Happy Birthday!

Thursday, June 19, 2014

Everly's birthday present from mommy and daddy! SO CUTE!

Yesterday marked Everly's 4 month birthday!  She has doubled her birth weight!!  8 lbs 8 oz

121 days...not one taken for granted.

What a special day it was for all of us that love this little girl!  She is surrounded by more love than would seem humanly possible.  Even though some have not met her in person, she has made a mark nonetheless.

She is such an easy baby!  The boys were such a challenge compared to her!  (Love you Garren and Kendan but sadly it's the truth!)  She usually goes with the flow, seeming to have the patience of a patron saint.  Waking her in the morning remains one of my all-time favorites of my day.  Her eyes open slowly and she begins to stretch and look around, scrunching her tiny body into a ball.  Then she just is wiggle worm on her changing table as I ready her for the day...happy, content and relaxed.  She knows the routine of car rides because as soon as she gets in her seat and the music and lights start on her seat entertainment toy, she just snaps to attention.  It almost always keeps her attention until she dozes off.  In the rare moments that she sleeps in her crib or other baby apparatus, she will wake and not even make a peep.  Thankfully we have the video monitor that we keep close tabs on in those situations since she's so quiet. She just really is so easy to care for all around.

Oh, my! How adorable is she?

She has a special way of studying your entire face when she is in her thinking zone.  Her big round eyes just linger over each part of your face as if memorizing every detail.  She takes after her Nana who is an investigator checking every last detail.  We all love when she studies us.  It is fun to watch as someone new to her holds her because she's even more interested.  There's a way she raises her eyebrows and crunches her eyes that tells you that she's in deep focus.

In her 4 short months thus far, she has managed to check off an extraordinary amount of experiences from her bucket list.  (Yes, she did tell me exactly what she wanted on this list if you are wondering!)  She has gone to the beach three times, gone fishing twice, tasted ice cream, looked at a shiny helium balloon, gone for two bike rides, been to the park and has hiked countless times around our favorite local trail.  We can't wait to continue to check things off as we  expand her list!  A few VERY special things we are looking forward to for her in the near future!

We are so grateful for her continued good health.  It remains to all of us an absolute miracle!  Even her doctors are amazed at how well she's doing, both overall and with her physical abilities.  Our cardiologist even commented that she is doing remarkably well "considering" and that her heart and lungs sound good.  The GI doctor mentioned how strong her neck muscles are becoming and was in awe of how well she was holding her head up.

I've kissed each part no less than a thousand times already!

Health-wise there are a few areas that we are working to improve for her.  One major issue is the frequency of her reflux episodes.  Not only are they not good for her esophagus but they also frighten her as she tries to hold the milk in and keep it down.  It is a 5-7 times a day battle for her and the current medication doesn't seem to be doing much to help.  She chokes as it comes back up which we always fear that could cause aspiration then possibly pneumonia.  So, we took her back to the GI this past week to discuss the situation.  She was prescribed another type of medicine that may work better for her so we have high hopes for it.  She begins it today so I'll keep you posted.  We also were told to increase her food intake now that's she's a little butter ball!  Hopefully her tiny stomach can handle the extra fluid.  If not, we will be fortifying her supply she is on now with extra calories instead.

Therapy continues to go well for her muscle tone.  We can see all the improvement and growth she's made.  She enjoys bouncing on the therapy ball and, of course, when they give her a little foot massage mid-way through session.  Feed therapy isn't going as well only because Everly's not really interested in taking the bottle.  She plays with it in her mouth and doesn't reject it but certainly has no desire to suck.  However, mama has a few tricks up her sleeve thanks to a chance encounter last week (although, we all know there are no "chances")!  Stay tuned to see how that turns out for us!

 What a sweet baby!

So excited that we will be beginning baby food this week!!  We have the go ahead from the GI doctor and as soon as mommy makes some homemade carrots and sweet potatoes, we'll get this party started!   Thrilled to be using our spoons from the baby shower and our stock of bibs that haven't been touched yet either!  We'll let you know how it goes.

While we are so thankful for where we are today, our family is also very mindful of other Trisomy families who are mourning the loss of their babies and still others whose babies are in the hospital.  Please keep their families in mind and pray for peace and comfort for them.  Precious Elizabeth has been in Heaven for six weeks now and today is her momma's birthday.  Our friend, Dana, is working hard to get her little angel home with her from the hospital as soon as she can.  It's taxing both physically and mentally so please pray for strength for her.

We have received many emails and questions based on my last Caring Bridge journal entry.  It has been asked that if someone donates to Caring Bridge as a tribute to Everly, will those funds go to her?  The answer is no.  They do benefit us in the sense that we are able to use this forum to share our story but the funds go directly to CB.  A GoFundMe account has been set up on Everly's behalf that will go directly to her.  A trust will be set up for her at the end of the month and the address for that will also be posted.  A special thank you to Toni Germinario for her idea to work on and set up both of those accounts.  Early on after Everly's birth, Courtney set up a PayPal for Everly and we thank you for that.  We appreciate the love shown to our family in so many different ways.  We are truly touched and appreciative!


Sister laying on brother's lap.

We look forward to continuing to celebrate birthdays with Everly!  Save the date for the big bash...6 months!  If you would like to come celebrate it will be August 23rd from 3-5 at the Westchase Swim and Tennis Center.  Lots of fun games and a great day!  Surprise...it's a Princess and the Pea theme!  Yay!

With love and appreciation,


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