One Year!

I'm late in publishing this...It should be titled "One Year....and a few months" :)

It's June! And this marks the one year anniversary of our cataract/imom journey.  Drum roll, please!
Let's recap the past year.... (mostly for my purpose so I can see how far we've come):

June 2012- Well child visit we hear the word leukocoria- What?!?
What I learned: Be VERY careful about doing internet searches

June 2012- Our first of many appointments with a pediatric ophthamologist- glasses, patch for 4 hours and follow up in 2 months
 What I learned: How to spell the darn word (most of the time); using the                                   abbreviation PO is so much cooler easier (it took me months to know what PO was) I said "glasses belong on your face at least a million gazillion times in the the first week.

July 2012- "glasses belong on your face' continues for another million times (see things are improving) the patch war begins.  The fabric patch for the glasses stink for Mallory.  She cheats every single time.  I cry. She cries. I cry some more.  We replace a lens in her 'less than month' old glasses.
What I learned: the art of bribery when it comes to patching :) Hear the angels sing? Yeah, I did too.

August 2012- Follow up with the PO.  Darn cataract just keeps growing.  Her vision is worse despite the patching and glasses and surgery is scheduled for September 22.
What I learned:  The fine art of waiting patiently (ummm, not so much).  Ortopad is a fantastic alternative to the fabric patch...woo hoo.

September 2012- SURGERY!!!  The day came and went without a hitch.  Her cataract was removed and IOL implant was placed.  She can see!!!
What I learned:  The surgery is far worse for me than her.  She was treated like a rock star.        Drops... holy cow... I had no idea what kind of schedule this would need.  I had a calendar devoted just this for about a month.  The WONDERFUL world of IMOMS!!!  Who knew that I would be lucky enough to meet an actual, live imom in the waiting room... That's how awesome our PO is... She introduced us.

October 2012- More follow up appointments.  No glasses or patching for now.  Her eyesight was great considering everything!
What I learned:  It's extremely difficult to keep a 4 year old from jumping around, what office locations I like best and the the cost of this 'eye thing' (and we never had the cost of contacts).

November/December 2012-  Let's begin patching again...4 hours a day. Her glasses are wonderful.  She can't see without them if she's patched.  We ordered her glasses with a bifocal (progressive with the PO's blessing). Her eye sight is solid 20/30!
What I learned: Consistency pays off.  There's still a lot to keep up with this 'eye thing.'

January 2013- Mallory 'lost' her first pair of glasses.  I remember seeing them on her face on Sunday and then it was Tuesday and we can't find them.  We had a rough morning on Monday so there were no glasses or patch.  What she has since told us is she broke them and threw them away so she wouldn't get in trouble.  It's either that or they're in the 20 totes of Christmas Junk. I'll let you know in December.
What I learned: You can't trust a 4 year old and this 'eye thing' gets expensive.

February 2013- Our beloved PO is leaving and moving to Florida.  Mallory's eye is 20/25 and she is seeing equal out of both. Yay!!!  Patching is decreased to 2 hours a day!
What I learned:  Cutting patching time in half was like a vacation.  Saying good-bye to your PO is extremely difficult...she gave my child the gift of sight!

March/April 2013- Everything is status quo.  Keep patching, patching, patching.
What I learned:  This just becomes part of your life- the battles and the triumphs.  It's a journey and our ikids are iwarriors!

May 2013- Follow up with a new PO.  Her eye is exceptional, better than he can be predicted.  Patch for 3 hours instead of two.  Follow up at the year anniversary of her surgery with a new PO.
What I learned: support from fellow iMoms gets through the rough spots. Patching works. Nagging does too.  Bribes too! Eye sight is gift and sometimes we have to really earn that gift!

bully. Update

This update is looong over due and for that apologize.  Emotionally, I haven't been able to process it all and then life just got busy with summer.  So here's an update from the bullying incident at school.

• At Nick's request, his peanut-free table was moved further away from the other tables and closest to the cafeteria monitor's desk.
• The incident was treated as a life-threatening incident.  The child was given a day of in-school suspension. Code of conduct calls for 3 days of out-of-school suspension, but given the age and that if the child was home they would likely be watching tv, a day staring at walls seemed more appropriate. 
• Nick's 504 plan was adapted so he could carry and self-administer his epi-pen and asthma medicine.  Everyone was very accommodating and let me decide what would be best. The pediatrician doesn't usually write self-carry scripts (NY is the only state that doesn't have a self-carry law for epinephrine) for 8 year olds, but felt he was mature enough to handle this.  
• This is the coolest thing of all (of course, I'm probably completely biased). Watch this video.....

 Ironically, this video came out near the time of the incident.  The first time I saw it, I cried.  Ok... I cry every time I watch. The little boy gets me every.time. Could this hit any closer to home? I showed this to Nick and asked him what he thought.  His response,'That's exactly how I feel.'  <insert silent manic here>  Oh my.... he doesn't feel safe at school.  I let him lead the way by prompting him with questions.  Here's what he told me... 'Mom, kids don't get that peanuts are like a loaded gun to me.  They can kill me. (by the way, this is not the cool part of it) I think my friends should see this.'  

 From that statement, we made an action plan and presented it to the principal.  In June, Nick showed 75 of his classmates (his grade level) the video and answered questions for 20 minutes. I can't tell you how proud I am of him.  In those 20 minutes, his confidence grew and his friend's gained a greater appreciation of his allergy.  I was amazed at how insightful and thoughtful 8 year olds are. Nick has asked to talk to the WHOLE school during their anti-bullying assembly at the beginning of the year.   

So... we start school in 4 weeks.  I'm on heightened alert all the time, especially since the death of 13 year old last week after she took one bite from a rice krispie treat.  We've met with the new teacher.  I've been more assertive with my requests about a peanut free classroom and reminders being sent home with holiday party information.  I've signed up for webinars about food allergies and bullying.  I'm on a small mission (as much as time allows) to find out why NY doesn't have a self carry law. And Nick... well, he's pretty resilient.  He just keeps leading the life of an 8 year old boy.