Tuesday, September 13, 2016

New Beginnings

Since March 25th when we realized Eddie's retinoblastoma showed new growth , Eddie has had 4 more eye exams.  After seeing that the thermotherapy (heating) did not work to shrink the tumor in his left eye, Dr. Singh switched to cryotherapy (freezing) of the tumor.  Thankfully, the April cryotherapy worked. The tumor did not actually shrink, but it did not grow.  As of right now, as evidenced by the most recent eye exam in August, the tumor has not grown anymore and is remaining the same size.  This is good news, and so Dr. Singh is not doing any more laser eye therapy at this time, but instead monitoring the tumors by monthly eye exams. Years ago, kids with retinoblastoma would most likely have the eye removed to rid the body of the cancer, but now a days, the goals include to save the actual eye while attacking the cancer with various chemo reduction methods.  We are happy that the tumor has remained the same (of course we wish it was not there in the first place) but a stable tumor means full steam ahead for Kindergarten!

Eddie first went to Kindergarten on Mary Elizabeth's birthday, August 24th.  We had quite an emotional day, brought on by the lack of sleep provided by Mary Elizabeth (remember when I said she was an angel baby? I lied). We went out to dinner that night to Dewey's, our favorite pizza shop, and celebrated!
 MMMMMMmmmmmmmm cupcakes!  This girl!  What a blessing you are and what a blessing you have been to this family.  
 I love this picture. We are not all looking, and we are not all smiling, but Mom and Dad got through the day without any tears.  Such milestones! 8/24/2016
 My incredible boy, oh how proud of you we are.  We are so thankful for you, everyday! As he walking into school that day I was holding his hand and he looked up at me and said, "Mom, I am really going to miss you a whole bunch." I wanted to scoop him up and run away back to the the house with him, and keep him forever, but before I could even answer he said the cutest thing ever as he said, "Squeeze my hand if you are going to miss me too." Well, I nearly broke his little hand, his sweet little hand.
There were many days in the NICU when we wondered if we would get to keep you, if we would ever be able to take you home, and now you are off to school! I can't believe it, all of our days at home together, all of our days in the hospital together, has brought us here.  Go get 'em!  Listen, behave, be patient, and be kind.  Have fun LEARNING! You deserve it buddy!

We have had quite a few weeks.  Mary Elizabeth has been absolutely nuts and has been up 3-4 times a night the whole first 2 weeks of Kindergarten, so no one in our house has slept, but finally, up popped her first tooth.  She is hilarious, and feisty, and most times oh so sweet.  She LOVES her big brother and she definitely misses him during the day (just like me). And so we are both are eager to pick him up at dismissal.  She is walking and starting to climb the stairs.  Baby proofing is in full effect here. She had her 1 year well check and she weighed 17 lbs 15 oz putting her in the 20th percentile for weight and she measured 27.5 inches long, putting her in the 5 percentile for length.  She will eat pretty much anything and especially likes to eat strawberries, blueberries, and meatballs.  Yes, Trader Joe's italian meatballs are her favorite. She is entering this stage where she finds herself doing funny things, and laughs at herself and looks to us for attention. Sounds like Eddie.  The two of them together is definitely double trouble.

Eddie is loving Kindergarten.  I feel that he is proud of himself and he walks into school every morning without any problem.  He says some pretty hilarious stuff about school, but I honestly can't remember it all.  I asked him what was the best part of his school day and he said, "Coming home to you Mom!"  No joke, not a lie, he melted my heart!  Sometimes I feel like I am nothing but 'mean Mommy' because I am always correcting him and I am the disciplinarian while Michael is working, but I know he loves me. He comes home with most of his lunch box still full with food.  I am pretty sure he is using his eating time by chatting up whoever the heck is next to him.  The past few weeks have been a complete blur.  He is happy, I am happy, Mary Elizabeth is happy, and Michael is happy.  Right now, at this moment, life is good.  We are enjoying this busy time, but we are falling into bed every single night totally exhausted.  We appreciate everyone's continual prayers and we appreciate everyone checking in on us.  All. Is Well.  If I don't respond to a text, email, phone call right away, please excuse me , we are desperately trying to get organized again.  This is our new beginning. 

* Eddie's next MRI/eye exam will be in the mid/end of October.  We are still working out the exact date, but until then......

Shhhhhhhhhhhhhhhhhhhh Mary Elizabeth is actually sleeping...............


1 comment:

  1. I am glad to see this; I have been wondering how things were but didn't want to spoil you smile by asking!!