grace led in life

Hey everyone, 
Thank you so much for praying for Isla and our family...and checking in!
I haven't been able to get on here to update... 

I think some people missed some of our blog posts, so to clarify: Isla had surgery on the 28th to expand her VEPTR rods that help to hold her ribcage open. She also had surgery to de tether her spinal cord. She spent the night in the hospital, and we were able to bring Isla to our hotel to start recovery. By Monday, Isla had developed a spinal fluid leak and had to be admitted to the hospital again. STRONGEST GIRL IN THE WORLD had to have extra sutures added to her incision and we watched her close for 24 hrs. She was again discharged from the hospital on Tuesday night, the 1st. Again, her team said to stay in Philadelphia for a few days to be sure she did not have any more complications. 
We were able to fly home on Friday night...oofta (Yes...I'm Minnesotan...ha!) that was a turbulent flight, all across the country. Thank the Lord, Isla was able to sleep for almost half of the 6 hour flight and she was fairly comfortable for the rest of the flight. We arrived home about 10:30 at night. We lost power about 15 minutes after arriving home, but thankfully it came back on by afternoon the next day. 

Bittersweet emotions...So hard to go through this journey,  yet we see God's hand in it and are so very grateful for Children's Hospital of Philadelphia  and Isla's team of doctors.

We were so thankful to be home. To reunite with our Zeker!!!! 
Isla kept saying how much she missed her Zeker. Their reunion was so sweet. Happy tears!

Back to her happy place!

Arriving home is a huge relief but does not mean that recovery is easy. Recovering physically is hard, yet that is not the only recovery being faced. Isla faces trauma re-triggered with every trip/surgery. There is so much to overcome physically, emotionally, mentally...it is a journey. We have been trying to find our grounding again here at home.
One day at a time...

Sweet girl giving her baby meds after she gets meds herself

Isla is doing well. She is quite tight with her muscles, and we can see she has pain, but she is SO STRONG and does NOT let much slow her down. We are needing some quiet days and calm days to help bring some peace and rest for Isla and our fam. To bring some joy, and since we missed being home for Halloween, we dressed up as Isla's favorite, Winnie the Pooh characters! 

We are SO grateful for my mom's help during times of surgery.  She has been a huge support! She joined in the dress up fun!

On Monday, we had to be at Seattle Children's for a morning of pre-op appointments for Zeke. 
In a little less than two weeks from today, Zeke will be having his bone grafting surgery to repair the holes that are in his jawline from his bilateral cleft. The plan is for about a 5 hour surgery and one night in the hospital. Of course, that can change depending upon how his body handles everything. We are trying to plan out all the details and help Zeke through this time. He is so brave. 
We really appreciate prayers for Zeke as he goes through this surgery. Recovery will be hard. He will not be able to eat solid foods for 4-6 weeks. 

drawing knights during the wait

So grown up...writing out the questions he has for his surgeon

We are so very grateful for every person that is praying for Isla, Zeke, and J and I. We need it and just are so thankful to be held up in that way. Please continue to pray for Isla to recover well and for wisdom for some other things that are ahead. Please pray for Zeke as he walks thorough another surgery - for a successful surgery and recovery, for pain control, and for encouragement through it. 
J and I appreciate prayer so much too - for my health (I can't give too much focus to it at this moment...my brain is a bit full! But, I'm not feeling well) for endurance and for us to really grasp on to the joy from the Lord even through such a hard season. 

Our friend Jill let us know that she had written an updated blog post about the
Pieces on Purpose Campaign.
 (CLICK HERE TO READ THE PIECES ON PURPOSE CAMPAIGN BLOG POST)
Oh, you guys...we are blown away. We truly don't have words and writing out THANK YOU feels not enough. When we say we are grateful...we truly mean it. THANK YOU! 

This time, season, chapter in our life has been really hard. It is overwhelming. Many days are so intense. We truly are exhausted and absolutely feel defeated now and again. 
I continue to see and feel the Lord reminding me of his nearness and of his great love.
I came across these Bible verses this week and they just stood out to me like a breath of fresh air. 
I hope they bless you, too...in whatever season you are facing.