Walking, Horses and Preschool

 

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Here we are in November and I am ready to provide a huge update (remember I have not posted since February).  Peyton started walking in March, right before her second birthday!!!!  We were ecstatic and so thankful to Peyton’t team of therapists that helped get her there.  Back in March, Peyton had about 10-14 hours of therapy per week of PT, OT, Child Development, and Speech.  We had been driving to LA to the NAPA Center(Neurological and Physical Abilitation Center) once or twice a week for 3 hours of therapy/day and we finally felt like Peyton was ready to handle an intensive therapy session, which is 3 weeks of therapy for 3 hours a day, focusing on Physical and Speech Therapy.  I have to admit I was not quite sure we were ready for the drive everyday and just the overall commitement, especially thinking about Chad (our 3 year old son (Now 4, as of October).  I am so thankful to our family and friends for their love and support and giving us that extra push that we needed to just do it!  And thank you to my Mom who was there for Chad…it definitely takes a village.  The therapists at the NAPA center are amazing and people travel from all over the world, with many different syndromes and conditions, to attend the intensive therapy sessions.  Our first 3 weeks were amazing, I did not want it to end, so we signed up for a follow-up week in April (I did feel a little bit addicted).  Peyton did so well and improved so much that we have decided to take a break from once or twice a week trips to LA and continue with once a quarter intensive 3-week sessions.  We had a follow-up 3-week session in August and it was awesome.  We will do it again in December.  Whoo-hoo!

In April, we went to see Dr. Miller, Peyton’s amazing Endocrinologist in Florida.  We are so blessed to have her in our lives and as the lead on Peyton’s team.  Brent and I went alone with Peyton for a very quick, 2-day trip to Florida. We were excited to see Dr. Miller and for her to see Peyton.  The night before I had a little meltdown, it hit me unexpectedly, as I realized that I was afraid of what we might hear at Peyton’s appointment.  So many times before I set myself up for a successful Doctor appointment and then I am blindsided by the news that they give us.  The week prior, we had Peyton’s x-ray of her spine and hips, tracking the curve in her spine and any hip dysplasia, along with her quarterly bloodwork, and I was just nervous for the results.  As always, Brent, my amazing husband, reminded me that this is why we see Dr. Miller, if there is something wrong, she has the answers and the experience, and will tell us what we need to do.  She sees hundreds of patients a year with PWS, she does a lot of the research, she is the expert, this is why we fly to see her every year and we are never dissappointed.  I am happy to report that Peyton’s appointment went extremely well and we went home with a prescription for orthotics to help with Peyton’s stability.

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In May, Peyton started Hippotherapy (Horseback riding therapy) and she absolutely loves it.  She loves her horse, Bliss, and she is gaining more and more confidence.  She loves to kiss and hug him and feed him apples and carrots at the end of therapy.  Peyton works with a speech therapist while she rides Bliss.  The Center where Peyton rides had their annual fundraiser and they asked Peyton to be one of the riders.  They had 1,000 people at the event.  Peyton rode her horse, waiving and blowing kisses to the crowd.  It was truly magical to see her out there.

In July, Peyton received her orthotics.  I was so excited to pick them up.  We ordered the ones with little pastel flowers on them and pink straps.  I have never seen a little girl rock orthotics like our Peyton.  I could see the confidence in her the minute she put them on, they help to increase her balance and stability.

In August, Peyton started 4 hours/week of Behavioral Therapy to help with some of the behavioral issues that can come along with PWS.  We are finding this therapy extremely helpful.

In September, Peyton started Preschool, TYPICAL PRESCHOOL!!!!  This was huge for us.  Peyton and I would take Chad to school and she started saying, “I want to stay”, and I realized that we should look into that.  Here is my 2 year old giving me the advice.  Her preschool is amazing, they have small classes with two teachers, which seemed like the perfect environment for Peyton.  I looked at a special needs school that was wonderful, but for Peyton, I did not feel like it was the right fit.  Peyton is progressing so well and  we do not want to limit her.  She is so capable and we will do all that we can to help her achieve.  Achieving doesn’t mean typical or special needs school, achieving means that she is being challenged, not to a point of full frustration, but challenged to where she is thriving and confident in herself and her abilities.  We will not limit her and we refuse to make assumptions for her just because she has PWS.  We are committed to helping Peyton to be the best that she can be.  She is already perfect in our eyes.

2014 has been an awesome year.  To see Peyton’s progress is just unbelievable.  I feel like we are in a good place, a place where much of the fear has been replaced with hope and possibility.  We have so much hope for our sweet Peyton.  We see her progress and we see all of her possibility.  I look forward to updating sooner rather then later…  ha ha, famous last words.  XO

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Happy Mother’s Day!

IMG_0684Happy Mother’s Day!  Wow, it is amazing to think that it was just a year ago this weekend that we received Peyton’s diagnosis.  I am in awe at the progress we have made in this first year, the progress Peyton has made and the progress we have made as a family.  I do not even know where to begin.  March and April have brought big changes.  In March, Brent moved the office from Sherman Oaks to Torrance, and on April 1st, we moved our family from LA to Orange County.  Where do I begin…we are just so happy to be here. While we most definitely miss our friends and family in LA, we are thrilled to be in such a family friendly area and so close to my parents!

But, there is more!  On April 14th, we flew to Florida to meet Peyton’s specialist, Dr. Jennifer Miller, which was truly awesome.  After Peyton’s diagnosis, we started reaching out to other families that had children with PWS, and we heard over and over about Dr. Miller.  I called her soon after and was amazed that her nurse passed my call directly to her.  I spoke with Dr. Miller for 20 minutes about Peyton, what we needed to do now, and that it would be best to see her when Peyton was a year old.  So… we started planning our trip.

Our meeting with Dr. Miller far exceeded our expectations.  We went into the meeting with some anxiety.  We felt like we were in a really good place with Peyton, that she was making so much progress, and we really did not want to have to focus on what was too come.  Not that we were in denial, but this first year has been a roller coaster of emotion and we were just enjoying where we were at right now.  Dr. Miller gave us so much hope for Peyton and her future, she eased our anxiety, and made us feel like the potential was endless.  We now feel like Peyton is currently under the care of the best doctor for her.  PWS is a rare condition and where some specialists see 10 patients a year, she sees 450.  People come from all over  to see her.  We know that the right regimen for Peyton, therapies, growth hormone, supplements, and support, will make a big difference in her future.

Peyton turned 1 on April 18th, it was such a happy day with so much to celebrate.  Then on April 22nd, Peyton’s G-Tube was removed (her feeding tube).  I cannot tell you how happy this makes us!  Peyton is eating enough food on her own that she no longer needs it.  We are in a really good place right now and we are so thankful to everyone for their support and prayers because we feel like they are being answered.

Peyton has taught us so much in her first year of life, she has refocused us on what is really important.  She has taught us to slow down and enjoy the little moments, to cherish our time with our families and our friends, and that beauty shines most brilliantly through the imperfections.  This is the best Mother’s day ever.  I love my amazing family.

Happy New Year

DSC_0165_2 DSC_0167_2Happy New Year!  I know, it’s February, but still, Happy New Year.  I am so happy to finally post in 2013.  We are looking forward to an amazing year.  We look back on 2012 with a mix of emotions.  I struggled to post at the end of 2012 because I was struggling with my feelings.  I was feeling sad.  I do not like to get down especially when I see such amazing progress with Peyton.  She brings us such hope and inspiration, but there are times where the sadness can still be overwhelming.  I was sad because I just don’t want anything to be wrong with Peyton and it is difficult for me to let go of that wish.  I guess, I will never let go of that wish.  That is where the sadness comes from.

So, yes, there is sadness, but overall, I can honestly say that we are happier than we have ever been.  We have found true, pure happiness.  It is like Peyton has allowed us to feel so free and alive, and to let go of so many of the little things that really don’t matter anyway.  At a time when we could be so sad, it is amazing to me that we have never been happier.  I think it is the sadness that has allowed us the freedom of feeling the overwhelming high of happiness.  As I acknowledge the sadness, it is the happiness that we feel most often, it is the happiness that always outweighs the sadness.  We live for the joy, the hope, the happiness.

So that brings me to our anthem for 2013, “Carry On” by FUN.  I am just crazy about this song.  To us, it is uplifting and inspirational.  They say “if your lost and alone, or you’re sinking like a stone, Carry 0n”, and that is exactly what we are doing, carrying on.  So when there are days or times that I am sad, I remember, I can carry on, this too shall pass.  I know it gets better, back to happy.  “No one’s ever gonna stop us know, cause we are, we are shining stars, we are invincible, we are who we are”.   This is our 2013 anthem, it inspires us to make a difference, here at home, in the PWS world, and everywhere…to make a difference in this crazy world of ours.

To sum it up, in 2012, we learned a lot about life, love, family, and hope.  We found less to complain about, not more, and so much more to be grateful for.  So…here is to an amazing 2013 full of love, laughter, strength, happiness and miracles, lots and lots of miracles.  Lots of love to everyone.  XO.

Perspective

I have always known that life is so much a matter of perspective, that “life is 10% what happens to you and 90% how you react to it.”  I have never had this tested as much in my life as I have now.

As I was ready to post my blog last week about perspective, I was challenged with my own perspective.  As I try to stay positive throughout this journey, I was struggling.  A few months ago, my sister, Holly, met a guy who runs a rehabilitation facility in the LA area, the NAPA center (Neurological and Physical Abilitation center).  Holly  has been asking me to go and check out this facility.  People come from all over the world to this facility for intensive treatment, both traditional and non-traditional therapies.  I went last week with Peyton for an evaluation.  Let me say, the NAPA center is an amazing facility and we are happy we found it.  The people there were loving and accepting, completely understanding and comforting.  Thank goodness, since the minute I opened my mouth to introduce myself, I started crying.  Once again, (if you have read my previous posts) I was overwhelmed and shocked by my emotions.  In that moment, I felt as if, out of the blue, someone ran up to me, shoved me to the ground, smacked me in the face, kicking me as hard as they could while yelling, “Your daughter still has PWS!”   You would think I would be used to it by now, explaining our situation, being overwhelmed by my emotions, but no, I keep being taken by surprise, caught off guard.  I know that I am not in denial about Peyton nor my emotions, it is just difficult at times because she is doing so well and when you look at her, it is hard to imagine that there is anything wrong with her.  When I go to a new place and have to introduce myself and Peyton and tell our story, it just brings up all the emotion from the day we were told of Peyton’s diagnosis.    After the evaluation and my experience, I was trying so hard to find the silver lining, to keep a positive perspective, but I couldn’t get out from under my hangover of emotion.

Today, I brought Peyton for her first therapy session.  We have therapy 6 times a week at home, so we have chosen to use the NAPA center for some non-traditional therapies, most specifically CME or Cuevas Medek Exercise.  This is a form of physical therapy that exposes a child to the influence of gravity.  Peyton’s first session was painful for both her and I.  She cried through the first session and subsequently, so did I.  It was extremely challenging.  We call Peyton the WBB, the World’s Best Baby because, quite simply, that is exactly what she is, the World’s Best Baby.  She has the sweetest demeanor and she is just the most loving, easy-going baby.  She does not cry a lot and when she does, she is easy to console.  Today, was the most and the hardest she has every cried.  About 35-40 minutes into our hour long session, I had enough.  I knew this therapy was helping Peyton, but that was all we could handle for today.  I left there feeling sad.  I was sad that Peyton had to go through this, through therapy, through PWS.  At the same time, I wanted to stay grateful for finding the NAPA center (Thanks Holls).

Tonight, I was holding Peyton, she was sitting on my lap and she was so aware of her body, holding her head so straight, using her arms to support herself, engaging her stomach muscles, and there it was…the silver lining.  I couldnt’t help but say to her, “we are doing it, we are doing it, Peyton.”