesome family and we are always going to do the absolute best thing we can for him. Big brother K is someone for him to look up to and chase behind – all of D’s doctors have told us how fortunate D is to have an older sibling!

D’s neuro saw him a few months ago and was blown away with how great he was doing. She told us to only come back to see her if I’m worried about something, but she doesn’t think he’ll need any interventions (like surgery or braces). I’ll talk about D’s physical therapy next!