Decisions

Somehow I blinked and my first born was ready for Kindergarten and my babies were 18 months old! 

I looked back at my post about the twins 1st birthday.  So much hope that we would eventually have Riley home with us.  And now we do.  So much faith in the fact that Riley would progress and she is getting there with baby steps.  A lot can happen in 6 months! 

Mason is growing like crazy and has really developed quite the personality!  He's all over the place, wants to do whatever Logan is doing and gives the best kisses and hugs. Life is okay.  We're okay. And we're all together.

When I put everything in to a timeline it really drives home just how far we've come.  I remember really wanting to throw a big party for this day.  A party that replaced the lack of big party for the twins 1st birthday.  Now, with a more clear mind I realize that instead we need to focus on big bros big 5th birthday coming up in a few weeks and just appreciate the day for what it is and what it means for the babies.  And I am going to really try to appreciate the next 6 months as our babies aren't really babies anymore!   As soon as the Batman 5 party comes and goes (Logan has had his theme picked out since the day after his party last year) I'll be in full planning mode for the twins 2nd birthday! One day at a time.

We've been counting down the days, practicing and writing our letters and Logan has asked us a million times about the first day of Kindergarten.  Yesterday, was THE day.

So grown up!

Posing

We kept Logan in his preschool program over the summer to give him normalcy and activity during the week while we were busy with Riley and Mason.  I know it was a good decision because the one week we tried just sending him for 2 days nearly drove all of us crazy!  Logan is social and active and the summer program was really good for him.  As some of his classmates started having their last days at preschool Logan would declare they were already in Kindergarten.  So since the beginning of June we have been hearing about so and so's last day and how they were already in Kindergarten.  Kid cracks me up sometimes.  He had to have cupcakes for his last day last week.  According to Logan everyone else did.  I still am not sure I believe him but, you best bet he showed up with cupcakes on his last day!

We've made a big deal about this transition and have tried to make it really special for Logan.  Sometimes, being the older brother, especially to twins, one of which has very special needs can be hard.  We try to remember that Logan is as affected by Riley's illness as we are and that his feelings and emotions about everything need to be heard.  Doing big brother things with him seem to help when things get tough.

Tuesday night we let Logan pick out a restaurant he wanted to go to for dinner.  Of course he picked BJ's and wanted to use his gift card he's been saving since Christmas.  We had a nice dinner and headed home for pj's and stories as getting up at 645/7am is going to be a challenge for Logan!  Heck, getting up is going to be hard for mommy!  We've really gotten used to sleeping in until 730/745 everyday. 

Yesterday morning Logan got in the shower a bit sleepy eyed but, ready for his big day!  We took the obligatory 1st day pics and headed off to school.  It was the first day for Kindergartners only.  Brilliant idea in my opinion.  The kids met the teacher, had a tour of the school, learned about various areas in the classroom and socialized with one another.  About half of Logan's class is made up of kids who he went to preschool with so he was right at home.  His "buddies" are in his class as well.  I have a feeling they are going to keep the teacher on her toes...  In a good way.

Over the mamarazi!

We both really enjoyed the morning with Logan and I feel confident in our decision to send Logan to Kindergarten and Sonrise.  I honestly left the parking lot and let out a big sigh of relief.  It's going to be a great year for Logan!

Before we could start our pre Kindergarten festivities Tuesday we had an appointment at the House Institute to meet with the audiologist and discuss moving forward with Cochlear Implants (CI's).  I've been really impressed with the audiologist we are working with and have really clicked with her.  She's fantastic with answering any questions we have and replies to emails within hours not days like some people!  Dave had not been to House before so I am happy he was able to come and see everything in person for himself.

We are proceeding with the CI's.  The time table is anywhere from 2-6 weeks from now.  I really wish we had a more definite date but, there are  many factors playing in to this happening right now.  The anesthesiologist at the hospital House uses is not comfortable taking Riley's case.  In all reality he is right.  She really needs to have this done at a Children's Hospital.  Problem is only a few of the doctors at House have rights at Children's and CHLA isn't making CI's a priority right now.  See many factors....

We also need to decide which device Riley will get.  There really isn't that big of a difference between the 3 that are offered but, remember we are making a decision for Riley about something she will have for life.  So, we saw the devices in person, touched them, discussed them and had a full explanation about how they work.  Because CI's are so new (30ish years old) we are really trying to pick a company that has a solid financial backing, spends money on R&D and will be around for many years to come.  We also want a company that is going to continually try to improve what they already have.  We all know what technology has done in the last 30 years and I can only imagine where it is going.  Decisions, decisions, decisions.....

I am pretty sure we're in agreement about which one we're going with.  If you've had a CI or know of someone who has had one I'd love to hear what you have to say about the implant.  Which device is used and the Pros/Cons??  

Now we wait and hold our breath and hope that CHLA agrees to take Riley's case!  If not we'll be looking at moving the surgery to either UCLA or Rady in San Diego.  Both fantastic hospitals!  There are pros and cons about both and I think we'll discuss them if we need to in the near future.  For now I just hope we can get this done soon.

Riley's back at work in her therapies and in between doctors appointments and time to rest she is working hard.  She'll have a swallow study done in the next few weeks and after a joint appointment with GI/ENT/Pulmonologist in mid September I hope we can get a bronchoscopy scheduled.  The coordination to get anything moving forward for some of these procedures is mind boggling.  Thankfully, one of the administrators at the ENT's office put a bunch of pieces of this scheduling puzzle together for me and I think we're on the right track.

Yesterday she had a little photo shoot for some promo materials for the nursing company we use and I am excited to see the images.  Hopefully, they were able to get some decent shots.

We're looking forward to the long weekend and saying goodbye to summer, although this horrible heat is probably here to stay. 

We'll kick the weekend off tonight watching the Trojans take the field against Hawaii.   I'm a bit of a freak about USC football.  Hence the Fight On reference!  We're hoping for a great season around this house! Dave's just hoping I don't wake the babies with my cheering tonight. And yes, you may be seeing a few pics of my kiddos in their USC gear here and there!

 

Logan tailgating with mommy!

 

Cheese!

 

Love the look on Mason's face!

 

Our pretty princess

 

This photo cracks me up everytime I see it.

Next week we'll continue what we've been doing, get adjusted to our new "school year" schedule and continue to move forward fighting on for Riley.

Don't forget to sign up for the CHOC Walk!  I'm sure you'll all be annoyed with my reminders but, hopefully if you want to be there you'll appreciate them.  I've been so happy to see the team grow and we're looking forward to it.

Fight On! and beat Hawaii!

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

Family Time

 

I think our weekend can best be summed up with some pictures! 

Friday morning PT!

Resting on her knees in a squat position.

 

Friday afternoon lunch date with mommy!

 

Hi sissy!

 

Want my shoe?

 

Or perhaps my recorder?

A smile with kisses from big brother!

 

Cartoons with my 3 babies!

 

Hey there Luke!

 

Cheese!

 

Kisses for baby Luke!

 

Sweetest sleeping baby!

 

Sleeping on Grammie!

 

Pool time!

 

Cheese!

 

Love him!

 

Chillin with Pa Doug!

 

Mmmm... Smores!

 

Outside with mommy!

 

Trying to get a cousin pic!

 

Sassy cousins!

 

Happy Birthday Uncle B-rad!

 

Cousin pic attempt #1

 

Cousin pic attempt #2

 

Cousin pic attempt #3

 

Cousin pic attempt #4

 

 

We had a wonderful weekend filled with family.  Riley did great in PT on Friday and also had Visual Therapy and ST.  She was tired Friday night!  I always worry about back to back therapies but, in all honesty I think she NEEDS it!

 

Saturday morning we continued our new tradition of having family time together around breakfast.  The boys are loving it and so is Riley.  Mason brought her one of his shoes and his recorder.  It's cute when he's trying to share.  Logan gave Riley lots of kisses and her happy smile was very evident.  Before Mason's nap all 3 kids watched some cartoons together.  It was the start of a great day.

 

Saturday afternoon Uncle Brad, Aunt Kara, Molly and Baby Luke were over for a bbq along with Grammie & Pa Doug.  I know we all loved every minute of the afternoon.  Luke is so cute and snugly and I really enjoyed the baby squish!  Molly is adorable, talkative and hilarious.  She had Logan in check!  Seeing Logan and Molly and even Mason play together was priceless.  Molly and Logan cooked  smores over the fire after dinner and Mason couldn't get enough of the marshmallows and chocolate.  Riley was able to hang out with us and we even attempted a cousin pic.  Harder then it looks!  I'm hoping my mom or Kara got some better shots.

 

We can't wait to see them all again!  And with the McEachern's back in CA it will be  much easier to make that happen!

 

Yesterday we recovered from our weekend and prepared for the week.  Sunday nights are always very anxious for me and I usually don't sleep much.  I always worry about what the week has in store for us and hope that I've put everything in to place!

 

We started off the week with a visit from the communication specialist from the school district.  She'll be coming Monday mornings to work on skills with Riley and our family.  Today I wanted Logan to be involved and learn a few signs.  Since he'll be headed to Kindergarten (did I really say that?) next week I figured today was a great day to get him involved.  He learned "twinkle, twinkle little star" and I'm anxious to see how he does signing and signing to Riley tonight.

 

Riley is doing well.  She hasn't had any noticeable seizure activity over the weekend.  At least nothing that required her to have any Ativan.  She'll be busy this week and we'll be up bright and early Thursday morning to head to the sedated hearing exam at CHOC.

 

Speaking of CHOC.  I know it may have been confusing but, if you'd like to join us for the CHOC Walk please use the link below to register for Team Riley.  I've been told this event fill sup fast and I don't want to miss out on having as many people as possible there to walk along side our little fighter.  It does not cost you anything to register.  They ask that you raise $50 and if you are unable to do it before the walk you just pay the $50 the day of.  You'll get a shirt and a few other goodies.  Children under 2 do not have to register.  If you want them to get a shirt though you'll need to.  Tickets to Disneyland are NOT included but, they will be selling discounted tickets that day.  We really hope you can join us on October 13th!  If you have any questions feel free to email me!

 

CHOC Walk

 

Again thank you for your prayers, thoughts and words of encouragement.  This road is not an easy one and I don't think it will ever be.  We try to do our best for Riley and for the boys.  I think we're doing ok but, there are days that leave us defeated and down.  We've learned to let those days come and go and re focus our energies the next day.  Our focus right now is on making this new normal as manageable for ALL of us and making sure all of our children know how special they are to us.  We have to remember that for every bump in the road there will be a great milestone or advancement.  We've already seen it happen a few times.  For Riley and Logan and Mason we have to Fight On!

 

Love,

Dave, Megan, Logan, Mason and Courageous Riley!

 

 

Neurology appointments suck.

Yes, I am sure there is a more PC way of saying it but, in reality they are just awful.  I don't care who you are.  Perhaps you've sat with a neurologist as a patient, a parent or a caregiver.  Perhaps you've been lucky to not have to be in that situation.  I'll just warn you now.  A neurology appointment never seems to end with puppies and rainbows.  More often then not you'll leave feeling defeated and that skip you had in your step will be squashed.

 The funny thing is that Riley's neurologist is a fellow who started his fellowship weeks before Riley landed at CHOC.  He's around my age +/- a few years and we get along.  He's quirky in a good way.  He talks to himself.  We actually like this about him.  He reminded me today that it was just the way he is.  Promised me he isn't crazy.  I know that.  We know that.  The bottom line is he is a neurologist, he picks up on any little idiosyncrasy even if it is just a normal thing for your kid to do.  He stresses me out!

We started off the appointment a tad chaotic as I pulled in to the wrong parking lot and forgot where we were going.  By now you'd thing I knew what I was doing.  Well sometimes I just don't!  Thankfully by the time we got to the appointment 10 minutes late I realized the doctors weren't even in the building!  10 minutes later they walked through the door so I knew our appointment wouldn't be bumped. I guess lunch ran long?  + 1 for mommy!

Riley was weighed and measured.  Almost 24 lbs and 30 1/2 inches and then we waited and waited and waited.  I had Riley's nurse hold off on her feed for fear she'd puke on the doctor and the longer we waited the more annoyed Riley became.

I went over all that Riley has been doing with the doctor and he was thrilled.  And then she started the startle/mad motion.  It's something we've learned that she does when she is unsure about someone, mad or just waking up.  Well she did it twice and he paused both times to take note.  And then he left the room.

He came back with the attending/senior doctor and the first words out of that doctors mouth were you need to go to the ER.  Cue crocodile sized tears in my eyes.  Really.....  I then asked what they would do in the ER and reminded him we had Ativan at home and basically gave him the look that said a trip to the ER is not going to do any good for Riley... and you know it.  Without me having to say anything he recommended that we just head home, give Riley Ativan, get a script for something stronger just in case and return to the ER if we notice any extreme seizures lasting longer then 5 minutes.  I was numb.  Truly not what I expected.

So we now have an EEG to schedule, phenobarbital levels to be checked and nerves that are wrecked.  I asked him flat out whether these type of seizures would cause any new damage and he reassured me that they wouldn't.  Now we wait and follow up with him in a month.  And all of the brag book milestones I was rattling off are probably lost amongst his "other" notes.

We left to head back to our car and I was sad.  As we got back to the CHOC valet I heard "hey what is Riley doing here?" and turned around to see Dr. Irwin.  If you don't recall we love her!

We had a brief chat about our visit and I will only say that I left feeling a 100% better.  It's weird but, how did we cross paths at that exact time?  I think that out of all of Riley's doctors Dr. Irwin knows her better then any other doctor.  There is a difference between seeing a patient once every 3 months and spending 65+ days rounding on a patient.  Period.

So we wait.  Today stunk.  Riley still rocks.  And she could really use your good thoughts and prayers!

Fight on!

Love,
Dave, Megan , Logan, Mason and 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!