Friday, October 17, 2014

Celebrating the positives

You would be surprised at the number of posts I have waiting to be shared that I never hit the publish button on.

Not sure if it's because I didn't like what I had written or what my reasoning was.

We've been super busy.  School started for the boys.  USC football returned!  Riley has had many therapy and doctors appointments.  The boys were sick.  Riley has had 2 UTI's.  I had an amazing opportunity to travel to WI via Chicago to pick up the adaptive stroller and meet Patrick's amazing mom.  We celebrated Pa Doug's birthday.  Logan turned 6!  I still can hardly believe that one.  We had a wonderful party with family and friends and corn dogs! We've been paired with a runner for Riley through the organization IR4. (Look them up on facebook and sign up to get a runner!) We participated in the CHOC Walk and spent the day before at Disneyland with the boys.  I'm sure I'm forgetting something!

It really feels like we have been on the go constantly.  Which is a good thing.  We're trying to appreciate each day.  Appreciate the opportunities we have to celebrate life.  Focusing as much on the positives as we can.  A few things have happened over the last few weeks that have knocked that sentiment back in front of us and reminded us that at the end of the day we do have a lot to be thankful for.

Riley is doing okay.  Not great, not bad.  Okay.

While we really wish that the seizures would just go away, we also know that unfortunately they never will.  They can be controlled with the right med combo but Riley's risk for seizures will always be there.  So we're continuing to try and find what works for Riley.

Our hope is that we are getting closer to finding something that will keep them at bay.  In fact a couple of weeks ago I was fairly certain we had.  Riley went a couple of days without any seizures or "S" words as we like to call them.

And then her UTI returned.  And so did her seizures.

Riley is amazing though.  We're hearing her voice more and more over her trach.  Because of the UTI's she's shed real tears and cried.  While it sounds mean it was music to my ears.  Hearing our baby girls voice in any capacity is wonderful and rare.  Seeing Riley have real emotion is encouraging.  In fact she hurt her ankle a couple of weeks ago and when she would be picked up she'd pull it in to prevent it from getting hurt.  These are all signs that Riley's brain is telling her what to do.

In therapy Riley is opening her hand and playing with toys.  She's choosing what toys to play with by making decisions with her eyes.  I'm moved to tears weekly while watching Riley work in therapy.  She tries SO hard.  When Riley first got sick I would squeeze her hand 3 times "I love you" is what I was trying to communicate to her.  While she was in her coma I did it all the time.  Wanting her to remember that we loved her no matter what.  Riley is now squeezing our hands in return.  We're proud of every little thing she is doing and look forward to seeing what she'll do next.

We had our follow up neurology appointment yesterday.  An appointment I was dreading.  Like pit in my stomach dread.  We decided after the last appointment that I would no longer attend these appointments alone.  Not only because the last appointment was so upsetting to me but, because it's important for Riley that we are both there to bounce ideas and questions off the doctor.

Over the last 3 months since we started the Ketogenic Diet Riley has lost around 5 lbs.  A fairly significant weight loss for Riley.  I'm looking forward to our GI appointment in a few weeks where they'll weigh her again.  If you recall last time they called her obese.

Riley was on a calorie restricted diet when we started the Keto Diet which is why her keto ratio started at 2:1.  It was increased a bit while we were in the hospital to 2.25:1 but,  we've been hoping they could work to get it closer to 3:1 and ultimately ideally a 4:1 ratio.  Everything we've read has said that there is more success the higher the ratio is.  The goal is to get her in to a high level of ketosis.  So we left the appointment with a new recipe a 2.75:1 ratio.  Because of her weight loss they were able to make changes and add in more fat.  We'll be in constant contact with the nutritionist (who by the way has been my savior when it's come to my zillion questions) and track Riley's weight over the next month.  Our hope is that she tolerates this change and we can then bump her up to the 3:1 ratio.

We will also be weaning Riley off of one of her meds.  Depakote.  Since starting Depakote Riley hasn't been able to maintain a level in her system that you need for the med to work.  For example her last blood draw had her Depakote level at 22.  A therapeutic level is in the 60's.  I think the only time her level has been decent was when she had a IV of Depakote before leaving one of her inpatient stays.  So yay for one less med!

We discussed the hemesphrectomy, where we go from here, Riley's future etc.  And for the first time in a long long time I am at peace with how we are proceeding.  There is a plan.  A loose plan that Riley is in charge of ultimately.

We're going to continue to watch Riley.  We're also going to be trying to avoid the hospital as much as we can over the next few months.  Cold/flu season is not a time you want to be in the hospital and given Riley's susceptibility to illness we really don't want her there.  Due to this her continuous monitoring won't take place again until the Spring.

We hope you have all been doing well!  I have so much more to share and am looking forward to telling you more about my trip to Chicago and the CHOC Walk.  2 highlights of the last couple of months.

Thanks for your continued thoughts and prayers.  We feel them daily.

Fight On!

Love,
Dave, Megan, Logan, Mason, Courageous Riley & our fabulous CHOC Walkers!


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