Hey All!
We have had some intense months, and they have flown by since Isla's last surgery in November.
There have been a lot of medical needs for 3 of us, yet we are so grateful for God giving us more insight each day and continue to pray for wisdom in all that is ahead.
We've had countless appointments and therapies these past 5 months - we have been under an incredible amount of stress. We are so tired and honestly, we struggle. We want to be real that the struggle is indeed very real and challenging. We are exhausted in many ways. We truly have to take everything a step at a time - which reallllly is stretching for my "planner loving self". ha-ha! I love organization and figuring out puzzles, I should really try to have the perspective of getting to do those things, while I do one of my jobs of full-time "medical-coordinator". ha ha...whew! In the last year or so, it has just become very overwhelming - so many details, dates/scheduling, constant conversations... I've been struggling with focus and feeling foggy...but I'll touch more on that another time. My brain tells me I need a break, but life doesn't stop. Thankful to lean on the strength of the Lord. While there is pain and difficulty each day, there is always God's goodness written all over the details of each day. A sweet friend reminded me to not lose sight of God's character within the chaos. The things of this world are confusing and hard, but who he is, his goodness, and his promises never end. We can rest on that. Thankful for friends that encourage through God's truth!
Exodus 15:11 - "Who is like you, O Lord, among the gods? Who is like you, majestic in holiness, awesome in glorious deeds, doing wonders?"
Isaiah 41:10 - Fear not, for I am with you; be not dismayed for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.
Lamentations 3:22-23 - The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.
This pressure also makes nurturing relationships challenging. We miss family and friends and are aware that we seem MIA and it has been that way for a long time. We know God has us in this place and we are trying our best in navigating it - sometimes getting it right and sometimes not getting it right, but when one area of life has such high demand, other areas will struggle. It hurts, is hard, and it is humbling. Please know, we care about you and love you all! Thank you for sending encouraging messages and praying for us all! We NEED it. I struggle in feeling guilty for not getting to call people to chat or answering messages in an actual timely manner - my, how things have changed and I'm humble enough to admit it. It has been a (long) and interesting season in life. God continues to be so gracious in all ways and we are just so thankful to have a savior that sees what we are going through, is teaching us/growing us so much through every circumstance and we are so thankful that there is a greater purpose and plan than what we can see. He is working in all things... ALWAYS. We continue to have HOPE because of him.
Like I mentioned in our previous blog, we learned that Isla's airway has significantly worsened. We knew it was worsening, yet the exact extent of where it has worsened to was devastating news to hear and, so far, her team was feeling there may not be options to help her airway and the ability to do the surgeries she needs could be affected. We have felt so heartbroken for our sweet girl and yet praise God for how amazing she has been doing despite the difficulties - truly it is a miracle. There is constant grief mixed with joy every day.
We had a rough December. Isla fought RSV and needed to be in the hospital. This really highlighted her worsening airway. It was quite scary, and we are so thankful she was able to heal from that. Isla was and still is so scared from that experience. Not being able to breath or clear your airway is so scary.
We have been on a journey of meeting with doctors and specialists here to make sure we communicate with everyone that is near home on all that is going on for Isla. Her needs continue to be so rare and complex. We are so grateful to have met with a wonderful Aerodigestive ENT specialist here that we have known for over 10 years. He has been one of Zeke's doctors/surgeons and helped Isla when she had a paralyzed vocal cord after one of her surgeries. We updated him on Isla's airway and are so grateful to have a doctor nearby at Seattle Children's for if and when any needs or emergencies arise. There have been a lot of new developments with Isla that we are looking into and learning more about. We have been meeting with genetics again and added endocrinology and we are trying our best to find answers and the best solutions to help Isla with all she is going through. Isla was also able to see a new psychologist who has been so wonderful in accurately diagnosing the intellectual disabilities and PTSD Isla is experiencing, so we can find the best ways to support her. Isla is surely a strong warrior and the number of things that she is facing every day are so challenging, yet she sure marches to the beat of her own drum and doesn't want anything to stop her. She battles debilitating anxiety each day, yet has such a desire to push forward, too. It amazes us how brave she is all while often not understanding what is going on. true bravery. Thank you, Lord!
Some sweet updates:
(CLICK HERE) - snapshots of our Winter to Spring 2025
Isla has been loving school and we love to see her thriving! Her teacher, paras, and nurse at school are such an amazing team and we could not be more thankful for the support Isla is receiving. Isla recently had a choir concert - anyone that knows her knows how much she LOVES music and throwing in actions or dancing to the music is such a bonus for her! :) She also has had the opportunity to join a cheer team with her schoolteacher as one of the coaches! (Callie, you are the BEST!!!) Go, team Incredibles!
Zeke had another oral surgery in early February and after facing a couple minor complications, he has healed well! So thankful! We will be meeting with his orthodontist in April, and he will start the journey of braces, soon. He is feeling the effects of cleft issues more with growth. He just had another sleep-study and we will be discussing that on Monday with his sleep specialist. He also will be meeting with the same ENT airway doctor as Isla in May. Zeke has been dealing with some other health issues, and we are trying to figure that out, but overall, he is doing fairly well and continues to put his best foot forward each day.
Zeke has worked so hard on all his school - he will finish a couple of his subjects in school very soon!
The end of his home-school/co-ops 6th grade year is coming to an end soon. We cannot believe how fast time is going. He just got to make a shield for his Intermediate Latin class, and he LOVED doing that!
He has quite the academic mind and at the same time loves creativity and art! Zeke has loved going to youth group at our church, loves getting outside to play, and loves some Minecraft-ing time as well. We are so inspired by his love for Jesus and are so encouraged to see him pursuing Jesus every day.
PLEASE PRAY:
In less than a week, we will be flying to Philadelphia again to meet with an airway specialist at Children's Hospital of Philadelphia. We have been waiting for this appointment since Isla's last surgery. This team only sees new patients one day a month (while the other days are for surgeries, treatments, procedures, etc.) and they see so many patients from around the world. We will be consulting with the ENT airway specialist on April 3 and Isla will be having exploratory airway surgery on April 7th.
We are asking you to PLEASE PRAY with us for these appointments/days.
We are praying for miracles and options for our girl. We also are praying for safety through this "surgery". There was a lot of difficulty with intubation at Isla's last surgery and it almost didn't happen.
We are praying for wisdom, options, and the best help for our warrior girl.
In full honesty, we have a lot of anticipation and nerves heading into this.
Never will it not be sad to see and hear the deeply challenging things that Isla is facing. And, never will it be easy to see her have to go through all of this. At the same time, we are SO grateful for these specialists and the amazing ways they find to help extremely complex medical conditions that many kids are facing.
We know complex airways are not new to these doctors. We also know none of this is new to God. He knows exactly what is happening with Isla and has done GREAT things in her life.
If you wonder if miracles from God are real - Isla's life proves that. We cannot believe we have gotten to have a front row seat to all God has done. Isla's life is precious and a blessing.
Will you please pray with us?
Thank you for being with our family. We cherish your encouragement and prayers.
