Easter Weekend

We hope you all had a wonderful Easter weekend surrounded by family and friends. We all had a very busy weekend and now we're in countdown mode!
I thought I'd start this off with a picture from last year at Easter!

Mason, Mia and Riley

Friday we were given the results of Riley's PH probe test.  This was the tube that was inserted in through her nose to her esophagus and measured the PH coming from her tummy.  The results showed what we had been suspecting and she has reflux and gastritis.  :(  While this provided us with some answers as to why she always seemed to tone and become agitated after a feeding it has also brought back up the discussion of a fundoplication procedure. 

Fundoplication is a type of surgery to prevent stomach contents

from returning to the esophagus (food tube). This is achieved by

wrapping the upper portion of the stomach (fundus) around the

lower portion of the esophagus. This tightens the lower esophagus

so that food and fluid can go down into the stomach but cannot

return up to the esophagus to cause symptoms of gastroesophageal

reflux disease (GERD). Info from gikids.org
 

Riley will have another GI appointment at CHOC on Wednesday with the doctor who originally put in her gtube and we'll discuss where we go from here.  While we want Riley to be comfortable and we know getting these things under control will help her, we really don't want her to have to go through another surgery if she doesn't have to. 

For now, they have upped her dose of Prilosec.  She still spit up/vomited throughout the weekend, right after her 4am feed which makes sense because she gets her Prilosec dose at 6 am.  Thankfully, early this morning I was able to sit with her and rub her belly for an hour or so and she didn't spit up.  I'm hoping that means the upped Prilosec dosage is working but, realistically I know it may have just been a fluke. 

Riley has been very alert and very awake.  So much so that Friday afternoon I called Dave in tears as I sat with our baby girl and watched her look all around the room, follow my voice to both the right and left sides and just look at me like she was back.  It was a moment that really took my breath away.  She was just Riley.  Of course it makes me nervous even sharing that as we all know for every step forward, inevitably there will be a step back but, for now we are enjoying how calm Riley is and celebrating this milestone.  Her HR has remained more normal and has even dipped below 100 for longer periods of time which even though normal makes us nervous because for so long she hovered in the 160's and that was what we got used to.

Uncle Brad, Aunt Kara and Molly came by to see Riley Friday morning.  Aunt Kara, being an optometrist, was able to look in Riley's eyes and reaffirm what we were seeing.  Dave forgot to get some pictures but, the resemblance between Riley and Molly is amazing!  The last time my brother was out here was when Riley was in critical condition at CHOC so I am happy he could see her in much better shape.

Friday Logan was able to spend the day with Grammie, Pa Doug, Uncle Brad, Aunt Kara and Molly.  He has been talking about this day for months.  They went to Chuck e Cheese and decorated cupcakes back at Grammie's house.  Logan LOVES Molly and I think the feeling is mutual.  It was so cute to see him around one of girl cousins because usually he's around his boy cousins who are older.  Logan can't wait for Molly to live back close to us in CA and I can't wait to see our kids all grow up together!

Saturday morning Grandpa Hopper came to spend the day with Riley and the boys got to go with Tia T, Uncle Mike and Mia to an Easter Egg Hunt in Glendora.  It was something we had planned on doing with the kids so I am thrilled that they were able to go.  I know Logan had fun playing with all of Mia's cousin's especially Roman.  Logan loves older kids!  I was told Mason was very well behaved and had fun watching all of the kiddos and excitement of the morning.

 

While the boys were gone we were able to get going on cleaning and organizing our house!  Jen Jen and Casey joined us early Saturday and we started filling the big trash bin I rented and getting things ready for Riley's homecoming.  Tia T and Uncle Mike helped us out when they got back from the egg hunt.   Uncle James, Uncle Scott, Drew, Gage and Tobin were also over and Uncle James has almost finished putting Riley's room circuits to a back up generator panel so that if we were to lose power we can just plug it in to a generator and be assured Riley will have the support she needs.  Logan even got to dye eggs with Jen Jen's assistance.  We are very thankful for the help of family and friends.

Easter morning I was home with the boys and they had fun digging through their baskets.  Logan couldn't believe the Easter Bunny remembered he wanted silly string.  The night before he reminded me and I realized the bunny forgot the silly string!  We (Jen Jen and mommy) made a late night run to Party City to pick up some silly string so Logan wasn't disappointed.  The look on his face when he saw it in the morning made the trip worthwhile!  I did enjoy the fact that Logan told Mason after they opened their baskets that Easter wasn't all about the bunny.  His exact words:  "It really was about Jesus and how he was on a cross and came back again".  I think I can safely say he grasps the concept of Easter, at least a little!

I took the boys over to my mom and dad's house for brunch Easter morning while Dave stayed with Riley.  Helen, Mark, Joanna, Uncle Brad, Aunt Kara and Molly were there.  We had a wonderful brunch and Logan and Molly did an little egg hunt together.  I had not seen Molly in months and her little personality was adorable.  She loved Mason and kept trying to help give him his bottle.  She's going to be a great big sister!

After Grammie and Pa Doug's we went home for naps and then headed to Riley's to spend the afternoon with her.  My parents arrived at the same time we did and I know we were all overwhelmed with the reaction Riley had to seeing Mason.  As I said, she's much more alert and aware and she couldn't take her eyes off of Mason.  We took the kids out back to play and hang out and Riley loved being in the sun and feeling the breeze.   I know Riley will thrive being back home with all of us.

 
3 more sleeps and Riley comes home!  We're hoping we're ready although much like bringing a newborn home for the first time, I don't think you're ever really "ready".  We've had more equipment delivered and I don't know where we are going to put everything!  Our old den is becoming a mini hospital room in many ways.  We're excited and anxious but, looking forward to being under the same roof for the first time in 3 months.  If you have a Team Riley shirt we'd love if you'd wear them on Thursday for Riley.  I have a few special surprises for her homecoming and we'd love for you to share in our joy. 

Fight on!

Love,

Dave, Megan, Logan, Mason and Courageous Riley!