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.  

Patches and Pennies

First, my apologies.  I'm so far behind in the blogging world.  I want to write and catch up, but then life happens and it doesn't get done.  I have 4 posts started, but none I have completed (soon, I hope).

Summer started and is almost over.  I lose track of time, days and it appears even months.  I am convinced that summer (this one especially) is the time of year that reveals to me how much I stink at parenting.  My lack of consistency, my shouting  overzealous talking to the kids, my lack of time management and structured activities... whew it's just been own of those summers.  Let's add to the mix the battle my 5 year old gives me every.single.day. about patching and wearing her glasses.

Sharpie tie dye shirts... excellent craft project! 1.5 hours of no fighting!
Yes... I did the happy dance afterward. 

Patching Wars from a 5 year old look a little like this.  We can't patch in public. We can't patch when the speech therapist is there.  We can't patch when Nick's tutor is there.  We can't patch at church, the grocery store, when friends come over, when we go to friends.  Basically, we can't patch!

However, I try to remain consistent with patching (it's one of things I really strive for).  It may not always be 3 hours full hours, but I usually can get to 2 1/2 hours.  She hides her face. Tries to peel off a corner and continuously asks if she can take her patch off for the entire time.... AAAHHHHH!

And not only does she fight the patch, but it's the glasses as well.  She wears them like a champ the entire time she's patching. She can't see otherwise, but as soon as the patch is off, the glasses are too! I'm a broken record... 'Glasses belong on your face. Where are your glasses, Mallory?, We are not leaving the house until you find your glasses and put them on.'  Every day. All day.

So here's my grand idea (we started it today):

The Beginning...

She gets two bag of coins (10 in each)- one for patching and one for glasses.  We started with dimes and I'm hoping to work my way down to pennies (I'm going to go broke soon).   Each time she asks about her patch, she has to give me back a dime.  Each time I have to tell/ask about her glasses she has to give me a dime.  Any money she has left at the end of the day is hers to keep.  Each day, we'll start with a new bag of coins. My hope is she feels she has control over her patch and glasses and can see she is earning something as well.  I mean, honestly, I go to work everyday because I'm pretty certain I'll get a paycheck at the end of the week :) I'll keep you posted on our progress.  

EYEceptional

It's an EYE update post :)

Mallory had another follow up eye appointment on Wednesday.  Jitters always accompany these appointments.  Like my fellow imoms have said, the worry starts about a week ahead and doesn't stop until we get done with the appointment and schedule the next appointment.  This time the worry wasn't completely focused on the eye. It was our first appointment with a new PO.  Yikes!  Mallory doesn't adjust well to change.   She was just starting to sit in the chair by herself when our amazing PO took another job.  (It might have had something to do with the oodles of money I spent at Build-A-Bear the last year positively reinforcing (aka bribing) good behavior at her appointments... or not).   Our new PO was good, different approach, different manner, but good.  He was concise and a no nonsense kind of guy. I could have guessed that when we were at the office for only 30 minutes.... No joke!

Here's what he told us:

• Mallory's eye is doing exceptionally well, better than he we would have predicted based on the notes in her chart.
• Pressures are good.  
• We can start spacing her appointments out more.  We don't have to return for 4 months! (that makes a little nervous. I like the reassurance)
• Continue to patch. He suggested 3 hours.  Mallory looked at him and said, 'How 'bout zero hours?' (Nice impression we gave the doctor.)  He told me it was up to me if I wanted to increase the time as we currently do 2 hours.  His minimum is 3 hours and if it were his child he would patch 3 hours. So.... really, it's not my decision.  How can I hear THAT and not have her patch 3 hours???
• Next appointment is with a new PO, the replacement for our old PO. He specializes in children under 1 with cataracts and glaucoma.  

And we celebrated a Birthday!

And despite her shenanigans, Mallory was pretty good at the appointment too!  It didn't even cost me a trip to Build-A-Bear, just a new pair of glasses..Ha!  

Dear Prednisone....

Dear Prednisone,

First, let me start by saying thank you.  Thank you for coming to our rescue each time my child can't breathe. You truly are an amazing little pill.  You allow me to be able to sleep at night! Because of you, I don't have to lay for hours listening to make sure he is breathing.  I will always be incredibly grateful.

HOWEVER, I am little disappointed of your dictatorship around my house.  The dependency I have on you irritates me and apparently my a child as well. YOU control my house for 5 (5 really, really loooong days).  My child has packed his bags to move out of the house more times than I can count. Not to mention the suitcase of food he has decided he needs to have with him at all times.  He demands the tv, more wood on the fire because he cold.  He climbs the walls, literally... well at the least the stone fireplace which, in turn, makes his sisters think they can too.  The two year old tantrums that are thrown more times than a bouncy ball off the wall to see if he can hit his sisters in head... yeah, I'm so done with those too.

Here's what I propose:

• Make your liquid partner taste amazing. I've smelled you before (I can't bring myself to taste you, even for the sake of my child.)  The cherry scented liquid doesn't quite cover up the cow manure smell.  Neither does it cover up the horrible taste judging from the chocolate chaser and glass of milk I have to have ready when giving a dose.  HELLO~ Bubblegum is an amazing flavor for little kids.  They will love you just for the taste.  
• Create a sense of AWESOMENESS in my child.  I will allow you to dictate my house forEVER if you can do just this one thing.  Parents everywhere will be demanding you.  Side Effects:  May cause a sense of awesomeness in your child, not irritability, increased appetite, just plain awesomeness.
• If you can't manage the above, please offer a complimentary supply of Xanax, Valium, Klonopin or a bottle of wine with each prescription.  Really, for what you put us through, us moms should be happy for a portion of those 5 days. Don't you think?

Sincerely,
Steroid -Crazed Mothers
(who have secretly built their own tree house to hide in and consume a beverage (or beverages) of  her choice)

bully.

I've started this post so many times and deleted it just as many.  I'm not really sure where to begin or where to end.  I thought I would have a few years before I would ever have to write about this.  But not so. I guess the easiest way is to start from the beginning. To process it from the beginning. And maybe, just maybe, I'll find my way to the end.

Friday I received a call from the school. My heart always skips a beat when that number shows up.
Me: Hello? (In my meekest, most uncertain voice. The one I always answer with when it's the school calling)
Principal: Hi Heather. It's Tiffany.  First, I just want you to know I have the situation under control.
Me: Ummm. (A variety of things are running through my mind.  They never say that. They always say "Don't    worry. Nothing is wrong')
Principal: We had situation in the cafeteria.  A boy tried to wipe peanut butter on your son's face.  He is fine. He wasn't touched.  I'm handling the situation now, but wanted you to know.

I'm not really sure what was said after that.  I tuned it out.  One of my biggest fears has become reality.  My son was bullied.  An act, a ridiculous, thoughtless act, by a 7 year old put my son's life at risk.  I'm absolutely furious at everyone, at no one.  I want to find out who the child is, talk (maybe not so quietly with the parents) and demand why! Why would you think this was funny? I was already headed to the school for an assembly. Timing couldn't have been better.

I saw my son at school at the assembly.  I wanted to cry when I saw that he was okay. Laughing with friends. He didn't mention the incident.  Good.  It isn't affecting his day. I scoped out all the kids in his class wondering who the little bully was.  Talk about checking your emotions.   I met with the family social worker at school briefly.  I needed to time to process it before I met with the principal.  I had to find the middle of the road between hysterical mom and accommodating mom.  I needed time to tuck the tears away for later that day (maybe over a glass or two of wine).

Here's what I know.  Nick was at his peanut free table when this boy purposely took his fingers, wiped them in his packet of peanut butter he brought for lunch, walked over to Nick and waved them in his face trying to touch him.  Nick immediately backed away and told the monitor.  Kudos to him... My preaching (nagging) has paid off.

The principal was very sincere and understanding.  They are treating this has a bullying/life threatening/harassment act.  The boy will be suspended.  Is this enough? I don't know.  Can I send Nick school without panicking? I don't know.  She asks,'What more do you want me to do?' I Don't Know!  I tell her I need the weekend to think, to process.  I need to talk with Nick and see what he wants.  We'll meet again on Monday.  She assures me she will do whatever needs to be done so Nick feels safe at school.

Here's what I'm feeling now:
Furious~ I'm angry that I even have to deal with this. I'm angry that there are mean people in the world.  I'm angry that unless you're an allergy mom or 'have a child with some sort of special needs' mom... you just don't get it.  You don't get that I live my life in the extreme, the worst case scenario.  You say I'm over protective, maybe a little neurotic.  I'm angry that now I will be a little more neurotic.  I'm angry that I will now have to find the middle road between being hysterical mom and accommodating mom.

Sad~ Sad that Nick will always have fear of going to school now.  Sad that a 7 year old felt the need to be funny and just 'didn't get it.' Sad that Nick will always be singled out because of his allergy.  Sad that I will always worry that Nick won't come home.

Motivated~ Motivated to make a change.  Motivated to help others understand the severity of food allergies.    Motivated to help incorporate food allergies (along with diabetes, etc) more into anti-bullying campaigns, teacher orientations, student orientations.

Overwhelmed~ Overwhelmed with all of it, with all the emotions and all the worry.

Here's my plan (for now) 
First, we praised Nick for doing the right thing and telling a teacher.  I asked Nick how he felt about it.  He says he's 'kind of' afraid to go to school now (my heart just broke a little more).  Reassuring him that it's mine, his dad's and the schools job to make sure he's safe, I asked what we could do.  He wants the student to be moved to a table far away from him and he wants the tables surrounding his to be moved further away because other kids eating peanuts make him nervous.  Pretty good plan for an 8 year old, don't you think?  (I was going to ask the child be removed from Nick's class and not be able to eat in the lunch room, possibly pay a visit to his home. I'm kidding about the last one. I think I'll stick with his very appropriate 8 year old version instead. You can learn a lot from children :)
I'll request these for him and also request that he be able to carry his medicine with him at all times.  I can't control everyone or even the environment, but I can make sure he has quick access to medicine should he need it.  I'll make a bigger deal about his allergy. If I make a bigger deal out of his allergy, maybe they will understand they seriousness of his allergy.

I'm not sure where to end this or if there will be an end in this.  Perhaps it's the beginning of bigger, better things for us and peanut allergy awareness.  Or perhaps it's the beginning of the end of my sanity.

Be strong, Mom!

First, I have to give credit where credit is do. This post is inspired by another iMom. You can read her experience here. I was so intrigued by her post on Instagram that I had to try it for myself.

When she says it packs a punch... it sure does, like a sucker punch. I've always counted my blessings knowing Mallory was fortunate to have had eyesight before the cataract. We avoided the contacts, the drops and the multiple patches a day drama (and a lot of tears).  So here's my imom confession: Because I know how fortunate we are in this journey, I often give Mallory a hard time for giving me a hard time. Honestly, she patches for 2 hours a day! No drops, no contacts.  Stick it on, play with play-doh, watch Doc McStuffiins, drive mom crazy with 'Can I take it off now?'  How hard could this really be? (I can hear your gasps of shock by this unsympathetic imom confession. I didn't say I was proud of it)

Here's my other iMom confession: I GET IT! I (almost) totally get why this is hard, really hard, even for just 2 hours a day. And here's why:

Day 1
I decided to try this out late in the morning.  I was heading to school for Together Time with Mallory and thought it would be a perfect opportunity.  She gave me a hard time at first, but then thought is was pretty neat she could pick out the patch for me to 'wear.'  Off to school we went.   She went to class and I went about my duties of PTA mom and epi-imom, stopping to talk with teachers, secretaries, the nurse. Several times people would glance at the patch on my hand, but only once did someone say something.  'Hey nice band-aid.'  I left it at that. Next stop was Mallory's room. At first, she was embarrassed by me having it on my hand, but then she forgot about.  And guess what- NOT one child or parent mentioned anything about it.  Nothing. I saw a few glances and was mentally  preparing my answers to their questions, but no questions were asked. Interesting.
Mallory took the patch off for me that night and as she's carefully peeling it away from skin she says 'Be strong, Mom.  This doesn't hurt.' She then placed it on her patching chart.  I felt like I earned a gold star for the day.

Day 2
I did this the following day because it was a day I worked.  My job is in mental health and requires me to be in people's home.  I wanted to see if their responses would be different.  And they were.   No one was afraid to ask about the patch.  Many commented on my nice band-aid or asked if I had some kind of procedure done.  I spent 8 hours sharing Mallory's story, our story.  And you know what, there were times I became self-conscious.  I would use my coat sleeve to cover it up if I thought someone was noticing it.  I didn't want to answer any more questions, I didn't want anyone noticing it me.  I didn't want to be different. I didn't want the patch on anymore. It was annoying. It was pulling.  I wanted it off.  But then, in the back of my mind, I heard this little voice say, 'Be strong, Mom.'  So I soldiered on and proudly displayed my patch, shared our story.

Blog after blog I read how amazing how ikids are and that they are iwarriors and they totally are.  Every day Mallory gets up and puts her patch and glasses on and lives life through the sight of one eye for two hours.  Every day, for two hours, she knows she's different. Every day we, as iMoms, know our kids are different, and we are making a difference in the life of our ikids.  We barter. We argue. We cry. We console.  Every day we soldier on.  Every. day.  If our amazing little ikids can do this then so can we! In the words from my four year old....

Be strong, iMoms! Be strong!

I have an honorary spot on the patching chart .Wonder if I'll get a reward too?