Wednesday, September 29, 2010

Don’t Cry for Me Argentina…

The other major update about Truman and one that I still don’t know how I feel about came from the eye doctor.  We took Truman in to make sure his vision was OK.  Sometimes balance issues and other delays can be caused by poor vision.  We also realized over a year ago that Tru didn’t cry tears.  He is a happy dude and doesn’t really fuss much anyway but when he did there was never a tear.  His eyes watered when he coughed or had crap coming out of his nose but he never had that big tear slide down his face that makes us all giggle.

The good news was that Truman has perfect vision.

The bad news is that the doctor is 99% sure that he was born without the “response tear gland.” 

Apparently there is a gland above your eye that fills with tears that come from an emotional response.  The gland as it fills has overflow that comes out of the eye and we call tears.  He told us that 2-4% of the population is born without the gland.

He told me that Truman will never cry tears.

Truman will not cry at a sappy movie, on his wedding day or when his child is born. He will never laugh so hard that he cries or put on a show of tears to get away with something.  He won’t cry when someone he loves passes away or breaks his heart.  He will never know how cleansing it can be to just let it all go and sob.  He will never experience the salty taste when his lips are coated with tears during a moment of pure sadness or joy.

I don’t know why this one has been so hard on me.  Maybe because it is so real.  So permanent. 

Because we don’t have a final diagnosis at this point I still can imagine that he is going to “grow out of it.”  It is still very possible that Truman will eventually catch up or at least get close and we will all breathe big sigh of relief.  Part of that is the assumption that he will grown to get married or have a child, have his heart broken and laugh uncontrollably.   But the truth is…we don’t know if that will happen.  At this point so much is unknown so it is much easier to imagine a “normal” life than anything else.

But this was a “never” moment.  And all of it really crashed down for a bit.  It still really hasn’t sunk in.  And I know it sounds a bit crazy to get so upset over such a relatively small thing.  But I come from a family of criers.  We cry at everything.  Dog food commercials, sappy songs, beautiful sunsets, funny stories…we are big with the tears.  I can’t watch Extreme Home Makeover because I literally boo-hoo from beginning to end. 

Will people think he is hard hearted or soulless when they realize they have never seen him cry?  I know it is sexist but I guess it is better that he is a boy since big boys don’t cry and all that crap.  (Don’t tell my Dad that…he is worse than all of us put together!)

Tears are a big deal.  Having to face a big reality is bigger.  Hiding in my closet so I don’t have to deal?  Possible.   

Medical Stuff

After a few weeks Truman is now doing so much better since he had his tonsils and adenoids removed.  It really is incredible to realize just how bad his breathing had become when compared to now.  He doesn’t snore anymore!  I used to be able to listen to him snore through the baby monitor and know that everything was OK.  Now I have to check on him all the time just to make sure!

That is the good part.

The bad part is that he is continuing to have issues with swallowing.  The issue actually goes back to birth.  He struggled as a newborn with nasal reflux.  Basically he would have milk or spit up come out his nose.  His eyes also watered and his nose was always stuffy and he got a lot of infections.  We had a swallow study done and the doctors thought that it was a muscle tone issue.  (See all the other medical posts to learn how much I love hearing THAT as a reason once again!)  Basically they thought that he wasn’t strong enough to swallow everything all the way down to his stomach so some would squeeze back up and come out his nose.  So we started thickening his formula to help weigh it down and make it easier for him to keep it down.  And it worked!

As time went on we slowly decreased the amount of thickening he needed and eventually he stopped needing anything at all.  He did continue to have infections and suddenly his tonsils & adenoids were huge.  So off we go to remove them to make him better.

After his tonsils and adenoids were removed he suddenly started having stuff come out his nose again.  I was trying to feed him some ice cream a few days after his surgery and suddenly two lines of chocolate ice cream started pouring out of his nose.  Freaked out I called the ENT who reassured me and said that it can happen because the soft palette can get stiff after the surgery and to give it a couple of weeks.

Typical doctor—if HE had food coming out of his nose when he ate would he wait a couple of weeks?  I don’t think so.

So we waited.  And waited.  And while it has gotten much better he is still having some problems. 

Adding to the concern we started to recognize that he had lost his consonants since the surgery.  He suddenly wasn’t saying Dada or Baba or any hard consonant any more.  He has all of the vowels the softer front of the mouth consonants but that was it. 

So we called in the Speech Therapist.  She was immediately concerned and I could tell very confused.  She has recommended going back in for another swallow study.  Apparently there is also a nerve that can be hit during this type of surgery that can cause speech issues.  Great. 

We are headed to his neurology follow up tomorrow.  The hope was that he would be walking by this follow up appointment so we could remove the possibility of a few neurologic issues that we still haven’t been able to dismiss.  No such luck.  He is close.  At least everyone tells me that.  He seems like he is ready to go but as soon as he feels the lack of support he immediately crumbles.  Part of me thinks it is confidence.  He is just scared to let go.  (Sound familiar Mommies?)  The other part of me thinks it is a balance issue.

Because he isn’t walking he is officially “delayed” now at almost 19 months.  That delay with the additional small motor skill delays and speech issues all add up to another trip to Genetics and scheduling an MRI to check out his beautiful brain.  Something about grey matter and white matter and what’s the matter. 

My little medical weirdo is happier than ever.  He has also recently discovered how to fight back against his sister or anyone who wants him to do something he isn’t interested in doing.  Trust me, when he whacks you across the face there are  no low muscle tone issues there!  He loves to clean up and then make a mess right away.  And the boy can EAT!  He puts it away.  I swear that he should weigh 40 pounds by now by the way he eats.  And he loves to try new foods.  He really likes to be outside and this cooler weather has helped give him the opportunity to be out much more.  Add a bath and the kid is over the moon.

The saga continues but I am much more calm.  I think.  I sound like I am calmer, right?  Right. 

I Suck

Why can’t I just buckle down and write?

I need to get over myself.  Plain and simple.

I know that I have a billion things going on and that everything seems to happen at once…but is that really an excuse?  Nope. I think the real issue is that I need to get over myself again.  I started this blog as a release and then people started to really read it.  It made me happy that people enjoyed it but then I got nervous.  What if I wrote something that upset someone?  What if someone found out something about me that they thought was horrible?  What if…

The old “perfect” gene kicked in and I started watching myself.  I would sit down to write and unless I could come up with something that was completely readable by the masses I would give up and check Facebook. 

Recent events have re-energized my need to write and my lack of concern about who gives a damn.

So life unplugged here we go.