A Year

If you’ve never had the pleasure to visit a developmental pediatrician, let me tell you, it’s not all that fun.

Well, actually the appointment itself isn’t so bad; it’s the pile of paperwork that comes beforehand that can cause parents like us to lose our minds. Pages and pages of circles to fill out on our child, things like “fill in the words your child is saying” or “what concerns you most about your child?” or “what is your child’s strength?” and a plethora of yes’s and no’s as to what our child is doing.

I suppose if your child were a genius this wouldn’t be so bad, but when your child is what they’d call “behind” his peers, filling out this paperwork isn’t what I’d consider fun.  It’s a reminder that our son is indeed not like other three-year-olds (not that we needed to be reminded, all we need to do is leave our house or look out the window).

On Tuesday we saw Elijah’s developmental pediatrician and besides all the paperwork that came ahead of time, the appointment was really, really good. He got to see Elijah’s dancing skills, which made him laugh with joy. He told us he was really worried about Elijah the first time he met us because of his self-injury (which, by the way, has almost completely resolved).

He also mentioned that he wasn’t so sure Elijah even had cerebral palsy when he first met him, but then looked me in the eye and said, “He does have cerebral palsy” as if we haven’t known this for almost three years. “Functionally, he’s doing really well,” he said and I’d have to agree. Elijah has never seen his MRI and doesn’t seem to realize that he had a massive injury to his brain.

Can I just stop here and praise God? Elijah really is doing so, so well.

Not to minimize Elijah’s struggles, as Elijah has his fair share. His doc pointed out that Elijah tests below the 1^st percentile in all areas, which means that we shouldn’t have anyone squabble as to if he’s eligible for services.

I don’t put much credence on developmental age, but Elijah is around the 17^th month level, pushing 18 months. It doesn’t really mean much, as his skills are scattered all over the place and 17 months is just a median. We’re actually excited by this news. He seems to be developing more play skills and it’s so thrilling to see.  There are so many other changes in our son that cannot be charted or graphed, but it’s nice to see that some of the changes are actually appearing on the charts.

The doc also said that we have a really good treatment plan in place (which is a mixture of ABA therapy, preschool and some supplemental OT and speech this summer). Lots of stuff going on and Elijah is thriving.

He asked if we wanted to see him in another six months or a year. 
“A year,” we said.  Yes, I think that will do.

Tweet

Another Day – Another Doctor - Another Diagnosis

I think I'm becoming numb to doctors at this point. We've seen so many of them that we definitely know what to expect. Elijah knows what to expect. I'm sad to think that this is Elijah's normal. He doesn't know a different life - a life without clinics and nurses and height and weight checks.

Elijah met a new doctor today – a developmental pediatrician. We wanted to talk to a guy who specifically works with kids who have developmental disabilities. We also wanted to know if this doctor had any more advice for us in terms of what we can do for our little guy. We're happy we went to see this doctor. He was really nice, he knows his stuff, and I think the visit proved to be beneficial.

The doctor went over Elijah's history with us and showed us charts correlating to his development (based on worksheets we'd filled out ahead of time). The doc told us what he was going to write in his report – that Elijah has cerebral palsy, that he has global developmental delays (meaning he's delayed in every single area of his development), and that if he were to give Elijah a median age it would be about 14 months...Some areas of his development (gross motor – walking, running) are much higher and closer to his actual age of 26 months and some areas (such as his speech) are severely delayed. Yes, these are things we mostly already knew, but it's still hard to hear it from an expert. It's still hard to see your child's development charted so far below his peers.

The doctor also mentioned that he thought Elijah is exhibiting signs of Pervasive Developmental Disorder – Not Otherwise Specified (or PPD-NOS), which means that Elijah exhibits some of the behaviors of autism, but not all of them. Honestly, this one took me a little by surprise. We weren't expecting to walk away from this appointment with another suggested diagnosis. Does that mean Elijah has autism? Nope. Does Elijah officially have this PDD-NOS diagnosis? Not yet, but the doctor recommended filling out some pretty extensive paperwork to determine if PDD-NOS fits Elijah's behaviors. Am I shocked? Nope. When you've already been told that your child has brain damage and that the damage is severe, well, not much can sound as bad as that. The doctor also mentioned that about 3/4 of the kiddos he sees - that have a history like Elijah's - show signs of PDD-NOS.

Other recommendations:

The doctor mentioned re-doing an MRI. Elijah's last MRI was performed when he was 8 days old. An MRI at two years would look much different and might give us some more insight into how Elijah's injury has affected his brain and how his brain has developed. Would it change Elijah's therapies and interventions? Probably not. Might it help us understand him better? Maybe. We'd have to sedate Elijah for this study, so we don't take this decision lightly. It's something we're definitely going to think seriously about before having it performed.

The doctor also mentioned testing Elijah's hearing. Elijah's hearing was tested when he was still in the NICU (and he passed), but this doc wants to know if Elijah's brain is receiving and interpreting the sounds. Just as Elijah has an issue processing what he sees (and has been diagnosed with CVI), it could be possible that he has an issue processing what he hears. We'll definitely be performing a test called Auditory Brainstem evoked Response (ABR) (also known as a BAER), which tests both the ear and the brain. We know that Elijah hears as he's very sensitive to sound. But, is he able to understand what he is hearing? Is his brain receiving the information? That's a hard one. We don't know and hopefully this test will give us some answers.

I know it may not seem like it, but overall it was a really good appointment. We liked the doctor and feel like he's already giving us some answers and help instead of just saying, "You're doing great!" or "Just keep up what you're already doing." While those things are nice to hear, it's helpful to get the most information we can about our little dude. And while we certainly don't want any more diagnoses, they simply are labels that explain what our child is experiening based on the injury that's already happened. It's never anything new. The doctor was sweet to Elijah and he mentioned more than once how well Elijah is doing. He just stopped at one point and said, "Wow, he is doing really well." And Elijah is doing really well. Adding more diagnoses to his list won't change anything. It certainly won't change how much we love this little guy. All we can do is keep on trying to see the world how he sees it...not only so we can understand him a little better, but because I think if we could we'd make the world a happier place.

Try to look at this picture and not smile. I dare you.

Tweet