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?

Jitters

I'm not sure what is worse the anticipation for eye appointments or the allergist appointments.  I get the pre-appointment jitters for the eye appointments because I don't know what they are going to tell me.  Is the eye still the same? Are her pressures good?  Will we increase or decrease patching time?  Anything could change.  For the allergist appointments, I get the pre-appointment jitters, because NOTHING is going to change. He will ALWAYS be severely allergic to peanuts and he will ALWAYS have asthma.  Allergist appointments are reality in full color. They are the appointments that tell me no matter what I do, I can't make this better or make it go away.
Overall, the appointment went well.  Peanut allergy is the same and we are to continue avoidance of peanuts and all nuts when we are in public.
Asthma is hit or miss.  This beautiful WNY weather is terrible for is asthma.  We are currently using both his  maintenance inhaler and his rescue inhaler.  This will likely continue until June.  At least I now know what are likely triggers for him and what helps.  We will continue with our current treatment and follow up in a year.
Proud mom moment at the visit:  The allergist told Nick he seemed very mature for his age regarding his allergy and asthma.  It's nice to hear.  It's not that I take credit for it,. Nick has had this since he was 8 months old so he knows no other way.   It just reinforces that we are doing something right with educating and trying to teach him responsibility.
While the appointment went well, real life living with a peanut allergy gets harder for me.  We try to do 'normal' things, but as he gets older, it gets harder.  Easter Sunday we decided to stay for brunch at church.  BIG mistake.  The brunch was great, but Nick couldn't eat anything, but fruit.  And at 8, he's just not that satisfied with fruit for breakfast.  There were peanuts/nuts on almost everything and the food that didn't have nuts were sitting next nut filled food.  We graciously at our fruit, excused ourselves and headed off to McDonalds.  So sometimes trying to do normal things, just doesn't work.  I'll keep practicing and by the time he graduates, it will all be normal :)

The EYE has taught me that accessorizing is cool (even for boys). Here's a shout out to two of our favorite 'accessories':

A pencil case from PBTeen (I love that store).  Seriously, this case only cost $3.99 (personalization is $7) and can hold 2 epi-pens, 2 inhalers, a spacer, 4 doses of single dose Benadryl and 4 packets of handi-wipes. It goes where ever we go and can clip onto bags.

Survival straps is our latest Medical ID purchase.  Some argue that it looks too fashionable and can't easily be identified as a Medical Alert bracelet.  I say, whatever he'll wear consistently is much better than the bracelet laying on his dresser.  Survival straps lets you  custom design the bracelet. So, of course, his bracelet is the color of our monster truck.  And the price isn't too bad.

Photo courtesy of Survival Straps.com 

Managing

Eight months into the Eye journey and we are managing. Managing the good days, the bad days and saying good-bye to our trusted PO.

Our good days start off without a fight. She willing chooses which patch to wear and asks for her glasses and then asks for them to be cleaned. She patches and only asks every 5 minutes to take her patch off (unless Doc McStuffins is on).

And sometimes she even poses

Our bad days...oh our bad days. We battle from the beginning.  'No patch in the morning, no patch in the afternoon,' she says. I've learned patching in the morning is easier and gum is a great bribe. But patching in public cannot be bribed and makes for an awful experience for us.

Even waiting for Prince Charming at Chuck E Cheese doesn't help

I've done my best with patching every day, 4 hours a day.  And she's done her best too. Filling her patch chart and getting surprises are awesome motivators.

AND it's paid off. We had an AWESOME visit with our PO. First, we got to hang out in the waiting room with a fellow imom and ikid.  The coolest thing was that they kind of recognized each other... Thank you instagram and #camopatchkids.  Then, Mallory sat in the chair, by herself for the first time. She rocked those eye charts, right down to the 20/25 line... Both eyes are seeing about the same (I did a little happy dance in my head).  Pressure is good in her eye.  We are down to patching 2 hours a day!  Mallory is still adjusting because when I say she can take her patch off, her response is 'Wow, that was speedy quick today, huh, Mom?'

Saying farewell to our amazing PO was...sad.  Mallory colored her another portfolio of pictures for her new office in Orlando.  She answered questions my questions again... Yes, this was a congenital cataract that didn't affect her vision until she was four. Yes, she will patch a little while longer, probably til she is 6. No, she doesn't really recommend transition lenses for her, but her progressive lenses are okay.  I will always be grateful that she didn't kick me out of her office the day I asked her if  she thought she was qualified to do Mallory's cataract surgery.  Ha! If I only knew then.....  Until her follow up appointment in May with her new PO, we will manage.

Making Peace with Asthma

Memorial Day 2006
It started out as a fantastic day. Parades, outdoor play, a healthy  2 year old boy.  By noon, Nick was coughing, by 3 o'clock he was coughing a lot and by 5 o'clock, I was calling the doctor.  I was admittedly naive about asthma so when the nurse was asking questions, I couldn't really answer them.  She finally asked that I put the phone to him so she could listen to him breathe.  By 5:30, I was taking him to the ER.  

This WAS my first rodeo at the ER with my child.  Blood work, breathing treatment, prednisone, x-rays.... exhausting for a mom and her child.  The diagnosis- Asthma.  We were sent home with a handful of scripts and told to follow up with the pediatrician.  While signing the discharge papers, I was told that the prednisone may make him irritable and/or make him hyper.  That might have been the understatement of the century, kind of like when the doctor says you might feel a "little pinch."  He was fun at first on the medicine, wired, but fun.

For the past 7 years, we've been figuring out/managing his asthma.  At first, I  admit, I wasn't consistent with his medications.  I let coughs go untreated for too long.  I let symptoms go unnoticed hoping the asthma would go away.  It hasn't.  So now I'm making peace with it.  Remember-Breathing...Good.  Asthma flair up....not so much.

So here's what I've learned over the past 7 years (primarily through trial and error and sometimes epic fails):

• Asthma is quick to worsen. If I don't act quickly with his albuterol, we will be at the ER within in a day
• His maintenance inhaler is a must.
• I have a love/hate relationship with Prednisone. Five days of extreme irritability is almost too much to handle. 
• A simple cough will send me into mommy-panic-mode.
• Everyone has an opinion on steroid use. Here's my take on it- good breathing is a beautiful sound and if takes steroids to get us to that point, I'm all in.
• Extreme cold to extreme warm is great for our mood but, the devil for his asthma.  It almost guarantees some sort of intervention.
• My copay and 30 minute commute to the doctor's office for them to say 'Nope, he's fine. It's just a virus.' is worth every minute and every penny.
• Nick will hate every morning reminder to take his inhaler.
• He will also learn to use asthma as an excuse when he loses a race against his sister.    

Something is working though.... We have not had any ER visits in almost 2 years.  Yay! I recently started using a simple Peak Flow Meter for him.  He averages about 150 on what I call 'a good lung day' (average for a kid his age is 220, I think).  It's just another tool for me to tell how well he is doing.  If he falls below a certain number, we up his inhaler.  We follow up with the allergist annually and his pediatrician every 6 months and revamp his Asthma Action Plan.

Daily we work together to make peace with asthma.  What means for him and what it doesn't.  It just another thing we incorporate into our crazy, normal life.  

The 3rd weekend in January

The 3rd weekend in January.

A weekend for 9 years represents grief.  

Feelings so raw

Reliving them each year

The 3rd weekend in January 2004

I lost a friend 

I lost our first child

11 weeks in and no heartbeat

3 years of trying to conceive

And it was not be 

The 3rd weekend in January

Remembering the devastation

Remembering the depression, the bargaining, the whys, the tears

The 3rd weekend in January 2012

My sister's first birthday she wouldn't celebrate

She would've been 40

The 3rd weekend in January 

It is not my friend

No matter the year

Big stuff, small stuff

It really isn't filled with good stuff

The 3rd weekend in January 

Revealing the power of HOPE

HOPE for a better tomorrow (or several tomorrows later)

Knowledge in my deepest sorrows 

There was HOPE for brighter days

Looking Back at 2012

Welcome to 2013!
I have huge plans for 2013, but I think it's only fair to look back at 2012. To review, to reflect. Where I've been, what I've done and what I've accomplished.  In my rush to move forward and conquer 'stuff' (patching, eczema, asthma, being a good mom, finding 'me' time and the like), I often forget how far I've/we've come in just a year.  Here it is- My 2012 year in review, in no particular order:

• Nick and Delaney get glasses :0)
• Mallory is evaluated for speech therapy after discussing with pediatrician and finally making a self-referral.  It's determined she is about 2 years behind in certain areas and will therefore have 30 minutes of speech therapy twice a week.  I took a deep breath when I heard 'you know we have to classify your child as a child with special needs now.'  
• It's Baseball time- Nick's first year on mechanical pitch

• It's Dance time- Delaney's 3rd year and Mallory's 1st year

My niece, Mallory and Delaney

• It's soccer time- Nick and Delaney both wanted to play and somehow I agreed to coach.  Not really my area of expertise, but I survived and the kids had fun.  This is what I learned coaching 5 & 6 year olds-  Make sure everyone gets to play and have a really good snack at the end :)

Mallory is too young to play, but always supportive

• Mallory 'graduates' from Hope Lutheran Nursery School

• A first (and probably only) Buffalo Bison baseball game. It was stressful for mom, but Nick had a great time.  I'm positive I had more medicine and Clorox wipes than any paramedic there. 

• Mallory is diagnosed with a cataract- HUGE deal for 2012.  Discovered by her pediatrician and confirmed by the PO. Our first plan was to patch for 2 hours, wear her glasses and follow up in 2 months. 

• Mallory has cataract surgery and IOL implant.  She made the surgery so much easier.  Only a few tears fell from her eyes before she willingly went with the nurses and doctor with her bear that the PO patched too :)  I met an amazing mom who introduced me to the world of blogging and other imoms. I will be forever grateful. 

• Peanut allergy is here to stay, along with asthma and eczema.   Nick was retested (we do this about every 2 years). His levels are high, like off the charts high.  This means he's at a greater risk of an anaphylaxis reaction when exposed to peanuts.  

• All 3 kids are baptized! Finally....

• In June, it was a year since my oldest sister died from a heart attack.  We celebrated her life by letting go Chinese Lanterns.  A very cool sight (and very sad)!

• A family trip to Black Lake.  This was our first family vacation with my husband's brothers and their families.  We had a great time boating, fishing, eating and laughing. It makes me wonder why it took 15+ years to spend a weekend together.  
• A visit from brother and his family who live in Colorado. LOVE these visits when ALL the cousins are together.

• Everyone goes to school <insert a few tears>.  Nick is in 2nd, Delaney is in 1st and Mallory started Pre-K.  

• Christmas- always a fun, crazy time

Cousins- impatiently waiting to tear into those gifts

It was a busy, challenging, and fun year! Here's to the same for 2013!

6 months... and counting

Finally! The eye update from December. I have lots of excuses why I didn't update earlier, but none of them are new to anyone who is human this time of year.  So not only will you get this update, there may be lots of posts during the next month :)

So... Mallory had her doctor appointment December 17th.  It's been 6 months since we started this EYE journey! All went well and that is it... Ha!... As if.  My fellow iMoms know that this isn't true.

Really, though, everything went as expected.  Everything is looking good for Mallory.  Her eyesight in her left   eye is a solid 20/30.  We were really hoping for 20/25 so we could reduce, possibly eliminate patch time, but it was wishful thinking.  We have graduated to letters instead of pictures for her exam.  I know she is 4 and for the most part, she knows all her letters, but, honestly, I didn't want to make the eye exam more of challenge so we stuck with the pictures.  Miss Smarty Pants (aka Bossy Pants) did well.  She hasn't quite graduated to sitting in the chair by herself, but she is more confident when we go in and doesn't argue when asked to do different things.  Progress!  It didn't even cost me a trip to Build-A-Bear.

This is what 'perceived control'  looks like

Here's our plan for now... Continue with patching four hours a day and follow up at the end of February.  Completely manageable.  We ordered more patches (camo ones included, just for our camopatchkids Sundays) and more reward charts.  She picks them out along with the prize when the chart is completed (50 patches).  I currently own half of the Build-A-Bear workshop (and half a liquor store. Mommy needs rewards too). I prefer to call this positive reinforcement instead of bribe. We have had fewer days of tears and fights during the past 2 months. Like everything else, some days are better than others.  What I have learned with a 4 year old and patching- As long as she perceives she has control over the patch and the time she wears the patch, then all is well.

One of our camopatchkids Sundays

And finally, we received our bombshell.  The Doctor is leaving (yep, the same doctor as Easton's).  Our next appointment will be our last with her.  Everything Amanda felt/feels, I am feeling the same.  Six months, two years.. I don't think it matters with this PO.  She has the ability to make a connection with her patients. I think Mallory is taking this harder than I am.  She thinks we can go to Florida to see her (and Mickey and the Princesses) because of course the Doctor said to come visit her.  And, of course, she only likes to see
'girl doctors'.  Every appointment she takes in a 'portfolio' of her last artwork.  For Christmas,  she wanted to give her a screwdriver and tape (who knows why those two things). We opted for a more practical gift (caffeine).  I will be forever grateful for her quick approach with Mallory's eye.  Florida will be gaining a truly gifted PO.

So, here's to 2013.  Changes, challenges and choices!