Finally

The last time I posted Dave had just been with Riley to the neurologist and we were pretty down just because what we were seeing on paper is in fact a lot to see when it pertains to your child.

However, putting that piece of paper away and focusing on Riley in real time is encouraging and promising so that's what we've done.  She still continues to amaze us daily.

Just this week she has started to suck on a pacifier when her nurse Trudy introduces it to her.  This morning she rolled from her side to her back while Dave was giving her a kiss goodbye before work.  She bicycles her legs.  Stretches her arms and yawns when she wakes up from a nap.  Looks at her brother's like they are the greatest things in the world when they enter a room.  With the unbiased input from her nurses that have just met her and the reassurance that what we are seeing is in fact something new and purposeful for Riley we Fight On.

The most frustrating thing about coming home has been arranging Riley's appointments and therapies and getting everything to fall in to place.  Dave mentioned Casa Colina to me again last week after the neuro appointment.  I believed that they did not take infants at all for any of the programs they offer.  I figured I'd call them one last time just to make sure I was correct.  No one had mentioned them as a possibility for services since we had decided to do inpatient at Healthbridge so I had just put them out of my mind.  Oh how I was wrong!  and I am so thankful that I was.  Casa Colina is an amazing rehab center located pretty much in our backyard.  After a few phone calls back and forth we will be going next week to finally have Riley's PT/OT set up.  For now, we'll go to the center and have her participate as an outpatient.  I think the riding in the car to her appointments  and new surroundings will be good for her.

Tomorrow, her ST therapy starts.  FINALLY.  And yes, I am yelling because I can't tell you how many times I have called over the last few weeks to make sure that this would all come together and now it finally is!  ST will be done in our house once a week. 

Thankfully, Riley's nurses have been great at working with her while we waited to get these therapies set up.  I finally went on an Amazon shopping spree and purchased a bunch of therapy equipment/aids that we can use at home as well.  Our goal is to learn what needs to be done therapy wise, teach others what needs to be done and work with Riley as much as possible.  This is the only way we know how to give Riley the chance she needs to rewire, relearn and rewrite her life story.

I feel relieved.  Aside from needing to let one of our regular nurses go due to some issues and still fighting with the State to get Riley approved for certain services I feel like we have a plan and that we are doing all that we can for Riley.

Tuesday, Trudy (Riley's morning nurse) and I took Riley to CHOC to have her chest xray done that was requested by her pulmonologist.  The new radiology department at CHOC is amazing and state of the art and clean.  I know I've become a germaphobe through all of this and I really appreciated the new clean feeling the department had.  It's the little things sometimes!  We're waiting for the results to see if Riley is responding to the breathing treatments she receives and if there has been improvement since the last chest xray.  Hopefully, it will be good news and we can then plan to have a bronchoscopy scheduled to look at her airway and decide whether or not a smaller trach would be okay for Riley.

We postponed Riley's fundoplication procedure until May 31st and will follow up with GI next week to see if they want us to even keep the surgery on the books or if we've conquered Riley's feeding issues...... For now.

Last Sunday we were able to take the boys over to Grammie & Pa Doug's for their annual Showcase House brunch.  I debated going at all, knowing we'd be leaving Riley alone with the nurse and feeling a bit sad that we wouldn't be all together as a family.  She was in great hands though so I am happy that we went. 

Brothers

 

While there a book was recommended to me Proof of Heaven.  I immediately went home and downloaded a copy of it on to my Kindle.  It's the true story of a Neurosurgeon who contracted a rare form of  bacterial meningitis/encephalitis.  I'm about 3/4's of the way through the book and have cried through most of the pages.  With Riley being so young she can't express to us anything that she has been through or what it felt like.  By reading Dr. Eben Alexander's words, especially the way he recounts those first days after being diagnosed I feel like I might be able to understand some of the things that went on for Riley.  I know now that her "waking" up on January 1 was very hard for her to do.  I hope, as Dr. Alexander did, that Riley feels the love and devotion we as a family have for her.  I know deep down that will be what carries her through.  I'll hopefully finish the book tonight.  I think that reading this book written by a Neurosurgeon, who himself would have told the family of a patient with a case like his that there was no hope, has fueled my hopes, prayers and dreams for Riley even more.  Thanks Gwen.

“Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending.” – Carl Bard


Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley