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

Off and Running

 Everly doing her school with Ms. Mary Ann practicing sitting up.

Well, today marks the 191st day of us being a family of five! Continuously counting our blessings, continuously being mindful of what is important. Our thankfulness is never far from our minds and is said aloud at every family prayer. We have made the most of every single day we have had thus far and plan to continue.

Much like everyone else in the country, we are getting geared up for a new school year. We will "begin" on Tuesday but we really school year-round and take breaks or go on field trips as we need to. However, the new curriculum (remember the excitement over the boxes this summer??) will be christened next week!

 Working on neck strength during tummy time.

Of course, this school year will be unlike any other and will come with its own challenges. The biggest being trying to balance everyone's needs simultaneously and getting everything done on a daily basis. But I've already figured it out, I'm happy to say. I can't. Just can't. I will not be able to take care of them each simultaneously and will not be able to check off each scribbled "to do" off my list by dusk each day. So, the way I see it is that if I already know these things, then anything above and beyond said expectations makes me a winner.

 

Sweet love

In all seriousness, though, I do have a plan. As my boys are well aware of one of my favorite phrases, "If you fail to plan, you plan to fail." I LOVE that saying. A LOT. While my plan may have "escape routes" written in, having a general idea of the path is all that matters right now. Many people have asked me the specifics of how I homeschool a now 3rd grader and a now 10th grader with Everly and all her needs. So, I'll lay it out for you as best I can...allowing for the occasional off day thrown in here or there.

• Outsourcing: Co-op classes for both boys, 2 online academy classes for Garren, the rest with me
• Planning: My favorite motto is "If you fail to plan, you plan to fail."
• My dad: He's the key to it all. He transports, supervises, plays with, you name and he does it!
• Flexibility: So, with our new sister in the mix, we've learned that school can happen anytime and anywhere.

 

Kendan's first time carrying baby sister! He was so excited!

I have learned that I can school from the floor while letting Everly have some tummy time or working on rolling over. I am able to read out spelling words while feeding the baby and massaging her feetsies. I can correct papers with a baby in my lap. The boys can work with little sister doing her own "school" in the office alongside them. It is possible to read literature with the boys while the baby is wrapped in the Moby wrap.

 

Big brother love

I think most importantly I've learned that our school isn't just about what we're learning in books. While it is valuable and we do certainly attend to that, I know that our focus should be so much more. We are actively working on creating a lifetime of memories, making bonds with each other and being present in the moment, no matter how crazy or chaotic it might be.

Book learning will always be, but what we have now may not.

With love and appreciation,

Crystal

Everly's 6 Months Old

Happy Birthday!!

This past Wednesday marked Everly's 6 month birthday which is a huge milestone for her!

Saturday will be her big Princess and the Pea bash and we hope you can join us!

However, if you are not able to due to location, illness or prior commitments, we would still love for you to "be" there. Please send me via text or email a picture of you or family to include in a "Wall of Love" for Everly to be displayed at her party. Following the party, the pictures will be placed in a special book for her (and us). We are blessed over and over by all those who pray for and support us in various ways. It would mean a lot to our family to have a picture of all of our prayer warriors and their families.

crystaldmm@earthlink.net

For real! We played dress up with swimsuits. I have a slight obsession.

Thank you for taking the time to send it to me! I'm preparing the board Friday for the party so send 'em on to me!

By the way, after the party and a few solid hours of sleep, I plan to post a healthy size update on Sunday. Stay tuned for that one! Plus, I will do an all party post, too, when I have pics to post and have compiled my thoughts.

Thank you for your continued prayers for Everly! She is "well" and illness-free and is ready to don her princess gear!

With love and appreciation,

Crystal

Yay! Splints to help open her hands. She will only wear them while sleeping. And, yes, she is asleep while the OT is measuring her for the custom fit splints.

An awesome therapy tool Daddy made for Everly to use in our home. Helps with balance, spatial positioning and more.

Morning photos by the natural light in her Princess and the Pea dress.

Photos Please

Hi everyone,

As you know, Everly's big 6 month birthday party is August 23rd. However, some people are not able to attend for a variety of reasons...location, schedule, illness. We would like you to still be "present" at the party and we've found a solution for that!

We are going to create a Wall of Love for Everly at her party with photographs. That's right! We are going to print copies of photos (hold on, we're getting to that part) of her supporters, followers, friends and family and display them. So, all you need to do is either snail mail us a 4 x 6 photo of yourself or your family or send one image via email or Facebook messenger.

Now for you folks that are planning to attend, please also send us a photo of yourself and/or family letting us know in a note where you're from, who's in the picture and how you first heard about Everly. Why? Because after this party all the pictures are going to go in a photo scrapbook for her memory items.

Thank you in advance for helping make this a wonderful party!! Don't forget to RSVP :-)

If you would like to mail her a card (don't forget your photo), you may do so at the following address:

Everly Hopkins

3905 Tampa Road #2696
Oldsmar, FL 34677

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!

On the Road

Okay, for all my non-Facebook friends and family who didn't see my announcement earlier...we've hit the road! Yup, decided to go on a bit (can you say understatement??) of a road trip.

This isn't just any road trip, though.

No, siree!

We are checking off another special event from Everly's bucket list! We are sweeping her away to the picturesque mountains of North Carolina compliments of my parents.

Annually, our family visits the mountains and this year, as surprising as it is, is no exception. I mean come on, a trip to the neighborhood pool takes us 40 min to prep and pack for alone! Who would think then that crossing three, four if you count leaving Florida, state lines would be doable?

Well, like the statement goes: "Where there's a will, there's a way!"

And WILL we had! And determination. And excitement. And just about anything else we needed to make this happen.

Starting with the fact that this was the first time we needed to take two vehicles for the trip. In one pic I posted, you can see our van and their RAV side by side loaded.

So, here we are in Savannah, our pit stop for the night. I must say that I am pooped! I have had a very hard time turning "off" my brain to sleep or rest the last two nights. I'm overly concerned that I will overlook something that needs to be packed and then Everly will be without. Talk about guilt!! And let's face it, an Ambu mask and 10ml enternal feeding syringes aren't on the shelves at the local Target. Just sayin'. So mama's gotta make sure it's all packed! Hubby's great but he's been very busy with work and the boys are going off their pack lists I gave TO them. Haha!

Sweet Pea is likewise out for the count! She didn't have a restful sleep in the van as kept being disturbed and never hit a deep sleep. She wasn't overly crabby just really letting us know that she wanted some quiet. A bag opening, a chuckle, stopping for gas. You name it and it jarred her.

Shortly after arriving at our hotel for night, she had her feed (side note: I dislike strongly that term "feed" referring to my daughter's meals but that is how they are named in the GI world.) and conked out! That was about 6:30 and she's still out now about 9:30. She's out for the night! We are all right behind her! Traveling is tiring!

So...in my estimation, packing and preparing for this "road trip" is equivalent to the packing and preparing for a month long backpacking trek across Europe. In the winter.

But you know what?

Every single wrinkle from worry, every lost minute of sleep, every careful precaution is worth this trip to the mountains as a complete family of seven.

Stay tuned...lots of updates this week!!