Set Back

Good evening!  It's been a tough week!   Some weeks are more taxing and emotional than others.  Thank God it's Friday!

Joe had a dermatology appointment Monday, and it didn't go as well as I had hoped.  We just got back into town from my dad's house, and Joe didn't have a bath for 3 days.  That a BIG mistake on my part.  My dad has an old claw tub with scratches and Joe refused to get in the tub.  Yes, I'm the mom and should of made him take a bath.  But I didn't want to fight that battle, lesson learned.

We went to light therapy on Wednesday and Joe jumped inside the chamber like a champ.  He is up to 2 minutes and 40 seconds.  I didn't have to count him down, I just stood there with a goofy smile on my face.  The nurse high-fived me!  I got him dressed and a way we went.  Easy peasy!

Well Thursday came and I was getting him dressed.  He had huge blister welts on his chest, back, and all over his arms.  Not to mention his forehead was crusted over with irritated and dry skin.  I took him to light therapy, the nurse didn't feel comfortable letting him take his treatment.  I called his dermatologist and took him to the Children's close to home.  The only thing that I did differently from Wednesday to Thursday is I gave him 2 claritin (doctors orders) and have him a bleach bath.  Joe has had several bleach baths in the past.  But I didn't put the usual amount of water in the tub, because Joe was crying.  I was racking my brain trying to understand what happened.  Because a the week before his skin was cleared up.  Have I mentioned I HATE eczema?!  The doctor took some cultures and prescribed him an antibiotic.  I am still waiting for the results of the cultures.  The doctor told me he was pretty sure the extra claritin didn't cause the flare up, and neither did the bleach.  I'm still not so sure with his answer.

His chest on Thursday, I didn't post a picture of his forehead  because it looked too bad to share.

Last night I had Joe take a long bath complete with a hair wash.  I swear if you could of heard the screaming from my bathroom you would of called in reinforcements.  That boy hates having his hair washed.  I greased him up with his skin medicines, Cerave, and coconut oil.  I also did wet wraps on his arms and around his forehead.  Joe and I camped downstairs on the couch.  He fell asleep quickly and slept all night.

When his skin flares up, he becomes so aware of himself.  He thinks he did something wrong to cause the itching.  He always says, "he should never of itched as a baby".  Talk about heart breaking! But I reassure him it won't always be like this.  We do believe in healing and yes we pray for Joe's healing everyday!

He woke up today and his skin is improving.

Wet wrap, he's still so stinkin' cute!

Sleeping and feeling relaxed

Have a great weekend with your tribe!

xoxo,

Jen

Day 4 and Day 5

Good evening!  Well it seems like forever since I last put my thoughts down on the computer.  Summer time is so refreshing!  I took the boys to visit my dad last week.  They had a blast.  With that being said, we skipped light therapy altogether.  The mom guilt was weighing on me big time.  But we are back in the saddle this week.

Day 4:

The ride to therapy was easy peasy yesterday!  No crying, no whining, just a girl with her kids, blasting the radio and AC.  It was magical!  Ok maybe not magical, but it was nice.  We waited about 40 minutes in the waiting room.  I had a conversation with myself during the wait,  I could get mad because my time was being wasted or I could suck it up and enjoy watching Chip and Joanna while we waited.  So I let out a sigh and slapped a smile on my face and pretended I was the one getting the fixer upper house, LOL!

Our usual nurse had the day off, how dare she!  She's my moral support as my 5 year old rages and cries while we shove him into light therapy.  Something different happened yesterday, Joe got undressed, no crying.  We called the nurse to tell her we were ready, no crying.  She showed Joe how to turn on the fan himself, no crying.  He walked into the light chamber without needing 100 hugs and kisses, he didn't need any reassurance, and still no crying.  I was so excited!  He still wanted me to count him down.  He's up to 2 minutes and 23 seconds.  I got him dressed and off we went.  Yes we stopped at the dollar store and got a couple rewards.  How could I not?  He was so proud of himself and he couldn't wait to get home and share this news with his dad.  Later on, that night he told me he liked light therapy because it makes his skin feel good.

Day 5:

 I always heard girls were picky about clothes, well so is Joe.  At least he has a good reason.  I have a friend who gave me a bunch of summer clothes.  Her son only wears the best, Nike, Jordan, brands like that.  Most of the clothes are dry fit.  Joe complains it bothers him.  It's frustrating that my cute son has super cool clothes and he refuses to wear them!  I'm hoping with these treatments he will soon be okay with wearing them.

I thought yesterday's ride to therapy was good.  Well today, Joe fell asleep on the way there.  To be honest, it took all I could today to get him there.  I know the result is worth it, but the process to get him there is a bit much sometimes.  We got a great parking spot.

Thankfully we only waited 15 minutes today.  Joe and Leighton were on their best behavior.  Our usual nurse didn't greet us again.  I'm thinking were in the heck is this chick?!  It turns out she went on a coffee run.  She came in later to catch up.

I got Joe creamed up and undressed and ready to go.  Leighton pushed the call button for the nurse.  She let Joe turn on the fan.  He put on his googles, walked into the chamber and the door shut.  Guess what?  NO TEARS!  Instead, today he was dancing, doing the robot, and he bent down and touched his toes.  I only counted down when he had 10 seconds on the clock.  SWEET VICTORY!  We got dressed and danced right out of the doctors office.

I know it doesn't sound like much to many, but I celebrate every victory!  Dealing with eczema has been a relentless battle.  But guess what?  We're winning!  We go next Monday to see his dermatologist and I'm elated to see her.  I can't wait for her to see Joe's improvements.

Here are a couple pics of Joe from today:

Joe is so happy with his cheeks!  He loves to fill them and loves to talk about how smooth they are.  They  used to be red, swollen, and full of broken skin.  

I just cut his nails, but the bends in his arms used to be very red and raw.

His neck used to be raw and he had a lot of open spots.

I hope you're having a great week!  

xoxo,

Jen

Monday, Monday!

Good afternoon family and friends! I want to take the time and thank each and everyone of you who has read my blog and who has reached out to me.  You're support means everything!  I'm truly blessed and humbled by the responses I've received.

I wish I was the type of person who wakes up on Mondays and shrieks with pure delight!  BUT...I'm not!  It's ok, I'm learning to embrace my flaws and short comings.  Tyler is off to basketball camp.  The head coach is an amazing character!  He truly has a gift, he's able to pull out his students talents and abilities.  My day isn't very structured today, and for that I'm grateful.  I usually like to jam pack my days full of duties and obligations and to my own demise cause unnecessary stress and gray hair.

As I sit here in front of the computer, I hear my two younger kids playing Xbox and yelling back an forth.  Sometimes I turn a deaf ear to the crazy and drift off into my own world.  Come on, I'm not the only one who does that, right?!  Oh the joys of motherhood!  I tell you, there should be an information class people have to take before they become parents.  Motherhood is awesome but MAN it can be TOUGH!  But that's a topic for another day.

I know a lot of my friends like to do laundry and I am giving you a standing ovation as I type these words!  But I loathe it, despise it, I would rather be doing anything other than laundry!  Are you wondering why I'm blabbing away about laundry?  Because it's taunting me in the back of my mind to get my crap together!  When I sat down at my computer to write, I thought I should be tackling the beast I like to call laundry.  Today is the day I will put my mountain of clean clothes away.  Today will be the day I match all my socks up!  I'll keep you informed if I finish my task, but don't hold your breath, I'd hate for you to pass out because of me!

Day 3 of Light Therapy:

Before I tell you about today's adventure I want to tell you what happened over the weekend.  My best friend's daughter had a birthday party on Saturday.  It was at this charming gymnastics place, it wasn't air conditioned.  When I walked into the festivities I felt the humidity instantly.  I thought oh great, we're going to have to leave within minutes because Joe doesn't tolerate heat very well.  When it's hot he itches.  Then it turns into a 30 minute ordeal of Brian and I trying to make him comfortable.  He darted off to play with the kids, they were jumping, tumbling, and hanging all over the place.  They were having a blast!  I felt like I was holding my breath just waiting for the itching to start.  But guess what?  He didn't itch one time while he was out there playing.  These kids were playing hard too!  Play time lasted an hour of non stop playing.  Can you say SWEET VICTORY!  

Today on the way to his doctor's appointment was pretty enjoyable, no tears were shed.  We waited a good 40 minutes to be seen.  I hate that these treatments aren't scheduled based.  But whatever, it's part of the process, right?  There was a lady ahead of us and her entire body was splotchy.  We began talking and she's been coming for light therapy for several months and she says her skin has improved greatly.  That was so encouraging to hear.  The nurse called us back, and this time the struggle seemed a little less.  I was able to get him undressed and greased up before the tears started.  We hugged each other at least 10 times, and gave a million kisses.  As the nurse was closing the door Joe was cry yelling that he loved me and was going to miss me.  Bless his heart!  They upped his therapy time from 2 minutes to 2 minutes and 20 seconds.  I stood there looking into the little window of the chamber and loudly counted down the time.  Before we knew it, the time was up and we were getting dressed.  It was easier to calm him down today.  He came out of the chamber pretty itchy so that part took until we got home to stop.  Thankfully we only have to go back one more time this week.  Because we are planning on going to a water park this week and will be outside all day.  

Well I hope you have a great start to your week!  

xoxox,

Jen 

Why I Write

Hello, my name is Jen.  I am a realist, and glass half full kind of gal.  I always root for the under dog and still want to believe in happily ever afters.  My life is an open book, filled with  laughter, pain, mistakes and love.  I am a wife to a wonderful man, we celebrate 18 years of marriage next week.  I have 4 beautiful children.  Tyler is our oldest, he's an athletic preteen, Leighton is our 10 year old scientist, Addison is our 6 year old who is waiting for us in Heaven, and lastly Joe he's my 5 year old bonus package.  I recently have become a dog person because of our puppy, Penny!

The reason I wanted to start this blog because I needed an outlet.  I am a believer that when you go through something it's only to help others.  I am by no means a self proclaimed writer, nor do I profess to have all the answers.  I believe that success is not in the destination but rather the journey.  I would like to share with you our bumps and success in our journey.

My youngest was diagnosed with severe eczema, asthma, food and environmental allergies.  The past 5 years has been a tough road.  Yes, having children is a blessing and I am grateful for mine.  As a parent I want the best for my kids, and to protect them, and keep them from anything that causes pain or discomfort.  The most horrific feeling is when your child is in pain and you are helpless.  I've spent countless nights awake trying to figure out a way to help Joe.  I've spent hours upon hours surfing the web trying to find him relief.  I've read many books, and have been to several doctors.

Thankfully we have a pretty good handle on his diet.  Joe is gluten, milk, egg, goat milk, tree nut, peanut, rye, and barley free.  Our family has adjusted our diets according to what Joe can eat.  For example, I make gluten free pasta, tomato sauce and ground beef for everyone.  I'll make a salad with dairy cheese and dressing on the side.  And make garlic bread for the the rest of the family.  I will expand more about his diet in another passage.

The asthma is pretty well controlled.  He has spent a couple times in the ICU because of it.  His biggest triggers are when he gets a cold.  Again, we can chat about that later.

Recently, his eczema has been out of control.  The dermatologist wanted to put him on a drug called methotrexate.  This drug controls rheumatoid arthritis and is a chemo pill for cancer patients.  I couldn't believe my doctor became upset with me when I declined the treatment!  All I kept imagining was my little boy in his tiny body receiving such a powerful scary drug.  If you have used this drug I am not condemning you, please don't think that.

After declining the methotrexate drug his doctor talked to me about light therapy.  Light therapy simply put is the good UVB rays from the sun.  How does it help?  It helps reduce inflammation in the skin.  It looks like a tanning bed that you walk into and has a door.  You are only inside the chamber for seconds or minutes depending on your skin color.  Since Joe is darker complected he was started out at 2 minutes.  They say it takes 10-30 treatments to see results.  We are committed to 12 weeks.

Day 1 of Light Therapy:

Light therapy is a tremendous time commitment.  You have to commit to two or three days a week to go to therapy.  We live about 25 minutes away from the doctors office, and their parking is crappy.  However, the nurse that helps us is very patient and helpful.  I would love to tell you that all went well on our first visit. BUT...I don't like to fib!  Our first appoint we waited an hour to be seen.  Now an adult is capable of waiting an hour, Joe's 5!  Thankfully he was pretty reserved during our wait, but I on the other had was like a caged lion.  When it was our turn the nurse quickly defused my annoyance for them running behind schedule.

We get back to the tiny room, with this huge chamber that looked pretty intimidating.  The process to get into start the light therapy is to under dress to your skibbies, and put on a pair of  protective googles.  I also lathered him up with coconut oil.  Then next several moments took my breath away, because he's so small and those light bulbs were huge!  He began crying and screaming.  I did my best to keep my composure.  Tho, he was only in there for 2 minutes it seemed longer.  It was pretty warm in that room, and they turned a fan on for Joe, but the noise made him pretty unsettled.  The nurse calmed him down and gave him stickers.  I assured him we were trying to make the itchiness to go away. Here are a couple before pictures.

Day 2 of Light Therapy:

It was a tough morning getting Joe to the doctor.  Leighton rode along with us, I thought having a big brother tag along would help ease the scariness.  This visit we didn't wait long to be seen.  It quickly became a war zone back in that little room.  Poor Joe looked at me and said "I love you, please don't make me go in there"  Talk about breaking my heart!  After a few minutes we got him to go in, and he cried the whole two minutes.  I promised him a toy for his braveness at the end of each week.  So after the doctor's appointment off to Target we went!  Don't judge me, everyone likes retail therapy.
Our next appointment is Monday.  They told me it would take about 10 treatments to see results, but his skin is starting to soften up already!  I am also a believer that with God all things are possible!

I hope you all are having a great weekend!  I will update you later on next week about our treatments.

Thanks for reading!

xoxo,
Jen