Asthma or Anxiety?

'Mom, I can't breathe.'  'Mom, it's hard for me to breathe.'  'Mom, I'm not kidding.'  This is what I heard for 3 hours Friday morning.  Nick was in school, trying to stay in class, but went to see the nurse 4 times. Yes, 4 times in 3 hours. Nick is asthmatic so this is not unusual.  What is unusual is there were none of the normal triggers present (dramatic changes in the weather, illness).   On the 4th visit, I called the peds and got an appointment later in the day and sent him back to class.

At lunch time, I met him at the cafeteria.  He was uncomfortable with his table.  The first day of lunch he had a peanut-free table, but was to share the table with another class.  He was worried the other students would have peanut butter.  He shared this within in minutes of getting home.  I immediately sent an email to the teacher and principal and asked to meet to correct this.  Within minutes, I had a response from the principal (our school is pretty amazing when dealing with his food allergy).  His table will be changed.  I met Nick at the cafeteria.  He now has a table that is strictly for his class and is peanut-free.  It is moved away from the other tables to eliminate the risk of contact with peanut products (Nick is contact allergic).  As soon as the table situation was handled, Nick became his outgoing self again. I watched him interact with peers and advocate for himself telling each peer that they were welcome to sit with him if they didn't have peanut butter.

After lunch, it was off to the doctor's office.  He hadn't complained of trouble breathing since lunch, but I didn't want to take any chances.  ***Not-so-much Mom of the Year Moment*** I once made him wait to go to the doctor because I thought he was just trying to get out of school when in fact he had pneumonia***  Needless to say, I don't wait anymore.  He was given a clean bill of health....

Hmmm.... we talked on the way home about feelings of nervousness and difficulty breathing and how they kind  of feel the same.  He finally told me he was just feeling really, really nervous about his lunch table.  Since our bullying incident in May, Nick has had a greater awareness of his food allergy, but apparently along with the awareness has come anxiety.

We are now in the process of trying to identify a professional to help him with his anxiety about his food allergy and how to tell if it's anxiety or asthma.  Just one more step in this journey.

First Day of School... Hoping it ends this way too!

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?

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!