GoShoutLove!!

 

My beautiful girl...inside AND out! Oh, how I love her

 

Literally just PUMPED with EXCITEMENT!!!

GoShoutLove is an organization that works to help raise funds, awareness, and just shout LOVE for families who have a child with a rare illness. Each month a different family is selected and the whole month is spent showering the child and family with love!

Guess who was chosen for November?? YES! Our very own EVERLY!!

Loving a child with a rare illness is EASY. Dealing with some of the facets of what it entails is not and even more the gravity of the diagnosis. So, it means the world for those of us who do live this day in and day out to be showered with love and to be given the assistance that will allow us to just focus on making every moment count. We are touched, honored and appreciative of this truly special opportunity.

Go check it out using any of the following:

Instagram: @goshoutlove
Web: www.goshoutlove.com
Love For Everly’s FB Page

Friends and Family, can you please share this post to get the word out?

This is such a worthy organization! The families they support are incredibly blessed by their involvement. Saying thank you is just NOT enough but we DO thank you!

We would LOVE to see everyone sporting a new shirt for Everly! Go get yours today. Thank you :-)

*Thanks to Jaimee Ponce Photography for the photo!

To God Be the Glory

 

Boy, oh, boy! God is good and God's timing IS perfect!! Oh, I praise you!

So, yesterday was Everly's upper GI procedure. It went fine and she actually enjoyed it as you see from the pictures.

Received a phone call within ...a couple of hours from her GI. Everly does indeed have malrotation of her stomach. Since it's fresh, I haven't had much of a chance to research it.

But I do know this much: if not caught and allowed to stay unrepaired, the bowel can stop functioning and intestinal tissue can die from lack of blood supply if not treated..meaning potentially life-threatening.

As you all know, we've been on the fence about getting a g tube. However, with her increased reflux/choking, we felt like we must see the doctor to discuss it. Once decided, she sent us for this upper GI procedure that ultimately found this problem.

Was that luck, fate, chance?

No way!  That was our loving God orchestrating this sequence of events...in the right time, how He ordained it to be.

I am 110% on board with having the surgery for her as I know Jehovah Rapha (our Great Physician) planned it so.

*As for the tube, it will have to be placed surgically and will most probably be down alongside the repair she will need. Looking at about a week but surgeon and her recovery will better determine that.

FYI: that would be dr appointment #4 for next week. Pray I can take good notes to share the info with hubby but mom's going with me to all again like she did yesterday.  

Please be encouraged that God plans things for good. While we can't explain the "bad" in the world, we can be sure that God will work it for our good as difficult as certain situations appear (ie. Everly's Trisomy 18 diagnosis for example).

Finding out my daughter now has to have a surgery for something completely different isn't good to me. Finding out that God is saving her life from an unseen danger strengthens my faith.

Okay, sermon complete but I HAD to share this!

We will be meeting with the surgeon next Thursday to discuss plans to repair her malrotated stomach, how it's affecting her now and moving forward with G-tube insertion.  I'll update more when we know more.  Cardio appointment on Monday as well and occupational therapy starting for Everly on Tuesday so a very busy week coming up! 

We thank you for your continued prayers.  They really mean so much and your messages to us are read by each member of our family and just taken to heart.  Thank you!

With love and appreciation,

Crystal

It's Time...

Just love this one. One of the 9,873 times she's pulled out the tube. lol

It's time.

It's finally time to make a change to a more permanent feeding solution. As much as I'd like to admit it's not necessary, it truly is.

She has figured out the ever so delicate skill of removing her NG tube in the blink of an eye. With each and every reinsertion we run the risk of nasal ulceration, laryngeal injury, and pharyngeal discomfort. The NG tube may also precipitate gastroesophageal reflux, which can lead to aspiration; a major concern for us with Everly as it will turn into pneumonia.

As we continue to work on her oral motor skills and speech therapy, her swallowing of milk via mouth and solids are most assuredly negatively impacted by the presence of the NG tube. It is thought that she will react more positively to oral stimulation once this noxious piece of equipment is removed once and for all.

In meeting with her GI doctor yesterday, it was mutually decided that removing the NG and moving forward with the PEG (percutaneous endoscopic gastrostomy) is the absolute best option for Everly.

For any other "typical" child or even adult who is in need of a feeding tube (non-NG), the procedure is in and out really. However, in Everly's case, it's not as cut and dry.

The biggest concern was, is and will be for us how she handles the intubation and extubation. Again, "typical" children with "typical" anatomy, breathing patterns, brain connections will handle breathing on their own again just fine. She, however, may do well but there is a risk that she may not. As much as I DO NOT want to take this risk, we know we are also taking a risk by keeping the NG tube. It's not meant to be a long term solution.

Love. Her. My goodness!

When we first spoke about getting a more permanent tube, we really thought she would not make it, following the experience of our doctors at the time, but a short amount of time. However, at this point, we need to respect how well her body has done, God's obvious plan for her life and the advice of our trusted medical professionals. We have spent 8 months researching this topic, time discussing the procedure and plenty of time praying for God's guidance in making the final decision. We are at peace with the decision.

So, to briefly explain how this will work, what we know and what we don't know. I won't bore you with too many medical terms that will just go through one ear and out the other unless you're personally invested in this topic. Tomorrow is Step 2: have an Upper GI completed which consists of x-rays of the pharynx, esophagus, stomach, and upper small intestine. The series shows how your digestive tract is functioning and is used to diagnose ulcers, tumors, hiatal hernias, reflux disorders, and many other conditions of the upper digestive tract. Once completed, the radiologist will write her report of the findings and send it off to the GI doctor.

Step 3 is to meet with our cardiologist since she is a heart patient. They have their own team of anesthesiologists that the cardiologists prefer to use from what we were told. So in meeting with our cardio, we can address our concerns related to putting her under anesthesia and how it will affect her heart.

Step 4 is waiting to hear back from the GI who will have read the upper GI findings AND consulted with our cardiologist about the best plan of action for her.

Step 5 is scheduling us to come in for pre-op (not day of or even near) to go over what the upper GI showed her. If it showed her that Everly's stomach is malrotated then doing full surgery to place a low profile button will be the choice. That is a week stay and is much more of a major procedure just in that it is not endoscopically. We will also meet with the pre-op anesthesiologist and he/she will discuss how the procedure will go specifically the protocol for Every. If there is no malrotation present or any other causes for concern, the procedure can be done endoscopically which is less of a hospital stay.

Love my three kids' costumes!

The biggest question will be what kind of G tube can they place in Everly's stomach. There are a few main types. The low-profile would be placed if she must have the procedure surgically. While the longer tube selection would be inserted through her mouth and into her stomach endoscopically. Our hope is that the surgeon can bypass placing the longer tube choice as we would have to take her in again when she weighed 20 pounds to have it changed to a low profile one. If her anatomy is correct and all is well when he gets in there now, he may can just proceed surgically mid-procedure and place the low profile tube which we are hoping for. This means that it would be all done and over in one procedure with only 2 additional hospital days as opposed to coming back next year (if that's when she hits 20 lbs) and going through this again.

Step 6 is to schedule the procedure while the GI and our cardiologist work behind the scenes to find the right people to work in Everly's situation.

Step 7 is surgery day when we meet with the actual anesthesiologist who will be in the operating room and the GI doctor. We will be allowed to hold her following and also to stay with her overnight (love to see them tell me NO...lol...#justkiddingnotkidding) for the time she's healing.

Talk about dressed up!

There are many questions still left to work out based on what they find in the Upper GI tomorrow and even when they have her the day of surgery. For me, not being able to have it all planned to a T and know each step in full detail...unsettling to say the least. I know God has, is and will be watching over her and helping guide the surgeons as they work on her. Faith can take you far, that's for sure!

So for prayer requests: that her upper GI finds nothing out of the ordinary, they are able to complete surgery with no complications and that she is extubated easily, and that she is able to have the low profile G tube placed at this time.

Sleeping beauty

A shout out to the Scholes family in Texas who recently celebrated Elisabeth Maxine's 6 month birthday! She's moving just like Everly...up, up. up! We are in awe of how well she's doing, too. I watch the strength of her family, including their Aunt Bees (shout out to you!!!) who is ever present, and am just amazed at them and the joy that they are living. Their E also has Trisomy 18 and is moving mountains! She's also on Caring Bridge so check her out if you'd like to see the cutie!

Joshua 1:9

"Haven't I commanded you? Strength! Courage! Don't be timid; don't get discouraged. God, your God, is with you every step you take."

With love and appreciation,

Crystal (will keep you updated about this)

Touching Base

 

'Tis the season to hike here in Florida...finally!!

Well, it feels like forever since I've updated. We so appreciate the prayers and support each of you give and I want to keep everyone in the loop. I'm truly happy to report that all is essentially, in the words of Elisabeth Maxine's mom, status quo around here. So, let's get to it...

BIG NEWS:

Everly turned 8 months old on October 20th!!! We are just in awe of how amazing she is doing and so thankful to God for His gift to us. She is doing so well and is so happy!

Overall Health:

Everly has managed to stay illness/sickness free essentially since birth. Praise God. Not a sniffle, not a cough, not a fever (fever during her bout with aspiration pneumonia at 3 1/2 weeks). We know how dangerous a common cold can be on her immune system so we are so grateful for how healthy she has remained. We continue to be careful with her while we are out and about. With the flu and cold season upon us, we do try to limit our inside visits while still trying to live a "normal" life with our boys.

GI:

This is probably the area of most concern for us. This tube issue is a challenge to say the least. The tube comes out on average a couple to several times per week. Sometimes she manages to remove it; sometimes we need to take it out if we suspect it's lodged in a way that is causing discomfort. And then sometimes her reflux and choking cause it to come out on its own. We will be consulting with GI and cardio in a couple of weeks to begin a dialogue about a more permanent feeding solution. It would be a gross understatement for me to say that we are leery, worried and extremely concerned about this option. However, we must continue to do what is best for Everly and if this is best, then we must consider it and weigh the risks and benefits.

 She has to be the cutest Minnie Mouse I've ever seen!

Weight:

I feel like Everly's weight has slowed down over the past few weeks. It's taking her a whole week to gain an ounce or two so I have a call into the GI for the doctor's opinion. Though we see the dr in two weeks, keeping close tabs on the weight now is crucial. I'm not really sure her body can handle more volume so I would like to explore how else we can increase her caloric intake. She already has her feeds fortified to make each ounce 26 calories. Hoping to find a solution this week.

Therapies

Well, Everly began speech therapy through Early Steps about a month ago and is doing so well! She is responding beautifully to the oral stimulation exercises we've been taught. We've seen so much progress in a month! I learned how to place her swabbie appropriately in her mouth to encourage proper swallowing. (In case you're wondering, it's to lay the swabbie tip right in the little bowl your tongue forms.) I also learned exactly where to place the food in her mouth...even though I didn't realize there was a right way and wrong way. lol (In case you are wondering about that, too, a tiny dab of food goes as close to the tip of her tongue as possible. This would be because she gags very easily and if the spoon goes further than that she is miserable. I had been placing a dab of food on the inside of her lip but retrieving the food from there isn't a natural movement. Who knew??) Oh, and by the way, we LOVE our new speech therapist and her student protégé! They just make our Monday mornings sparkle with their excitement over their little rock star!

 Oh my! She's so beautiful...inside and out!!

Okay, moving on to physical therapy now...we love our Gloria! She is so innovative and every single week comes up with new exercises for Everly. She knows how much Everly responds to repetition so she sings little rhythmic tunes during sessions. I love that she cares so much for her and that E gets the most out of each session. We just had our 6 month therapy evaluation and guess what?? E scored straight A's on her report card!! I'm a proud mama! She did, however, receive a conduct mark for having a bit of sass from time to time. Oops! lol

Mary Ann, our Early Intervenionist, is working on strengthening Everly's core and neck muscles and helping us to get E to reach for toys. I think reaching for toys may be a task that may continue to take some more time and practice. We will continue to work and practice itI'm so glad she has all these special people working to help her body work in the best way possible. Thanks, Mary Ann!

Tried to take one pic of E and this is her playing with her mouth and tongue while I was trying. Silly lady!

Next week, we will be having an evaluation for Occupational Therapy and to be honest, I had to look it up to see what in the world that means for an infant. Just in case you were wondering, too, an OT will work with fine motor skills so she can learn to grasp toys, hand-eye coordination so she can find a toy and pick it up or touch something, assist with sensory issues that she may have and evaluate her need for specialized equipment or tools. The OT also was the professional who created Everly's bi-lateral hand splints for her. There are many more tasks that OT can do but it varies based on the age and needs of the patient. We are excited and hopeful that this new therapy will prove to be a huge help to us as we continue to assist Everly in reaching her maximum potential!

Hospice Update:

Extremely pleased to report that all is well with medicines and supplies. We are all hooked up with what we need! Woohoo! We have two new sub nurses who we love and adore and enjoy having visit us each week. A plus is that I think they have fallen for our sweet girl. Just sayin'

Cardio:

No updates here until our next appointment on November 3. Our doctor is on vacation so our monthly appointment is pushed back a bit so no October visit.

Pediatrician:

Everly has a pediatrician appointment today so she'll get her monthly Synagis shot and her a couple other immunizations she needs. Not looking forward to that but I know it's necessary. Glad we have approval from insurance for the Synagis shot through February (it's $1,000 per injection). It's so crucial in protecting against RSV. Her weight is 11 lbs 7 oz and her head circumference (per the hospice nurse who checked yesterday) is 15 3/4 inches. We'll just have to see how long she is at the doctor's office. Looking forward to showing her off in a cute Halloween outfit there :-)

Thank you all for your continued support, messages and prayers for Everly and our family. They uplift, inspire and motivate us! If you are on bended knee and would like to know specifically what to pray for: Everly's continued wellness, no change in heart unless for good, increased weight gain, decreased reflux and choking, discernment when it comes to making the decision about a permanent feeding solution. Thank you for taking the time to pray for her!

With love and appreciation,

Crystal

Walk by Faith

I have these quotes saved on my phone and came across them tonight. One is a quote by Corrie ten Boom. If you're not familiar with her, let me briefly tell you. During World War 2, she and her Christian family hid those hunted by the Nazis and Dutch resistance members. They were eventually betrayed and hauled off themselves. They endured unbelievable persecution and some members of the family lost their lives. Corrie survived and spent the rest of her days speaking words of encouragement and showed exemplary strength in her Christian faith. She died at the age of 91 on her birthday. In Jewish tradition, only the very blessed die on their birthday. Amazing story and from her life she has garnered much wisdom. Read more of her story in the book The Hiding Place and/or watch the movie by the same title.

So in knowing a bit about her history and her life, this quote is made even more meaningful to me. I was in middle school living in Germany when I learned of her story. I admit to having the worst memory ever but she was so powerful a Christ-follower that her name was emblazoned in my mind. Rather than being bitter about her and her family's experience, she glorified and uplifted God's name before, during and after her horrific trials.

Today I learned that a close friend has lesions on her brain and will be having surgery immediately to remove them. She is an incredible woman of faith, was right there when Everly was diagnosed and has been my biggest cheerleader for years. Please join me in praying that the tumors are benign, it is not the same cancer as her previous breast cancer and for peace and calmness as she enters this terrifying new season of her life.

I believe more today than I ever have that Corrie's wise words are spot on. We are never promised an easy walk but we are promises the He will walk beside us through all that life brings. He loves us and **somehow** will make it for our good...as difficult as it is to see in the thick of it. I know how hard that is as I'm sure many of you are as well. But He loves us and will bring us through.

Isaiah 55:8

"For my thoughts are not your thoughts, neither are your ways my ways," declares The Lord.

With love and appreciation,

Crystal  

What's New?

So, what's new with sweet pea?  

 

Mama reading to Everly

• She finally hit 11 lbs 5 oz after going back and forth between 10 lbs 15 oz and 11 lbs 1 oz.

• She started with a new speech therapist at our home a few weeks ago.  We love her!!  And she has a student accompany her and we love her, too!  She comes with a plan each week, new exercises, new techniques, texts me in between sessions to check on us, is super enthusiastic during session, just seems excited to be doing what she's doing.

• Everly has started to take a strong interest in all things oral...playing with her tongue by sticking it out, swirling it, just anything.  It's so cute!  She's very accepting of all baby food and tastes and still enjoys her swab with milk several times a day.

• I didn't realize I hadn't posted this before but Everly is unable to control her body temperature so she sweats profusely when even a tad bit warm. So unless it was a water activity from about May until recently, it was too warm to head outdoors with her.  So, we are excited that the weather is "cooling" off enough to get her out again where we LOVE to be!

• Her last cardio visit a couple of weeks ago was great.  No changes in her heart/lung balance which is ideal.  Her SAT was 95 and her heart rate was 120. 

• She received the Synagis and flu shot last month for protection.  We all (including my parents) received the flu (4 strain) shot.  We are germaphobs at our house!  So, if you come to see Everly, please make sure you are not ill or have been around anyone who is.  Any small cold could be devastating to her!

• She is doing fantastic at strengthening her body.  She can put pressure on her legs and straighten them out.  She has great head and neck control, too.

 

Love this little girl!

Thank you for all your continued prayers and support!  We all love reading your messages and they do keep us upbeat!  Please pray that Everly and her friends remain illness-free this cold and flu season.  Please pray for our friend Elisabeth Maxine and her continued growth and health as well.  She has a Caring Bridge page, too, in case you're new here. 

With love and appreciation,

Crystal

She's rockin' those glasses, isn't she? She knows it, too!

  

 Sweet kiddos at the pumpkin patch!