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.

Oh, my...It's been awhile...

I’ve had several people request that I update my blog lately.  It’s embarrassing that it’s already been over a year again since the last update.  I thought about shutting it down.  Thought about it a lot, actually.  But it’s not like things haven’t been happening in the past year.  Plenty has happened.  I’ll try to keep it brief though for those 3 or 4 of you who asked for an update.

Let’s see…last November we took Gabriel back to St. Vincent’s for his 6 month check on his back.  After wearing a brace for 16 hours a day for 6 months, his back was miraculously straight!  I say miraculously because that was not supposed to happen.  Juvenile scoliosis does not get ‘fixed’ with a brace.  The brace is only supposed to keep it from getting worse.  Our doctor was shocked and had no real answers for this turnaround.  His only theory was that perhaps instead of juvenile scoliosis, which can’t get better, it was infantile scoliosis, which can.  I wanted to shout this miracle from the rooftops, but something stopped me from saying anything at all.

First of all, if it was infantile scoliosis, there was no way to explain how it got so much worse in six months’ time before the brace. Secondly, things with Gabriel rarely ever get better.  So there’s that.

We went back in May for his 6 month check again, and what do you know? The curve is back. It’s only about 10 degrees, so not as bad as it was before and not bad enough to require a brace again, but the theory of infantile scoliosis was officially blown. So now we wait until this November to go back again for another x-ray. I look at his back on a regular basis and don’t see his spine curving any more, but I am certainly not a doctor and I am certainly not getting my hopes up.

He continues to improve with his gross motor skills – mostly thanks to the physical therapy he received in school. He can peddle a tricycle, jump about an inch off the ground with both feet, and run.  It’s still not a very fast run, but after 5 years of therapy, it’s actually a run. I’m not sure he’ll ever be able to skip or jump great heights, but we’ll take what we’ve got for now and just enjoy watching him run around.

In regards to his mouth – we went to his cleft clinic in March. All of his doctors, save one, pretty much determined there is just nothing else they can do to improve his speech.  After 5 years of speech therapy and thousands of dollars, his speech is still unintelligible to those who don’t live with him.  And sometimes unintelligible to those who do. The one doctor who didn’t necessarily agree was Dr. W.  His belief is since Gabriel has no arch in his palate, there is no room in his mouth for his tongue to move around and help make the sounds he’s been unable to make (which is virtually every letter except N and his vowels).

In April Dr. W put in an expander to try and widen Gabriel’s upper jaw to make room for his tongue.  The good news is that there has been a slight improvement in his speech, so the expander appears to be working.   The bad news is that the hole in his palate has only gotten bigger, which will make it even harder to fix in the future – possibly resulting in it being there for life.  Additionally, the hole is open now instead of plugged, so we have a really good time digging food out of it every night and hoping he doesn’t ever sneeze because the mess is unlike anything you’ve ever seen!

I don’t know what will happen when the expander comes out.  I guess we’ll head back to the cleft clinic to see if anyone has any other ideas.  Dr. S is super resistant to working on Gabriel’s lip because with bilateral cleft kids, you don’t want to do it too early because you almost always have to do it again as they grow.  I get that.  I do.  But I can also tell you there is no movement in his upper lip, which cannot possibly be helping with his speech issues.  Dr. S says he’ll fix it sooner if he gets made fun of at school.  I’d really hate for that to happen though because I think it’s mighty hard to come back from being an outcast among your peers.  It’s interesting to me that when we went to Riley’s for a second opinion a couple years ago, the surgeon there wanted to fix his lip immediately.  It’s so hard for parents to know what to do.  I have dreams sometimes where I take him to many doctors and none of them want to help him.  The kid has so much to say and no way to say it. I refuse to believe this is just how life is going to be for him.

He starts kindergarten next week and is super excited about it!  I’m super scared.  I fear no one being able to understand him.  I also fear that they will not be able to validate his ability to learn (especially reading) because he cannot verbally provide answers.  I took him to the eye doctor last week because he’s on the cusp of needing glasses and the poor girl helping us kept trying to get him to read letters.  All the letters sound the same when you only have so many you are able to actually articulate.  I finally asked her to switch to pictures because it’s a little easier to validate if he can see things clearly or not.  It’s the little things like that that get me down.  He looks like the perfectly average child and people appear to not know what to do when they figure out his speech is unintelligible. I find I spend a lot of time trying to explain it to them, and really don’t need to.  I guess I just don’t want people to assume it’s not because of something medical, but rather because his parents choose not to help him.  Paranoid, I know.

Gabriel is such an amazingly funny, loving, beautiful boy.  I only hope that one day this will all be behind us and a memory for which we can share a good laugh.