Touching Base

Thursday, October 23, 2014

'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...


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.


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!


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.


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'


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.


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,


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