A Party Fit for a Princess

 

The birthday princess

It can safely be said that Everly's 6 month bash was a party fit for a princess! It was a perfect day in every sense.

We were so blessed to have so many hands on deck to make the party just right. I could not discuss the party without making mention of the special folks who did so much for it! Many thanks go out to those who just soared above and beyond for our sweet Everly. Here goes, in no particular order:

Gina & Lauren Deptula: overall party planning with me, floral arrangements, endless cutting, rolling and décor prep, running around getting supplies, you name it, they did it! (Check her out at Craftology 101 on FB)

 

Everly's beautiful dress, shoes, handmade socks, and tiara

Heather High: donating her time and talent to capture all our special moments at the party and all the editing after (Check her out at High Family Photography on FB)

Traci Heindorf: the adorable princess cake and meticulously handmade pea pod cupcakes (Let me know if you need a great cake or cupcakes for an event, I can give you her contact info.)

April Hetrick: tons of cookie favors individually decorated and wrapped

Kendra Drake: making tons of fruit wands and a special Princess Pea Pasta salad for the party

Sarah & Dan Edgar and kids: hours of set up and clean up combined

Melissa Perez and kids: hours of set up and clean up combined

Patricia & Michael Lesch: coming early and jumping right in to do whatever necessary for set up

Silly Little Girls: 1/2 birthday outfit and bloomers for sweet pea

Joanne Bishop: Thank you for Everly's surprise birthday outfit! What a perfect dress!

Kelly Adams & Christy/Bobby Barnes: for the huge sacrifice to make the long trip to Everly's birthday!

To all our guests: Thank you for making it a point to come to our daughter's party. We love you!

 

The food table.

To my parents: Thank you for pinch hitting whenever and however we need you on a constant basis. Our lives wouldn't be the same without you and our kids certainly wouldn't be who they are without you!

A big thank you to everyone who sent in a picture to make her Wall of Love!

Thank you all for your selfless devotion to making the day everything we hoped it would be for Everly!

Everly handled the party like a champ. She seemed to be fascinated with all the faces and people which didn't surprise us as she's never actually been anywhere with this many people at once. Mid-way through the party she was so tired that she quietly dozed off in her cushy throne. Sweet girl.

The room was literally transformed from blah to beautiful! Puffy lanterns were hung from the ceiling. Linen tablecloths with table runners and floral arrangements covered tables. Banners adorned the walls above the food and sweets tables. The dessert table covered in perfectly frosted cupcakes and a breathtaking princess cake. The Wall of Love full of pictures of families praying for Everly. The room was perfect.

 

Kelly Adams presenting us with the angel after the party

I was able to have some special time with Kelly Adams after the party that meant the world to me. Kelly made the trip from Jacksonville with two of her daughters to attend the party. What made this such a special meeting for me is that Kelly is Elizabeth Joy's mother, Everly's friend who went to be with Jesus on May 10 of this year. During our time visiting, she gave us a beautiful glass angel that has been passed to five other Trisomy babies, including Elizabeth, and now to Everly. What a special thing! She also brought with her and gave to Everly a one of a kind headband made for and called the Elizabeth Joy headband. It is made with the Trisomy Foundation colors and was worn proudly by Elizabeth Joy. It must have been such a moving decision to pass such a special item to our family that belonged to their daughter. Thank you, Kelly, for those truly special gifts. We treasure them!

 

Elizabeth Joy Adams 7/19/13 - 5/10/14 and Everly Marie Hopkins

We were so happy to see all the people who came out to celebrate such a big day in Everly's life. Such a blessing for us to celebrate 6 months with friends! It was such encouragement to hear everyone's thoughts and sentiments. To see everyone smiling and laughing and just loving on Everly was heartwarming. The love was plentiful in the room and for that we are so happy and thankful. It was a perfect day. Thanking God for the opportunity to love her for all this time!

I can't wait to invite everyone to her 1 year birthday party!! **Too many pictures to include with this entry so more will be added separately to the Photo section in the next day or so. Check back for those. Plus, we are working on trying to upload the video Jimmy made for the party here so you all can view it, too. I'll let you know when it's ready.**

With love and appreciation,

Crystal

We Did It!

Our AT Adventure

Well, we are home now. What a trip it was!

Packing for a trip with a 7 year old and a 15 year old is one thing, but packing for a medically fragile baby is a whole other story. I was so worried the week prior to leaving that I would forget something that we needed. I made several lists and had them in varying places around the house just in case I thought of something else.

The final report: nothing was left behind, forgotten or otherwise MIA. Yay!

Most of what was packed, though, wasn't even used fortunately. No, you didn't read that wrong. Most of the extras that were packed were medical/emergency/just in case items. And I am so pleased to report that it all stayed unopened.

In case you were wondering, here's a look at the pack list for her alone in no particular order:

3 large oxygen tanks

3 medium portable ones

mask

ambu bag

nebulizer & mask

Pulse oximeter, leads and sensor

meds: Diastat, Prilosec, Caffeine, Milk of Magnesia, Polyvisol, Albuterol, another seizure med, and Morphine

Tegaderm tape, white pad, medical scissors for retaping her tube

1 extra NG tube

15 feed bags

Food pump for night time feeds

2 flashlights for night feeds and pumpings and to check on her

countless 10 ml syringes for her milk

numerous 3 ml syringes for some meds

handful of 1 ml syringes for other meds

2 stethoscopes

bottle warmer

2 cans of formula for night feedings and calorie fortification

bottles for mixing and storing

thermos for hot water to heat milk away from home

jug of nursery water

jug of distilled water to clean feed bag in between feeds

Lysol spray

Lysol wipes

Travel thermos (2)

thermometer

nose sucker

brush

Lube for NG tube

Nasal spray

Infants' Tylenol

Suppository

Breastpumps: the battery one and the hospital-grade, flanges, wipes, sterile water for on the road cleaning,

Car refrigerator for meds that need to be kept at a certain temp and mama's milk

tape

Vaseline

qtips

nail clippers

2 playmats

toys

baby books

her bible

foam pad

therapy chair

toy bar (it comes apart)

blankets

sweater

jackets

sleepers

socks

summer outfits

cooler weather outfits

headbands

bathtub (foldable)

shampoo

body wash

wash cloths

baby towel

her lovey

diaper cloths

blankets

spoon

And I'm sure now I am forgetting some things but you get the point, right?

Our trip was truly magical, for us the happiest place on us. Sorry, Mickey, but you've got nothin' on the mountains!

The forecast was glum but it wouldn't shake our enthusiasm. Rain everyday. Yup. Everyday. 

My absolute favorite picture of the week and is number 2 of my all-time favorites of her face pictures!

But, boy, did God show up big!   

We had unbelievably beautiful weather all the way until our last day but we were packing up anyway!  Our week was packed with fun-filled days and plenty of outdoor experiences.  We spent a lot time enjoying the amenities at the villa this go around.  We are usually here in February when it is brutally cold and snowing (yes, by our choice!).  And while there's stuff to do, the boys found it to be a much more "full" trip in the summer.  We fished, rode in the paddleboats, played cornhole together, went for walks, roasted hot dogs, made s'mores and sat on the porch.  The boys played cards with Papa, went swimming, and worked on some projects at the activity center (hiking sticks, terrarium, sand art).  

Nana, Papa, and Everly down by the creek.

The rest of our activities was pretty much in the great outdoors.  We went on two college tours with Garren.  Then we stopped and found a rather large swift running creek to dip our toes in and it was a hit!  Everly enjoyed the scenery and was fascinated by the sounds.  It was quite fun to watch her study the trees.  We hit the AT or Appalachian Trail for a brief walk up Roan Mountain to Round Bald.  That was, for me, the reason for the entire trip.  For Everly to see a white blaze and to be on this special footpath.  And we did it! 

My best friend, Wendy, and her three girls came up for a visit one day.  What a special treat that was for all of us!  It's always nice to sit on the porch and have girl talk!

It turned out to be the trip we had all dreamed of for her.  We were so blessed and thankful to have this opportunity.  We will cherish every memory from it.
Okay, now some updates on Everly:  Her weight gain is slowing some as she's 10 lbs 2 oz right now.  She's doing something funny with her tongue where she swirls it and sticks it out.  It's actually quite funny to watch.  She's still just taking licks of baby food.  But she is enjoying her pacifier but isn't sucking it still, just playing with it.  She's had no illnesses or sickness and for that we are thankful.  She'll have her 6 month check up the week after next.

That brings us to the next point...she's turning 6 months old next week!  Her birthday party is Aug. 23 from 3-5 and we hope you can make it!  Please send me an email or text to let me know if you plan to attend so I can plan accordingly.  It is going to be a super special day with games and yummy food! 

Please keep my dear friend Dana and her family in your prayers as they've just now passed the one month mark since Melanie went home to Jesus.  Time does not heal wounds like this.  

Also, please keep Anissa's sweet girl Elisabeth Maxine in your prayers as she's had a few unsettling reports on her health as of late.  We want to lift her name up to our Heavenly Father.

  Here's my smiley princess!

Thank you for interceding on their behalf, friends!  If you will also pray that Everly's health remains event-free, no germs cause illness and that she remains safe during her party.  

I'm tired tonight so I will sign off now.  Hopefully next post will be more meaty and specific!  But better something than nothing at all, right? 
 
With love and appreciation,

Crystal

 Papa and Everly taking a nap. So sweet!

Life is a Special Occasion

"Life is a Special Occasion"

A little evening light eye tracking and music time

I came across this quote today on the side of a Hallmark store bag.  Prior to February, I would probably not given it a second thought.  But stumbling across it this afternoon, it struck me as a profound statement.  Life as a whole IS a special occasion.  But we, in the hustle and bustle of life, tend to not take the time to stop and think about the sanctity of our everyday existence.  The enormity of the statement has stuck with me throughout the day. I spent the rest of the evening reflecting on our past 8 weeks with Everly.

Her favorite time of the day!

First and foremost as we approach the celebration of her 2nd month birthday this Easter Sunday, I am in awe of the mere fact that our sweet baby born February 20 at 4 lbs 4 oz with a condition labeled "incompatible with life" is not only living but thriving.  Yes, thriving.  This girl is a fighter.  She is strong.  She is determined.  She is still here and we are so blessed.

My heart swells with pride at every hurdle she overcomes.  Every stereotype she defies.  Every milestone she reaches.  She has gained two pounds in the last two months which for her is enormous.  She is alert and responds to her family.  She overcame pneumonia and a collapsed lung...at home without hospitalization when she was just under a month old.  She somehow learned to swallow even though she's never taken milk by mouth.  She amazes me.  She was given this perfect life to live as only God intended and she's making the most of it.  What a testament she is and how proud God must be of her!
 

We've lost count how many hikes this makes for her now :-)

We have continued to celebrate each day of her life deliberately.  We make sure to each devote time to her, talk to her and just soak her in as much as each 24 hour period allows.  We make it a point to take her outside for a walk daily to enjoy the warmth of the Florida sun or the coolness at the end of a rainstorm as the case may be as of late.  She receives her beloved bath each evening along with a massage or two.  She has days full of love and attention.  Her life is a special occasion to us each day.

We continue to check items off her baby bucket list...sometimes completing them two, three or more times because they are so fun.  We continue to shower her with experiences, outings (outdoor only still for her safety) and fun the way a family with two boys can.  She is living a full life at a whopping two months old and I couldn't be happier for her.

Cute little thing in her spring dress out for a walk!

So, in getting back to this Hallmark bag and the quote on it, I am so glad that we are able to treat each day of her life as a special occasion.  I don't know how many days she has.  I don't know how many days my boys have.  I don't know how many days I have.  You don't know how many days you or your family has either.  So, spend each day of your life like it's a special occasion.  You'll be glad you did!

As we enter Easter weekend... "Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead." 1 Peter 1:3 



With love and appreciation,

Crystal

Someone's happy :-)