Tuesday, March 25, 2014

Positivity and Prayers

Sometimes one of the hardest things for us to do (even though we preach that it's what we want to do) is to stay positive and be positive.  It's not that there aren't a ton of positive things going on in our life, it's that saying it out loud or celebrating a Riley milestone makes us nervous. '

I know I always feel that if we're making progress and things are going too well then we're days away from something going wrong.  Almost a year after coming home though we have tons to celebrate and the little girl that the neurosurgeon told Dave would be a "vegetable" for life is defying all odds and proving to us that the faith we had in her was real.

This is a picture montage of Riley defying the odds.  Riley picks her head up UNASSISTED and reaches for her toy UNASSISTED.  This is just amazing!

Since having her "ear" turned on Riley is reacting to her family, her caregivers and to instructions on what to do.  Life has returned to Riley's face and she SMILES!

Back in the PICU days one of the neurologist's who we were drawn to because of his quirky disposition and cautiously optimistic attitude towards Riley told us that once Riley smiles again big things will be ahead of her.  Smiling is a milestone we have waited a long time for!

We met with this particular neurologist on Friday.  For the last time.  He'll be moving back east to be closer to family and has landed a fantastic job in Florida.  Fridays appointment was extremely emotional for me.  Not only because we would be parting ways with a doctor that has been with us since the beginning but, because Riley really impressed him with what she is doing and she SMILED at him.  I truly believe it was her way of saying thanks.  Riley knows who is on her side and who is rooting for her.

The appointment went great.  We're upping one of Riley's seizure meds due to her weight.  It's to be expected.  We discussed an upcoming EEG.  I expressed my nervousness about another EEG.  And he reminded me of all of the positive things Riley has going for her right now.  Seizures are under control (for the most part and in comparison to late last year) and she's making amazing progress therapy wise.  Things that I know. What I was trying to tell him though is that no matter how well things are going for Riley I will always be nervous before a big appointment or test (same feelings I have for Logan and Mason).  It's how any mother would feel really.

After he was done he brought in the Sr. doctor to check on Riley and that's when I really lost it.  We were discussing Riley's implant. He was thrilled that she had it done.  He asked me about ST.  I reiterated that we are getting a new speech therapist because we need someone that can work with Riley on total communication and someone to help us help Riley find her way.  And then... he agreed with me.  And I cried.  Happy, emotional tears.

Riley having the ability to communicate with us is a huge part of WHY we pushed so long and so hard to have her get the CI.  There was a time when another Sr. doctor (in another specialty) questioned me on why we would even consider getting a CI for Riley.  As he put it in her "condition".  It took all I had at that time to hold back and not punch him in the face.   Finally someone else saw the possibilities like we do in Riley.  Finally someone else agreed with me how important it was for Riley to have the CI.  Finally.

This particular doctor could be my grandfather.  My tears legitimately concerned him I think.  He asked me 3 times how I was doing.  And if I was lying to him.  I can laugh about it now but really I wanted to scream that yes I was doing fine and that my emotions came from the fact that I just met him 2 minutes before and he wasn't a jerk, he was positive and it was refreshing.  And he wasn't brushing off my daughter because of her on paper diagnosis (it happens more then you'd think).

We also discussed who did Riley's implant and he was impressed.  He called Dr. Niparko the "guru" in his field.  The entire journey to implantation from our first audiologist appointment until now really was meant to be.  Even down to who ultimately ended up in the OR with Riley in the 11th hour.  Sometimes things do happen for a reason.

Tomorrow we'll be heading back to CHOC for Riley's 2nd Laryngoscopy/Bronchoscopy to remove her granuloma.  Now if things go well, which I am hopeful they will, we'll be in and out of the hospital.

However, there is a chance that they will need to open up her stoma site to get to the granuloma.  If this is the case we'll be in the hospital a few days.  We're really hopeful that they don't need to cut in to her stoma site.  Riley has come so far the last few weeks and my greatest fear is that a longer hospital stay will mess up this wonderful progress we have going.
On the flip side once this granuloma is gone Riley can wear her PMV (passy muir valve) again and we can hear her voice again.  We've only been able to hear Riley here and there when she makes noises over the trach we really miss her "voice".  We want to hear Riley cry, perhaps make sounds and maybe one day say mama and dada again.  She can also proceed with the swallow study once this procedure is done and start feeding therapy.  Right now Riley is 100% gtube dependent.

So even though I'd like to close my eyes and wake up on Thursday after this is all over I have to look at all of the positive things that are to come for Miss Riley once we are past this next little hurdle.  We'll be in the OR early (7:15 am to be exact) and Riley could really use your prayers this time around.  The surgeon knows what to expect and he'll be joined in the OR by another doctor with even more experience then he has just in case.  Even though I know Riley will come out of this surgery just fine the what ifs and the possibility that this may turn in to something more complicated leave us feeling a bit uneasy.

As always thank you for your continued support and prayers!  Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

Monday, March 17, 2014

Birthdays, Baseball and Fun!

The weekend after Mason and Riley's actual birthday we had their Princess & Pirate party.  Fun was had by all and we can't thank everyone enough for being there to help celebrate our Princess and Pirate!  Special thanks to Jen Jen and Casey who were over Friday night and early Saturday to help us set up.  You two are amazing and we love you!

Last week Logan had his first official Tball game.  He was very excited as you can see.  It seems that the whole team is still trying to get used to the positions and concept but, it is cute to watch them all out there being cheered on by family and friends like they are in the pros!  2 of Logan's friends from school are on the opposing teams so we have to have a little pep talk before hand on days that Logan's team plays his friend's otherwise he'll run all over the field to high five and chat with them!

Friday was the Jog A Thon at Logan (and Mason's) school.  Riley was able to come with us to cheer her brother on.  Logan kept going around and around the track during the 1/2 hour time they had. We think he did 12 laps.  There were food trucks, face painting, a cake walk and a dunk tank.  We all had a great time.

Somehow between leaving the school and arriving home we lost Riley's implant.  It was a nerve wracking evening that had me texting whoever I could at the school and had Dave and Logan back at the school in the darkness looking everywhere for it.  To make a long story short it was found.  Before it was found though we were reminded of the goodness in people.  Every person that was still at Sonrise that night stopped what they were doing to help try and find the implant.  A mass email was sent out to all families and I've been told 2 families went back on Saturday to try and look for it in the daylight.  It was nice to not feel alone in our search and the way everyone came together for us is humbling.  So thank you to everyone who prayed for us, searched for us and spread the word.  Now I need to buy something to keep the implant on Riley's head!

This weekend was HOT and Dave wanted to bbq for his birthday so Uncle Scott, Tobin, Uncle Mike, Tia T and Mia were over.  Mia spent a lot of time with Riley.  It was nice that we had a nurse who didn't mind and was encouraging the interaction.  Before they left for the night Mia, Riley and Mason read stories together.

Yesterday we stopped by Grammie and Pa Doug's so we could see Molly and Luke (and of course Uncle Brad and Aunt Kara).  Mason is not quite sure about mommy holding Luke.  He's really in to pointing out babies these days so we're trying to teach him to say baby Luke instead of just baby!  Molly and Logan of course had fun running around together and Molly had Logan playing house.  She made the rules and Logan actually followed them!  They were both sad to part when it was time to head home.

Today Riley had therapy with her DHH teacher.  At the end she made her first piece of art work with a color dobber (just like a bingo dobber).  She let me help her go up and down on the paper and when she was done she was done!  Tomorrow we'll head to the pediatrician for Riley's 2 year old check up and clearance for her surgery next week.

In the meantime we are enjoying the normalcy and routine that we are getting in to.  Of course I am always wating for something to go wrong and really have to remind myself to live in the present and appreciate each day as it comes.

Happy St. Patrick's Day!

Dave, Megan, Logan, Mason and Courageous Riley

Wednesday, March 5, 2014

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.

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 :)

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!

Dave, Megan, Logan, Mason & Courageous Riley