Monday, July 29, 2013

A little setback

I really try to focus on the things that happen in our life and look at them as though they happen for a reason.  What that reason is really isn't always visible at first.

Last Wednesday I decided to keep Riley home from PT.  She just wasn't feeling well.  I think it was a combination of her 2 shots on Monday and the family cold that she was coming down with.  I was really hoping that by letting her rest she'd kick whatever it was that was bugging her and we'd be ready for Thursdays MRI.

Thursday morning I could tell Riley still wasn't feeling the greatest and we postponed her Visual Stim therapy.  As I told Riley's nurse Thursday morning, I just wanted to make it through the MRI that afternoon.  The days leading up to the MRI were stressful and I was a nervous wreck.  Not about the actual procedure but, what the MRI would tell us.  Would the MRI reveal that Riley wasn't a candidate for cochlear implants?  Would the MRI show us permanent brain damage that we were unaware of up until now?  Trust me my mind had played games with me all week wondering about the what ifs?

Our usual routine for Riley's therapies and doctors appointments is that I take Riley along with a nurse and Dave usually stays behind to work and be available for the boys.  For some reason he felt the need to come to Thursdays MRI and made the call last minute to come.  Little did we know how important it would be to have Dave along as well!  We discussed braving the appointment by ourselves and going without a nurse but, something told me it wasn't the best time to do that.  So we loaded the car up and kept Riley's O2 tank right beside her "just in case".

We barely made it on to the freeway when Riley started having a coughing attack and was barely able to catch her breath.  It was a different type of cough and something we were not used to hearing from her.  As she started to dsat down in to the low 80's we knew she was in respiratory distress.  After putting the oxygen on her it wasn't helping her as much as it should have.

The entire 25 minute ride was filled with coughing spells and frequent checks on her O2 levels.  As we neared the exit for CHOC Dave and I looked at each other and knew we would not be headed to the MRI but, rather the ER.

Thankfully, the brand new CHOC ER is right next to the main entrance so we just turned in the other driveway and unloaded right in front of the ER entrance.  Since Riley's records are all in the CHOC system it took all of 2 minutes to get her checked in and then they whisked us away to a room.  I think there was a team of at least 12 people including the attending doctor in her room within 5 minutes of us walking through the door.

As they assessed Riley we answered the 100's of questions the nurses and doctor were throwing at us.  They quickly changed her trach and had O2 and monitors on her in no time.  Because of her trach we have to be really careful that it doesn't get clogged or infected.  They did find that she had an ear infection in her left ear but, they didn't think that would cause the type of respiratory distress she was having.  They decided to run a series of blood and urine tests and took a swab of the mucus from her trach to have that tested as well.  Poor Riley just looked so sad and sick.  We knew she was in good hands though.

Once Riley was settled in I decided to take Trudy, Riley's nurse, back to our house so she could head home.  Her shift was ending and there was no reason for us all to be sitting around the waiting room for hours.  I also had a feeling that Riley would most likely be staying overnight so it was the perfect opportunity to go home and grab some clothes for Riley and overnight stuff for Dave.

As we got closer to home Dave called and confirmed my suspicions that Riley would in fact be admitted for observation overnight.  While we were sad we were also grateful that we were at CHOC and not Pomona (we try to avoid that place as much as possible).  The ER called over to the radiology department and cancelled Riley's MRI and we started to hope and pray that this wasn't something more serious for Miss Riley.

I got back to CHOC about an hour later and Dave and Riley were hanging out waiting for a room to become available on the floors.  One of Riley's wonderful RT's from our days in the PICU had come by and even though we'd love to not have to see her at work ever again it was a nice visit from one of the most caring, thoughtful individuals we had the pleasure of meeting at CHOC.  She had walked Dave and I through some tough crap when Riley was in the PICU.  CHOC needs more people like Devin (and Debbie and Bryce)!

We were finally able to get a room around 6:30 on the 5th floor.  Thankfully, we had a private room as they put Riley in isolation.  Isolation doesn't even bug us anymore.  It's for the safety of the patients and staff as well as Riley and we appreciate the precautions the staff takes to protect everyone.  We were still waiting though for the tests to come back when the RN getting us situated informed us that Riley's trach swab was growing something.  Boo! 

I left to head back home to the boys and Dave hunkered down for the night with Riley.  It's funny but, we both noticed how relaxed and alert and calm Riley was.  Maybe it was the one on one time with both mommy and daddy?  No strangers by her side and lots of hand holding and back rubs from the two people that love her more then words can explain.  Amidst the chaos Riley looked like a normal almost 17 month little girl.  It seems these episodes that take us a few steps back tend to catapult Riley 10 steps forward.  The hidden blessing.

Dave and Riley hardly slept Thursday night and Riley did a ton of looking around the room trying to figure out where the heck they were.  The 5th floor is much different then the 6th floor.  And maybe just maybe that was good for all of us.  Instead of the familiarity and fear that the 6th floor induces we were all able to take a break and rest.

Friday morning Dave had an important job to get started  so Grandpa Hopper met Dave bright and early to stay with Riley until I could get there mid morning.  We were told the doctors were rounding around 10/1030 so I was hoping I'd make it back in time to talk to them.  I arrived and waited and waited and waited.  If we've learned one thing over the course of the last 7 months it is that you have to be persistent and vocal in the hospital otherwise you can sit for hours without talking to the right people.

As the clock approached noon we started to bug our nurse to get the doctor in to talk to us.  It took a few discussions with him as to why we wanted to see the doctor and hopefully sped up the process.  Riley was doing okay and stable.  She was on a round of antibiotics and nothing that was life threatening had come from her tests so we really felt we needed to get Riley home.  It was a Friday afternoon and in a hospital if you are still around Friday night the chances that you'll be there through the weekend are pretty high.

We met with the attending pediatrician.  Very nice man who had a cochlear implant.  We had never met him before but, he was very sweet and gentle with Riley and listened to our concerns about wanting to take her home and not just sit around the hospital.  Since Riley wasn't in critical condition we really felt she would to better at home.  After he agreed with us I randomly asked him if he had his own practice and unfortunately, he doesn't.  I was really hoping that maybe I had found someone who would get Riley if she did in fact end up with cochlear implants.  When he walked out of the room I smiled.  It may sound silly but, having these people placed around us that have accomplished amazing things themselves with a disability is really reassuring.  I needed a reminder that Riley can do anything she sets her little mind to.  Especially after what we had been through the past 24 hours!  And as I told Riley, maybe you'll be a pediatrician one day helping kids just like you.  One can hope and dream and believe and Dr. Armstrong reminded me to do just that.

After meeting with the pulmonologist we were given the okay to go home but, told we had to cancel this mornings sedated hearing test and follow up with Riley's pediatrician and pulmonologist before we could proceed with the test.  I worked so hard to get these things going so that we could make sure we kept options available for Riley and now we're back to square one.  While, I am bummed I am thankful that when Riley really needed to be seen we were in the right place at the right time to take her to where she is  most comfortable and gets the best care.  And I am thankful we got her there when we did.  Had we not been on our way to the MRI we probably would have been watching Riley at home and letting her rest but, who knows what her cold would have turned in to. 

Early Saturday morning Dave left to head out of town for the night after having to postpone his trip by a day.  I was really happy he could still go.  We all need a break every once and a while and Dave had really been looking forward to this weekend. 

Riley was able to get a good night's sleep on Friday and was definitely happy to be back at home.  She's still not feeling the greatest but, I think she's on the road to feeling much better.

Since Riley was in good hands I got the boys ready and we headed out for some back to school shopping for Logan and some mommy/son time.  Logan calls these "dates". Those two are quite the pair but, we had a nice lunch together and after having Logan thank me a million times for taking them out I knew it was all worth it.

Yesterday our babies turned 17 months old.  It's hard to believe.  I feel like just yesterday we were loading up the car to head to the hospital and complete our little family.  Mason is growing and growing and changing everyday.  He talks his Mason speak all day long and follows his brother around wanting to do whatever it is he's doing.  He's all boy and has no fear!  Some of his favorite words are cheese, trash, outside, sissy, sippy and no.  He's very animated and loves to say hi to strangers and get people's attention.  Riley is growing and changing as well.  A doctor this past weekend made the comment that she was getting chubby.  And I was thrilled.  She's filling out and starting to really show us how she feels.  If she doesn't like something she is pushing people out of her way and showing us through her actions what she means.  We're proud of her and how far she has come.  I can't believe they'll be 1/2 of the way to 2 next month!

For now we'll keep Riley resting and just take things day by day.  Hopefully, the antibiotics and breathing treatments Riley is on will help her to kick whatever it is that she's come down with.  We're still waiting for the culture results and as of this morning they hadn't been loaded in the system.

Thank you for all of your concern for our little girl.  She really knows how to keep us on our toes.  I know this won't be the last time she ends up in the hospital but, we are thankful that this stay wasn't something more serious.

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

Tuesday, July 23, 2013

Back to the Grind and Fighting for a Cause

Last week was a pretty slow week for Riley.  Her visual stim therapist was out of town and the school district is off for the summer.  We didn't have any doctors appointments and Riley only had PT on Wednesday and Friday.
All set up in her stander
Taking a walk around Casa Colina
 It was sort of nice but, Riley really needs to stay active and be attending multiple therapies each week so I am happy we are back to our busy schedule.  I think it keeps us all sane and I am much more organized when I need/have to be and lazy weeks allow me to take a break and then get behind.

A couple of weeks ago Logan expressed interest in taking Karate.  We asked him last year if he wanted to do it through school and he wasn't interested so we left it at that.  Next to our local grocery store there is Karate studio and when we make trips to the cleaners or pharmacy or market Logan is always peeking in the windows and then suddenly last week he said he was ready to start.  We are thrilled.  I really think that this will help him with self discipline and listening.  After 2 intro sessions and the memorization of the Red Dragon motto we went with him Friday afternoon to get his uniform and white belt.  The sensei did a small test of moves with Logan and had him write down two bad habits he wanted to break.  He then broke a board with the bad habits written on it.  He was very proud and can't wait for his class this afternoon.
 New karate uniform

Saturday morning Logan headed out with Dave for a special surprise.  Uncle Mike got a boat so Dave took him over to Puddingstone Lake which is 5 minutes from our house and Logan went on his first boat ride.  He was super scared at first but, by the end was asking Dave what the people were doing out on the lake wake boarding.  When Dave told him about what they were doing he promptly asked him to teach him how to wake board.  It was great daddy/son time and I know Dave is looking forward to getting Logan up behind the boat!

This weekend Logan also had a sleepover with his cousins Tobin and Peyton.  They are a few years older and Logan loves to be around them so we were happy it worked out that the boys could spend some time together.  We blew up air mattresses in the upstairs playroom and Dave had the boys all tucked in when we decided to check on them one last time.  Well the boys weren't upstairs in the beds anymore.  They had declared it scary and Dave found them all fast asleep in Logan's room.  It led to a priceless picture! 

Sunday we took the boys out to breakfast and after they left to go home Logan was begging to know when they could do it again. 
Post breakfast suckers!
Silly cousins!
Taking a nap
Hanging out with sissy as Mason calls her
Kisses from Logan

Yesterday we went to Riley's pediatrician to get the ok for her sedated hearing test next Monday.   Riley was weighed and measured and was 22 lbs 3 ounces and 31 inches long.  So happy that she is growing!  Today and tomorrow Riley will have therapies and Thursday she will finally have her MRI.

I am very very nervous about this MRI.  It's keeping me up at night just thinking about getting bad news again.  I know I shouldn't be so nervous but, Dave reminded me last night that it will also be looking at Riley's brain stem.  MRI's are an inevitable part of Riley's life but, the last one she had done was also the MRI that led to Dr. Doom telling us Riley was gone.  The fear of hearing this again or something worse is overwhelming.  I remind myself daily that Riley HAS come so far and that no matter what this MRI shows we know what Riley has done and what she can do.  It still doesn't make it any easier.  Sometimes the doctors who deal with these cases become so numb to the personal/emotional side of medicine that they forget that they are talking to someones mom or dad.  So now I'm trying to figure out how to make it through the week and make it to Thursdays appointment.  And if you can spare any prayers and good thoughts we'd really appreciate them.  We are hoping to see that Riley is still a candidate for the cochlear implants.  If so, this will be the first step in opening this door for her.

In the meantime we'll distract ourselves from the end of the week MRI by attending the local City Council meeting tonight.  A few blocks away from our home is a lot that has been vacant for 40+ years. 
Proposed Rehab Facility

There are plans to build a 15 bed inpatient rehab facility for TBI patients.  You know something like Healthbridge where Riley spent 64 days recovering and we were able to spend time with her as a family in a more "home" like environment.

Well, our neighbors apparently believe that TBI patients are criminals. 
"Opponents' objections included fear that patients would escape the one-story, residential-style 24-hour nursing and rehabilitation facility to buy drugs, commit crimes and cause nuisances. They didn't want the patients using firefighter or paramedic services when someone else in the neighborhood needed such emergency response."

So, we'll be attending the meeting to see what our neighbors have to say.  And, if the time is right and I am given the opportunity I will speak on behalf of TBI patients like Riley and share Riley's story.  It makes me sad to think that in our own neighborhood people are going to fear my daughter.  I always believed we were in the right place to have the support and community feeling that we need and wanted for our children and family.  I guess I was wrong. 

This local news story has only fueled our desire to Fight On!  And so we will.

Dave, Megan, Logan, Mason and Courageous Riley

Monday, July 15, 2013

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

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.

Dave, Megan, Logan, Mason and Courageous Riley

Monday, July 8, 2013

All you need is love

I woke up this morning and looked at Dave like he was crazy getting out of bed so early on a Sunday.... I suppose I was hoping the long weekend would never end!  The last 4 days were a nice break from the constant go, go, go and we really enjoyed being together as a family.  Now we're trying to figure out the logistics of going out of town for the weekend with everyone.  It's probably going to take more planning then I am prepared for!

4th of July was hot but, tons of fun.  One of our air conditioners went out on Wednesday and the a/c company couldn't get a new one until Friday so we were very creative with cooling techniques in the house.  Thankfully, we still had one operational a/c unit and Dave brought home the industrial sized fan from the office to blow air down the stairs.  We then took another fan and pointed it at Riley's room to at least get some cool air in there.  Riley is very sensitive to heat and always has been.  But, we survived and Riley did well despite the temperatures in the house.  Just another one of those bumps in the road that really make me go why us?!?!

We also bbq'd and had family and friends over for the 4th.  The kids all went swimming and before it got too dark we let the older kids play with the sparklers and the adults lit some of the various fireworks that we had.   Once it got dark we walked up on the golf course and were able to catch fireworks from many different shows going on around us.  Not the best views but, it was nice not to fight crowds and be able to see some fireworks right in our backyard.

All ready for the 4th!

Ready to ride big brother's scooter!
Loves from Mia
Post swim sippy
Smiles with Mia
Hanging out by the ice chest (Just like their daddy's do)
One last sparkler before bed!

The rest of the weekend we relaxed, ran errands and spent time together.  Yesterday Logan was invited to his buddies 5th Birthday party.  He happens to live about 10 houses up the street from us so we were in countdown mode all weekend long for the moment Logan could run up the street to the party.  To say he was excited is an understatement.  Logan's buddy will be continuing with him to Sonrise Kindergarten next year so we are thrilled that the boys have clicked and see many play dates in our future!
Ready for the TMNT party!
Water slide fun

Riley had a great weekend and is still amazing us with her resilience and small improvements here and there.  It's safe to say she even cracked a few smiles this weekend.  Thursday during our bbq her cousin Drew spent a ton of time sitting with Riley and holding her hand.  I'm tearing up just thinking about it.  She stared him down and I know loved every minute of the company.  Drew was one of the lucky ones that Riley adored pre illness.  She was and still is our persnickety baby!  Riley is here and fighting because of our amazing family and friends and we know she feels the love all around her.  Perhaps that is what encourages her to fight on each and every single day.  The Beatles said/sang it best, "All you need is love".

This week Riley will have PT/ST and communication therapy through the school district.  She'll also get botox tomorrow as long as everything falls in to place.  I'm excited for her communication therapy to start and anxious to see what we'll all be learning.  I've pulled out the Baby Signs book I got when I took a class with Logan when he was a little under a year.  I'm hoping to start teaching the boys signs and who knows it might even help Mason right now as he's learning to talk!  I have a feeling we will all be signing in no time and that Riley will be able to communicate with us more once she finds "her" way. 

At one of Riley's PT appointments this week a rep from a medical supply company will be coming out to fit Riley for a bath seat and stander.  The infant tub that is currently being used is getting a bit small for Riley.  One of Riley's nurses improvised a stander last week with the twins activity center.  Riley tolerated it but, was not thrilled to have to have her feet touching the bottom of it.  It's important though for her to put weight on her legs and to feel what it is like to stand up.

We hope you had a wonderful long weekend complete with family, friends, fireworks and fun!

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

Tuesday, July 2, 2013

What a difference a year makes!

What a difference a year makes.  I always like looking back at pictures from the year before especially before a holiday.  With the 4th just a few days away I went back through the pictures I had on my phone.  The babies were 4 months old and starting to really show their little personalities.  Logan was loving being a big brother and had really grown in to the role of big brother.  Looking at these pictures it really hit me how much changes over the course of a year.

Logan telling Mason what to do.
Mason trying to knock out Riley
Mason not very happy about picture time and Riley posing.  I love how Logan is trying to calm Mason down.
Last week Riley got her glasses and hearing aids.  She looks too cute in her glasses and I'm surprised at how unnoticeable the hearing aids are.  I really have to look closely to see if they are in or not during the day.  We've been slowly breaking her in to both of her new accessories.  Whether it's the combination or just the glasses it seems like Riley has a bit of sensory overload at times while her glasses and hearing aids are on.
Barely noticeable hearing aid
I did google startle response which is what she seems to be having and it appears to be a very common side effect after a TBI.  Many people noted in one forum that either the startle response went away over time or that it lessened as time passed.  I'm hoping this is something we can help Riley with because it is unnerving when she does it and although the neurologist doesn't believe they are seizures it still sits in the back of our minds.
The glasses have definitely made an impact.  As Riley was laying in her crib the other day  with her glasses on I could see quite a difference just in the way she looked at her mobile and how her eyes were more mid line and focused.  We're really hoping they provide Riley with the assistance she needs to see the world around her more clearly.
Wearing her glasses at PT for the first time
Big yawn

Last Thursday Mason had his 15 month check up.  A little late but, life's been a bit crazy!  He weighed in at almost 25 pounds and 31 1/2 inches long.  It's amazing how much our little 6 pounder has grown!  Of course his head came in around the 98th percentile which is how all of our kids heads are.  Height/Weight he's pretty average at around 65% for his age.  He had two shots and took them like a champ.  As silly as it sounds it was nice to have some one on one time with my little buddy even if it was for a pediatrician visit!
Trying to keep him entertained.
Figuring out how this thing works!
As we were driving home from Mason's appointment I had a call from preschool that Logan was screaming about his ear hurting.  I instantly knew it was an ear infection.  Thankfully, my mom was still at our house and picked Logan up.  I was able to drop Mason off and pick up Logan and run over to the Minute Clinic and have him seen.  We were in and out in less then 15 minutes with an antibiotic prescription and ear drops.  Poor kid had a double ear infection.  We then headed back home and I unloaded Logan and picked up Riley and her nurse so we could head to LA to get her hearing aids.  It was probably the craziest day I've had so far! With antibiotics and ear drops Logan was feeling much better within 24 hours. 

This weekend it was hot and we spent tons of time in the pool and with family.

Uncle Scott is Mason's buddy
Pool fun with Uncle James and Uncle Scott
Just chillin

Sunday I took the boys with me and we were able to meet my friend Erica and her son Donavon for lunch.  I love how Logan interacts with Donavon.  Mason was a bit of a handful at the restaurant which reminded me of how Logan was at the same age.  I can't imagine what it would've been like to have both Riley & Mason in highchairs at a restaurant but, I sure wish I could.

Silly boys
Mason hanging out with the big boys

We'll be doing much of the same this coming weekend and we're looking forward to relaxing before starting the crazy hecticness all over again on Monday.  Next week along with therapies Riley will be getting botox in her legs (as long as it is delivered to her doctor on time).  I am curious to see how this helps her muscles.  I also can't believe my 16 month old is getting botox before me!  It is a very common treatment for CP patients.  Some say it works, others don't think it makes much of a difference.  Riley has been much more relaxed the past few weeks though so I think this will only help her more.  From what I've read it can help out in therapies allowing therapists to stretch the specific muscles more and helps to improve range of motion and tolerance of braces.  Like I've said before we will do anything to help our baby girl.  I'm hopeful that this will be another part of her overall therapy package and that we can see some positive results from the botox.  We shall see!

We hope you have a happy and safe 4th of July and spend it with those that you love.

Fight on!

Dave, Megan, Logan, Mason and Courageous Riley