grace led in life: One day at a time...and the months fly by

We cannot believe that 3 months have passed (since last update) and we are about to enter 2019!
God has brought us to and through so very much this last year...

This past year has been a time of sweet bonding, growth in so many ways, exhausting days and nights, witnessing incredible courage grow in our family, settling into our "normal" day by day, being thoughtful of each other, growing in faith, and while this year has been one of the hardest we have ever faced, it has been a time filled with joy, laughter, and thankfulness. We praise God.
We've had much to celebrate the past 3 months since our last update - Family (adoption) days, Thanksgiving, Christmas, and birthdays...
God truly has carried our family...He has led us, given wisdom and direction, and we have felt his love in deep ways.

We were so thankful to get Isla home after her last surgery...

We arrived home the end of September and while the surgery was successful and she has healed well, the emotional and traumatic side of the journey has been hard on her.

Honestly...I often refrain from sharing much about this due to wanting to protect her and also because it is something that many people have difficulty understanding. But, we feel it is important to share part of the journey and ask you to pray for Isla.

We will not share many details of Isla's precious life prior to being in our family (as we have said before, that is her story to share) but we will say that she faced hard trauma. Our precious girl is a fighter - she astounds us with her bravery, strength, and joy. As she has grown so much this last year, she is understanding more and has felt safer to feel and let us know her times of fear and not understanding.

So, this last surgery was traumatic emotionally for her. (If you want to read more about what happened this last surgery/hospital stay for Isla, scroll through past posts in Sept.)

Once home, she dealt with typical physical recovery - and honestly...she is SO strong! She does not let it slow her down! Go, Isla, go! We could tell she was in pain but once she was in her comfort zone of home...she was so determined to move and live the life of a toddler :)

We kept in contact with her team at CHOP, sending pictures of how her incision was each week. It all healed beautifully and without any infection! yay! Praise the Lord!

We are so thankful that while the physical healing is not easy and takes time, she healed so well.

Sleeping has been difficult for quite a long time after surgery. Isla often struggles to find a comfortable position and stirs often.

Isla has faced moments of increased fear, which affects her sleep as well. It is so much for a little one to understand. She has been having more bad dreams and many tears at night. There have been lots of cuddles and prayers.

It is not easy for a child to face medical needs, to be fighting for their life. But, add in the traumatic past and it creates so many other layers of hardship for Isla to process.

We see such growth in Isla. It is absolutely incredible how she has trusted us with her care, how she has grown to boldly show us her personality, how she has been so courageous to tell us what she wants or does not like, how she is so JOYFUL. We praise God for her! Oh, how we have grown, not only in our family bond, but also individually. We are changed. We are seeing life in such a different perspective. We praise God for allowing us to be her family! ♡

Isla has been working so hard in physical therapy and occupational therapy each week.

We're taking things day by day and advocating for Isla to find the best pace for all her therapies/appointments.

We love her therapists! They have been so kind ♡

At times, Isla has needed a break from therapy to settle her mind and heart again.

Too much only slows her progress. When we have taken breaks, she actually progresses more quickly! She processes so many details and moments can feel very overwhelming for her.

We are so very proud of her. She is such an example of having faith and being courageous.
She is an inspiration!

Isla's incision from her first surgery (May 2, 2018) and this last surgery (Sept 11, 2018) are both healing so well! No infection!
Isla walked more after surgery than she did prior to it and now she is always walking, rarely crawling, and even has started trying to run! It is incredible!
Isla has grown in strength! Her therapists end up doing more exercises than what they had planned and are surprised by her progress!
Isla wants to do anything and everything! Climb, run, explore, observe...she is a little adventurer and dislikes not getting to explore :) The girl is made for wide open fields - to feel free 🎕
Isla is developing more everyday - she is understanding more, trying to communicate more, learning how to say words and even a couple of sentences!
(As I am in the middle of writing this blog, Isla started to count to 10 today!)
Isla had an ENT doctor appointment to see one of our favorite doctors here in Seattle, on Dec. 8th. He did a scope down Isla's throat again to take a look at her vocal cord. He gave us good news that he saw a tiny bit of movement in the vocal cord! So, while it looks like it is not healed, a tiny bit of movement is a step in a great direction! We are praying that it will fully heal over time. There is no way to know if it will fully heal, if it will stay the same, if it could re-injure with surgery (Isla will have surgery every 4-6 months) we just have to give it time and watch it closely. Isla had another swallow study done on Dec. 31st and it was determined that she still cannot have thin liquids. So, we will watch her closely and continue to check in to determine her progress over time.

Zeke and Isla continue to be each other's confidant and source of joy and protection. They really spur each other on in courage, support and so much laughter! I know many people say...really? but siblings...seriously it cannot be that great. Well...it is!

We really see how God knit our family together - we are not perfect people living perfect lives, but we are people made for a purpose with each other. When one hurts, we all hurt. When one needs support, we all support. When one rejoices, we all rejoice. The love God has lavished on us to get to have each other through life is such a gift!

We continue to be so grateful for CHOP (Children's Hospital of Philadelphia) and Isla's team there. We keep in close contact with them and have recently scheduled Isla for her next trip to CHOP for her first expansion surgery for her VEPTRs. In February, Isla will have both of her VEPTR rods (one attached to each side of her ribs) expanded. The goal of these rods is to expand her ribcage as she grows. This will let her tiny lungs have the room to grow. We pray her little lungs will GROW GROW GROW (for those that do not know, Isla's lungs are half the size they should be)!
If all goes well and there are no hiccups or surprises, Isla should only need to stay in the hospital for a day or two!
We were contacted in Novemeber by a writer for CHOP asking if they could share about Isla's journey on their website: We were so grateful for the opportunity to raise awareness for Jarcho Levin Syndrome, VEPTRs and also pray it can be a source of encouragement and hope for families that face a similar journey.

CLICK HERE FOR ARTICLE ABOUT ISLA

Please be praying...

For Isla (and us!) to stay healthy before, during, and after this trip/surgery.

For her peace in mind and heart. (We see that every time we get in our car, Isla is concerned about where we are going and who we will see. Every plane ride she has been on in the last year (she has been on 11 flights this past year) have been during difficult times/traumatic experiences for her.
Please pray for Zeke...super hero of a brother. He takes it to heart when Isla (or any of us) have a hard day. Pray for his heart and mind to feel peace 💙
For Justin and I as we balance and plan everything. We have times of feeling worn and weary.

We have had beautiful celebrations these past few months!

On November 13th - we celebrated Isla being in our family 1 year! YAY!
Her progress has been such a miracle! 🙌Such a J O Y she is!

On December 15th - we celebrated Zeke being in our family 4 years! YAY!
This boy is full of adventure, investigating, researching, rescuing, facts, thoughtfulness, perseverance, details, and caution - yet big bravery! He is SO much fun!

Winter-time fun! We love getting outside on beautiful days!

Thankful for CHRISTMAS!

Homeschooling with Zeke has been such a blessing! As an exhausted mom on most days, I felt some nerves about how it would go. But, it has proven to be such a great choice for who Zeke is and what he needs right now. I love the quality time it creates for us. We LOVE learning together!
Zeke works so hard and his curious mind is wide open to soak in as many details as he can! His main interests right now (to learn every detail he can about them 😉) are dinosaurs, ants (bugs), any profession that includes rescuing people. He has learned cursive handwriting and is doing great with reading! We love to dig into books and learn as many details as we can in what we are reading! (not looking to grow followers, but if you were wanting to have a peek into our school journey, I post now and then on @graceledinlifeandlearning on Instagram).

We continue on to each new day, knowing that God goes before us and is faithful to guide us and care for us with every step! HE IS FAITHFUL!
We keep our eyes fixed on Him...

You make known to me the path of life; in your presence there is fullness of joy.

Psalm 16:11