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.

Crooked

Wow!  I just realized I haven’t updated my blog in 2016!  I’m a dreadful blogger!!  Good thing this isn’t my full-time job!  Not to say that things haven’t been happening though.

In December, Chad and I went to look at a couple houses purely out of the sake of curiosity.  Well, we caught the moving bug and bought 3.5 acres in a great location.  Much closer to my work, some room to breathe, and a really great school district for my boys.  Not to say that where we were wouldn’t have been great, but when you have two kids with special needs, their education becomes ultra-critical and I believe we are going to be in the right place for them.

We are building a house on our land and it should be finished in the beginning of September.  In the meantime, we sold our house on the 9^th showing and are now living in a tiny apartment in Fort Wayne.  Apartment life is not great, but we are so much closer to everything, including all of Gabriel’s doctors, that we really can’t complain.

The other reason I haven’t updated my blog in so long is because I thought we were finally going to have a year with nothing to do.  We went to Gabriel’s cleft clinic in March. His doctors remain concerned with his speech and wanted to do a minor experimental surgery to see if they could make it better. My mother’s intuition said that with 9 surgeries in 3 years he’s had enough, so I asked if we could wait a year and address the palate and repair his lip for better functionality before he goes to kindergarten.  Our surgeon said that he trusts mother’s intuition more than anything else, and if mom says he’s had enough – he’s had enough.  So –I thought we were in the clear.  Not so much…

If you recall from my last update in November, we had gone to St. Vincent’s to have a slight curve in Gabriel’s spine checked out.  At the time, the curve was 17 degrees and the doctor thought it wouldn’t get worse, but wanted to do an x-ray every 6 months to be sure.  Good thing we did.

In May, the curve changed to 20 degrees and is now curving and twisting at the bottom instead of just slightly at the top. I was completely devastated by this news. I just knew that when he said it probably wouldn’t get worse that he was wrong. We’re talking about a kid with the largest cleft palate our surgeon has ever dealt with in 25+ years of repairing palates.  Gabriel doesn’t do anything small!

So now what? Today we went and picked up Gabriel’s new scoliosis brace that he has to wear for 16 hours a day. The objective is to stop the curve from getting worse as the brace will not correct the curve that has already occurred. If the curve gets to 40-50 degrees, we will then have to start talking about spine surgeries to have metal rods put in and vertebrae fused together. Given that the curved worsened in just 6 months and the horrible internet says that in cases where scoliosis presents itself in such a young person, the brace won’t help. I hope the stupid internet is wrong.

Gabriel does not like the brace, as you can imagine.  I’m including a picture below so you can see how huge this thing is. Over the next week, we are supposed to work on getting him to sleep in it and eventually work our way up to wearing it throughout most of the day as well. He didn’t seem to mind it when we were in the prosthetic office, but getting him comfortable in the car was just awful. Imagine not only being stuck in a booster seat, but also not being able to move your upper body at all.  He couldn’t reach the window control to put his window down and cried the entire way home.  I expect tonight will be a very long night.

It’s funny when these things happen the thoughts that run rampant in your mind. I know I’m going to lose readers when I say this, but the continual crap that keeps happening to my baby has made me a bitter, angry woman. I pray to a god every night that I am just not sure is listening. I’m sick of being forced to believe that everything happens for a reason and that He has a plan for us. If He has a plan, I really wish he’d leave my boys out of it. If bad stuff has to happen, I want it to happen to me. I can take it.

It’s incredibly unfair for a child who can’t speak intelligibly not matter how hard he tries to not only have scars on his face that will always draw attention, but is now strapped with a full upper body brace that he will likely have to wear until he is done growing and will instantly mark him as different. I wonder how many people will give him a chance and get to know the beautiful child he is without seeing these things that make him different first.

All I know is this hurts.  He’s had to endure more than any child should and it doesn’t appear it’s going to stop any time soon and I just can’t understand why.  Why him?  Why do my boys have to face incredible challenges?  When will I get answers?  When will we all be able to make peace with the lives we’ve been given?

Don’t get me wrong. I am so thankful that he (and Ethan) are otherwise perfect in every way, but God, what I wouldn’t give to have to worry about how I’m going to get them to all of their extra-curricular activities rather than getting them to doctor’s appointments and trying to figure out how I’m going to pay their bills.

The next x-ray for his spine is back at St. Vincent’s in November. In the meantime, we’re going to get him adjusted to life with a brace, keep up his speech therapy, and take him camping as often as we possibly can. Next week we are taking the RV to Destin, Florida to introduce the boys to the ocean.  I’m optimistic this trip will provide just the break we need from the madness.  And maybe we’ll all improve our tans at the same time!

Until next time…

Someday never seemed so far away.

It’s never been a secret between God and me that I have issues with blind faith.  I’m the type of person who must be in control at all times.  Always have been.  I like to make decisions.  I like to lead the way.  And I like to control destiny.  At least I like to pretend I do.  Let’s go back, shall we?

We took Gabriel to Riley Children’s Hospital in October.  Holy moly – that place was HUGE!!!!  Although, I must say, their gift shop was a little disappointing.  I am a frequenter of gift shops and was really looking forward to seeing what a children’s hospital would have, but it was actually fairly standard.  Anyhow, taking Gabriel to see another cleft team was enlightening, to say the least.

We have never questioned the path our cleft team has taken, but to hear how differently another team would have done things certainly made everything I thought I knew become everything I never knew.  The Reader’s Digest version is this – the plastic surgeon wants to fix Gabriel’s lip and, in the future, repair the hole in his palate.  He indicated that he would not and could not recommend any further surgeries that might help his speech because he leaves those decisions up to the speech pathologist. 

The speech pathologist was amazing!  We wish we were physically closer to her so that she could work with Gabriel, but she did provide a fair amount of information and her contact information for his therapists here, so that’s something.  She identified that Gabriel is using an ‘N Substitution’ in his speech.  This means that he has taught himself to replace nearly every consonant with the letter ‘N’.  Go ahead and try it.  What you’ll learn is that using ‘N’ for every consonant does not work and certainly makes speech unintelligible.  She indicated that she would not recommend any further surgeries for speech purposes until we retrain his brain to stop doing the ‘N Substitution’.  When I told her our goal was to have his speech intelligible by kindergarten, she said that was certainly the hope and she would like to see him back in six months to make sure we’re doing the right thing by not having any additional surgeries right now.

What we were left with after this experience was a surgeon in Indy who wants to fix Gabriel’s lip now and our surgeon who wants to wait to fix his lip when he’s a teenager, unless he gets made fun of at school.  Chad and I had many discussions about what should be done.  We also talked with our surgeon and I told him that I don’t want to wait ‘until’ he’s made fun of, because, to me, that’s too late.  Once a child becomes an outcast, it’s nearly impossible to come back from that.  Sadly, kids are cruel and Gabriel’s going to struggle enough with his speech that he doesn’t need a lip that won’t move added to the list of things kids will tease him about.  Our surgeon told us to pick the time and he’ll do the lip revision.  He just warned us that with bilaterals, it’s highly likely this won’t be the only lip revision as it will need additional revisions as he grows.

We told him that Gabriel had a series of appointments coming up related to his spine and possible stroke activity, so we would not be making any decisions until the results of these appointments are known because they would certainly take precedence over any lip revision.

That brings us to the other appointments.

Gabriel had 2 MRI’s a few weeks ago.  The first to look at his brain for signs of a stroke and the second to look at his spine to see if there was anything there causing the curvature.  The results were – no sign of stroke and a normal spine!!!!!  There was, however, an air cell in the bone around the brain that causes our neurologist no concerns, but we will have another MRI in six months to take a look at it again, just to be safe.

Armed with that, we went to St. Vincent’s on November 11^th to see Dr. B – a pediatric orthopedist – about the curve in Gabriel’s spine.  He indicated that the curve is fairly small and that ‘odds are it won’t get any worse’!!!!  We will be going back every six months for x-rays though just to keep an eye on it and make sure it doesn’t change.  Great news, right?  Kinda. 

The question now is, if Gabriel hasn’t had any strokes, there are no visible reasons for the curve in his spine, and it’s not likely to get worse, then why is his left side still so weak and his gross motor skills still behind?  Dr. B confirmed that the curve is what would be causing his left shoulder to hang lower than his right, but it is not what would be causing the delay and weakness.

So now we head back to Dr. K, the pediatric neurologist, on December 18^th so she can determine what tests are next.

We also had Gabriel’s annual IEP (Individualized Education Plan) meeting a week or two ago.  Everyone there confirmed the things we already know – his speech remains unintelligible and they are looking for other ways to help him communicate his needs, his gross motor skills have improved, but still remain delayed, and he might just be the funniest kid anyone has ever known!  His PT said that some of his gross motor delay might just be happening for no good reason and it will work itself out in another year or so.

Blind faith.

The Indy speech pathologist ‘hopes’ he will have intelligible speech by kindergarten, Dr. B thinks his curve shouldn’t get any worse, the PT thinks there could be no reason for the delay and things will work out.  What is that saying about having hope in one hand?  Doesn’t it somehow end up with poop in the other???

Nothing about this is controllable.  We are choosing not to teach Gabriel any additional sign language because the ‘hope’ is that he will suddenly be able to speak clearly.  We are not adding any additional PT because the ‘hope’ is that his delays will fix themselves.  I fear I lack the blind faith that these things will, in fact, work out.  Everyone has been saying for four years that God has this plan for Gabriel.  Everything happens for a reason.  You just have to have faith and know that someday it will all make sense.  Someday. Someday.

Someday never seemed so far away. 

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!

Oh, happy hole in the bucket down by the schoolyard

Confused?  Hold tight – you won’t be for long.

I had several ideas for the title of this update, but couldn’t choose just one – so I combined them all!

Oh, Happy Day –

The pharyngeal flap surgery went great!  In fact, Dr. S said it ‘could not have gone better’ and was ‘perfect’!  What does this mean?

It means that the quality and tone of Gabriel’s voice has changed and improved immensely.  So much that when he cried, it was hard to tell it was even him!  There is no longer a hyper nasality to his voice – meaning, it no longer sounds like he’s talking through his nose.

However, his ability to speak intelligibly is still what it was – pretty much non-existent.  He has a long way to go with speech therapy to be able to be understood, but we are confident now that with the pharyngeal flap in place, we will at least start seeing positive results.  In fact, I have officially heard a ‘b’, ‘d’, ‘w’, and ‘g’ since the surgery – it’s just that the use of those sounds lacks consistency.  

After healing for another week, he’ll start speech therapy four times a week.  Hopefully things will move quickly from there.  The goal is to have him go to Kindergarten with intelligible speech.  We’ll see…

There’s a Hole in the Bucket, dear Liza –

What you all didn’t know was that a small hole had developed in the repaired fistula following the surgery last October.  This hole popped up about a month after the repair and was seemingly so small that we were hopeful it didn’t go all the way through the palate, but rather was just open on the oral side.

Dr. S did some clean-up while working on the flap and discovered that the hole we knew about was actually quite large and that there was a smaller hole we didn’t know about behind it.  He closed up the smaller hole, but the larger hole is still open.

This presents some interesting challenges now that the flap is in place.  Whole pieces of food have been going up into the hole – which means it ends up in Gabriel’s nose.  In the past, that food would either go down the back of his throat, or would be sneezed out.  Now, since the flap closes off the nasal passage from the throat, the food has nowhere to go if he doesn’t sneeze it out.  It just sits there.  Yes, it’s gross.  I keep having him blow his nose to try and keep his nostrils clear, but sometimes it feels like a lost cause.  The other day he sneezed out pancakes, scrambled eggs, and a noodle in one sneeze – he hadn’t had a noodle for two days prior to the sneeze.  I’m pretty sure the food shouldn’t just sit in there, but he really doesn’t like for me to pick his nose – I can’t imagine why…

So, what are we going to do about it?  Well…we need another obturator!  As soon as all healing is done, we will go to see Dr. W and have another one made.  I’m not looking forward to this because it means more impressions have to be taken, and I really hate when Gabriel has to go through that.  I’m also going to push for an obturator that doesn’t have to go into the hole, but rather can be worn more like a retainer attached to the teeth.  Have to leave that decision to the experts though.

Either way, we have no plans to try and close the hole again at this time.  It’s opened too many times to believe it can be fixed surgically right now.  There is hope that it will close on its own, and if not, we’ll just add it to one of the surgeries Gabriel has as a teenager.

In addition to the hole, we have noticed that Gabriel can now snore almost as loudly as I do (which is loud) and he has been having some apnea-like episodes.  Not enough that we are concerned he needs a machine to help him breathe at night, but enough that we are monitoring it.

Me and Julio Down by the Schoolyard –

What I have not disclosed up to this point is that I’ve been fighting the school system to get Gabriel the educational care he needs.  When he aged out of First Steps for his therapies, we had to transition his services to the public school system.  He was evaluated to determine what special education services he would have provided to him.

Upon the results of this evaluation, it was determined that he appeared to have no cognitive delay, so he would not qualify for special education preschool, even though he qualified for speech therapy services and literally cannot be understood.  This did not sit well with me at all.

After some heated conversations and a lot of research regarding Article 7 on my part, I asked for a complete and full evaluation to validate their assessment.  We found out the Monday before his surgery that he presents a developmental delay due to his gross motor skills (for which he’s had physical therapy for in the past).  That coupled with his inability to speak intelligibly qualified him for speech therapy, physical therapy, and special education preschool!

This does not mean that he will always be in special education. What it does mean is that 1) he will have an IEP (Individualized Education Plan) that will follow him throughout his education (just like Ethan) and 2) that he will get the services, education, and access to an environment that will help him thrive. 

You probably wonder why I would want my child in special education, but it’s simple.  Gabriel is not the average child.  He can’t run, jump, catch, or walk stairs well.  We believe this is due to the amount of time he has spent in recovery with arm restraints, flat on his back, and unable to move like the average child.  He cannot be understood and I refuse to let him be held back in Kindergarten because he can’t vocalize his colors.  He needs smaller sized classes with highly educated teachers right now to give him the best chance to grow.

He starts preschool in a week and a half (provided he is healed enough to start) and couldn’t be more excited!  He asks all the time when he gets to go to school and would go this second if I’d let him!

Things are really changing for my baby and I can’t wait to see what happens next!!!

Oh, Happy Hole in the Bucket Down by the Schoolyard –

Get it now?!

Tomorrow is coming all too soon

Have you ever had one of those events coming up where you wanted it to both never get here and for it to get here and just get over with?  Sure confuses the brain!

Pharyngeal Flap surgery is happening tomorrow.  I can’t believe it’s here already.  I also can’t believe it’s been 6 weeks since Gabriel had his tonsils and adenoids removed.  What a horrible experience!!!!!!

Take it from me – just because a surgery is deemed ‘outpatient’, it is by no means easy.  This was one of the worst experiences ever!!!!

Gabriel and I have spent a lot of time in recovery rooms.  For every surgery, he’s been required to spend a minimum of 1 hour in recovery before being moved to his room for the night.  So, when I add it up, I think he and I have sat in recovery rooms for approximately 8-10 hours total.  The recovery room at the ENT Surgery Center was full of children who kept vomiting (including Gabriel) and other children having stuff sucked out of them over and over again.  It was dreadful and recovery at home was no better.  Gabriel was in an unusual amount of pain, kept running fevers, and was incredibly cranky!  His doctors keep saying it was good practice for the pharyngeal flap surgery because recovery will feel exactly the same.  I’m not sure how they know that.

At any rate, it is now 6 weeks later and we are on the eve of surgery #9.  Wow – that’s just hard to believe.

I have done all the usual preparations – pantry swap, packing of clothes, prescription pick-up, and finally worry myself into sleepless exhaustion. 

Since we decided to move forward with this surgery, all of my quiet moments have been filled with an endless supply of ‘what if’ and ‘should we really’ questions.  I wake up in the middle of the night thinking things I would never admit out loud for fear that verbalizing my fears would give them the power to come true. 

To remind myself of why we are doing this, I had Gabriel make a little movie so we could capture his speech before and after this surgery.  We don’t expect miracles – I’ve said this before – but we do expect change.  Take a look and see why this surgery is so important to us.  Forgive the darkness – I didn’t want to make him redo everything when I realized how little light there was.

I have many other things to update all of you on – but it will have to wait.  Surgery is at 8:30 tomorrow morning and we need to arrive by 6:30.  That means I have only a couple more hours to get some serious snuggles in with my favorite 3-year old! 

If you don’t mind, please try to include our Gabriel in your thoughts and prayers tonight.  It’s going to be a very long day tomorrow and a very stressful time following the surgery while we wait to see if any of the possible dreaded complications become reality.  Only time will tell.  Until then…

Impossible Decision Made

This coming Monday, Gabriel will be having a tonsillectomy and adenoidectomy as a prerequisite to having the pharyngeal flap surgery on February 25^th.

I bet you’re wondering how we got here and what made us decide to go through with a surgery we had previously said we would not do.

It all started with the nasendoscopy.  Prior to having this scope done, I was living in this little, imaginary, happy place bubble hoping that the soft palate was close enough to the back of the throat that through intense speech therapy, it would magically fix itself. When I watched Gabriel’s palate stay perfectly still during the procedure, I knew that happy place bubble had just imploded. 

I took Gabriel to see Dr. S (his plastic surgeon) this past Monday.  Dr. S confirmed that not only was the palate too short, but the lack of movement indicates the nerves are not doing their job of telling the soft palate to move.  He told me there was nothing he could do except for the pharyngeal flap. 

I asked a list of questions and it basically came down to this – Dr. S said (and he’s right), if you look up any condition/surgery/procedure/anything on the internet, you are going to find a million horror stories about how it all went wrong.  He believes that Gabriel will be fine and that if he does end up with sleep apnea, we can go back in (when he’s a teenager) to adjust the flap and try to help with that.  I confirmed that this is not a stepping stone surgery that requires many more to help him speak, that the flaps don’t have to continually be adjusted as he grows, and that should this not work, we are done and will accept that truth.

Dr. S wants to do the surgery ASAP so we can get in as much speech therapy as possible before Gabriel starts preschool in the fall.  Why will he need speech therapy if this is the miracle surgery that’s going to make him speak intelligibly, you ask?  Gabriel will continue to have articulation issues because his entire top lip is made of scar tissue and because his palate is not like everyone else’s.  The pharyngeal flap will help him make the sounds, but he will still need to develop oral motor function to help him articulate his words.  We expect many, many years of speech therapy ahead of us.

So, given all this knowledge, we went back to our discussions of what we were going to do.  This is what it came down to:

My son has a voice.  He uses it all the time.  He has things to say.  Imagine his frustration when what comes out of his mouth sounds nothing like what he’s hearing in his head.

I want my son to be able to defend his scars with words, not fists.  I want him to be able to order a burger from a drive-through and call plays on a football field.  I want him to join the debate team and speak his valedictorian speech.  I want him to be able to speak his wedding vows and sing lullabies to his babies at night.  But most of all, I want him never to look at me and say that we could have fixed this and didn’t take the chance.

I don’t expect you all to agree.  Some people will think speaking is not that important and the risk is not worth the reward.  I appreciate and value your opinions, but ask that you do the same of ours.

I also ask is that you keep our baby boy in your thoughts and prayers as we have surgeries eight and nine in the next six weeks.

Until next time…

Impossible Decisions

Why is it, the second you make a decision and feel good about that decision, that decision get shot to hell?

Let me back up.

After arguing, crying (me, not Chad), talking, thinking, praying, and hoping, we officially decided we were not going to pursue Gabriel having the pharyngeal flap procedure.  We would continue speech therapy and supplement with sign language to further his communication skills, but would otherwise, accept what fate has thrown at us and not accept the risks associated with the procedure on behalf of our little darling.

We went to see Gabriel’s ENT on Monday and told him that we were done and were not going to do the pharyngeal flap.  He said we’d change our minds.  He told us that he has only known of two cases that ended with the child having sleep apnea and that the rewards definitely outweigh the risks.  He also told us that he would likely be able to give us an opinion on whether or not the procedure would cause sleep apnea based on the nasendoscopy Gabriel was going to have.

That brings us to today.  I took Gabriel to have the nasendoscopy done.  My intention was to try and record some of it, but since I took Gabriel alone, it was my job to hold him down while they performed the scope.  They put a tiny camera down his left nostril and asked him to say a few things, like ‘mama’, ‘all done’, bye bye’, ‘puppy’, and other assorted sounds.  The point was to see how close the soft palate was to closing off the nasal cavity to make the sounds needed for intelligible speech.

Drum roll, please…

Gabriel’s soft palate didn't move.

That’s right – not at all.  It’s so short it has no movement whatsoever.  The only option he has for intelligible speech is the pharyngeal flap procedure.  If we don’t allow it to happen, he will never be able to use any more letters than A, E, I, O, U, M, and N.  That leaves 19 letters that will never pass his lips.  What was the worst case scenario in this exam?  You guessed it.  We nailed it.

So, now we are back to arguing, crying (me, not Chad), talking, thinking, praying, and hoping.

Because I am at a loss for my own words tonight, I am going to leave you with someone else’s words.  My cousin sent this to me when Ethan was first diagnosed with Asperger’s, but it is so prevalent in both my children’s lives that I find myself constantly staring at my cubicle wall at work where these words live.

‘When you’re going to have a baby, it is like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, ‘Welcome to Holland’. ‘Holland?’ you say. ‘What do you mean Holland? I signed up for Italy!!! I am supposed to be in Italy. All my life I have dreamed of going to Italy!’

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It’s slower paced than Italy. It’s less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, ‘Yes, that is where I was supposed to go. That’s where I had planned.’

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.’

-Emily Perl Kingsley

Finally something to talk about

You may not believe me when I say this, but I have very valid reasons for not updating our blog right away after Gabriel’s most recent surgery. 

Reason #1 – I wanted to be sure I had good news to share…and I do!  The hole is still closed!!!!!!!!

The repair turned out to be much more difficult than anyone expected.  Our brilliant surgeon had to do a triple layer repair.  The first layer was in the nasal cavity where there was not much tissue to work with, so he used a synthetic material to add to the existing tissue in order to close the hole from the nasal side.  He then put in a layer of bone grafting, using donor bone – again, thank you to the organ/bone donors of the world.  The last layer was in the oral cavity.  There was enough tissue there without having to use anything synthetic, but not enough that the tissue wouldn't be pulled tight, making a possible opening in the future a known risk.

The surgery took about six hours and recovery was extremely difficult this time.  Gabriel was on a liquid/non-chew foods diet for two weeks and would barely eat or drink anything.  He also kept running fevers non-stop.  Not high enough to warrant possible hospitalization from infection, but enough to cause him discomfort and ridiculous amounts of crabbiness!!  Weeks three and four were spent eating easy-to-chew foods and things were getting better. 

Now, we are back to a regular diet with the exception of anything on a stick.  Halloween was interesting when we had to keep telling him what things he could not eat, but he has certainly made up for it by eating his weight in M&M’s since!  We expect that as of this Monday, we will be completely back to normal and on a 6 week break from seeing our surgeon!

In the meantime, we are still seeing some food come out of his nose, despite the hole being closed. This brings me to...

Reason #2 – I don’t know where to begin with this one.

Dr. S confirmed in this last surgery, that indeed, the soft palate is too short and we have no choice but to perform the Pharyngeal Flap procedure.  Well, we do have a choice.  We could opt to not do it at all and leave Gabriel ‘as is’. 

What does that mean?

Let’s review what we already know.  Gabriel’s speech is ‘unintelligible’ – which, by the way, is a term I hate.  Unintelligible, to me, is too close to unintelligent – which he most certainly is not.  What he is - is very hard to understand.  In fact, if you didn't live with him, you probably wouldn't ever figure out what he’s trying to say.  With two years of speech therapy behind us, we have not really seen any improvement in his speech.

When making certain sounds, such as ‘b’ or ‘p’, the soft palate has to close off the nasal cavity.  With Gabriel’s soft palate being too short, this closing off is not possible.  I have asked for our doctors to perform a nasendoscopy to see just how short and far off from closure the soft palate really is.   In a nasendoscopy, a scope is put in the child’s nose and the child is asked to make certain sounds in order to see what the palate is doing.  The hope is that if the soft palate is close to closing off the nasal cavity, then perhaps through growth and intense speech therapy, Gabriel’s speech can become intelligible.

However, the alternative is that the soft palate is nowhere near close.  We have been told by two speech therapists that if that is the case, all the speech therapy in the world will never help and we are better off bringing someone in to teach us sign language.  Since Gabriel is currently terrified of all doctors and has just been through quite a lot with his last surgery, we are going to give him a few months before we do the nasendoscopy. 

So, what if the soft palate is just too short?

Here’s where things get tough.  I've mentioned the risks associated with the Pharyngeal Flap procedure in a prior post.  Aside from the complication of not surviving the surgery, Gabriel would have a huge risk of having to live with severe obstructive sleep apnea for the rest of his life.  Additionally, in order to give him the best chance at improved speech prior to going to school, Dr. S would want to perform this procedure in 2015 – next year.

As you can imagine, Chad and I are as lost as two parents can get right now.

On one hand, I went to my niece’s choir concert recently and sat there falling into this complete sadness knowing that my Gabriel will never be able to sing with a choir if we don’t do this procedure.  He loves to sing – but unless you can pick up on the tune, you don’t know what song it is.  He will likely be alienated and not have friends because he can’t speak.  Of course, having the procedure doesn't guarantee his speech will be perfect either.

On the other hand, am I signing my child’s death certificate if we go through with the procedure?  I’m not trying to be dramatic, but that’s how this feels.  Our doctor has known of children who did not survive this operation.  Our ENT says that if Gabriel ends up with severe sleep apnea because of this procedure, his hands are tied and there is nothing he can do to help. 

This is truly a decision that one way or the other will impact the rest of his entire life.  How do we make that decision for him? 

Right now, I hate the naïve me who seriously thought everything would be ‘fixed’ with Gabriel before he was one and he’d never know about his condition until we chose to tell him.  How stupid could I have been?  And how many times does my child have to pay for whatever sins I committed?  Why, for once, can’t he just be a ‘normal’ kid with normal kid problems?

I could go on all day.

Instead, on this, the eve of Thanksgiving, I will leave you with these thoughts –

I am so thankful that Gabriel is so strong and tough and able to endure the challenges laid before him.  I am so thankful for the doctors and therapists who really seem to care about our baby and what his future looks like.  I am so thankful for my husband who, though we don’t always agree, puts me in my place when I start to spiral out of control with worry and obsession over all of this.  He is the half full to my damn near empty.  And I am thankful for all of you who provide me with an uncensored voice and at least the pretense that someone out there is listening.