One Day at a Time

We had a great time Friday celebrating Mason and Riley turning 2!  We were able to take Mason to lunch at our favorite mexican restaurant on Friday and he enjoyed every minute of his one on one time with mommy and daddy.

Yummy!

Riley had a great day as well and even got the day off from therapy since the weather was so crazy! We ended the day with pizza and cake with the grandparents.

Hi Pa Doug

Riley even tried some frosting :)

Frosting

The official birthday party is this weekend and I have never been so happy that we chose this weekend over last as it was rainy and cold and we probably would've had to cancel!  We also started to notice that our windows were leaking and it was creating quite the mess with all the rain we had.  Now that we've dried out a bit and we're expecting 80 degree weather n Saturday we're hopeful that everything will go as planned.

Hi sissy want to play with the puppy?

Monday I took Mason to the pediatrician for his 2 year old check up.  He'll be starting "school" tomorrow (2 yr old preschool 2 days a week) and we needed him to have his check up before he started.  The appointment didn't go as well as I expected and I am still trying my hardest to not think about the what ifs.

Dr. Mason

 Mason has a heart murmur.  The pediatrician noticed it at his 18 month appointment but, wasn't overly concerned.  Well on Monday it was more noticeable and so she's referring us to a cardiologist.  These two are going to turn my whole head of hair grey!  The good news is Mason is thriving.  He's 35 inches tall and 29 pounds.  He's hitting his milestones and doing everything he should be doing at 2.  So while all signs point to this being insignificant it still leaves me unsettled.  We'll see a cardiologist in the next month or so.

Last week Riley also had another appointment with her audiologist.  She's doing really well with her implant and had definite reactions while the audiologist was testing the channels in Riley's implant.  We go back again in April and at some point in the next few months they will have Riley back in the sound booth to see what type of response Riley exhibits now versus before the implant.  Remember Riley isn't hearing like you and I do so much of what she's doing now day to day is helping to train her "ear" to hear certain sounds and identify with them.  We've been encouraged to use baby talk around her and repeat things over and over in a sing song fashion.  Similar to the natural actions you'd have around a newborn baby cooing and what not.  We're still amazed with the difference in Riley's face while she has the implant on.  We know she appreciates being able to hear sounds even though I am sure there are times she's like to tune us all out.

With all of her babies!

We also met with Riley's ENT doctor last week and have a tentative plan in place for removal of the granuloma.  She's scheduled for surgery at the end of March (we may push it back one more week just so we're out of the official Flu season).  When the doctor gets in to the OR and if he is able to remove the granuloma without opening up Riley's stoma site it should be an easy procedure.  If he is still unable to get to the granuloma like last time and needs to open up the stoma site it will be similar to the surgery when Riley's trach was initially placed and may get Riley a ticket to being inpatient for a few days.  Because of this possibility we are trying, as best we can, to plan around flu season.  Once this procedure is done we can begin to work on other therapies.  Feeding, swallowing etc.  Until the day that Riley is dencannulated (and yes I do believe that one day in the future she will be) the granuloma has the possibility of growing back.  It's the nature of the beast as the trach is a foreign object that Riley's body is trying to expel and with that comes the scar tissue.

Sleepy baby in her new jammies from Grandad and Grandma.

Sometime in the next couple of weeks Riley will have another round of Botox and hopefully the stander we ordered will be here next week so we can start to use that again with Riley.

In the meantime we're busy with life in general and trying to just take things one day at a time.  Mason's diagnosis hit me hard.  Even though we knew about this 6 months ago I put it in the back of my mind because until it was time to worry I really didn't have the emotional energy to add it to my list of anxiety producers.  For now I will continue to look at the patient (Mason) and remind myself that he looks good, is doing well and is growing as he should.  Hopefully this will just be a blip in Mason's year and it will turn out to be insignificant.  If not... well there is not a "if not" right now in my mind.

Fight On!

Love,
Dave, Megan, Logan, Mason & Courageous Riley

It's go time!

I know I usually say we try and take things one day at a time but, right now it seems like we need to take them one hour at a time!  I have to apologize in advance as I don't have any pictures to add this evening.  We just got home from a city planning commission hearing (yes, our neighbors are still opposed to having a rehab facility for TBI patients in their backyard).  We did learn tonight that the facility will also have an outpatient rehab for PT, OT and ST.  This development may or may not have made me want to jump with joy.  But, I'll save that for the actual City Council meeting next month :)

Sunday I received an email from Dr. Niparko.  A doctor I’d  heard of but we'd never met with him.  He happens to be Professor and Chair of the Otolaryngology department at USC and just recently came to USC from Johns Hopkins.  He needed to talk to us and the fact that it was a Sunday sent a zillion red flags up that something was up.

Dr. Niparko has been part of the team trying to get Pediatric Cochlear Implants approved at USC.  We knew all along that the last hurdle before surgery proceeded at Keck would be to have the Board of Directors approve Riley’s case.  After a meeting sometime last week they decided that for now pediatric implants need to be done at CHLA.  And this is where we held our breathe waiting for what he’d say next.

Thankfully, Dr. Niparko has privileges at CHLA and works there in the ENT clinic a couple days a week.  So he will be taking Riley’s case on.  He also knew how important it was for us to have this surgery done so they made room at CHLA for Riley to still have her surgery done tomorrow.  Since things changed so unexpectedly we had to roll with whatever they had planned for us this week.  Which meant… instead of our Pre Op appointment at Keck today, we headed to CHLA for our pre op appointment and to meet Dr. Niparko yesterday.

We’ve never been to CHLA so this is a whole new facility for us and it’s going to take some getting used to!  And in LA traffic getting to CHLA is sort of a nightmare.  I’ve never been so thankful that the majority of our doctors are at CHOC then after yesterdays fiasco of a morning!

We pre registered, met with the nurse practitioner to go over Riley’s history (you know our most favorite thing to do ever).  The NP was quick and super understanding.  She didn’t dwell on how Riley got sick nor did she ask if Riley’s twin was “normal” (yes, we had a nurse do this last week).

After that we headed over to the clinic to meet Dr. Niparko.  Both Dave and I have spoken with him several times this week and emailed with him so I knew he’d be a decent doctor.  He's really gone out of his way to make sure we know Riley is being taken care of and is in good hands.

We’re set to go for surgery tomorrow at 730 am.  However, some more last minute changes were made during our meeting.  I’m still not sure how I feel about them.  It’s possible that I need to relax and realize that he’s the professional and he knows what he’s doing but, a part of me is scared that there is more behind his decisions.

Dr. Niparko only wants to do one of Riley’s ears right now.  After she heals from this surgery we’ll be looking at doing this again in the other ear in 3 months.  His reasoning is that due to Riley’s trach, g tube, seizures etc. he doesn’t want to keep Riley under for longer then necessary.  While I guess I agree I am frustrated because I think doctors that first meet Riley have a hard time looking past the trach and g tube and seeing that other that those extra accessories and a seizure disorder her other organs are fine.  So we’ll go with the flow and trust his decision.  I’m just taken aback that he walked in talking about a bilateral implant and left deciding to do one.  I also worry that they won’t see the type of response they want from this implant and they’ll decide to not do the other.  Irrational?  Perhaps?  But, when you are fighting day in and day out for your child every and I mean every thought crosses your mind.

They’ll start with the left ear.  We know Riley could respond to us from this ear all along so I guess this  is positive.  Most of your speech comes from the right side of your brain which is why they start with the left ear.  My fear with this though is that the majority of Riley’s brain damage is on the right side of her brain….

But, only with time will we know what the implants will do for Riley.  And for now we are doing our best to get Riley what she needs. 

After months of trying to get this surgery scheduled.  After switching doctors, hospitals and calling more people then I can count I sit on the eve of this surgery still in shock that tomorrow is THE day.

Please keep Riley in your prayers and thoughts.  Her surgery is the first one of the day and we’ll be up bright and early to get her to CHLA at 5:30am.  Surgery should only last a total of 90 or so minutes.  The actual procedure will be more like 30-45 minutes. 

If all goes well and Riley comes out of the anesthesia okay we hope to be home by the early afternoon.

Now to try and sleep…

Love you all and thank you for continuing to support us as we take another huge step for Riley.

Fight On!

Love,

Dave, Megan, Logan, Mason & Courageous Riley!

Hope

We had a great semi normal weekend last weekend.  Filled with family, friends and fun.  It was nice.  I'm exhausted.  But, I'm grateful for the memories that were created. 

Last Thursday we headed here:

It's no secret that I LOVE my Trojans and Trojan Family (yes it does exist) and so ending up at Keck with Riley was relieving.  Why?  Because after months of wondering when? where? how?  we finally landed somewhere that will be able to help Riley with her bilateral Cochlear Implants.  I can't even tell you the number of times I've cried, vented, called, tried.... to just make this a reality. 

We met with Dr. Rick Friedman.  And just as his bio says he is one of  the nicest  and easiest to talk to doctors I've met in a while.  When he asked if I had any questions I let him know I had done a ton of Dr. Google research.  He then asked if he checked out ok.  He does.  He has a ton of experience and passion behind what he is doing.  Doctors like that are the ones you want to be in front of and want on your team.  My only nerves that day came from navigating the parking structure.  Really, trust me, if you'd driven around the parking lot maze like we did for 37 minutes (yes, I timed it) looking for a parking spot, you'd understand!

If all goes as planned, Riley will have her CI surgery on December 23rd.  The best Christmas present I have ever received.  Really.  Now we just need to get past the ACTH and hope that all goes well with that and we're good to go.  And..... Riley will be the 1st ever Pediatric CI at USC.  That my friends gives me chills.  The excitement I had walking out of that appointment really helped set the tone for the rest of the weekend.  We are so thankful to each and every person that is helping to make this happen.

Friday morning Riley had PT and she jumped right back in.  Her therapist had her on her knees and arms practicing lifting her head up and she did this:

Riley trying her hardest to lift her head,

Holding her head up with some support.

Friday afternoon I ran over to Logan's school to join his class for the October birthday celebrations.  There were 4 birthdays in the class in October and Logan had been waiting since September's celebration for his party!  He really is my child, making his birthday last all month long!

 

Mmmm cupcakes!

At the front of the class with his birthday balloon!

Friday night we were able to meet up with Tia T and Uncle Mike for the Zac Brown Band concert at the Hollywood Bowl.  Grammie (my mom) came over to stay with the kiddos and hold down the fort so we could get out for some grown up time.  It was a blast and a night we'll remember for a long time.  I really wish we could make these "date" nights a more regular occurrence.  And trust me we try! 

Saturday morning we headed home early so I could grab Logan and head to the USC game.  Logan was so excited about seeing Traveler and the guy on the horse (Tommy Trojan).  We met up with Grammie, Pa Doug, Uncle Brad and Molly before the game and Logan and Molly had a blast playing around together.

Best Cousins

Cheese with Grammie

Tallest to shortest with Pa Doug

 

Seriously!!!  Where did this big kid come from!

Game time with mommy

I've missed this view!  Finally at a home game!  My happy place!!!

I absolutely love that Molly and Logan just adore each other.  Logan was so worried about Molly holding his hand and staying close to us!  Our seats are a couple tunnels away from my parent's and by the end of the 1st quarter Logan was anxious to get back to watch the game with Molly.  There happened to be a few seats open around Grammie and Pa Doug (not a surprise to those following college football :() and so Logan was able to watch the rest of the game with Molly.  I'm thrilled I decided to go to the game and take Logan.  He had a blast and is turning in to quite the USC fan!

Sunday we headed to our first Halloween activity which was Trunk or Treat at Miss Mia's preschool.  Batman and Robin were adorable and although we missed being able to bring Riley (crowds are not good for her) we still had fun.

Batman and Robin!

Mason learning how to "Trick or Treat"

Smiles with Mia

Yesterday Logan had his first field trip to the Pumpkin Patch.  I was so happy that I was able to attend and watching Logan and his classmates together is hilarious!  Those kids have some energy.  The rain held off just long enough for us to take the tractor ride, visit the animals in the petting zoo and have a quick tour of the park.  The trip ended with the kids picking out small pumpkins and decorating them.  Being the daughter of the ultimate PTA mom I've always wanted to be able to do the same for my kids so,  it was nice to be able to participate and be there for Logan.

More selfies with Logan

Yeehaw

Some of Logan's K friends

Today we had an ophthalmologist appointment and all went well.  We take Riley to The Center for the Partially Sighted and everyone that works there is just wonderful.  The doctor that Riley sees lost his own sight a few years ago.  He works with an optometrist and uses his computer to notate what is going on during the exam etc.  He explained Riley's actual vision to me today which I found interesting.  I was under the impression that Riley could not see out of one eye at all.  This isn't the case.  Without glasses Riley sees everything very thinly.  The example he used is that a 32 inch door opening looks like 12 inches to Riley.  Being me I joked that Riley thinks her mom is skinny!  Her glasses help to correct this and make things look like they normally would.  Once we get the written report from them I will have to consult Aunt Kara (my SIL) to have her explain to me more what it all means.  They were throwing around terms I have never heard of.

Tomorrow Riley has Visual Therapy, PT and ST.  It will be a busy day! 
Riley is doing ok right now.  Riley's ACTH dose was cut in half on Friday.  Unfortunately, with the dosage decrease Riley has started back with her seizures.  Not as severe at all.  Much shorter.  But, they are still back.  I am anxiously awaiting a call back from her neurologist's office to see what's next?  Dosage increase?  Office visit?  I'm just not sure.

Friday we'll have a repeat EEG.  I'm hoping it goes well.  I say hoping because the last time we had a routine EEG we ended up inpatient for 6 days.  We're still not recovered from that stay and would really like to avoid being inpatient for a while!

Queen of the side eye!

After all of that I am ready for a nap!  I will admit though that it was nice this weekend to feel "normal".

We hope you all have a very memorable and Happy Halloween.  Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley

MRI results, ABR results and CI's

What to say.  How do I even explain this week.  Well this week has been interesting.  An emotional roller coaster so to speak.  Up, up, down, up and down again.  My eyes this morning show the puffiness that you only get after a good cry.  A cry that releases all of the emotions you're holding in just so that you can put one foot in front of the other in order to make it to Friday!  And, I feel better and more relaxed and ready for some time with my little family this weekend. 

I know this road is hard.  Trust me.  But, some weeks are more emotionally draining then others.  I know what we are in for, for the most part.  I've googled and googled and earned the title of Dr. Mcgooglehopper.  However, it doesn't matter what happens it still stings sometimes.

This week Riley received her MRI results, had her sedated hearing exam and yesterday Logan had his last day of preschool.  I was certain I would cry picking him up but, I stayed strong for Logan because he asked me not to cry.  He told me Wednesday night that it is okay that he is growing up and that he will always be my bubba. 

We are so thankful for the 3 years that Logan had at Sonrise preschool.  The community and family feeling that Logan and our family had was amazing.  When Riley got sick they prayed for her , for us.  When we had shirts made all of the teachers got one and wore them every Wednesday until Riley came home.  Logan was able to see the support that Riley was getting and it comforted him.  They let him pray for Riley with his friends everyday and held his hand at nap time when he would cry because he missed us.  For 100 days Sonrise provided the normalcy Logan needed.  Logan has also grown so much over the last 3 years and learned so much.  We're so happy to have had the experience we did at Sonrise and look forward to seeing how Logan grows at Sonrise Kindergarten.  Wednesday night I wanted so badly to explain to Logan that my tears would be of joy and happiness because of the little man he is becoming and some fear and trepidation on mommy's part by taking him from his familiar bubble and moving him on.  But, I'll save that for another day and have faith in the fact that Logan has become my sweet, smart, loving and caring boy who is ready for the next chapter of his life.  And... I'm fairly certain that I am not alone as a mom in feeling this way, which makes it easier.

Tuesday morning as I was heading out the door to take Logan to preschool the house phone rang. I don't know about you but, we really rarely answer our house phone. I mean if we look at the caller ID and recognize the number we will but, usually it's just another solicitation or some contractor wanting to remodel our house or put solar panels on our roof. As I walked towards the garage though I heard in the very robotic tone that is the caller ID lady House Institute. I quickly dropped my purse and picked up the phone. It was Dr. Goddard and he wanted to discuss Riley's MRI. I found a quiet place in the house a held my breath as he talked.

Dr. Goddard first wanted to make sure that we were aware that Riley has hydrocephalus. Which, yes we are. He then asked if she had a shunt. I said no. He left it at that but, his phone call has had me thinking and googling and reading medical research that some med student probably had to read last night for school.  You know slides that really make zero sense to me but, I am trying!  We've decided to take Riley to see another neurosurgeon for a consult on whether or not she needs a shunt. It's something my mom gut is telling me to do and something I have to do to be able to know I've done everything I should/can for Miss Riley. Neurosurgeons are on my list of people I'd really prefer not to have to see but, we'll suck it up for Riley.  So we have a few recommendations and I'll be scheduling an appointment next week.  Who knows how long it will take to get an appointment!

But, that wasn't really what his phone call was about. Once we got past the hydrocephalus part he gave me the greatest news I had heard in a while! The results of the MRI showed that Riley had no ossification in her ears.  Zip, Zilch, Zero. I was pretty speechless. Now that we know this we just needed the sedated ABR to be completed and then we will be able to proceed with cochlear implants. Bilateral cochlear implants! Now it may sound silly to be excited about this but, if there had been ossification and depending on the severity Riley may have not been a candidate for the cochlear implants anymore. We would have reached the end of what we could do for Riley's hearing.

Early yesterday morning I loaded Riley up along with her nurse and we headed to CHOC for the sedated ABR. This test monitors brain wave activity in response to sounds. We've had this test done before and it was not very promising. It showed profound hearing loss.

We arrived at CHOC and were greeted with toys on Riley's bed and a personalized message from the child life specialist.  It's the little touches that mean the most when your child has to go through any type of procedure.  We waited around listening to Baby Einstein movies on the TV and they took Riley back around 9:30 for her procedure.

Dave met us at the hospital right after they took Riley back and we waited about an hour or so and then we were called in to meet with the audiologist. Deep down I was hoping for better news but, in reality knew what we would hear. Riley still has profound hearing loss and it is permanent. She needs the cochlear implants.  Yes, we would have loved to hear that Riley's hearing had improved but, the reality is that if it had improved drastically it may have knocked her out of being a candidate for the CI's.  Because ossification can occur at anytime and many years post bacterial meningitis even, it is important to us that she has the implants done.  But, hearing profound and permanent when you are a parent hits you in the gut in a way that nothing else does.  It makes me sad that something that came naturally to Riley is going to be something she has to fight hard for now. 

I spoke with Riley's audiologist at House yesterday afternoon.  She is working with Dr. Goddard and we have a tentative meeting with her next week.  It's possible that Riley could have the CI surgery within the month.  They don't mess around!  I am thankful these implants exist and hopeful that they will be helpful for Riley.  They don't guarantee that Riley will be able to hear.  As her mom and as her dad we both feel like Riley does hear something.  Whether or not she is able to process it right now is another story.  There is no denying the fact that she looks our way when we speak and often wakes up when she hears daddy come home or her brothers playing.  So now we pray and hope and remain as positive as possible about the fact that we are making the right decision for Riley.

Today Dave took Logan to his early 5 year old/Kindergarten check up while I took Riley to therapy.   It's so wonderful to have a husband and father who really is a partner in this with me.  Managing a household with 3 kids is hard enough but, the appointments and hectic schedule that come along with Riley's illness make it very hard for one person to get everything done!  I also know that Logan enjoyed the one on one time with daddy!  Logan is 46 inches tall and 51 lbs placing him in the 98/95th percentiles.  He only had to have one shot and was very proud of the fact that he didn't shed a tear!  Now, he's all ready for his first day of Kindergarten next week!

Tonight Logan is headed to his karate studio for movie night and taking along the car he built with Dave last night.  It's a cardboard box that they made in to a car for the "drive in".  Logan is really looking forward to it and we'll get to enjoy some one on one time with Mason and extra snuggle time with Riley before Logan gets home.

It goes without saying that our lives are crazy and chaotic and unpredictable right now.  Through all of the chaos though we try to make our new normal as normal for all of us.  Your prayers, support and notes mean the world and hold us up.  They allow us the strength to hold Riley up and push her forward.  And they remind us that sometimes it's okay to have a bad day or be emotional about something.  At the end of the day though we always remember how thankful we are for Riley's presence in our family and how blessed we are to have 3 kiddos that bring us endless joy. (And make us want to pull our hair out sometimes :)!)  Really that's what matters most!

Have a great weekend and Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley