We Did It!

Wednesday, August 13, 2014

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.

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

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