Ladies and Gentlemen – May I Have Your Opinions, Please?

It would seem 2018 is shaping up to be the year of second opinions.

Cue the rewind music.

We went to Gabriel’s six month check-up for his spine in November.  If you remember from last time, the curve that straightened itself with the brace, was back to being a 10 degree curve.  Well, it’s still at 10 degrees – BUT, Gabriel grew two inches in the six month wait and the curve didn’t get any worse.  This is a BIG victory!!!  So big, we don’t have to go back for another x-ray for nine months!!!!

But I did mention second opinions, didn’t I?

I took Gabriel to see his pediatrician for his six year wellness visit (no, I can’t believe he’s six already).  When our pediatrician asked if I had any concerns, I mentioned first that I am still a little concerned with him still needing physical therapy for now very slight delay in his gross motor skills.  We talked about the fact that a few years ago we spent a lot of quality time with the local pediatric neurologist and she didn’t find anything that would be causing the delay.  But, my mother instincts kept saying something was off. Our pediatrician then asked if we wanted another opinion.  I said yes, so she referred us to a pediatric neurologist in Indy with Riley Children’s Hospital.

She then asked what was going on with Gabriel’s mouth, and I said, ‘nothing.’  The last time we went to the Cleft Clinic here, our team (except for one) basically said they were out of ideas.  His speech is not improving and they don’t know what else to do to make it any better.  One of our docs thought Gabriel didn’t have enough room for his tongue in his mouth to make proper speech, so he put in an expander that we then turned for several months.  It was very reminiscent of the Latham Device, but better because it was attached to Gabriel’s teeth as opposed to being screwed into his gums.  The expander did do a good job at making some additional room in his mouth, but did not do anything to help his speech. So, we’re where we always were.

Our pediatrician then asked if I wanted a second (or third) opinion for his mouth as well.  I struggled with saying yes because we took Gabriel to Riley about 2 and a half years ago and didn’t follow through with their plans.  They wanted to fix his lip, but couldn’t say if it would do anything for his speech or not.  At that time, we wanted to get him to another speech therapist and see if that would help because we didn’t want him having surgery again just for the sake of having surgery. I explained that we just got him into another speech therapist and, while she understood, she insisted it was time to go back to Riley.  It was actually a relief that she made the decision for me, because I know it’s what he needs, I just couldn’t make that decision again.

So, on January 2^nd, we went to see the new pediatric neurologist.  She was absolutely wonderful.  She explained that it’s likely he has a lesion so small on his brain an MRI couldn’t pick it up that was causing the delay in his gross motor skills. The lesion likely occurred during pregnancy or childbirth and since it doesn’t appear to be impacting his intelligence and he is only very slightly delayed, she wasn’t too concerned about it.

What she was concerned with, however, was his slight sleep apnea and his combination of issues. She believes there has to be a connection between the cleft, the scoliosis, the sinus problems, and the left-side weakness in his body – but she doesn’t know what it is.  She is sending us to meet with a genetics doctor to see if there is an undiagnosed syndrome causing all of this.  She is also scheduling a sleep study to determine how severe or not severe his apnea is.  She says the prolonged effects of sleep apnea are not something we want for him, so we need to get on top of it now.  Neither of those appointments has been scheduled yet, so more to come there.

We are now gearing up for our second trip to the Riley Cleft Clinic on January 22^nd. We will be meeting with a different surgeon than last time and will hopefully have some solution that will help him.

We will also be meeting with our Cleft Team on February 14^th to see if they’ve come up with any ideas in the past year.  I’m not hopeful, but I am willing to hear them out.

Gabriel has started being bullied at school by kids making fun of him because they can’t understand what he says.  These are his words – I don’t know how true or untrue these allegations are.  I do know that if they are true, it devastates me.  I would expect this by fourth or fifth grade, definitely middle school, but not in kindergarten.

Speaking of kindergarten, when we moved him to his new school at the start of the school year, I explained during his IEP (Individualized Education Plan – something every student receiving special education services has) that my biggest concern was that they would tell me he has to be held back because they can’t validate that he can read.  How do you validate someone can read if you can’t understand what they say?  They assured me they would find other ways to test his knowledge and that I shouldn’t be concerned.  When we got his first quarter report card, I was immediately concerned because in the areas all related to reading and language, he received a rating of 2 on a scale of 1-4 – which means ‘Inconsistent’.  I went to his parent-teacher conference and questioned how she was testing him on things like syllables.  His teacher explained that she tested him like she does everyone – verbally.  I explained that he can’t be tested like that and perhaps she should have him clap syllables, because he does fine that way.  She wasn’t convinced and said maybe next time she’d take that into consideration.

I just got his second quarter report card and all the 2’s have moved to 1’s – which means ‘Needs Development’. I looked through all the testing criteria, and again, it is all done verbally.  She also stated that she has concerns with him academically and is requesting a conference.  I sent her a note that said – yes, a conference is needed, with the full IEP committee.  I was outraged.  Picture a mama bear protecting her cub.  My child is not dumb.  My child is not failing.  My child needs help.  And I don’t know how to give it to him.  He has speech therapy four times a week.  Four times!  There is literally not much else we can do.

I know people are dealing with worse things than we are.  Some of my close family members are dealing with much worse things, so I can’t help but feel guilty about complaining about all of this.  I’ve just learned since becoming a parent that the most important thing we, as parents, want for our children is for them to have a better life than we had.  Even if we had the most amazing childhood, we still want even better for them.  I can’t help but wonder if I’m achieving that.