Hospital Day 4!

First, we have to thank ALL of you.  Sometimes I feel like we ask so much of you all.  For prayers, thoughts and support.  And every single time you are all there to hold us up.  My friend Kristi always describes the support they receive while on their journey with their daughter as their village.  I can truly say you are all our village.  Today has been an extremely emotional day due to multiple things.  We are happy to say though that our Little Miss has once again amazed us and is doing well.

This morning Riley's heart rate was all over the place.  I think for 2 hours straight she kept the monitor beeping every few minutes.  She was sleepy so a lower heart rate isn't unusual but, this was the type of sleepy that comes in the middle of the night.  Even when I tried to annoy her, for lack of a better description, she still stayed in the low wonky heart rate range.  Kept this mama on my toes and of course had me fearing the worst.  Just a natural reaction I suppose.

We had the sweetest nurse the last 2 days, quite the cheerleader for Riley in fact.  Even she was worried.  The attending pediatrician came in while Riley was messing with the monitors and had the "room" (techs monitoring the continuous EEG) check to see if there was any correlation with Riley's weird HR and her EEG.  Nada.  So, she ordered an EKG.  All along we have been so happy that all of Riley's major organs function fine so the worry that overcame me when I thought of the what if's was huge.  Deep down though I really thought it was probably just because of all of the medication in Riley's system.  Like I said last night she is sleepy!!!

EKG was normal.  Labs.  Well labs showed her Depakote level at 62.  Yeah 62.  We were not expecting that.  Last night they were at 136.  They are aiming for a level between 100 and 125.  So we have a ways to go....

Riley's seizure activity has calmed down.  The only thing showing on the EEG is a very small electric seizure that is not having an effect on her outside her brain.  Sort of like electric charges here and there.  I asked if these would have any long term effect on Riley and the general answer is no.  Riley has brain damage.  She has areas that will have this type of activity because of what she's gone through so... I suppose this is the best case scenario???  I mean they've figured out how to control the infantile spasms (IS/ACTH) and now the tonic/clonic seizures (Depakote) so I suppose we should be happy????

My biggest gripe with these meds is the state Riley is in right now.  Tired, sleepy, lethargic.  And I told the neurologists point blank that I really hope this isn't how she will be moving forward.  I've been promised she will get used to the meds.  And they have been super loading her to get her levels up so it is to be expected.  I can't stress enough that for Riley to progress she can't be this way.  And for Riley to live in life she can't be this way.  I believe I used the term "quality of life" and "future" multiple times today.

I still know deep down that most of these doctors don't see much potential in Riley.  I mean if I tell them she's smiled, rolled, held her head up etc. they still look at me like.........crickets.  I really should have busted out the video today.  Too many other things on my mind though!  And I'm ok with this.  She's already amazed them so I have faith she'll continue to do so.  It's just what she does :)

This is where the nurses are little angels.  They see these cases so much and have been able to tell us what happens after seizures are controlled.  And, they see progress.  Even the attending neuro I spoke to today agreed that a bit of regression therapy wise was expected but, Riley should pick right back up where she left off.  So maybe, just maybe, I should give her a bit of credit for being semi positive.... Most doctors with "neuro" in their title just aren't positive.  That's just the reality of what we've dealt with. 

So, because the EKG was good and because we are just waiting now for the med level to get to where it needs to be Riley, got to get the head wrap off.  Problem is that thing is HARD to get off!

I worked with the tech first to get the electrodes off (took some tangle spray and waterless shampoo) and then let Riley's hair soak in the detangler.

Once that set in for a bit we gave Riley a bed bath and I worked on each electrode spot one by one to get the gunk out.

For the most part Riley's hair is gunk free but, it will probably be a bit before it is all completely out.

Riley's looking better and her swelling is subsiding.  Now we pray, hope and cross all of our crossables that tomorrow is homecoming day!

Thanks again for your support!  And remember to hug those you love and tell them you love them tonight.  We've been reminded how precious life is today and we're thankful we still have Riley here to fight for.  It's something we will never give up on....  Ever.

Fight On!

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

Week 1 of ACTH and a Giveaway

We're home and man is it nice!  Riley's meds arrived an hour earlier then scheduled Tuesday at 9:30am.  They were sent from Tennessee so I was a bit worried about them making it in time but, UPS came through!

Tuesday morning was a bit hectic as Logan had Grandparent's day at school so we had to put a plan in place to get all the Grandparent's to school and make sure someone was home to sign for the medication.  Thankfully, everything fell in to place and the timing worked.  Grandpa and Grandma Hopper were able to bring Dave down to the hospital to meet us and we were ready to go around noon.

Riley is still doing well.  I know she is so happy to be home.  Her agitation last night wasn't as severe as it was in the hospital and I am hoping that continues.  She's starting to get a bit puffy and swollen.  Hopefully, this will only last for the first 2 weeks that she is on the higher dose of ACTH.

I was hesitant to write this (fearing I'd jinx it) but, in the last 36 hours Riley has only had one small seizure.  ONE!  Yes, I am yelling.  She's only been on the ACTH for 1 week so this is fabulous progress!  It means the ACTH is working!!!!

I thought I'd explain a bit about ACTH and what it is doing.  It is amazing to me the things that are available now that weren't available just a few years ago.  I've pulled some info from the pharmaceutical company and Infantilespasmscenter.org.  .

From Infantilespasmscenter.org:
"According to the American Academy of Neurology (AAN) and the Child Neurology Society (CNS), the goals of therapy for infantile spasms (IS) are: [3]

• Completely stop the spasms
• End hypsarrhythmia (chaotic brain waves)

Many studies show that when hypsarrhythmia (chaotic brain waves) lasts for long periods of time, brain development can be damaged. However, when babies with IS are treated early in the course of the illness, they may have a better outcome.[3]

Hormonal Therapy

ACTH (Acthar)

ACTH (Acthar) is a prescription medication that may work by helping the body produce natural hormones such as cortisol and by having a direct effect on the brain. It is in gel form and is given as an injection into the muscle. The gel is designed to slowly release the medication into the body after it is injected.
ACTH (Acthar) is a prescription medicine that is used to treat infantile spasms in infants and babies under 2 years of age.[8] (Acthar Medication Guide) In one clinical study, 87% of subjects who received ACTH had no spasms and no hypsarrhythmia within 2 weeks.[7] (Acthar Prescribing Information, 2010)
The recommended dosage of ACTH (Acthar) for treating IS is 150 units per meter squared, divided into two daily injections of 75 units per meter squared each. After two weeks of treatment, the dose may be gradually lowered over a two-week period and then stopped.[7] (Acthar Prescribing Information, 2010) If treatment is successful, the spasms and hypsarrhythmia (chaotic brain waves) should disappear.


And from the pharmaceutical company:

Acthar Is Not a Steroid

Acthar is not a steroid. It contains the hormone ACTH, which stands for adrenocorticotropin ("a-DRE-no-cor-ti-co-TRO-pin"). Acthar is a highly purified preparation of ACTH in gelatin.

How Acthar May Reduce Inflammation

Acthar works in 2 ways:

• Directly with your immune system and central nervous system and with your body to help it produce its own natural steroid hormones (cortisol, corticosterone, and aldosterone)
  • These natural hormones may help reduce inflammation causing your relapse
• Acthar is believed to affect T cells and B cells
  • This action is believed to impact the inflammatory processes

If this doesn't work which we are praying that it does there are other treatments available.  ACTH is the first drug to try though.  So now we sit back and watch this medicine do it's magic.  It's going to be a long 2 weeks until our next EEG!

I have two exciting things to share with you all today as well.

The first is that one of the first doctors that was a part of Riley's case from day one is going to be doing a case study on Riley's missed diagnosis and treatment etc.  Why is this exciting you might ask?  For us, as parents, the one thing we've hoped to eventually do is educate either families or doctors about Febrile Seizures, signs of bacterial meningitis and ways to diagnose it early.  Those 24 hours that we lost were so precious. And can't be given back to us.  When she asked if we would consent to her using Riley's case I couldn't say YES fast enough.  If just 1 family is saved from this heart ache, if just 1 child is diagnosed properly because of what this doctor is doing we will feel like we've made a difference.  And, because we are human, hearing that a doctor is seeing things the way we have from day one was vindicating.

So we're excited to see what becomes of this case study and we'll anxiously await the presentation in February to a conference of 500+ doctors!  We've been told we can attend the presentation.

I also want to invite you all to enter a little giveaway.  I've never done this but, after all of the support we've received and after such a successful CHOC Walk, we figured it was time to give back.

So......
We'll be giving away.........

Your very own 2013 CHOC Walk Tshirt!  Riley is not included in this giveaway!!!

A 2013 CHOC Walk medallion and lanyard........

1 Disneyland Park Hopper ticket (to ship in December and valid through 11/2014)

A $25 Disney gift card!

So.... How do you enter????

2 ways.

Leave a comment here on the blog. 1 entry
Like our NEW Team Riley Facebook page 1 entry
Team Riley Roo

Of course I've waited forever to start this page and Team Riley is already taken!  So Team Riley Roo (Riley Roo being a nickname we have for our little Miss) it is!

I'll take entries until Sunday night at midnight PST.  We'll draw and announce the winner on Monday.

Thanks for continuing to pray for us, think of us and follow us on our journey.  And.... Good Luck!

P.S. Feel free to share the FB page.  The more the merrier!!!

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

CHOC Walk and ACTH

**** Meant to post this last night and then fell asleep mid-post!  I know if I don't get this up it may be awhile before I can write another one!  We're waiting on a UPS delivery of Riley's meds and then we'll be headed home!!!****

You know those days when you are so exhausted you don't even know how you are going to make it to your bed.  Yesterday was one of those days!  Heck, I think I am still tired today.  However, my heart is so full and I am so happy we were able to be a part of something truly magical. (As cheesy as that sounds)  In fact, we're already talking about next year!  And the best news from today is that as long as everything goes as planned Riley should be home tomorrow!!! 

Riley is doing really well!  The ACTH is working from what we can tell so far.  This is such a relief.  But.... Riley is starting to feel some of the side effects.  We've termed this "roid rage". I had to step out of the room tonight for a bit of a breather because it is really hard to watch.  She can't get comfortable and tones and flexes until she is red faced. I don't know how we are going to get through 8 weeks of this.  However her startle seizures (IS:Infantile Spasms) have become fewer and fewer and without jinxing anything I think... just maybe we've crossed over to a new baseline.  Riley's phenobarbital will be increased a bit as well.  Last night she had an extra large does to load her up. Please continue to join us with prayers and good thoughts and whatever you have to help keep this positivity going!  And to help get us through the next 2 months.  I just keep reminding myself that this is best for Riley in the long run.  It's the unknowns that are leaving me a bit on edge though.   But, we'll power through this just like everything else and just take each day as it comes.

Yesterday was THE CHOC Walk.  It's been a crazy couple of days but, the memories that we made are priceless.  Simply wonderful.  And, because we decided with Tia T and Unlce Mike last minute to get rooms at the Hilton near Disneyland Saturday night the memories will continue for years to come.  It was, hands down, one of the best times we've had with the boys in long time and add in Miss Mia, Tia T and Uncle Mike and we now know we need to do something similar again.  Logan was SO excited to stay in a hotel and both boys loved playing around and exploring every nook and cranny in the room. 

Grandpa Hopper was able to come down to CHOC and stay with Riley so that this could all become a reality.  We always know when Grandpa is at the hospital that Riley will be taken care of.  It makes it so much easier to be away although I will admit that there were many moments Saturday night/Sunday morning that I felt sad.  We were supposed to be doing things with Mia and the twins and Logan all together.  Like we did last year when we all went to the pumpkin patch.

 

Those are the times that are hard for me.   When we're apart or doing things normal families do  my heart is definitely torn.  We were definitely missing a huge part of our family. 

We hit up Downtown Disney, without restaurant reservations Saturday night, yes I know all of you Disneyland lovers/planners are cringing.  Right around the time when I was ready to throw in the towel and just grab Mcd's we had a text from HOB that they had a table ready.  Thank goodness.  Mason without a nap is not fun!  Trust me!

After dinner we went back to the hotel and hung out before the fireworks at Disneyland started.  We had an amazing view from Tia T and Uncle Mike's room!  It was the perfect ending to a wonderful night! 

Yesterday I was up at 4am so that I could blow up the balloons we had for the walk.  Apparently Mason thought it was a good time to get up as well!  He's was in bed early last night.  4am is not good for anyone!

We had a bit of an issue with the valet at our hotel in the morning and I honestly didn't think we'd ever make it over to Disneyland.  Add in the fact that a zillion people were trying to get in to the parking lot at the same time and my anxiety was in full effect!  We made it though and met up with our amazing team of walkers.  The rest of the moring was wonderful, perfect.  Better then we could have ever imagined.

The entire event still leaves me choked up.  The support we had/have was/is amazing.  We've raised: $15,080 so far!  And I know we still have donations coming in.  How amazing is that!  For our first go round and deciding to walk pretty last minute I am proud of what our little team did!

Thank you to:

Alegria

Andy, Aimee & Sam Swanson

Anne Fisher

Annonymous

Annonymous

Augie flores

Aunt Kathryn

Aunt Kathy & Uncle John

Aunt Linda

Beverly Marksbury

Charles McCluer

Community Bank

Craig Schmidt

Craig Stewart

Deb Blanchard

Diana Cravotta

Doug & Jan McEachern   Escarciga family Eva Margueriette Gatt Family Gina Parrille & Family Grammie & Pa Doug Grandma Jan & Doug McEachern Jeff Jaramillo Jimmy Fahey Kari McWhirter Kathleen Malone Katie Figueroa Keri Sikich Kristen Hill Lindsay Jenkins Lindy Evans Lisa Mitrovich Marie McDuffie Mark & Joanna Crawford Mark Miskinis Mary McGinnis   Mike & Katie Shilling Patti Hegarty Penny Grund Roberto Gutierrez   Rudy and Beverly Hopper Sondra Stokes Sue Montgomery The Eggleston Family The Giordano's The Hopper Family The Kneiers The Leininger Family The McEachern Family The Puertas Family The Schmidts Uncle Ed, Aunt Toni, & Bailey Yolanda Agajanian and Family Chris Gallo Maria Sacco Steve Miller Felicitia Colon Naseem Waheed Ewa and Richard Shilling Jan McEachern Selena Miller Marty Salazar Matt and Dana Stanman Sue Seeker Leane Stephens Pat Seeker Looking around and seeing all of the teams and hearing about their stories made the day even more special. I also think it was humbling. To know we have Riley and we're still fighting is a good feeling. Some families don't have that option.  As we walked out of Main Street and past the infamous Castle we heard "was in a wheelchair last year and is walking down Main Street this year". It was hard to not be teary. So many inspirational kids/families all around us.   We also ran in to many of the special people that have been a part of Team Riley while caring for her at CHOC and Healthbridge.  Some of the most caring, special people we have met along this road.  I just wish we'd had Miss Riley with us to say hello!   I'll leave you with a little picture story of our weekend and wonderful day.  We're looking forward to making this an annual tradition and hope to add many more walkers to our "Team" next year!  Fight On!     Our reason for walking!  My hero Miss Riley Roo!!!  Riley got a CHOC Walk medallion and daddy got to practice giving her shot.   Before heading to the hotel we stopped by to see sissy!  The boys had the 5th floor playroom to themselves!  I'm amazed we were able to leave!       Downtown Disney fun!     Playing around in our jammies!  And... The Disneyland fireworks show!   Good morning Anaheim!!!  We're ready to walk!     Shoulder rides and walk fun!  Logan & Molly had a blast together! #memories     Checking out Disneyland!  Storm Troopers and Princesses cheering us on.     Grammie pushing the stroller!  Stroller dads!  One happy big brother!   Mia & Daddy (And some of our most favorite PICU nurses in the background!) Baby Luke walked too!  My love & rock!  More shoulder rides!     We made it to the finish line!!!!   Tired brothers!  The CHOC Walk is hard work!   Our amazing walkers!  The kindest, nicest group there was!  XOXOXO   Love, Dave, Megan, Logan, Mason and Courageous Riley            I think looking around and seeing all of the teams and hearing about their storeies was inspirational. I also think it was humbling. To know we have Riley and we're still fighting is a good feeling. Some pictires and stories broke my heart. But, as we walked out of Main Street and past the Castle we heard "was in a wheelchair last year and is walking down Main Street this year". It was hard to not be teary. So many inpsirational kids all around us. I'll leave you with a little picture story of our wonderful day. If you ever feel down or need a pick me up refer to this post. So many happy, wonderful moments with so many amazing people. Life really can be okay if you just choose to see the good all around you. Today was proof it does exist. I think looking around and seeing all of the teams and hearing about their storeies was inspirational. I also think it was humbling. To know we have Riley and we're still fighting is a good feeling. Some pictires and stories broke my heart. But, as we walked out of Main Street and past the Castle we heard "was in a wheelchair last year and is walking down Main Street this year". It was hard to not be teary. So many inpsirational kids all around us. I'll leave you with a little picture story of our wonderful day. If you ever feel down or need a pick me up refer to this post. So many happy, wonderful moments with so many amazing people. Life really can be okay if you just choose to see the good all around you. Today was proof it does exist.

Infantile Spasms and ACTH

Well we're settling in for a few days possibly week here at CHOC.  Hopefully I can explain this all in the most educated way.  However, please please remember I am not a doctor.  Just a mom trying to get a grasp on everything going on and relay the information to all of you!

We had a scheduled EEG yesterday afternoon.  I had called on Tuesday to check on how long it would be and was told we'd be at the hospital for 2 hours including check in/prep/EEG.  Honestly, Dave and I were concerned this wasn't enough time to really see what's been going on with Miss Riley.

We made it through the 45 mins or so of the EEG and Riley was very good.  Calm, relaxed and did not have any of her startle seizures, as we've been calling them.  So.... I asked the tech if I could try and provoke her.  There are certain times when Riley does these seizures and I was pretty certain I could get her going.  I did not want to leave without having the EEG tech get the seizure on tape.  It would have been a wasted trip really and we know Riley needs some assistance to control these seizures.

Well, sure enough we turned the lights on, I played a video from my phone and Riley started.  The tech started recording again and then promptly left the room....  Ummm okay.  I texted Dave right away and said we're staying.  I just knew.  Again. 

She came back 10-15 mins later maybe it was longer, maybe it was shorter.  Really it's a blur.  She had more electrodes with her and let us know that neurology had reviewed the test and wanted us to head to the ER.  They'd admit us and we'd have continuous monitoring.  At this point we thought we'd be here 24 hours or so and then get to go home.  Well we were wrong.

Things didn't really become clear until this morning.  What Riley is presenting with is two different types of seizures.  One is managed pretty well with phenobarbital.  The other isn't  being managed.  Her startle seizure started a few months ago, here and there.  If you recall last month we were in the ER because her seizure activity had increased to multiple episodes a day lasting longer then we'd like.  We had an overnight stay a med adjustment and went home.  Worked okay for a few days and then the seizures started increasing again.  I really wish we'd had the continuous monitoring last month while we were here but, not much we can do now.  When I tried to joke about the what ifs and what could shoulda woulda in regards to everything (we're tlaking back to the day after Christmas) today the very dry, zero personality neurologist said I was going to give myself a stress ulcer.   I was trying to make a joke btw not being serious.  He had also never heard the term "Dr. Google" which humored me beyond belief.  Sometimes it's the silly ridiculous things that get us through the days.

At this point they are diagnosing Riley with Infantile Spasms.  While I feel that these have been caught relatively early I am still pretty sick about it.  Most likely her phenobarbital helped to keep these spasms at bay for awhile.  Now they are pretty regular and need to be treated.  And now here comes the complicated part.

The doctors discussed with us ACTH as the medicine to try and stop them.  ACTH is a steroid.  Treatment is over weeks and the dose is decreased slowly until eventually being stopped.  If it works this could be FABULOUS for Riley.  As it is now her EEG is pretty chaotic.  ACTH could help to bring it back to normal range.  I am hopeful that this can be accomplished.  And I am asking for your prayers and good thoughts that this DOES happen.  If not I am not sure what we'd do next.

There are side effects, as with any medication.  Riley will become swollen over the next few weeks.  Will probably look a bit like a marshmallow.  But, that will all go away over time.  She'll need to be closely monitored for higher then normal glucose, any bleeding and we'll test her blood, urine and stools.  This medication is not something you mess with.  You can't miss a dose or mess up the dosage instructions.  We'll leave here with specific notes.

It's an inject able so we've already started practicing on an orange on how to get it just right.  Thankfully, we have 24/7 nursing that will be helping with all of this.

Now here comes the crappy part.  ACTH is expensive.  Some articles I've read list doses at as much as $20k a pop.  We have insurance so that's not the issue it's the bureaucracy of having it approved.  Before we are allowed to take Riley home the meds need to be at our home and we need to bring them to CHOC to prove we have them.  They don't mess around.  It's anyones guess when that will be.

The case manager is already all over it and trying to get things moving as quickly as possible.  We hope to be home Monday possibly Tuesday at the latest. 

The first ACTH dose will be tonight.  Riley can come off of the continuous monitoring tonight!  Yay for being able to hold her!  She just fell asleep though so I may have them wait until morning.  It's going to be a goobery mess when the probes come off!
Over the next few days Riley will be closely monitored to see how she reacts to this medicine.

Riley's immune system is going to be very vulnerable for the next few months.  Anyone coming to our house needs to be sickness free and we'll be instituting a mask policy in Riley's room.  This is going to be the hardest part of all of this especially as we are gearing up for flu season and the weather is changing.  Another thing I tried to joke about with the neurologist.  You know how kid's in school are in a germ factory.  Yeah he didn't get that one either.

Tomorrow I have to make the phone call to Riley's audiologist to let her know we need to postpone her CI surgery.  We had finally made progress and were once again ready to have a consult with the surgeon in 2 weeks and now this.  Thankfully, I know we can still have it done after this but, I'm still really frustrated!  I am happy to say that once Riley is able to have the surgery it will be done at USC!!!!  It's pretty obvious the love I have for anything and everything USC so this is one development that has had me smiling ever since all of the pieces to make it a reality fit together! 

So what's next?  Not too sure right now.  Start the med and wait.  Beyond that we're hunkered down at the hospital.  Thought we'd update all of you though and once again thank you.  I know I ask a ton and hopefully it's not too much but, your prayers and good thoughts work.  Riley could use them again.  I just pray this is the answer for Riley and the beginning of good things.

And not to be forgotten is the CHOC Walk.  Unfortunately, Riley will not be able to attend.  We however will still be walking.  In fact as of tonight we are at a little over $13,500 raised!!!!  Which means we will probably pass the $15k mark by Sunday.  So thank you to ALL of our supporters.

As I sit in room 515 watching Riley sleep it only reminds me why we are walking.  Riley is in good hands.  Actually, great hands and there is no other place we'd rather be.... except maybe home.


Fight On!

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

October!

It's hard to believe that it is now October!  We are going to be busy this month.  Logan's birthday is this weekend and the CHOC Walk is the next weekend.  We have many appointments this month, sporting events, a concert and we'll end the month with Halloween of course!

Last week Mason had a double ear infection on top of cutting 6-8 teeth.  I've lost count!  I often find him chewing on whatever he can get his hands on!  We were happy when Friday finally arrived but, knew we'd be busy. We had a ton of house stuff that needed to be done so we would be ready for Logan's party this weekend.  In the midst of all of that we were without a nurse overnight Saturday and Sunday.  When it rains it pours. 


Love this silly kid teething and all!

Helping clean the backyard!  Logan is thrilled :)

Yesterday I was up at 4 am worrying about everything that needs to get done and making sure I got Riley her meds at 430 am and feeding at 5 am.  Of course Riley takes after mommy and slept through everything!  I was able to get 3 loads of laundry and a cycle in the dishwasher done before the rest of the family was up so that was a plus.  As Dave joked with me about the beauty of the couple hours before the sun comes up I briefly considered making it a more regular habit of getting up early until I remembered how much I love my sleep!

We're still in a holding pattern so to speak in regards to the Cochlear Implant surgery and I am getting impatient.  I know things will all work out but, not having something in the calendar and not prepping to actually have the surgery done is driving me crazy.  My unorganized self that has now become attached to my email and google calendar is cringing! 

At the end of every month I look at next months calendar and take in what we are up against.  October has us following up with the Neurosurgeon, Neurologist, Pulmonologist, GI, ENT and Neuro Rehab doctor along with an EEG, lab work, botox and hopefully a bronchoscopy.  We also need to schedule a swallow study.  Looking at all of that exhausts me at first glance and then I start to add in therapy appointments, Logan's school activities and life events in general and I feel out of breath.  This is where the help and support we receive really saves us.

October has also always signaled to me that the end of the year is fast approaching and usually I feel like I blink and it's Christmas.  I'm hoping to be able to fit in a trip to a pumpkin patch with the kiddos again this year and hopefully we can take some time to stop and appreciate the changing season (if it ever decides to really change!).  I have a feeling though that before we know it the calendar will change again and it will be November!  I seriously wonder where the last year has gone....

Last Friday Riley did SO well in PT and had me grinning ear to ear.  She was sitting with slight assistance from her therapist who supported her ever so lightly in her trunk but, she was holding her head all on her OWN!!!  I sent Dave a picture and he was just as proud.

Riley sitting up in PT!

Sunday while hanging out together on the couch I tested Riley again and she was able to hold her head up while I held her arms and pulled her up towards me.  It made my day.  These milestones make all of the hard work and worry worth it.

This weekend the twins also turned 19 months old.  I used to lose count of the month birthdays but, they mean so much more to us now.  Sometimes the day brings back happy memories and then there are the times that I start my "it's been xxx since" and "Riley got sick xxx months ago" or "when the twins were xxx months old they did xxx."  And then I snap out of it and realize I need to get back to living in the moment.  It's the only way to really get through the day.

Trying to get a good month birthday shot was impossible!

I still have a long list of to-do's before the big 5th Birthday Batman shindig on Saturday.  I always run around like a crazy person the week before parties and I am lucky that this year I was able to enlist the help of a few special people to help put the finishing touches on the day.  I can't wait to see what arrives in the mail this week!

Before I go though I have to thank, Pinterst Told Me To and Sheaffer for an amazing gift that I am receiving.  On a whim on Friday I entered her contest for mom's of special needs children. 

Pinterest Told Me To

 

I really did not think that I would ever win and when I woke up Saturday morning to her email saying I'd won I was giddy.  Once I get some time to use the Loft gift card I will have to share what I am able to get.  For a mom who's wardrobe additions recently have been from Target and Old Navy, because really who has time to make it to the mall, I am excited to spruce things up in my closet!  Thanks again Sheaffer!  It really came as a complete surprise.

I also have to share the success that our team is having with raising funds for the CHOC Walk.  I initially set a goal of $2500.  As of right now we are up to....... $8670!!!

CHOC Walk Team Riley

 Much of that is thanks to Pa Doug who has been telling Riley's story to anyone who will listen and drumming up donations.  Uncle Brad and Hannah have also raised quite a bit for the walk, thank you thank you thank you!  It's quite possible that by the day of the walk we will surpass the $10,000 mark!  It makes me teary just thinking about it.  So thank you to all of you that have donated whether it be through our team page or through our individual walkers.  It makes this mama happy to know that there are so many people pulling for us in every aspect of our life.

We hope you all have a great week!

Fight On!

Love,

Dave, Megan, Logan (the almost 5 year old!!!), Mason and Courageous Riley