And Like That, She is 5…And What A Difference A Year Makes!

I look at this sweet face today, feeling like I blinked and five years had gone by.  I can still see the sweet little expressions she made when she was a baby, and she still seems to somehow melt into my lap the same way.  Just with longer legs.

Every year we take Logan to the beach for her birthday, and this was the best year yet!  We ventured two and a half hours away to North Topsail Beach, NC.  I had only been once when I was in college, and it was just as beautiful as I remembered.  The beaches are long and sandy, filled with great shells and the occasional shark tooth.  It’s not very crowded, and it is quiet.  There really isn’t much to do other than enjoy the beaches and the water.  It was just what we all needed.

We literally waited until the last minute to book the perfect house (typical McCauley side coming out!).  We signed the contract on Friday evening, and headed down on Monday morning.  We would have went down on Saturday, but Jack had swim champs that weekend, and there was no way he was missing that!

We stayed at a house called “Sea Glass”.  It was on the sound side, with a beautiful endless dock, and right across the street from the beach.  The views were impeccable.  On the front decks there were beautiful ocean views, and on the back decks you were drawn into the serenity of the sound.  The house came equipped with all the beach gear you need, kayaks, a clammer (!), two crab traps, and just about everything you need for a relaxing week.

In true Bomar vacation style, it stormed the first afternoon we were there, which was ok.  It cleared up by the evening and gave us this stunning sunset.  The kids stood silent as we watched the sun get lower and lower.  Even Logan was mesmerized.

We spent the week playing in the sand and water, fishing, crabbing, kayaking, and just enjoying our family.  There really is something to be said about vacationing somewhere where there is not a ton of stuff and activities thrown in your face.  We didn’t feel obligated to see all that there is to see, and do all that there is to do.  There were a few museums to choose from, and a putt-putt place, but that may have been it.  I’m sure there was more, but we just didn’t seek it out.  If we were bored in the afternoon we made our own fun, and it was perfect!

Doesn’t this look cozy?

Logan had such a great time this year!  Last year she was a bit cranky, and I blame it on the sleeping situation.  She still fit in her pack-n-play, and that was our only safe sleeping option for her.  I know it was not comfortable, and I know how I get when I don’t get a restful sleep.  Well, this year I found basically a portable version of her bed!  It’s called the Privacy Pop, and it was a life saver!!!  She slept long and well in that baby, and woke up happy and ready to play!  I wish I could say the same for Wes.  He was put in the pack-n-play and ended up in our bed in the middle of just about every night.  Our own little bed bug.

 

 

Logan’s favorite thing to do was to sit on the waters edge on the beach and let the waves crash over her.  The pure excitement in her face when the waves came splashing in was priceless.  The giggles that came out were infectious!  She explored the sand with her fingers and toes, and loved the salty taste on her lips.  The whole experience was therapy for her…sensory, OT, and even PT when she had to use her core to not get tumbled over when a big wave came in.  I wonder if we can bill our insurance for this 😉  She even made a little friend.  There was a family staying close to us with a girl her age, and was as sweet as could be.  She played with Logan in the waves and shared her freeze pops and mermaid Barbie.  I cannot tell you how great this felt to watch.  Logan can be intimidating for kids, in a way.  She looks “normal”, but I think her fun loving loud self gives away her disguise.  Some kids find it strange I guess, but some kids see past it and want to join in her fun.  Hopefully everyone will eventually want to escape into her world, even for just a moment.

The boys had an equally fantastic time!  Jack is our little fish and up and coming surfer for sure.  He is fearless in the water, and can dive into a wave like no other.  Must be in his genes…my dad and grandfather were both ocean lifeguards on Long Island.  This kid was smiling ear to ear on his boogie board.  Wes would only go in with his floaties, then got tumbled by a wave and was done with wearing them.  He cautiously stayed in waist high water the rest of the time.

I could share every little detail here, but it would be a bore to many.  So, here are just some of my favorite memories from the trip:

*Evening strolls on the beach, watching Jack search for shells, watching Wes throw shells into the water (we told him it was “adult Swim” so he wouldn’t go in…haha!), and seeing Miss Logie take independent steps on the beach!  Last year I posted about how one day she would be running on the beach with her brothers…we are almost there!  She can walk about 15 steps on her own now, but walking on sand was a whole new experience.

                      

*Teaching Jack how to fish and crab, and how to harvest mussels.  Growing up on Long Island the sea was our farm, and I realize now that we didn’t really take full advantage of what was literally at our fingertips.  He was so excited to check the crab trap every day!

                            

*Kayaking with Jack and David.  It was so peaceful and beautiful.  We were the only ones out there, along with the jumping fish.  Jack had never been, and now wants to do it again at Jordan Lake.  Sign me up!  I asked him how he knew how to even paddle, and he said, “from the Wii!”.  Ha!

                  

*Having my parents join us for the last couple of nights!  Both of them were such beach bums back on LI, and they really haven’t been back to the beach since they moved to NC.  I desperately wanted them to come the whole week to escape and relax, but we will take what we can get.  They both were beaming at the beach, and we were all beaming that they were with us!  Each kid has a unique relationship with both of them.  My dad turns into a little prankster kid when he is with Jack, and it is seriously the best!

                              

               

 

*Logan’s birthday celebration, of course!  We all woke her up and sang to her (she has turned into a late sleeper!), and she giggled the whole time.  We spent the morning at the beach, opened presents, had cake and went on an evening beach excursion.  It was great!  She has grown so much in the last year, in so many ways.  She is more confident in herself, and it shows through her communication and the desire to move around independently.  For a few months now she has been walking independently, but still needs someone to shadow her because she will fall.  It’s pretty funny if you catch a glimpse of me walking behind her.  I feel like a little old Italian lady chasing her cat.  Which may just be me one day 🙂  Her eye contact is fantastic now, and her vision is so much better than a year ago.  When I walk into a room she will go out of her way to look at me, and keep that gaze for much longer.  Her cognitive abilities are amazing us every day too.  We started a new communication device that uses her eyes to speak!  It’s incredible, and I will share more on that later.  Lot’s of stuff happening over here!

                         

*Our last night’s feast!  We harvested a ton of mussels and some oysters, caught some crabs, and stocked up on some Mahi Mahi and more crabs at the fish market.  I forgot how much work goes in to catching your own food!  Cleaning the mussels was a beast, and fighting the lethargic crabs into the pot was a bit heartbreaking.  But, we ended up with an outstanding spread.

                              

There are a ton more memories, but some things are better kept private.  You know, save a few things that are precious to your family without having the world know, or without having to feel the need to overshare everything.  But, thank you for letting me share a glimpse into our little girl’s fantastic celebration.  She has made such great strides this year, and I cannot wait to see what she accomplishes next!

Here are a few more pictures…

            

 

   

                    

 

 

And that’s a wrap!

 

*You can find all of the travel products we used in my new Products page!

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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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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!

OSEA…Heaven in a Pretty Bottle

I’m going to let you in on one of my all time favorite finds. I wish I found this company years ago, especially in my 20’s. It is the one product that makes me feel like I am back in the ocean or by the sea. The products are amazing…they are 100 % natural, non-toxic, vegan and gluten free. And…they do exactly what they claim to do! That, my friends, is very hard to find.

Osea Malibu

As you can see, it’s time to re-order!

OSEA Malibu. Unless you live in CA, or frequent upscale spas you may have never heard of them. They have a strong celebrity following, like Olivia Wilde and Jessica Biel (I follow her Instagram, and this is how I found out about it!), but they are not over saturating the beauty magazines. This is why I feel like it’s a rare gem. Have you ever noticed that the best products are the ones that aren’t plastered everywhere?!

What I like best about this line are the ingredients. They are safe and do not have anything harmful. What we put on our skin is just as important as what we put in our bodies. I started using this line when I was pregnant with Wes. We did not have any answers to Logan’s delays at that time, and I started to wonder if any of my mainstream beauty products that I was using over the years were to blame. I threw all of those away and stocked up on OSEA. I am SO happy I did! I have not turned back. I can honestly say that these products do their job!

There are so many other things that are heavenly about OSEA! Every single product smells clean and fresh. They are light, but luxurious! And, the bottles are so pretty. Very clean and simple. There is a product for every skin type too! Here are my favorites:

Ocean CleanserOcean Cleanser

This is one of their classics, and for good reason!  Made of rich minerals, proteins and vitamins, this cleanser gently removes what needs to go!  It leaves a clean, energized surface for moisturizers or serums.  This smells divine!

 

 

 

Advanced Protection Cream
Advanced Protection Cream

This is the fountain of youth!  It basically helps to regrow collagen, all while reducing fine lines and wrinkles.  It is rich, but not in a heavy way.  I do not have dry skin at all, and this has never ever felt greasy or too much.  It’s great at night, and gives an extra glow in the morning.  Since becoming a mom I’ve developed lines and wrinkles…all of which I’m sure came from all of the faces I make to entertain the wee ones!  This moisturizer continues to turn back the clock for me.  It is a bit pricey, but I’ve had the same jar for almost a year!  I use it on Logan too when she is hanging out with me while I get ready.  Her skin is absolutely perfect to begin with, and this makes it sooooo soft!

 

Ocean Cleansing MuddOcean Cleansing Mudd

I use this deep cleansing, gentle exfoliating mud once a week.  I actually like to let it sit on my skin for a few minutes.  It has tea tree and peppermint oils, which gives your skin a fresh, tingly feel.  It’s awesome in the winter…clears up your sinuses in no time!

 

 

Sea Vitamin Boost
Sea Vitamin Boost

This is my go to in the summer!  It’s a light, hydrating mist that refreshes your face while stimulating cell renewal. The Pomegranate Extract  boosts collagen, and the Red Wine Extract actually has anti-viral and anti-fungal properties!  It’s also great for skin irritations.  I spray it on Wes and all of his itchy spots.  Jack likes it too.  Logan is on the fence…she’s not a fan of light misting in her face.  Now send a big splash her way and she is one giggly chick!

 

I have yet to try all of their products, but I’ve been keeping my eye on some of them.  As I was writing the draft to this post I contacted OSEA to see if I could use some of their images.  I told them how much I loved their products, and how I loved that I could use them on everyone in the family.  I got a response within hours!  Not only were they extremely kind and helpful, but they asked to look at my blog (didn’t include the link in my original email…d’oh!).  The next day I got an email from them and fell further in love with their company.  They loved the blog, and Logie Poo!  And…they offered to send me their Anti-Aging Body Balm (on my list!!!) to try, specifically on Wes.  Wow!!!  It gets better.  I received the package within a few days, and they sent more products to try!  I was floored that they did this.  How nice and generous is that?!!

Anti-Aging Body Balm Undaria Argan Oil

They sent an Anti-Aging Body Balm, Undaria Argan Oil, some samples and another bottle of the Sea Vitamin Boost, which I had ran out of and only had the travel size left!   I cannot tell you how happy I felt, and how great my skin is feeling at this very moment.  The Body Balm is working wonders on Wes’s eczema!  I took a before picture and will take an after in a few days.  It’s amazing so far!  The Argan Oil is something I would have never thought would work for my oily/combo skin, but this may be my favorite so far.  I’ll keep you posted on these and let you know how they are holding up.

If you’ve tried OSEA I’d love to hear your thoughts!  Especially on products I’ve yet to test out.  If you’ve never tried them but would like to, they have a great return policy…even if you’ve used it!

Potential Treatment!!! Wow!!!

I just received an email from Audrey Davidow (one of the amazing moms who have gotten the ball rolling on research), and am beyond excited and hopeful for Logan’s future!  The Lieber Institute was one of the first funded labs for PTHS, and they have possibly come up with a treatment!  This is amazing not only for Logan and her Pitt “siblings”, but for others on the autism spectrum.  Click below to read the full article.

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Here’s another fascinating article:

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Logan’s Version Of Pitt Hopkins

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Logan, at around 2 years old.

When we were first diagnosed with Pitt Hopkins, our doctor told us not to compare Logan to the statistics that we found on the internet.  He said that since this is such a rare syndrome the information available is outdated, and certain aspects may or may not apply to her.  This was both a sigh of relief and a shock.  How is it possible that, in these modern times, there can be such little information about something affecting hundreds of children and young adults?!  It is beyond frustrating.

So, Logan does not have some of the most common characteristics of this syndrome.  She does not hyperventilate, she does not have any known

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