The Princess and the Pea?

Coming up with a title for this post has kept me from writing this  for a very long time now, so I’m just sticking with it.  Now, Logan is far from a princess.  She is more of a tom boy in lilac glasses and pigtails, who prefers to wrestle around with her brothers than play with dolls.  She is one tough chick, and now she has a bed to match her personality.

Logan has been in her crib up until a couple of weeks ago.  Thankfully she is a tiny petunia, so she still fit in it.  However, she has gotten taller, making it quite easy for her to fall out either on purpose or accidentally.  There were several occasions where I went into her room to get her up, and there she was happily playing on the floor.  No thumps or cries were ever let out.  I so wish we had a monitor that recorded her every move.  I would have loved to see how she quietly got out without getting even a simple scratch.  Needless to say, nap and bedtimes were very stressful for us.  I was so worried she would fall out, and I felt like I was glued to the monitor.

David and I rigged up a barrier, using her ballet bar that we used for physical therapy a couple of years ago.  We wrapped it in pool noodles (we still are overstocked with these after Jack’s last Star Wars party) and I tried to make it prettier by wrapping those in sheets.  No matter what I did, it was still quite the eye sore.  And, it was SO hard getting her in and out of it.  I have bruises on my ribs from it.  But, it totally worked.  She never escaped again.  I don’t have a picture to post of it because I despised it, but now I wish I did.  I cannot tell you how great it felt to tear that barrier down!

Many of you probably have not thought twice on the type of bed you would get your child once they were ready to escape the crib.  I remember being so excited to go bed shopping for Jack.  I had pinned all of these fantastic rooms and tried to recreate what I had in my mind.  It was so much fun for me, and him.  My bubble got deflated this time around with Logan.  She would not be safe in a typical bed, even one with toddler rails.  She is a mover and shaker in her bed, and she does some of her best therapy work in there.  Like most kids, she learned to pull up and cruise in there, and she eventually played around with her depth perception and motor planning in there.  A simple bed would just not do, and she would be all over her room if we just had something on the floor.  She would never sleep!

Almost $8k!!! Yikes

So, I began the search for what other kids were using.  Some were really cute, and others simply looked depressing.  I googled “special needs beds”, and the same bed kept popping up.  This popular bed cost…$8,000!!!  Now, insurance will likely cover the majority of this bed.  IF it is used for medical purposes, not safety purposes like Logan would need.  Knowing the daily struggles we face with our insurance company (which does happen to be fantastic for us), we knew this wasn’t an option.  Plus, it wasn’t what I had in my mind for her.  So, a new search began.

We have an incredible support group on Facebook, and these families are my go to for anything PTHS related.  I asked around and quickly found someone in NC who had a custom bed made locally.  This family had found Rick’s Custom Canvas & Sail Repair, who made the safety mesh that was needed.  They were happy to help, and were eager to get started!  Now we just needed someone to build the bed.  We sketched out what we wanted and started asking around.  A good family friend gave us the name, and before we knew it the design consultation had begun.  We met with Seth Burch, who owns Hollow Rock Construction in Durham.  He is a local Durhamite, and grew up close to David’s family.  He was the youngest of 5, and has made a living doing something that his father had enjoyed as a hobby.  Seth didn’t end up building the bed (probably because he is in high demand!)…his father did!

Our original plan…so professional 😉

Warner Burch is a retired endocrinologist, and an incredible craftsman.  He was quick to get started and was so patient with us throughout the design process.  Do you know how many types of wood there are out there?!  He designed this removable canopy at the top, so the 4 top rails slide into the panels of mesh.  This actually adds more support to the entire frame.  We would have never thought of that!

Warner and his wife, Vivian (I desperately wanted to name Logan this!) delivered the bed in no time.  They are such a fantastic couple!  I hope David and I are like them when we grow up :).

Part of the finished product with measurements for Rick.

Once the measurements were sent off to Rick we started painting Logan’s old room.  Wes had the largest bedroom, and so naturally the youngest would get moved to the smallest room.  Sorry, wild man.  Logan’s room was lilac, so the least we could do was give him a more manly color.  I have to say, my excitement in room decor started to come back not only for Wes, but for Logan’s BED!  I started to see the possibilities, and the bubble was back!

The mesh finally arrived and before we knew it the bed was up!  Luckily we have a Duke baseball coach as a friend and neighbor, so he lent his manpower to get this beast upstairs.  Thanks, Josh!  It took David and Warner about 3 hours to install the mesh panels!  I sent Jack up with my phone to document the procedure.  He came back with two shots and about a million selfies.

 

 

 

 

 

 

 

As the men were working I got to hang out with Vivian and hear some fantastic stories.  She has a special needs brother, so it was comforting to hear her perspective on life with a SN sibling.  I often worry about how Jack and Wes will be affected by this life of ours, and after talking with Vivian my mind was put at ease.  There is just something extraordinary about these siblings.

So, here is the finished product!  We all LOVE this bed.  Jack has declared it the coziest bed in the house, and he wants one for himself.  Logan is literally giddy in it til this very day.  She sleeps so well in it, and I sometimes think she can’t wait to go to bed just to be in it :). And surprisingly, the mesh is very see through!  When you are in the bed at night with the faint nightlight on, you really cannot see it!  It seriously looks like there is nothing there!  Amazing.

 

 

 

Logan is one happy girl, and wakes up with this sweet smile just about every morning 🙂

 

Here’s a little video we took.  Logan is SO happy, and Wes is off to Home Depot!

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How Successful Was The Pitt Hoppin’ Dance-a-Thon?

Well, it was a HUGE success!!!  Over $14,000 was raised between donations, ticket sales and silent auction items.  How incredible is that?!  Thank you is not enough to all who contributed and danced the night away with us, and we (our family and our Pitt Hopkins family) will be forever grateful to Caroline for choosing us as her senior project.  This seriously must have been the most successful senior project ever.

The amount of planning that Caroline and all of the Harris crew did was unbelievable.  If you know this fabulous family of 7 (!), you know that Continue reading

Beauty Gives Back!

Logan’s Pitt Hoppin’ Dance-a-Thon is this weekend!  We are overwhelmed by the amount of love and support that has been pouring in, and I wanted to pass along two fantastic opportunities to all you beauty lovers.  BeautyCounter and Rodan+Fields are now joining OSEA Malibu as part of Logan’s luxury family!!!

My dear friend, Erika Jordan is a consultant with BeautyCounter.  For the ENTIRE month of March she is donating 10% of her sales to Pitt Hopkins research!!!  How awesome is that?!  I was not too familiar with BeautyCounter before Erika introduced it to me, but I have to say that I am now in love with not only the products, but the company.  Their goal is to get safer products into the hands of everyone.  Their ingredients are safe, and the products ACTUALLY work!  My current favs are the concealer, the sunscreen, the face oil and the kids wash.  They all smell incredible too!  I can’t recommend this company enough!  For more info or to order, please contact Erika at erikajordan10@gmail.com.  You won’t be disappointed!

Now, if you haven’t heard of Rodan+Fields you may be living under a beauty rock.  I have yet to try these products, but have always been intrigued by the before and afters I see all over social media.  I always assumed they were using some sort of filter, but I recently ran into a friend who looked like she went back in time about 10 years!  Sure enough it was Rodan+Fields she was using!  Well, last night I got a message from my sister-in-law, Darley that brought tears to my eyes.  She shared a post on Facebook about Logan, and within minutes a friend of hers, Tesha Merrell, wanted to help.  She will be donating 100%…yes, 100% of her sales in the next few days to the Dance-a-Thon!!!  She has never even met Logan!  Words can’t even express the happiness that I’m feeling.  I will for sure be ordering a few things that have been on my mind, especially the Lash Boost!  For more info and ordering, please contact her at tesha_seurer@hotmail.com.

Not only will you be supporting Pitt Hopkins research by purchasing from either (or both!) of these companies, but you will be supporting these two incredibly beautiful and selfless women in their business ventures!  How can you possibly turn this down?!

For more info about The Pitt Hoppin’ Dance-A-Thon and how to get involved without attending, click HERE.

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Pitt Hoppin’ Dance-a-thon!

 

Logan’s oldest cousin, Caroline, is hosting a dance-a-thon for Pitt Hopkins research.  How awesome is that!?  It is going to be an amazing night full of dancing and fun!  The event will be held under a tent with a live DJ, dinner, dancing, giveaways, and chances to win prizes. Click HERE for more info!

Registration is open to everyone!  If you are in the NC area, please join us!  If you cannot make it, but want to participate, please see below…

BE A PLEDGE PARTICIPANT
You can sign up as a participant HERE.  As a pledge participant, you will be able to have dinner, dance, and win prizes for a minimum of $25.00 in pledges.  It’s easy to earn pledges!  Just have your family and friends go to your registration page and they can donate there.

JOIN US FOR DINNER AND DANCING
If you would like to attend this fun event, but would rather not earn pledges, the cost is $25.00 per person for the dinner and dance.  Click HERE to register.

DONATE
If you cannot attend, but would like to donate, please click HERE.

We are still looking for sponsors and items to auction off.  If you would like to help with this, please click HERE.  Or, you can contact me!

We would LOVE to see you there!!!

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Holiday Frenzy

Holidays always seem to pass by way too fast.  I never feel like I accomplish all that I want to do, make or see.  There is so much pressure these days to have the perfect Pinterest worthy holiday to blast all over social media.  I admit that I do have boards on Pinterest, but I never have the time or energy to actually do anything with them.  But, I feel the pressure, and I genuinely WANT to create the most wonderful holiday experience for my family.  Growing up, my mom made every single holiday magical!  She has this incredible talent of transforming something simple into something extraordinary.  She blows Martha Stewart way out of the water, even now.  Too bad she didn’t capitalize on her talents back then!

So, here is a quick peek into our holiday frenzy 2016!

Halloween

Every year we host the neighborhood Dead End Party on our lawn.  We started the tradition our Continue reading

Black Cloud of Sickness

Not many people heard from or saw us for the entire month of November.  The entire month!  Our house was plagued with the black cloud of what seemed like the never ending funk.  I’m still not emotionally over it.

It all started with sweet Logan.  She caught something from somewhere (probably school) and was just a feverish, no appetite delight.  I’m not being sarcastic here.  She was the easiest patient out of everyone for the entire month!  I quarantined her and did my best (which obviously did not work!) to keep everyone and everything germ free.  Well, then next day or so Wes came down Continue reading

Logan Loves Daisy

When I was little I desperately wanted a horse, and thought that it was just going to happen.  My aunt had one when she was little, so obviously I would get one too.  I had tons of  horse toys and My Little Pony’s, plus, our garage was once the horse stable and chicken coop to an old estate, so we already had a place for it to sleep.  So what was the hold up?!  Well, I never actually rode a horse until I was like 10, and let’s face it…horses are a lot of work, and a lot of money.  Sorry mom and dad for pestering you!

Sweet Daisy!

To my inner child’s delight, miss Logie Poo can live out my childhood dream!  And I could not Continue reading

When Life is Just Too Busy!

Do you ever respond to emails or texts in your head, but realize that you never actually sent your response and totally forgot about it?  Well, I do.  A lot.  And I guess this has trickled into my blog posting as well.  I just went to publish posts that I thought I had written, but apparently they are still only in my head.  Good grief.  And to top it off, the images that I was planning on using are long gone…wiped away forever thanks to a genius “bartender”.  Grrrr.

Life has been incredibly busy since the fall.  There were school activities, therapies, holidays, and our very own black cloud of sickness that have kept me away from writing about miss Logan.  Instead of writing one long update I’ve decided to take the time to write about some of the fun happenings in our lives in separate posts.  So, pick and choose what you’d like to be filled in on!

A Girl and A Horse: Logan Loves Daisy

Black Cloud of Sickness

Holiday Frenzy

I don’t expect life to be slowing down any time soon, but I will be posting more!!!  And, we’ve had a MAJOR milestone happen in the last few weeks.  One that deserves it’s very own glory 🙂  I’m working on it!

 

 

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Hey Moms…You Have A Superpower!

How many times have you been told to trust your gut?  Of those hundreds of times, how many times was your gut right?  Now think about WHO has given this advice to you the most.  I bet a good amount of you would, without any hesitation, say your mom.  I know I would.  I’m going to let you in on a little, not so secret, secret…mom knows all.  Especially when it comes to gut feelings and intuitions.

I have always followed my gut, whether it was good or bad.  The times when it was almost a painful feeling were the times when I know I was right in doing so. The first one that comes to Continue reading

Meet Logan’s Little Pitt Sister!

This is Alexandra.  She is a beautiful little girl who was also diagnosed with Pitt Hopkins not too long ago.  I remember when her amazing mom, Nicole, introduced her family and shared their story.  I felt as if I could have written it myself.  Their journey was practically a mirror image of ours!  Nicole put together this beautiful video, which I feel captures every emotion that our family has gone through, and still goes through.  What she says in the end about her little girl really hits home with me.  Logan has the power to do the same, to light up my world just when I think it is closing in.  Please take a moment to watch this brave and touching video.  And please keep this sweet family in your thoughts and prayers.

Our family is so blessed to have such wonderful people in our lives, and we are so thankful to have our Pitt Hopkins families.  I’ve never met a more embracing, loving, encouraging and uplifting group of people in my life.  I’ve learned more from these parents than I have from most doctors, and am inspired daily by them.  No doubt we will be learning something from Nicole, Matt and Alexandra!

To keep up with sweet Alexandra check out her website, Alexandra’s Pitt Crew!  It’s fantastic!