Wednesday, August 14, 2013

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! (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.

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!

Dave, Megan, Logan, Mason and Courageous Riley!

1 comment:

  1. What a courageous little girl (and mama!). Riley will have to share her keeping still through the MRI tips w/myka!!