Thursday, June 12, 2014

Another Eye Surgery

We had a PO appointment.  Clearly we haven't seen health care practitioners enough in the last month or so... head wound (very minor), asthma exacerbation (ER), fever for 4 days (MD appointment)... we are on about an every 2 week visit to someone!




This visit was scheduled.  This visit, I expected that they would tell me that the timolol eye drops weren't working, Tommy's pressures were high, and they wanted to change him back to the study drug he had been on, travaprost.  I was wrong.  (I hate being wrong)  I was ecstatic that they told me his pressure in his bad eye was 18.  Yay!  Timolol is working! 



The appointment didn't start out well.  Tommy wasn't cooperating with the eye tests... or so I thought.  He wouldn't tell the new resident what the pictures were.  I thought he was being a pipsqueak- he couldn't even see the pics at 20/200.  Then she asked him to take his patch off... and he could name every picture down to 20/20.  Good news?  His vision in his right eye is 20/20.  Bad news?  His eyesight is changing- getting more nearsighted.  He needs new glasses.  Again.


That wasn't the real bad news.  At this visit they told us that it was time to do the muscle surgery to correct his esotropia.  This shouldn't have been a surprise- I knew his eye turned in (and a little up).  I know the doc's been keeping an eye on it.  I knew it was coming.  It still hit me hard.  Tommy is still so little- but big enough now that he gets it.  He won't understand WHY he will feel like crap or puke his guts out or WHY his eye is red and will have red tears and probably hurts.  But he can tell me.  He'll know that I drove him to the hospital and gave him to the nurse.  Don't get me wrong.  I know he needs this, I know it is in his best interest, and I don't have second thoughts.  I firmly believe in doing everything we can to save his sight.  I just wish he didn't have to go through it.

I had these surgeries when I was little (just regular strabismus type stuff- no cataract).  I had multiple (I think my mom says I had 7 between the 2 eyes).  I had them back in the day when it wasn't out patient, back before they had good anti-nausea medications.  I remember some of them I remember feeling sick and throwing up over and over.  I remember not being able to swim for weeks- and it was ALWAYS in summer.  (I was older when I had the last ones done- my last was at 9 or 10 years old)  I know things have changed.  The medical community has focused a lot on preventing nausea and vomiting for this type of surgery.  It's now outpatient.  I know it is a standard procedure.  But I want to know more.  I want to know when he will feel normal.  I want to know how I should tell him and when.  I want to know how to make his 3 older sisters not freak out when they see him with bloody tears for the first time.  I want to know exactly how many surgeries it will take. 

These questions can't really be answered.  I'll do my best to focus the next post on what it is really like- and I will post pictures so you all know what to expect if you ever go through it.



Sunday, June 1, 2014

Another Chapter- and a question for all iMoms

Tommy is now 3- and has his own thoughts, feelings, ideas, personality...  as a mom, that's both awesome and sad all at the same time.  I love seeing him become a real person- I love watching all the kids develop, but with each new turn, it's one step towards peeling away from me.



Tommy has  a more willful personality than his sisters- sometimes I think it's because he is a boy, or because he is spoiled, or because he's the 4th, or maybe even because he's got this little "eye thing".  I'll probably never know.  What I know is that he has been the kid who has wanted to dress himself earlier, pick out his own clothes earlier, and has definite opinions on everything Tommy.  It's been a blast.



This new little person has feelings, too.  I've described how he is ready and willing to tell people about why he wears a patch- in fact, I have prematurely patted myself on the back quite a few times for how "maturely" he handles questions.  His daycare provider told me the other day that another little boy asked Tommy why he wore a patch, and Tommy simply explained it.  (Ah, proud mom, we're doing good!)  We are out and about and someone calls him a pirate and I refrain from punching them.  (Yay!  Good job mom, show Tommy that none of this matters!)

But- this celebrating may all have been premature.  I admit that I dread the day he leaves the cocoon of our home daycare.  It's small, great provider, great families.  I do see kids stare and ask questions of their parents.  I do know that kids are honest cruel, sometimes unintentionally.  I do remember what it feels like to be picked on for being different.  I dread that Tommy will have to face all of that and there will be nothing I can do.


I just never expected Tommy to care so soon.  We were in our small(ish) town at the local bakery.  We walk in and a little girl shouts "Hey, you look like a PIRATE!"  This isn't the first time, won't be the last.  I look at Tommy and say "Say Arrrgh, Tommy!"  He hides.  This kid who can talk anyone's ear off, hides between my legs.  The girl didn't stop.  Her parents even joined in to say "Is he wearing a costume, how silly!"  (They said this to the little girl, I presume they knew that a polo shirt and a patch do not equal pirate costume)  Another lady in the shop seemingly tried to cover up and talk about her son's eye issue and how her little boy would have loved a patch.  But the family didn't stop- more pirate talk.  I honestly didn't know what to do.  I usually encourage Tommy to laugh it off or play along, but he was clearly... different about it this time.  I stayed silent myself- I found myself wanting to tell them he wears a patch for a reason- to make his eye stronger.  I wanted to defend him, I wanted to get my donuts and get out.  When we left, the girl shouts "Bye pirate!"

We get out the door and Tommy says "I NOT a pirate!"

Heart sinks.  Heart breaks just a little.

I ask if the little girl made him feel say.  He nods.  Heart shatters.

We talked about ways he could control the situation.  (Sounds big- but really I just told him that if someone says something like that to him, he could just say "I'm not a pirate, I'm TOMMY!")  We practiced this for a few minutes and he cheered up.  I showed him the #camopatchkids on instagram- to show him that there are lots of kids like him who wear patches and glasses.  Austin's pic made his day.  (I love social media!)

But fellow iMom readers- what have you done?  What have you seen?  How have you handled the moments when kids realize that other kids think they are different?

How can I make this cute little face never be sad about that again?