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…