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!

8 months to 8 years

Today, we celebrate this little man's 8th birthday! 

I guess he's not so little anymore. Even though I want him to be. I even bought a candle for his cake. It was a   '6'.  I guess a mom can dream.

It really is a miracle that we have made it 8 years without major mishaps.  Not because he's a boy and a klutz  and does crazy boy things, especially with his cousins. But... because he is allergic to peanuts and has asthma. 

When he was 8 months, I almost killed him.  Looking back it is so much worse than the actual situation. Being ignorant was probably a blessing at the time.  I gave him a bite of peanut butter pie.  He instantly started screaming.  My thought...Hmmm, he must want some yogurt instead. Nope, still crying.  It was then that I noticed the hives around his mouth.  I faintly remembered reading something in the multiple 'how to be a totally awesome mom' books I had scoured over the past year about a peanut reaction.  Ok, so Grandma runs to the store for some Benadryl.  Because really, who has Bendaryl in the house for an 8 month old.  Give it to him and it works.  Yay for me and him!

Off to the pediatrician for a well child visit.  I mention our little mishap and the doctor's eyes became huge. Ummm, okay, so maybe I'm not such an awesome mom.  Her suggestion is to monitor and avoid peanuts.  No big deal, he's like 9 months old, I control everything!  

We are careful and we avoid and I sneak Reeses Peanut Butter Cups when he's napping and then brush my teeth and wash  my hands. Yes, I know, a total closet eater.  

Next reaction was purely accidental.  I filled a bird feeder with peanut butter.  The birds love it.  Nick loved to watch the birds.  I carefully take the spoon in and wash it. Put the peanut butter in the top cupboard where he can't reach it.  Play a little outside and he starts to get spots on his back which I thought was a bug bite and then they spread all over his body.  Hello totally awesome mom, they are hives NOT bug bites.  Another dose of Benadryl, another save!  

Another well child visit and we are pretty certain he's allergic to peanuts.  We do a RAST (a bloodwork test that tests the IgE levels).  His levels are high. He's allergic.  Here's your script for an epi-pen, benadryl, note to avoid peanuts and carry medicine....blah, blah, blah.  Okay, so maybe it didn't go quite like that, but that's what I heard.

Here's what I learned from my own research:  

• it is one of the deadliest allergies
• peanuts are in just about everything... may contain traces of, processed in a facility...
• gatherings such as birthday parties, family picnics will require you to take your own food
• of course he's more likely to have because he has horrible eczema
• be aware of public places... peanut butter can be anyplace

Cue- Totally Freak out Mommy..... This is so not in any manual or mommy the greatest book

Here's what I learned from living in it- You will have to navigate this crazy journey on your own. There  is no one to ask how this has affected them and what works and what doesn't. If your child lives through the day, you rock.  If you have a reaction at some point, you suck. 

One of many necklaces

So for the past eight years, we have survived this allergy thing.  We have lots of medicine.  An epi-pen in the house, one at school, one in his backpack (shhh... don't tell the school... it's way too much paperwork if they know) one at the sitters.  We keep track of them because unlike other meds once the pens expire, they are no good.  Do not use once they expire, they probably won't work. I am the mom at the pharmacy having them check dates and refuse to take them if they don't expire at least a year from the purchase date.  Hello... they cost $325 a pop (thank goodness for insurance).  We carry lots of Benadryl (this comes in handy for lots of other kids too :)) And of course we have inhalers.  EMTs have nothing on our medicine cabinet.  Oh yeah and clorox wipes.... I'm not a germ freak.... I have 3 kids. I'm a "I don't trust that you wiped your toddler's hand after they ate out of the peanut butter jar or had their 3rd peanut butter and jelly sandwich and now wiped it all over the shopping cart' freak.  

Rubber bracelets are cool at this age

I educate, but try to overbear.  I may be lax in my approach, but here's my thought.  I believe Nick needs to live in the real world and despite my mom instinct to protect and not let him grow up, he will.  I cannot follow him around. I educate him. I show him how to advocate for himself.  He knows no other way.  He is unlikely to eat at celebrations because food isn't safe.  It's his choice and I don't try to convince him otherwise. I send safe snacks/food everywhere he goes, but I never force him to eat it.  I show him how to read labels and how to ask people and not be afraid.  I have shown him and his sisters how to use epi-pens.  Keep it as normal as possible is our motto.  It still SUCKS though! Every day he knows he's different. He can't eat at any table in the cafeteria as a precaution.  He can't eat birthday snacks or holiday cookies or cake or most candy.  He has never complained... He rocks.  He may be sad because he can't join in, but never once has he asked 'why me ?'  He has some awesome friends that make sure he has someone to eat with everyday.  And some awesome friends whose moms are awesome too. They call and ask what is safe for him. THANKS to AWESOME MOMS!   And thanks to his AWESOME SISTERS... they totally advocate for him.  

This makes me chuckle

How about outgrowing this?  20% of kiddos do.  He won't. He has eczema, asthma and allergy...the triple threat.  We have done 3 blood tests in 8 years and the levels are off the chart... over 100. I forget what normal level is but it is single digits.  But as allergic as he is to peanuts, we have yet to use the epi-pen (knock on wood)!  

Every day I send him out the door and say a little prayer that he will live a normal life and he still return home safely.  I pray the kids will be nice to him and not tease, not bully (very real worries).  I pray that I will always have the strength to make his peanut allergy as normal as possible and not be a complete Mama Bear.  And I pray I will always keep perspective... this could be so much worse.