Friday, December 7, 2012

Family Photos

My sister Amy was kind enough to give us the gift of a family photo session when Eddie was finished chemotherapy.  These pictures were taken on November 17th, roughly 2 months after his last treatment, and his hair is definitely growing back, however very thin and blonde!  Our wonderful  photographer was Denise Feagans and she works out of Louisa, VA.  She is a mother of five children herself, while managing to take precious family moments and turning them into beautiful photographs.  We had a blast! And we will treasure these photos for years to come.  I know many people already saw some of these on Facebook, but I want to post them all.

Sunday, December 2, 2012


Our favorite friend from ND lovesssssssss pirate jokes.  Well actually, he loves ALL jokes.  ANY type of joke.  And he especially has a thing for puns.  But one silly joke that he would use over and over again was:

Brian:  What is a pirate's favorite radio station?
Me:  I don't know... What?

I always get a crack out of that one.  But I wish Eddie could understand some jokes.  Or, I wish I could reason with Eddie.  Or, I wish he would understand that this patch that he has to wear is going to help him, it is going to help him use his very weak left eye, and it will make his left eye stronger.  I wish we could pretend he was a pirate sailing on a voyage to some new adventure.......

Actually, I wish I didn't have to do it at all :(

Patching.... stinks! (Or, I guess a pirate would say it SINKS!) Muahahahaha....

And do you know what......of course it does!  I can't blame him!  He has some vision but we have no idea how much vision, in the left eye.  So, patching entails covering his right eye, the good eye, his seeing eye, so he and his brain are forced to exercise the muscles to control his left eye.  Studies have shown that patching can improve vision in one's eye, and it can help the eye from straying away and becoming a lazy eye.  So of course I want to do it, if it will help him.  But, I must say, it's awful.....He can barely see.  When I wave to him, all I get is a blank stare.... and that makes me sad...... But, a minute later he will be navigating his way through the house wonderfully, stepping over the baby gate without tripping and picking up his milk and taking a drink. I try to patch his eye everyday at the same time.  So, we have built up a routine.  Everyday when he wakes up from his nap, we get a snack, play a little bit, and then, BAM 4:00 p.m. is patching time. 

I HATE THE HOUR THAT EXISTS FROM 4:00 to 5:00 p.m.!  But I must say, we are making progress.  For the most part, we are patching for that entire hour.  BUT Eddie must be extremely distracted, or he will try to rip it off 47 million times!.]  So we take Winston for a walk around the block, then we walk to the play ground (in our little neighborhood) and we run around a bit.  But he has NO peripheral vision!  I don't need a doctor to tell me that, because he is DANGEROUS!  I am running around chasing him/diverting him from whacking his head on some toy or playground device.  Everyday from 4-5:00 p.m. I am running around the block, then the playground, then our house, trying to keep him from hurting himself :(

By the end of the hour I am sweating like crazy.  But, most people that know me, already know that I have a sweating issue..... not exactly a problem if you wear all black, just an issue :)  This is Michael by the way..... hahahah just kidding. Obvi......

Now, there are some days when he is absolutely, positively, 100% NOT going to allow us to patch his eye.  He will rip it off in 30 seconds.  But, most days we are hitting the 1 hour mark.  Dr. Shields would like us to be patching for 2 hours, and we are hoping to get there, some day, but right now, we are happy with Edward's cooperation.  Thanks buddy. I love you!
 Having fun, not minding the patch at all!
ANGRY!  This eye patching session, was not as successful, even though I gave him a lollipop!

Thursday, November 8, 2012

No News, is Good News. And Good News = Party Time!

We are so sorry that this blog has not been updated since Edward's MRI results.  Everything has been going well.  Edward was scheduled to see Dr. Shields at Will's Eye Institute in Philadelphia on October 24th for his 1st eye exam post chemo.  To say the least, my nerves were shot and I almost had a nervous breakdown the night before.  His bags were packed, our coffee cups were out and ready and little man was alseep.  I was suddenly left with 2 hours with my parents to watch t.v. and do nothing until it was time for bed.  I tried to put on a happy face, but suddenly burst into tears.  My dad even got me a Blue Moon to drink with him and talk, and I was crying so much that I was snotting all over my beer I couldn't even drink it.  I wanted to write this to you all, because I know our little updates are always so optimistic.  I know sometimes we sound like everything is fine, and we are just the cutest, strongest family.  But, the reality is that we are NOT, and the only way we continue to get through this situation is by the help, support, and prayers from you, all of our friends and family.  I was just so incredibly scared, and I had this terrible gut feeling that the cancer was spreading and we were about to walk into a chaos we have not yet seen.  Do I have anxiety?  YES.  Is it somewhat expected? YES Am I going to be constantly worried about losing my little boy? YES.  And I just don't know how to calm these fears, but to put on a happy face. You know " Keep Calm, and .........."  I don't really know how to finish that sentence!  SO I just wanted to say to you all who probably think I am naive and overly optimistic through this difficult time, that we truly have our constant worries, we always have the worst thoughts in the back of our minds, and we have no one else to thank except the Lord, our friends, and our family, for pushing these bad thoughts away at the darkest of times, and renewing our sense of hope.  Without hope, we have nothing.

So, the next day after crying myself to sleep, we arrived at Will's Eye (me, my mom, and Eddie) to hear the most unexpected news.  ALL THINGS ARE STABLE!   Stable is what we need to hear.  and to top that off, no treatment (laser) was needed.  He basically just had an eye exam under general anesthesia.  Could I really believe this?  I totally tricked myself into believing that we were going to hear bad news that I was speechless.  Dr. Shields looked me in the eye and said, "Mom, it is time to start enjoying toddlerhood."  When she said that I immediately burst into tears.  I have a toddler?  I thought I just had a baby with cancer!  Oh yes, we DO have a toddler! Anyway, both tumors were STABLE, meaning there was no re-growth or seeding (seeding is when the tumor produces and spits out baby tumors within the eye).  Both things I was expecting to hear.  I absolutely could not believe this news.  Now, here I go again on my pessimist/realist outlook, that we certainly could here that news in the future, but as of right now, we are stable.  We received a 2 1/2 to 3 month pass from Dr. Shields, meaning we do not have to come back until mid January. Can u believe it?  She did get on me about patching and Eddie wearing his glasses.  Both the patching of his good eye (to make his brain use the muscles in his weak eye) and the wearing of the glasses (for protection of the good right eye) are worthless moments at the Johnson household.  He screams, yells, and rips off the patch or the glasses within a nanosecond of putting them on....... We have some work to do.... Time for some tough love Edward.

Also, Edward survived his first cold and horrible cough of the season, and he even recovered on his own without any medications (don't worry though, it's not like we didn't freak out!  I had Michael check his lungs everyday, as well as Papa Johnson when we were in Augusta, and I propped up his mattress so he was sleeping on an incline, and I bought a Vicks Vaporizer that we used for a week straight! Overall, we were surprised, and relived that his little immune system was able to recover on its own.

On another note..... NO. MORE. BOTTLES!!!!!  What a milestone.  I don't know who is happier, me, Eddie, or Mike!!!  Ahhh it has been a somewhat smooth transition so far, and we have been bottle-less for a week now, and little man has not even asked for one.  So, pumped!  NO. MORE. FORMULA!  Enfamil Enfacare, you did your job for many months, but I am not sad to see you go.

So, the last two weeks were spent traveling.  We spent a week in Doylestown with my parents for his eye exam.  Then, Eddie and I drove back to Charlottesville, only to spend one night sleeping in our own beds, to then pack up and leave the next day (this time with Daddy!) to go to Augusta, GA for a week to spend time with the Johnson side of the family.  Eddie had a blast!  Here are some picture, hopefully in order including Doylestown pumpkin patch, playing with his cousins in GA, Halloween with the Johnson clan, and topping it off by enjoying Aunt Christine and Uncle Conrad's wedding.

 Reading with Uncle Danny before bed!
 Me, Eddie and Daisy!
 GOoooooooooooooooooo IRISH!
 "Mom, I want this one!"  Ummmmmmm no!
 Oooooooo scarey!
 A tractor and a giant pumpkin, just what a little boy wants to see :)

 Farmer Eddie!
 Walking Daisy all by himself.
 So proud of himself!
 Trying to hook her leash on her tail! haha
 Pet number 45 of the day!  He loves her!  And she tolerates him!
 Hi Grammy!
 Hanging out on the front lawn.....
Again, he is hooking her leash to her tail! Daisy you are sooooo good!
 Holy pumpkin!
 "Mom, why did you make me sit here?"
 Mmmmm!  Yummy!  Mini-pumpkins!
 Walking with Grammy....

AND, here we are in Augusta, GA........ Two cousins riding around.  Cameron was so sweet and held Eddie's hand as he drove around!  Sweet boys!

And now, HALLOWEEN!!!!!!!!!!!!!!!!!!!!!!!!

Christine and Conrad's Rehearsal dinner......
 Michael and Conrad, the excited Groom!
AND, the wedding!!!!!!!!!!!!!!!!!
 Eddie is thinking "Give me that crown of flowers!"
 Me and Granga :)
 Cheers!  Happy Wedding Day!
 Happy Parents!

 The Bride and her bridesmaids........
 Michael, being sweet enough to hold my flowers :)
 The prettiest flower girl around town.....
 Michael trying his best to keep Eddie quiet during the ceremony......
 Johnson boys, the flower girl, the ring bearer, and the alter server!  What a crew!
 Anne Marie and Stephanie, 2 pregnant bridesmaids, toughing it OUT!
The Johnson girls...................