grace led in life

Thank you to everyone that has been praying and for the check-ins. 

We're doing ok, lots of ups and downs each day. 

Isla's fluid around her hip finally resolved. SO THANKFUL! The virus that she caught in March really affected her deeply. It took a long time for her to be fully over the symptoms and fever-free. She had a few days of being fully better and then she caught another cold. 
Thankfully, this one was much less intense and after about a week, she was much better already. 
With her medical condition declining, it is so much harder for her to try to overcome sickness. Unfortunately, she can only use the BiPap if she is not congested, so it has been a tough fine line because she really needs the help with breathing from the BiPap every day. Isla was originally scheduled for her BiPap titrating sleep study back in March but due to sickness, it has had to be rescheduled a few times. We REALLY need this sleep study and the results it will give so we know better what specific BiPap settings Isla needs to help her hypoventilation issues. This has felt like a long waiting time. We are praying she can stay strong and healthy for her sleep study in a week and a half. 

Isla has felt more heightened anxiety for many reasons right now. She works so hard each day to process and function while not understanding much of what is going on - that in and of itself is so hard. She pushes her body so much through pain and exhaustion. She has been sad, overwhelmed, and felt frustrated often. Her brain and body know it would be VEPTR surgery time right now. She is experiencing more pain and asking multiple times a day if we have to "go get on the airplane and go have surgery." She doesn't want to go and doesn't want another surgery at all, yet her body knows it would be time, so it feels so confusing for her. We grieve that she is unable to have the surgery that she needs right now. It has been 8 years of surgery twice a year. It is so strange to not be heading to CHOP. We continue to pray for miracles for our warrior girl. 

Now that Isla has been better from the viruses, she has had times of wanting to be active, but she is definitely tiring easily. She feels exhausted and often asks to go to bed early. It is very up and down. Even just 1-2 hours of school at home with her para educators is wearing her out. In her mind she wants to go, go, go; Adrenaline kicks in for a bit but then the deep exhaustion comes after. 
We find ourselves struggling to know how active to let her be or how much to rest. We want her to live her life! But it is sad that it comes at a cost and there are dangers in it all, too. We're just doing what it seems she can do in the moment - safe activity when she can and resting as she needs. up and down. 

When Isla has moments of bigger energy, she is asking to go play in the sunshine! 
Short times of scootering, chalk art, bubbles... We are taking slow walks here and there, but the hypoventilation symptoms kick in fairly quickly. There is a large - open space park near home that we LOVE to go to for a picnic and family fun. So sweet to go sit in the sunshine, play card games, and just enjoy quality family time together - breath of fresh air. 
So thankful how God provides places that feel like a hug - so beautiful that it breathes some life into us. We all LOVE the beautiful nature God created around us! We sure live in a beautiful place! 

One of our yearly traditions is going to see the beautiful tulips just an hour north of us each spring. 
Isla asks for this all year long. Even at Christmas time, she will ask, "Is it time to see the tulips yet?"
We were able to go this year, and it felt so special. Isla couldn't walk for long and needed to be carried or lay down in the wagon, but she still was able to enjoy the beautiful flowers! She loves taking pictures of them :) She said, "Wow! God made so many beautiful tulips!"

Such a sweet joyful moment as a family... not taking that for granted! What JOY! Praise God!

We have had really hard days and some good days... very sweet family moments throughout.
We continue to feel the Lord very near through it all. Praying, trusting, living with HOPE. 
Praising God for every day...every up and even the downs. He is with us and his grace abounds.

Please keep praying for our girl and family!