Sunday, June 23, 2013

Busy, busy, busy!

Riley had a good week!  A busy week but, it was a good busy. 

We started off the week trading in our Expedition for a Suburban.  We were just out of room in the Expedition.  After our outing on Father's Day with all 3 kids plus a nurse and all of Riley's medical equipment it was evident we needed something bigger!   When all was said and done we made money on our trade, lowered our payment and ended up with what we needed! It just made sense for so many reasons!  Now to get a TMRILEY license plate!  I'm hoping it's an available option!

Tuesday was our appointment at the House Institute to meet with the doctor and get Riley fitted for her hearing aids.  We met with Dr. Goddard and I really liked him.  He knew the severity of Riley's hearing loss and what we are dealing with but, also took the time to ask me questions about what I thought and truly listened to my answers.  He agreed with the importance of the now vs. later approach to cochlear implants and he made me feel confident in our decision to go to the House Institute. 
He asked me what I thought about Riley's hearing.  Between Dave, myself, grandparents and care givers we all think she can hear.  When I say think I mean that we all have different experiences with Riley responding to us when we speak to her that leads us to believe she can hear us.  He didn't laugh at me.  He didn't tell me I was crazy.  He took note and I  took that as a good sign.  He recommended that we also have an MRI done at the same time of the sedated hearing test.  The MRI will show us what we are dealing with and what is really going on in Riley's ears.  We'll follow up with him a few days after the sedated hearing test/MRI and if Riley is still a candidate her cochlear implant surgery will follow very soon after.  We discussed where the surgery would take place and although  Dr. Goddard is still in the process of getting rights at CHLA (Children's Hospital Los Angeles) we both agreed that should be where the surgery is done.  If  Dr. Goddard doesn't get his rights there in time there are two other doctors at the House Institute that could take Riley's case and do the surgery at CHLA.  We left our appointment with Dr. Goddard and I felt relieved.

Next we met with the audiologist Jamie who we had seen the previous week.  She made molds of Riley's ears and we picked out the style of hearing aids Riley will be getting.  I wanted to get her pink ones to match her pink glasses but, she made a good point about Mason wanting to play with them if they were a fun color.  So we chose the pair that will blend in the most with Riley's hair color.  For now we are going with a loaner pair as Riley will wear these as a trial before the cochlear implants.  Because we are again on a race against the clock we as her parents and all other care givers will be noting how Riley reacts once these are placed.  Jamie will set the settings on the hearing aids at around lawnmower level and we'll see how she reacts.  I rushed the order and we go back on Thursday to have them fitted and pick them up.  It will be a hard appointment.  I never in a million years thought I'd be needing to pick out hearing aids for my perfectly healthy daughter.  We're okay with this though because Riley needs all of the assistance we can find to help her heal.

Picking out the hearing aids!
Ready for the molds!
Molds ready to go!
Molds all ready!
Hearing aid model!

Wednesday we had PT and a meeting with a lady from our local school district who will work with Riley and our family with communication techniques.  She brought a school district nurse and we went over Riley's case and how we got here.  I held back tears multiple times as discussing the first few days of Riley's diagnosis and life before her illness can be hard.  It's the same sequence of questions with every new encounter with a doctor, therapist, etc.

Normal pregnancy? Yes.  She was a twin. 
Oh really?  Yes, twin A.
Were they born early? No,  38 weeks.
How? Scheduled Csection
What did she weigh?  She was 6 pounds 9 ounces, her brother was 6 pounds even
Oh wow.  That's great.... Me: Yeah I know.
So any complications after?  Yes/no.  Riley spent 5 days in the NICU for observation on lung development but discharged home perfectly healthy.
So any issues with development? NO.  My perfectly healthy, normally developing, immunized child was doing fine.  Then I explain how my twins met their milestones on time.  Not early.  How they were perfectly developing and how Riley's illness went down.

I really need a cheat sheet.  A synopsis to pass out.  Explaining this over and over is hard.  And it's not any one person's fault for asking or wanting to know.  They all have piles of paperwork that needs to be filled out.  Reports to write.  However, I choke back tears each time we get to the how part.  How we got here.  So a cheat sheet.  Generic answers to all those questions that are repeated over and over is probably in order.

I'll meet with these ladies again this week and they will formulate a plan with us on where we go from here and how they specifically will help Riley and our family.

Thursday, we headed back to Dr. Hu (Riley's pediatrician) for a weight check.  I was nervous.  Riley had lost weight so this was a real test to see if what we're doing to help her keep her feeds down was working.  Riley weighed in at 20 pounds 8.5 ounces.  Almost an entire pound in 8 days!  I was thrilled as was Riley's nurse Trudy.  It's the little victories that really mean the most some days!

Thursday afternoon Logan headed to Del Mar with Grammie.  I love that he gets the opportunity to do fun big kid things.  Friday they went to the beach and Saturday headed to the San Diego county fair. 

Since Logan was out of town we were able to get Grandpa and Grandma Hopper over to watch Mason on Friday night and we were able to have a dinner date.  It was nice to be able to eat without the distractions of the boys and we had a ton of fun!

Saturday, I headed off to Atria's baby shower.  We are all looking forward to meeting baby Addison and I really enjoyed the "girl" time while at the shower.
Missing a few but, the momma to be and some of my wonderful girlfriends!
Cutest cake ever!

Today I loaded up Mason and headed down to Del Mar to pick up Logan.  Initially he was going to stay through tomorrow and come home tomorrow night but, it was pretty evident that Logan is a lot like his mama and has a bit of a difficult time sleeping away from home.  We were able to hang out for a little bit at the Del Mar house and then had a nice lunch with my parents at Chiefs in Solana Beach before hitting the road back home complete with Sunday afternoon traffic from h*** on the 5.  I should have planned better but, oh well!
Hanging out at the beach house!
I miss this view!
Lunch at Chiefs!

Dave and Logan ended the weekend with a movie date to Monsters U.  Logan has been begging to see the movie for weeks so I am happy they were able to fit it in tonight!

We'll be busy again this week but, when are we not.  Riley has been so animated this weekend and is really starting to express herself in ways only she knows how.  It's wonderful to see!  It renews our belief in Riley when we see the changes she is accomplishing little by little!  I just know she'll do big things!  She already has.

Fight on!

Dave, Megan, Logan, Mason and Courageous Riley!

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