It's been quiet for a while, here on our blog!
These last six months have had ups and downs. Here are some of the happenings from the last 6 months:
On Feb 22, 2019 - Isla had her first VEPTR rod expansion.
Isla healed really well from the surgery. We are so grateful she didn't have any infections or issues with healing. Over the months, Isla's pain levels go up and down. June was a particularly hard month for her.
In July, Isla had a CT scan of her head, neck, and face with her craniofacial team at Seattle Children's. The CT confirmed her missing, deformed, and fused vertebrae in her neck. We were told she cannot extend her range of motion in her neck due to her 1st vertebrae (C1) being fused, both front and back, to her skull. Because of this fusion, any range of motion that would extend the spinal cord too much for her limited range, could cause spinal injury. Although scary, this was good to confirm this. We love her physical therapist at Children's and with her help, Isla is getting so strong and doing well right now. PRAISE GOD!
We were also thankful for the good news that, as of now, her spinal cord has adequate room through her vertebrae in her neck. So good! Isla stays really busy each week with occupational therapy, physical therapy, and feeding therapy. She also continues to be monitored for her injured vocal cord. That has been a very difficult journey for her - but it seems she may be having a bit more healing with it! She is still under a thickened liquids protocol, but she is aspirating a bit less and seems to be able to swallow better too! We are hopeful it will continue to heal!
Isla will turn 3 this week!!! We are so excited to celebrate with her! She is understanding more of what a birthday is and cannot wait to "b-yo da dandle in cake"! (blow out the candle in the cake!) Isla loves adventures outside, going for walks in her bike, playing at the park, but her favorite thing to do is play at the water...the pool or beach! She squeals in delight at the sight of either. She is busy playing peppa pig, blocks, taking care of her babies, following brother, she LOVES music and dressing up like a "nallerina" to dance! She is full of JOY!
May 10, 2019 - Zeke completed Kindergarten!
Homeschooling has been a source of joy for us all...while there are hard days, it truly has been a huge blessing in so many ways. Zeke is thriving in learning. It is so fun to see his mind filled with questions - he truly loves to learn ALL. THE. THINGS!
His favs from the year were History, Bible, having an ant farm, science experiments, learning cursive and reading! Isla loved doing school too! She always wants to be involved with whatever we were learning that day! She loved learning to count from 1-10, the alphabet, her shapes, and colors! She loves to "read" books...for hours! and loves painting with Mama! We are excited for a new school year coming up!
July -
Zeke turned the BIG 6!
Our little superhero wanted to have a superhero birthday!
We had so much fun celebrating him!
Soon after his birthday he lost his first tooth! That was a VERY exciting time! :)
He is growing so very fast...slow down, please!! ;) He is still eager for adventures, loves bike riding, hiking, rock climbing, legos, rescue anything, superheroes, practicing ninja warrior moves, has killer dance moves and he loves time with his fam.
He is so very thoughtful, loving, and SO BRAVE!
Zeke had a check-in with his medical team at Seattle Children's in July. He had a CT of his head to check on his bilateral cleft of his alveolar ridge (gumline). All is looking well for now! Surgery will be in the future...but for now he gets to just focus on losing more teeth! Zeke continues to have speech therapy to help train/re-direct his air in his mouth with his speech. He is doing great!
Zeke and Isla continue to be best buds. Their bond is quite incredible. God designed ❤
Right when we returned home from Isla's last surgery, I (Molly) became quite ill and ended up seeing multiple doctors, having many tests run and now have a new auto immune disease (moderate to severe Ulcerative Colitis) added to my resume of health ;) It felt so defeating to be so sick while needing to "mommy" and take care of Isla during recovery. I was very weak and in a lot of pain all over my body. It was a very trying past six months+. I had iron infusions in the month of July, which helped my energy level greatly. I have been on a treatment for the U.C. that I am starting to see improvement from. I still have hard days (there are many triggers that cause flare ups), but praying the treatment continues to help!
I praise God for his strength to lean on and the endurance he gives each day. So many days, it was very difficult to function, trying to do normal daily life. Going to doctors and therapies was already a very busy schedule in our life, but adding in my own needs felt like a very full time job for us all. We worked together and a team. I am so grateful for Justin and how strong he has been for us all!
Love him, so very much ♡
It has been so very difficult, yet we can say with certainty that God is so faithful to take care of us!
We continue to grow in faith through the "hills and valleys" and gain perspective from the Lord. We praise him for the family bond that he continues to grow in each of us.We are so thankful for each other!
It is often hard to convey how we are, or how we feel - we can feel at a loss for words.
Really hard days are, well...hard! But, we have so much peace and joy through it. God is writing a story - we pray that whatever our days look like, that we trust him, seek him for wisdom, and pray that it can all be used for his glory. We do not take lightly the miracles we have seen God do and we know he his not finished. Our hearts are so very grateful.
With our days often feeling so serious, we seek out fun and laughter...
We lighten our days with quality time together, adventures, and lots of dance parties :)
We had a few out of town visitors this spring that was special and so encouraging.
Just last weekend, the four of us got to have 4 full days together. We spent some time at the ocean which is a happy place for all of us! Adventuring together is good for the soul!
Ocean time and adventuring July 2019 (video)
In two weeks we will be headed to Philadelphia for Isla's next surgery.
She will have consults, pre-op appointments, and a lung function test in the days prior to the surgery.
This surgery is planned as another expansion surgery, so if all goes well, it will be much like last time. Two incisions to go in to expand each VEPTR rod, hopefully only one night in the hospital, and within a few days from surgery, being able to fly home for recovery.
Although this should be another less invasive surgery compared to her first two, it is still very difficult in all ways. Isla is so strong and brave, but it takes so much out of her. It is traumatic and hard. She amazes us with her strong spirit - determined and joyful.
Will you please pray for Isla and our family through this next surgery? Thank you to all that have been praying and encouraging us...we need it (feels like an understatement) and are deeply grateful for it.
We look forward to Autumn, Isla recovering, school starting, and continuing to take on each day as it comes, knowing God's mercies are new each day and he has us. Praise Him.
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