New Year, New Us!

Ok, not really new us.  Same old us; but a new year nonetheless!

So, what’s happening in the land of Hillegass, you ask?  It’s snowy, cold, and completely uneventful – for the time being anyhow.

Since I haven’t updated you on Gabriel’s last surgery (sorry), I’ll start with how that went.  It went…fine.  Just fine.

His soft palate repair was successful.  It seems to be holding well and hopefully will continue.  As a result, we have seen less and less food coming out of his nose – which is great!  Not great, however, is that the hole in the front of his palate remains.

Dr. S did take a good look at it and determined that it’s just too big to do anything with right now.  He thought he could possibly finagle a fix during the last surgery, but he had no confidence the fix would hold and then we’d likely be burning bridges we are going to need to cross further down the road.  He wants to be able to do some serious research before attempting to close the hole, but did warn us that (gasp!!!!) some kids just have to live with a hole in their palate!!!!!

NOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!

Yep, that was the reaction in my head.  Living with a hole in Gabriel’s palate means 1) he will always require some device to try to plug said hole, 2) he will always have food coming out of his nose, 3) he will always have chronic sinus infections, and 4) he will likely never be able to speak in a fashion anyone will be able to understand.

Yeah, that 4^th one is a deal breaker.  It’s bad enough that he has been doing speech therapy for 6 months now with little to no improvement, but you mean this might be forever?!?!?  I don’t even know where to begin with that.

Gabriel is extremely smart.  I know, everyone says that about their kid, but seriously, he is.  I worry constantly that if he can’t speak and has to rely on sign language as his primary communication, then what happens when he goes to school?  Can he be with other kids his age?  Can he even go to public school?  Last I knew the average teacher didn’t know ASL (American Sign Language), so where does that leave him?

Currently, Gabriel knows upwards of 50 signs.  Believe me - even though that’s a lot for a 2 year old, it is not enough to keep him from screaming at you when you don’t understand what he wants!  His speech therapist has now decided to include sign language in with her sessions.  She doesn’t want him to rely on it and not try to keep working on his speech, but she also knows the reality we face, which is, we need to be able to understand each other.  Funny thing is I always thought I’d be learning Spanish with my kids – not ASL.  At any rate everyone he comes in contact with is supposed to be asking him to sign and try to say everything.  We all have a very long road ahead of us.

One thing I’ve been thinking about is wondering what I tell people in public when they continuously try to get him to talk to them.  This happens all the time.  I don’t want to say that he can’t talk – because he can.  He just can’t be understood.  At the same time, I don’t want them to think there is something ‘wrong’ with him – because there’s not.  I just don’t know.

In the meantime, Gabriel will be taking part in a Children’s Craniofacial Clinic on March 12^th in Fort Wayne.  Many children do this from birth, but it will be Gabriel’s first time participating.  Basically, he will sit in a room and over several hours, surgeons, orthodontists, pediatric dentists, speech therapists, dieticians, and other various folks will file into his room to check him out.  He’s going to hate it.  However, the end result is that they will all then get together and discuss what they think the next steps for him should be.  Until then, we wait.  We hope the soft palate continues to hold, we teach and learn as much ASL as possible, and we try not to think about things too seriously.  I have a very strong feeling that if I stop to think about where we’ve been, where we’re going, and all the unknowns, I might start to cry and never stop.  I can’t be that person for my boys – and I won’t.

As you know, we recently took the boys to Disney for Thanksgiving, so I have included some of my favorite pics from that.  I hope you enjoy them!  Until next time…

When Life Hands You Lemons

It’s funny to me that when things get stinky in life, people come at you from all angles with quick and quirky sayings that are supposed to make things better – like, ‘When life hands you lemons, make lemonade.’  Or, ‘God only gives you what you can handle.’  Or, my personal favorite, ‘God has a reason he chose you for these challenges.’

Well, that’s all good and well, but when do we, as human beings, get to say, ‘You know, I’ve had my fill of lemonade?’  Or, ‘Hey, God.  I’m so strong I could bench press three VW Buses right now.’  When do we get to say, ‘Enough is enough?’

Gabriel first –

I took Gabriel to his recurring appointment with his ENT for his usual hearing test.  He failed.  Not failed, actually – he bombed it.  Over the past four months, he has gone from the most amazing sleeper to sleeping like a newborn again.  He isn’t making much progress in speech therapy.  And, he’s been battling one ear infection after another.  The ENT said all of that was his fault, really.  The tubes he put in Gabriel’s ears were only meant to last for one year (Gabriel is nearly two).  With cleft babies, they typically put tubes in early (Gabriel got his at seven weeks) because nine times out of ten they will have major ear issues until their palates are closed.  But for that one time out of ten that might not have ear issues, the tubes shouldn’t last long as they might not really be needed. 

 

Gabriel’s are needed – badly.  In discussing this with the good doctor, we decided not to wait until his surgery on December 10^th to replace the tubes as we leave for Disney in four days.  We didn’t want to have to worry about ear infections while we are there and since there appears to be enough fluid behind Gabriel’s eardrums that they don’t move when tested, it is likely the pressure from the airplane would be excruciating.  So, on Monday morning, we are heading down to have tube replacement surgery just in time before we leave for Disney the next day.  I guess, technically, that makes surgery #5 on December 10^th become surgery #6.

I am sure everything on Monday will be fine and will have no negative impacts on our trip since he will be under anesthesia for all of fifteen minutes and has been under for much, much longer than that in previous surgeries.

Now Ethan – 

If you’ve been a follower of my blog since the beginning, you might remember an off-topic post about our Ethan and the struggles he has with fears and obsessions.  What you don’t know though is that for the past year and a half I have been fighting with six psychiatrists/psychologists/therapists/doctors/various others regarding his diagnosis of ADHD and not truly believing it.  Yes, he absolutely has ADHD.  I was not fighting it because I refused to accept it.  I was fighting it because I believed in my gut that it wasn’t all we were dealing with.

I was right.  After meeting with a pediatric neuro-psychologist, conducting four hours worth of testing, and filling out countless questionnaires, Ethan has been diagnosed with having (very high-functioning) Asperger Syndrome and fairly severe ADHD.

Despite having believed for a couple of years that Ethan was an Aspie (the autism world’s cute name for people with Asperger’s), having a concrete diagnosis has done nothing but put our lives into a complete tailspin.

I’m not going to spend much time talking about this because 1) I’m not sure I’m ready, and 2) this is Gabriel’s blog – however, I wanted to let you all know that life for us has no shortage of drama.  I’m pondering starting a blog for Ethan, but at this point, I’m so bad about updating Gabriel’s blog that I don’t know how I’d find time for another.

Let me break our time constraints down for you –

Gabriel has speech therapy once a week.  After the first of the year, his therapist wants to see him twice a week.  Ethan goes to occupational therapy once a week to work through his sensory issues and also find some focus skills in dealing with the ADHD.  He is also supposed to join a social group (also weekly) to learn how to have interactive conversations (something Aspies really struggle with).  We are all supposed to be going to see a behavioral therapist to learn how to live with each other, because honestly, life is a little bit of a nightmare right now.  Dealing with all the Asperger traits is nothing short of exhausting.  Throw on top of that a child who can’t focus because his hyperactivity levels are through the roof makes things take nightmare to an epic level.  In addition, we are supposed to be meeting with his school to start a plan for his education and determine his needs in the classroom.  Oh, and of course, Chad and I work full-time.

All of this while trying to take my kids on the trip of a lifetime (which presents its own issues), preparing for Gabriel’s upcoming surgery(ies), and trying to do my Christmas shopping has caused me to throw my hands in the air and say, ‘I have had my fill of lemonade.’  I’ll take a shot of whiskey, please.