I did not see that coming

Well, I said I’d give an update when I had one, and boy, do I have one.

We went to the pediatric neurologist yesterday to discuss the slight curve in Gabriel’s spine.  Dr. K was incredibly nice and gave us an hour of her time – which is so unusual for doctor’s appointments. 

She spent time doing all sorts of exams from watching Gabriel run, to having him draw for her, count, and identify colors and pictures.  I wasn’t sure what she was looking for until she started testing his reflexes.

We discussed the weakness on Gabriel’s left side and she asked how long he’s had it.  I told her since birth really because he only ever crawled using his right arm, he takes stairs one at a time leading with his right leg, and he’s delayed in his ability to run, jump, and ride a tricycle.  She told us that when parents tell her they knew their child was right or left handed since birth that it actually means something is wrong because the dominant hand isn’t identified until much later.

While testing his reflexes, she ran a stick-like device along the bottom of his right foot.  As expected, and as normal, his toes pointed down when she did this.  When she did the same to the left foot, his toes keep pointing up.  She did this over and over again with the same results.  I asked what it meant, and she said that it’s usually an indication that the patient has had a stroke at some point. 

A what?????

Yeah, I did not see that coming.

Also, when he was running (fast walking, really) down the hall, he would hold his right arm at the appropriate angle for running, but his left arm mostly hung at his side.

This was so not what I was expecting.  I was expecting her to say that the curve in his spine is minor and that we should just monitor it.  I didn’t expect her to question whether or not our baby has had a stroke at some point.

She ordered two MRI’s for Gabriel.  The first is to look at his brain for signs of a stroke.  The second is to look at his spine because she finds the asymmetry in his body to be concerning.  Of course, these will be two separate MRI’s done under sedation so he is perfectly still.  If neither of those identifies any cause of his weakness in the left, then we’ll move on to other tests in a few months.

In addition, she is referring us to a pediatric orthopedic doctor at St. Vincent’s because scoliosis doesn’t usually present itself this early in life and she wants them to determine what should be done about the curve.  I’m hoping (though not hopeful) we can coordinate the trip to St. Vincent’s at the same time as the trip to meet with the cleft team at Riley’s.

Needless to say, I haven’t begun to process any of this.  I’m sort of numb.  Last night, I lay awake wondering what it would mean if they find out he had a stroke at some point as a baby.  Did I miss something?  Life was so crazy then with all the feeding issues and surgeries that I could have missed something.  Would it mean we should be concerned about the possibility of more strokes in the future?  Are the effects reversible?  And mostly, why did it happen?

Chad, as usual, is taking it all in optimistic stride.  He believes no strokes have happened and that there is a very logical reason for the weakness.  I wish I had his optimism.  It’s hard to be optimistic when so much has happened to this wonderful little boy in just three short years.  I’m also not trying to be Debbie Downer because we really don’t know anything yet.

For now, we play the waiting game.   I am waiting for Riley to call with the date/time for meeting with the cleft team.  The MRI’s should be scheduled sometime in the next week.  I can’t call St. Vincent’s until I hear from Riley.  And we don’t meet with Dr. K again until December 18^th.  I suppose this is another one of God’s ways of teaching me patience.  I am pretty sure He’s been trying to teach me patience since I had Ethan, but I am apparently slow to learn.

I’m going to go ahead and end this post now before I get all weepy and obnoxious.  I’m sure I’ll have updates again soon.  Until then…

Has it been 6 months already?!

We bought an RV!!!

What does this have to do with anything, you ask?  Well, as a result, we have been camping nearly every weekend and thus, everything else in our lives has been put on hold.  My house is a disaster, my eyebrows are growing straight across my forehead, and my blog is WAY outdated!!!!  It’s certainly not because there is nothing going on.  Rather it’s because there’s too much.

Since Gabriel’s pharyngeal flap surgery in February where a new fistula was found in his palate, he has had a more permanent obturator banded to his teeth.  It still plugs the hole, but it’s not something we have to keep taking in and out all the time.  It works fairly well.  We still get some liquid out of his right nostril when he eats, but it’s much, much better than what came out of his nose before the obturator!!!

And now the part you really want to know about…his speech since the last surgery.  Well…

I’m sorry to have to say that it has not significantly improved and the hyper-nasality (though better) is back.  This is really bad news and his doctors are quite disappointed.  The theory behind the unintelligible speech and hyper-nasality is that the ports in the pharyngeal flap are not opening and closing as he speaks, and therefore, we are back to having letters that he is just not physically capable of saying.  So now what?  That’s the million dollar question.

Dr. S has some ideas of things he could try, but since the pharyngeal flap is always the last resort surgery and has always worked for every other case in the past, he’s never had to think beyond the flap.  At this point he needs time to research.  The big problem is - we’re running out of time.  There is a short window of time where children learn everything they need to know about speech, language, and communication.  That time is now.  The fear is that if Gabriel doesn’t learn how to control the ports and make them close during this short window, he never will.  And then we are back to needing to find other ways to help him communicate.

Dr. S has recommended that while he does his research, we take Gabriel to Riley Children’s Hospital for a second opinion.  Perhaps one of the four plastic surgeons there have had to go beyond the pharyngeal flap and will have a brilliant idea about what we can do.  I certainly don’t want to sign on for another surgery, nor do I want us moving in a direction that takes away from Dr. S, but I do want my baby to speak and be understood.  I guess it comes down to the fact that we will do everything we can to make that happen – even if that means finally admitting defeat and seeking out help wherever we can find it.

The appointment at Riley hasn’t been scheduled yet (they’re reviewing his medical records), but should occur within the next month.  I will update when I have an update.

In other news, because Gabriel doesn’t deal with enough – after his surgery in February, Dr. S asked if we’ve ever had his spine checked because he noticed that Gabriel’s left shoulder is slightly lower than his right shoulder when he walks.  I never really noticed that.  He’s always been delayed in his gross motor skills, but I guess I just thought that was because of the amount of time he spent laying down in arm restraints during his first year of life.  Apparently not.

We went to his wellness visit in July and I asked his pediatrician to look at his spine based on Dr. S’s concerns.  His pediatrician said she didn’t notice anything, but it could explain why he is still showing signs of gross motor delay, so she went ahead and ordered an x-ray. 

As it turns out, there is a slight curve at the top of his spine going toward the left.  We were given the choice of just monitoring it and seeing what it does, or we could go to a pediatric neurologist to get some more information.  So, now we have Dr. K coming into our lives!  Our appointment is tomorrow morning, and while you might think we’re overreacting to a mild case of scoliosis, I have learned with Gabriel that nothing is minor.  I have several questions for the new doctor, such as - is this as bad as it will get?  What we should look for in the future?  Is it, in fact, the cause of his gross motor delay?  If so, is there something his physical therapist can do to help?

Poor kid.  All of this is a huge reason why we bought an RV this year.  We really want our kids to just be kids.  If only for a moment…

I’ll update at things progress and we get an appointment at Riley.  In the meantime, we have six more weekends to spend camping before we store the RV for the winter, so we’re off to behave like kids!