Summertime, patience and the 2014 CHOC Walk

We're definitely in the middle of summer around here!  Most of our afternoons are filled with swimming and backyard time and the weekends are spent basically living in the pool and around the bbq!  We've learned to embrace the fact that we don't get the chance to go too far from home.  And we have an amazing family and group of friends that join us on the weekends to "hang out".  Logan is now a little fish swimming everywhere in the pool and begging to not get out!

We've also been busy with birthday parties, get togethers and 4th of July.

We're still in limbo mode as far as when we will head inpatient to get going on the keto diet.  We'll either be heading to CHOC 7/21 or 8/18.  We are pushing for 7/21.  It's SO SO hard waiting.  Especially since Riley is still having the "S" words daily.  In fact on 4th of July she had a pretty bad one at our framily gathering.  I suppose we've become semi used to them but in the past whenever she's had a series of "S" words or couldn't stop them we were immediately changing paths and finding a solution.  Patience is not my strong suit!

So we're doing what we can for Riley.  Our parental instinct is telling us that these are much more common when Riley is hot, around strangers or away from the comfort of her own home.  It just seems that any of these situations can exacerbate her "S" words.  So we wait and are still hoping and praying that the Ketogenic Diet is what makes a difference for Riley.

In the meantime Riley is working hard!  She is amazing us in therapy and continues to show us that persistence and patience are key when it comes to Riley.  We caught her on video the other day showing us what she could do while in the stander.

Riley playing with her piano

Riley continues to work on new things in PT.

 Spending more time on her stomach.

 Today she was having an "on" day with her visual therapist and was tracking a ton.  She even wore a  "patch" on her strong eye to help strengthen her weak eye.

It amazes us daily what Riley is able to do and when she does something new, no matter how big or how small, we celebrate.  She's making this progress while waiting to take care of the "S" words and being heavily medicated.  Riley is a mighty fighter and gives us strength on days when we feel like we've had enough.  Just one snuggle session with Riley can cure anything!

We are also happy to announce that we will be participating in the 2014 CHOC Walk.  Last year our little team came in 5th place overall and Pa Doug was 2nd place overall for individual participants.  Made me super happy especially since we joined in late August and had no idea what we were doing!

Well now we're veterans!  Haha.  Not really but, we know what to expect.  So, will you join us?  Whether you are in the So Cal area and can join us by walking on Sunday October 12th or live elsewhere and want to help support our team.  We will be changing things up a bit and doing some creative fundraising ideas in the next month or so.  I'm still putting everything together and will share soon what we're hoping to do.  We'll also have a new fresh batch of "Team Riley" shirts available in the next few weeks.

I'm sure I said it last year but it's worth repeating.  From a very young age my parents taught my brother and me the importance of giving back.  I had always wondered what my "cause" would be and what I would be drawn to.  Through Riley's illness we have been drawn to giving back to CHOC.  Eventually, we hope, that Team Riley can do even more beyond CHOC but it will be a while before any of my crazy ideas get off the ground!

CHOC and the PICU teamed saved Riley's life.  The feelings of gratitude we have for the care Riley received are hard to verbalize.  To this day, as you know, most of our doctors are through CHOC and we are frequent visitors to the hospital.  We feel "at home" at CHOC.  Just one visit to another hospital and we are reminded of why we are so thankful to live near CHOC.  Shoot the valet guys even know me by name and are always there to greet us no matter if we're coming for an appointment or for a short stay.

To join us in walking you can click the link below and it will take you to the Team Riley page.  The minimum amount that needs to be raised in order to walk is $50 by October 12th.  The money can be raised through donations or paid directly to CHOC the day of.  We hope to see you there!
Join the Team Riley CHOC Walk Team!

We'll have our individual pages set up in the next few days.  I will include the links next time.  We'll all be walking in support of this great hospital and hope that Riley will be able to join us this year!  (Last year, much to our disappointment, Riley was inpatient and unable to walk).

Fight On!

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

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

CHOC Walk-Post MRI

Well we made it through the MRI and Riley was a rockstar!  She seriously amazes me.  Sometimes I have to remind myself to keep the faith when it comes to big appointments and exams because Riley often does much better then I expect her to.

I really did not want her to have to have the MRI done under sedation as she'll be having the sedated hearing test next week.  Thankfully, Riley cooperated and was pretty still during the exam.  I was able to accompany her back to the MRI room and sat with her during the entire 1 1/2 hour MRI.  Half way through the test the technician called the ordering doctor to make sure that they were getting all of the images they needed.  I really appreciated how thorough she was and even though it added a few more minutes on to the MRI it was nice to know we wouldn't have to come back for a few images if some were missed!

MRI machines are loud as you know but, Riley wore her little head phones and I held her hand and patted her belly the whole time.  I also just kept encouraging her, talking to her and praying for good results.  Once it was over I  looked at Riley wanting to breakdown and cry.  Really it was from relief that we made it through the MRI finally and of course nerves related to what the MRI would show. But, our little fighter proved to me that she can do anything.  Now to wait for the results.  I am not sure if we'll have a reading before the sedated ABR or if we have to wait until after.  I've mailed the CD of the images to the doctor at The House Institute and now we wait.  We'll keep you updated!

Thursday Riley had therapy and picked right up where she left off the week before.  Holding her head up, moving it from side to side and enjoying a walk around Casa Colina in the stander.  We're starting the process to get a permanent stander for Riley so hopefully our insurance doesn't take too long as  we had to return the stander we have been using to the manufacturer today.  I'm crossing my fingers that we can request what color we want.  The stander really has been good for Riley and she loves it!

Really mom.. more pictures!

Friday was a busy day.  I had planned to take Riley to therapy and then to CHOC for her pulmonologist appt with the nurse.  Early Friday morning we had a call from the nursing company that Riley's day nurse would be out sick.  I'm learning that things will never go just as planned.  So, we jumped in to plan B.  Logan and Dave joined me and we took Riley to therapy and then to CHOC. 
Because we had some time before the appointment we treated Logan to lunch in the CHOC cafeteria.  He thought it was the coolest thing ever.  Logan kept asking what floor Riley was going to be on.  I think it's good for him to see that just because Riley has an appointment at CHOC it doesn't mean she'll have to stay the night!  Although, he was a bit disappointed he couldn't go to the playroom!  It's funny to me the little things that he remembers about Riley's first few days at CHOC back in December.  Thankfully, it seems we did some things right and he isn't stuck on the traumatic memories but, the happy ones he had from those days.

While we were eating lunch there were fliers on the table for the CHOC Walk.  Of course I soon as I saw them I knew we'd be forming a team and participating.  We'd love for you to join us.  We'll be Team Riley of course and we'll proudly be walking to support CHOC on Sunday October 13th.  The walk takes place at Disneyland and if you want to join us and don't have a shirt please let me know so I can get you one ASAP.  Here is the link to sign up.  We've talked before about ways that we can give back and this seems to be the best way right now to do something!  Plus it's a walk through Disneyland filled with characters everywhere and before the park opens!
http://choc.convio.net/site/TR?team_id=1402&fr_id=1040&pg=team (I left the typed out URL in the link because the link hasn't been working for me!)

Saturday morning Uncle Mike and baby Mia came over for a breakfast play date.  Mia and Mason were hilarious together.  Riley was able to hang out with us in the family room in her highchair while she had her breakfast as well. She was also able to be around all of the commotion.  Trust me those 3 were loud!  I know she loved it and so did her brothers.  We're thinking more PJ/breakfast play dates are in our future!

Silly picture.  Mason's look cracks me up!

Hey girls!

Mia was too cute trying to reach Riley's hand.

T-R-O-U-B-L-E

Sunday morning we were able to pack up and head out for a night away.  My mom stayed with the kiddos and we enjoyed lunch/dinner in peace and time together!  My mom and dad also took Logan to his first golf lesson on Sunday.  He's still unsure of having to wear a polo shirt every time but, he had a great lesson and can't wait to go back.

Today Riley was busy with visual therapy, PT and ST.  During PT Riley lifted her head and practiced rolling.  The therapist had her on a slanted wedge and with the help of gravity Riley would roll down the wedge.  One thing that I noticed and so did Riley's nurse was that when she was on her tummy she was moving her legs like she was trying to crawl and moving her arms trying to grab at the sheet they put down.  It was like she was trying to put the two movements together and crawl.  If I hadn't witnessed it myself I wouldn't have believed it.  It's things like her improvement in PT and seeing Riley in action that really keep me going.  I quickly called Dave and my mom to share this new "thing" Riley is doing.  When I dropped her back off at home I whispered to her that all her hard work IS paying off.  We're really proud of Riley.

Tomorrow we head to the neurologist.  Those appointments are always real fun....  Hopefully, we'll have some positive news.  I've spoken to Dr. Ghoush a few times recently in regards to Riley's startles and possible seizures and he upped her phenobarbital a little bit just to be safe about a month ago.  We'll likely discuss that and see if it needs to be upped again.  As she grows her meds have to be adjusted to her new weight and of course changed if Riley has had any changes.   I will also be asking him if he can look at Riley's MRI since it will be in the system.  From our glances it doesn't look like they focused on any of her brain but, it's possible they did and we just have no idea what we are looking at!  Perhaps he can give us some insight as to what we are looking at? 

Once we get through tomorrow we have a wonderful weekend to look forward to!  Uncle Brad, Aunt Kara, Molly and baby Luke are moving back to CA this week and we plan on having a family get together with them on Saturday.  It will be the first time we get to meet Luke!  I can not wait to hold him! And to see Miss Molly!  Logan and Molly together is a riot.  Now that Mason is keeping up with the big kids I am sure they'll all cause some trouble together.   We'll also celebrate Uncle Brad's birthday that was earlier this week!  Happy Birthday Uncle Brad and safe travels!  We can't wait to have you all on back on the west coast!

Fight On!

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

MRI Day Take 2

It's MRI day take 2 today.  Even though I shouldn't be I am a ball of nerves.  Riley is moving around so much more rolling, pushing things out of her way so I am not sure she will stay as still as she needs to.  It's funny though because I am so happy and proud of her yet, her improvements are complicating things!  She's not having the MRI done under sedation and of course I am second guessing if this was the best route to go.  So we're heading to CHOC in a couple of hours and I am crossing everything I can that the MRI is completed without any issues.

We had a busy weekend which allowed us to be distracted from the fact that this week was MRI week.  Oh and next week is the sedated hearing test and the following week is a visit to the neurologist.  I think I am going to re name August the month that keeps me up at night!  It's just jam packed with important appointments on top of the various therapies Riley has.

This weekend Mason had his first big boy haircut!  Poor little guy had the craziest hair and it was starting to grow in a million different directions.  So Saturday afternoon we took him to SportsClips and took care of the craziness.  I'll admit I was a little hesitant and wanted to let it grow a little bit more.  It just feels like a first haircut is one of the last things you do with your child as a "baby"!  He was so calm during the whole thing and the lady that cut his hair did a fantastic job!  Now to get used to the big boy haircut.  Thank goodness he still likes to snuggle.

Ready for his haircut!

Smiles

Such a big boy now!

Saturday Riley was able to tolerate her stander with us in the family room.  Logan had cartoons on in the background and it was cool that Riley was actually turning her head to see the TV!  I also had Riley show daddy all of the things she can do now like holding her head up and moving it from side to side.  Dave was very impressed!  Heck I am very impressed.  I really think that the goals I have set with many of her different therapists are realistic.  I just have to constantly remind myself that we need to look at Riley's development from an infant standpoint not a toddler's.  She's basically starting all over again.  But, just like she did the first time she is now learning the things that come naturally to babies.  Riley is working so so hard and it really is paying off.

Looking at the TV.  It's much more interesting then mommy!

Sunday Dave and Logan headed to the Angels game with Grammie and Pa Doug.  Logan has talked non stop about the Angels since going to his first game with his friend Ryan a couple of months ago.  It was an afternoon game so it was a little hot and Logan only lasted 4 or 5 innings but, they all had a blast!  Now, to get Logan to a Dodger game as Uncle Brad isn't very happy that Logan is going to the other side and rooting for the Angels!

We're back to therapies and summer craziness around the house!  Thankfully, Hannah is back from her family vacation.  I knew the boys' missed her when Mason almost jumped out of my arms on Monday to Hannah. 

Thankful for these 2 that keep me laughing!

We hope you are all having a great week!  I'm hoping that after today I can relax a little bit until the next critical appointment!  One day at a time, one day at a time....

Fight On!

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

Miss You Can Do It

There is something powerful about the Internet.  Whether, it's been my Dr. Google searches or connections made with people I wouldn't know in everyday life the internet has amazed me.  I am however thankful things like facebook did not exist when I was in high school or college.  I can not even imagine how dramatic my posts would have been.  And now as an adult and mom I am thankful to have these things to connect me to people I have lost contact with and information I would have had to have spent hours at the library searching for.  Technology can be good!

We've had support and messages from so many people from so many different periods in our life and every message, note, text has meant the world to us.  When I first decided to start journaling Riley's story it was more because I knew I didn't want to forget what we were going through and even more so that our extended network of family and friends could keep up on what was going on with Riley.  What I didn't know was the impact it would have on us as parents struggling to make it to the next day.  The impact a simple message or call would have on pushing us through the darkest moments and the impact a note leading us to something we may have missed or not realized would have on us.

The other night, I finally looked up a documentary that one of my sorority sister's so sweetly wrote me about.  It happened to be on HBO and when Dave did  a quick search the other night we found that it would be airing at 9pm so we scheduled it to record.
Miss You Can Do IT

As the night progressed it just so happened that Riley was ready to be held and snuggled at around 915 which meant we could watch "Miss You Can Do It" together.  I cried ugly tears through the entire show.  I laughed.  I kissed Riley.  I told her she would be there one day.  And I felt a weird sense of calm.  Seeing these young girls with CP , and Abbey Curran who won Miss Iowa in 2008 as a young woman with CP, I cried and yet, felt hopeful. 

These young girls were all beautiful in their own ways and Abbey has made sure they have a place to be celebrated.  There are good people in this world.  Riley will be ok.  She has a network of family and friends that LOVE her NO MATTER WHAT and really that is all that matters.  But, conversely she will also have opportunities like the Miss You Can Do It pageant because there are people in this world that don't discount children/adults because of their disabilities, instead they enourage them and their talents and always recognize them as human freaking beings.  I cried because I want Riley to always know she is respected and always know that we as her parents are here to give her the world.  Just as we would do if she hadn't been sick.  The documentary is still airing on HBO and I hope if you have a chance to watch it you are as touched as I was.

Riley had a good week with a few set backs or rather hiccups. Tuesday Riley was able to get her botox shots and she took them like a champ.  Just a little bit of crying but, nothing too bad. Uncle B-Rad was also in town and came to visit and have dinner with us.  He was out to finalize clean up of their house which means we are super close to my brother, sil, niece and nephew moving back home!  I can not wait!  I am so anxious to snuggle baby Luke and squeeze Miss Molly!  August 14th can't come soon enough!

Patiently waiting for botx.  So relaxed.

Silly boys

A hello hug from Uncle Brad

Cheese

Wednesday Riley had a great PT session and once I am able to upload some of the videos I took I'll be able to share what she is doing.  To see her roll and pull her head up on her own is encouraging.

Thursday we headed to the GI clinic at CHOC to have Riley's GI tube changed.  It had been over filled and was difficult to pull out so the call was made to have it done in clinic.  Thankfully, all went well and we were able to head over to the Radiology department to schedule Riley's MRI right after. The MRI will be looking at her ears specifically to see what damage has been done and provide the surgeon a map if Riley still is a candidate for the cochlear implants.

Sweet snuggles with daddy

Friday at PT we met with the rep from the DME company that had a stander for Riley.  I never knew what this was before a little research but, Riley LOVED it!  This apparatus will help Riley "stand up" and she tolerated it so well.  Hopefully, we can get our insurance to approve it sooner rather then later.  For now we are using a loaner stander.  We also ordered a bath seat for Riley and the rep informed me that we could use it in the pool as well.  Because of Riley's trach we have to be really careful with bodies of water.  I think if we can figure out how to use the bath seat in the pool Riley will love it.  It's no fun being inside while everyone else is enjoying the pool! 

Getting strapped in

All set up!

We had a calm weekend and Riley had lots of snuggle time.  We're becoming a bit concerned about seizure activity and what constitutes a seizure or what type of seizure would be concerning.  I have a call in to Riley's nuerologist to see if we should see him sooner and my gut is telling me to ask for an EEG.  I am hoping and praying that if these are seizures they aren't causing any new damage and that they can be regulated with a meds adjustment.  We knew they were inevitable but hearing my baby is having a seizure is stressful.

Testing the stander out at home.

Mason was very curious about Riley's new accesory

Riley's days are crazy.  There is no certainty in Riley's life.  All we know is that we are doing whatever we can to provide her with what she needs.  As a family that is all we can do.  Life is what it is and sometimes you learn you have to roll with it and change what you do to accomadate what the world throws at you.  With all of that being said we continue to believe in our pretty pretty princess.  And we Fight On.

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