grace led in life

In true "whirlwind" fashion we got through our long travel day, made it to Philadelphia, and got through day 1 of preoperative appointments. 
Isla has been such a brave sweetie - nerves are high but she finds joy amidst the hard and is so strong. 

We left home about 6:50am yesterday. Our flight was not cancelled...praise the Lord! (there have been some strikes going on with Alaska Airlines...so we were hoping and prayin' that our flight would still make it...it did! Yay!)
Isla did so well on the flight. She gets some motion sickness, but she took a few naps here and there and enjoyed her favorite Madame Blueberry VeggieTales and Bob the Builder videos, coloring, LightBright, etc. She knows where we are going, yet still had quite a bit of nerves and questions about "what is next". She kept asking for her Zeker-boo. Lots of cuddles with mom and dad during the flight. 
I (Molly) had quite a lot of motion sickness on the flight this time (this is normal for me)...ugh! I listened to some Home Town episodes while Isla slept - helps to pass the time! 
The descent into Philly was and is always a zig-zag, long, drawn out descent...we were quite glad to land and move forward on the ground ;) 
J has no motion sickness (tell us how!) and obviously LOVES all airplanes, so the flight was fun for him! He was even able to catch a movie during Isla's naps and read some chapters in the book of Job in the Bible. So thankful for him!

We got through the airport, luggage came right away (another yay!!!!) and made our way to the rental car. We arrived at our hotel about 7pm. 
We were exhausted. Got groceries and ate some food. Isla struggled as evening progressed. She finally was able to sleep about 11:30pm. Poor J really struggled with sleep - he is used to 2nd shift and Pacific Time...so this jet lag is even more than just the 3 hour difference for him. 4:30am here on the east coast is generally when he is finally going to sleep at home...poor guy! 
Isla did not sleep for very long - so needless to say, we all are TIRED! 

***I will be sharing some videos of our days by links below...click on the "CLICK HERE" and the video will open for you to watch :) 

(CLICK HERE) Video of travel day

Isla had a lot of smiles this AM but she still was nervous too. She knew appointments were coming. we didn't have to head for appointments until lunchtime, which helped her nerves. Isla loved having time to read books, watch a show, play with toys this AM. 
We ate some lunch and got ready for a day of appointments. 
We are so proud of Isla. She was asking the schedule of the day and was able to follow it in her mind, in simple steps.
While the videos I will share show a lot of her beautiful smile - there are many tears behind the scenes as well. We respect her feelings and are protective of not sharing too much of that. It is real, though, and we are so incredibly proud of how brave Isla was today during all her appointments.
She talked through each phase of today with us and courageously did each one so bravely, even though it was and is so hard. 
She had scoliosis films/xrays done, bloodwork (her least favorite) and we met with Dr. Heuer in Neurosurgery. 
I'm not going to go into too much detail tonight (need to head to bed and need to process a bit) but today, while still having hard things, we clearly saw God at work and feel extremely blessed at how the day went. 
We gained a lot of clarity with Dr. Heuer (Neurosurgery). He was amazing, kind, and down to earth. 
Isla had no tears meeting with him!!! She was talking to him and dancing and singing during our chat with him. He was amazed at how Isla is doing, considering her condition. He could tell she has a lot of "fight" in her and said she NEEDS that in her life. He went over CT and MRI findings with us and we just gained a lot of clarity in some areas we have needed answers in. It felt like perfect timing in meeting him now - as questions have surfaced and some things Isla has been facing have been increasing. We look forward to talking with Dr. Anari tomorrow and setting a plan with both Dr. Heuer and Dr. Anari in moving forward. 

Isla was exhausted after all the appointments - we arrived back to our hotel and she got in PJs and snuggled in bed for a bit before she got back up to play. Again...we are so thankful for this day. Still hard, but so much of a blessing too. So proud of our warrior girl. God is so good to give her bravery and strength! 

(CLICK HERE) 1st day of preoperative appointments

Isla has some more peaceful play tonight and fell asleep better tonight - about 10pm. We are hoping she can sleep through the night! Same for Justin and I!
We will head out of the city tomorrow, to another Children's Hospital of Philadelphia location to meet with her Orthopedics - Thoracic Insufficiency Team. We hope to have a few stops for "fun" outside of the appointments, too. 

We are going to get some sleep...but would love to ask for prayers: 

Isla - for a peace filled heart as she meets with her surgeon and team tomorrow. That she could have some fun at the appointment. For her to feel safe to ask questions and for us to be able to explain the best we can for her. 
Please pray for us to have a safe trip out of the city tomorrow and that we could have some fun adventures for Isla, too! 
Please pray for us to sleep well and for our bodies to stay healthy
My (Molly) body is in a lot of pain - the exhaustion makes it worse. Please pray for relief and for my mind to be able to be clear through it. For strength! 
Pray for Zeke - we miss him greatly!!!

Goodnight everyone! Thank you for praying for us! Thank you for the encouraging messages!