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.  

No, I did not fall off the face of the earth.

Oh, my – I am such a bad blogger!!!!  You know the moments when you keep thinking you really should email that old friend you haven’t reached out to in a long time, but there’s just so much to update them on that it seems exhausting, so you don’t bother doing it?  Well, consider yourselves my friends I should have emailed months ago!

So, today I am going to provide the Reader’s Digest version of everything that has happened in the past nearly six months since I gave an update and then, I PROMISE I will provide greater updates in a more timely fashion.

Back in March, I had indicated that we were clear of surgery for a few years – well…that’s a lie.  We went for a follow-up appointment with the plastic surgeon on April 8^th and Dr. S let us know that Gabriel’s soft palate (alllllll the way in the back of his mouth) was pulling apart again.  Dr. S said that Gabriel’s clefts were so wide (the widest he’s ever worked on) that as his head continues to grow, the tissues used to repair the palate just can’t keep it together.  He wants to try one more procedure before he is forced to do his last ditch effort procedure – which would mean a life of sleep apnea and other miscellaneous problems.  In addition to repairing the soft palate, Dr. S is going to look at the hole again and see if there is anything he can do – though he highly doubts it and believes waiting until Gabe is a teenager will be best.  And, in case you didn’t know this – the left side of Gabriel’s upper lip sticks out a little and feels like it has a hard knot in it.  Dr. S thinks it could be a cyst or scar tissue, but will open it up during the surgery anyhow to check it out.

Dr. S wanted to do the surgery in the September/October timeframe, but we’ve been planning this huge, super fancy, totally awesome trip to Disney over Thanksgiving this year – so we asked if we could hold off on the surgery until we get back.  I realize you might not understand the logic in this, but we have had 50/50 luck on recoveries from Gabriel’s prior four surgeries – two were fine and two were dreadful.  If this is a dreadful one, I really don’t want the trip ruined for him – or worse, for us to not be able to go.  Additionally, we have become very comfortable with eating and drinking with the Obturator in place, so there is really no reason to muck anything up now – especially if the palate will hold until then.  Thankfully, he agreed and surgery #5 is scheduled for December 10^th. 

In other news, Gabriel graduated from physical therapy in June.  He is still slightly behind in his gross motor skills, but considering he didn’t walk until he was 16 months old, you can’t really compare him to the average 21 month old.

We’ve been doing speech therapy now since July.  I am saddened by the fact that speech does not appear to be catching on as quickly as the physical stuff.  I have learned a tremendous amount though – like how it is highly unlikely that Gabriel can feel his upper lip at all because of the scars.  I don’t know why that didn’t dawn on me before.  I have always found it to be so strange that my C-Section scars are completely numb, so why wouldn’t Gabriel’s lip be the same?!  I have also been forced to learn more sign language than I ever thought I would need to know.  My boys and I spend our weekends watching sign language videos over and over trying to learn as much as we can.  It’s funny that when we watch the videos, I am the only one actually practicing the signs while Gabriel and Ethan run around the room.  However, every now and then, I’ll catch Gabriel standing behind me doing the signs also.  I can’t say that we will be great any time soon, but we’re getting there.  I think that if his speech doesn’t start improving soon, I am going to have to breakdown and look for someone who can teach us all conversational sign language.

Until then, I am taking Gabriel to his ENT today to have his hearing checked and see if they have any ideas on why the poor child has chronic sinus infections.  We took him to see a pediatric infectious disease doctor (who was wonderful), but she couldn’t do any more than prescribe him antibiotics because her gut (like all the others) says that the infections are a result of him having a hole in his palate where junk continuously gets through.  Man, I really hope Dr. S can fix that before he’s a teen.  Otherwise, I’m buying stock in Kleenex!!

Well, that’s all for now.  Sorry for my time away and the brief update today.  I will do better.  I promise!

Whew - Managed Time for an Update

You know, I really thought there would be an end to this blog as soon as Gabriel turned one.  When I found out Gabriel would be born with cleft, everyone kept saying, ‘don’t worry, he’ll be all fixed by his first birthday and no one will ever know.’  If I could go back in time and tell the person ‘I was then’ what the person ‘I am now’ knows, I would tell her to prepare for years and years, and don’t get your hopes up that it will all be ‘fixed’ in one year’s time.

As you know, if you’ve been following this blog, there is still a hole in Gabriel’s palate – even after the four surgeries he had last year.  I had been very nervously waiting for January 7^th to roll around when we were scheduled to see his plastic surgeon again and would find out if there is another surgery in our immediate future.

Well…there isn’t!!!  Not in the immediate future, anyhow.  Gabriel went through so much in his first year, and because of the size and location of the hole, the surgeon feels that putting him through surgery again would be no good for him and the hole won’t stay closed anyhow.  Additionally, the surgeon feels that his palate is too short and needs to be lengthened, so he really needs to grow more in preparation for that.  So, we are left with a hole.  And what do we do about that, you ask? 

 

We plug it.

Gabriel’s orthodontist, Dr. W., has made a new appliance for Gabriel’s mouth called an obturator.  This looks much like a retainer with no wires and has a bumped-up part on it that fits into the hole.  We get the obturator to stay in his mouth by securing it to his new palate with Poligrip – yep, the glue-like substance used for keeping dentures in place. 

 

Now, this new appliance has its good points and bad points.

 

For the good –

Gabriel can finally eat and drink without any food or milk coming out of his nose!  This has been pretty fantastic!  Certainly cuts down on the number of Kleenex used to clean up the world’s most disgusting sneezes!

Also, the obturator gives him an actual full palate, which should greatly improve his ability to learn to speak.

Now the bad –

The obturator won’t grow – this means that he will have to have a new one made every 3-6 months to keep pace with his growth.  Dr. W. thinks we will likely go through 4-6 of these appliances before he has his next surgery.  Every time one has to be made, a couple sets of impressions have to be taken, which makes Gabriel scream like the poor child has been put in an iron maiden or some other form of medieval torture device.

The obturator requires cleaning.  I have to take the appliance out of his mouth every 7-10 days to give it a good cleaning as too much yuck under there could destroy the tissue of the new palate.  Gabriel is not fond of this, as you can imagine.  Part of the problem is that when the appliance is in his mouth, the tissue around the hole will automatically start attaching itself to the appliance, so when I have to take it out, I cause tissue to tear and bleed.  I have found that dealing with this is actually worse than turning the screw in the Latham Device.  Never thought I’d miss the ‘good ole days.’

The obturator doesn’t always like to stay in.  On three occasions now, for whatever reason, the appliance has mysteriously removed itself from Gabriel’s mouth – causing mass panic as we search our home and grandma’s house hoping no animals have eaten it or no one picked it up and threw it away, not knowing what it was.

Lastly, we are now making more frequent trips to Michigan again to visit Dr. W. and his staff.  Not that we don’t love them – we do – but now Gabriel screams at the mere sight of any of them.  It’s great…

In other news, at the repeated request of Gabriel’s doctors, we contacted First Steps (an organization in Indiana who deals with physical and speech therapy for children under the age of 3) in the beginning of January.  After being evaluated, it was determined that Gabriel needs both physical therapy to deal with some delays in his gross motor skills and speech therapy, as he is still not speaking and not really even babbling as he should be.

He started physical therapy a couple of weeks ago and it is just amazing how quickly he is progressing!  He used to army crawl using only his left arm and right leg, but is now crawling (very slowly) on all fours.  Our focus for the next week is getting him to pull himself up from sitting to standing and taking some steps on his own.  His therapist thinks she will be done with him in just a couple of months and then we can move on to speech.  In the meantime, his ear doctor wants us to start teaching him as much sign language as possible.

I have learned that it is nearly impossible to learn sign language from a book and have decided that I just need to breakdown and buy a video.  What I have managed to learned and then taught him, he has picked up on very quickly.  He signs milk, eat, more, all done, night-night, and bye-bye.  He also has become really great at shaking his head no!!  We are working on nodding yes.

I can certainly tell you that life has not been dull in the Hillegass house, and hopefully reading this will help you understand why I have been so pokey about updating our blog.  It’s funny.  I was so excited to not have to have another surgery for a couple of years, and yet, now we appear to be busier than we were when going through all those surgeries last year.  Some people are just never happy...:)

So…to the ‘me then’, from the ‘me now’ – Hold on to the seat of your pants, Sister.  This is going to be a long, bumpy ride.  You will, from time-to-time want to get off, but believe me, it will still be the greatest ride of your life!

And, a couple pics to make you smile...Ignore my hair in the first one - I have no idea what was going on.