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! 

It has been such a sweet thing to start to see more and more sunshine here in the PNW...
Springtime is here. Love the fresh air and sweet sunshine...

We've been overwhelmed and a bit out of sorts. Yes, some of that is lack of rest and a lot going on every day, but much of it is also just living out some really heart-wrenching and difficult things that weigh on our minds. It is so challenging to be daily thinking through medical decisions and carrying the weight of your little love struggling with their health and body and also try to make all the little day to day decisions of normal life as well. It often feels like an intense rollercoaster and the ups and downs of it are tiring. There is decision fatigue. We feel ourselves wanting to brace for the next crisis.
There is so much good in each day, too, and it can feel easy to be overcome by the hard things and miss the good things. Life can feel so unsettled and scary, BUT - we see God at work. We see him in so many details. We see him faithfully caring for our family in so many ways and through so many people. He is the solid rock we can trust while everything else feels chaotic and unsettled. 

God protects us and is our source of strength -
2 Samuel 22:2-3a The LORD is my rock, my fortress and my deliverer; my God is my rock in whom I take refuge, my shield and the horn of my salvation, my stronghold...

God is always with us and a comfort and support - 
Psalm 46:1 - God is our refuge and strength, and ever-present help in trouble. 

God is eternal and unchanging, a constant in his promises -
Isaiah 26:4 - Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal. 

God is our refuge and ever-faithful - 
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. 

I have an alarm for every morning that says "praise God and surrender" because I need the daily reminder. God is so faithful, every single day. Amid the hard, there are countless ways that I see him moving in life. It is evidence of his grace and mercy. 
Our hearts feel a bit of a tug-of-war between heartache and hope. It can feel unsettling for sure. And it is in that place that we search for something to cling to, right? Sometimes our circumstances are so heavy that they feel all-consuming, but we have a God that is ready to help us through it, and we can rely on him.

God has been such a constant. He promises to be faithful, and we see that every day.
Life is so hard, but he is so good. Our hearts feel grief, yet we have daily joy from the Lord. 

The past couple of months have been difficult. Our sweet girl has been a warrior, but her health has been so hard on her. We ended our last blog with Isla's start to her BiPap journey. She has been SO brave, and she was wearing her BiPap every night - all night! 

Lamby is on the same care plan as Isla 🤍

A few weeks later, Isla caught a virus. 
This was really hard on her and also very scary.
With her airway complexities, she cannot clear congestion and it will cause her to choke and not be able to breathe well. Her lungs are also high-risk, and her cough is very weak.  We had to call an ambulance a few nights into this virus, and head to the hospital for about 5 days. During her hospital stay, we realized Isla could not wear her BiPap while dealing with congestion - it was causing aspiration and choking for her, as well as causing her to swallow a lot of air, which was so painful. We advocated hard for her as we could see the BiPap was causing more issue than help. There is such a fine line in helping her breathing and healing from the virus and also trying to help her breathing from the decline of her medical condition and trying to keep her Co2 numbers lower. Hospital stays are so hard for Isla. She can't fully understand what is happening with her body, why she is at the hospital and all that is happening to her there. It is very scary for her. PTSD flares up. Thankfully, after about 5 days, she was showing enough improvement to head home and continue all the treatments at home. We are SO grateful for her team of doctors and for the equipment that we have to use at home (we don't take that for granted!!! Getting medical equipment approved and at home is not easy... so thankful we have what we do for our girl!) This virus was hard on Isla, and it was a slow recovery. We see the decline in her thoracic insufficiency as she struggled more than she has in the past with getting sick. 

Isla has continued to have daily fevers even while recovered from the virus. For the past month, we were noticing her hip having some more pain than usual, and by last week, she was starting to limp and not want to walk. We took her into the orthopedics urgent care at Children's and after x-rays, labs, and an ultrasound, we found out that Isla hip has fluid around it. We have her on anti-inflammatory meds and we have an appointment with an orthopedic hip specialist in a couple of days. We are hoping it is just temporary, possibly just from the virus, and that it will resolve soon. She lives with a lot of pain in her back, hips, shoulders, etc...so we need to get it looked into more. She is so strong! 

Isla has been slowly working on wearing her BiPap again. She has been quite nervous after the experiences with it in the hospital. Those scary struggles for her brought on a lot of anxiety with wearing it. Once fully better from the virus, she started with time on the BiPap machine during the day and now has been wearing the BiPap at night for part of the night. 
Her Co2 numbers have still been high but not trending higher than they have been in the past few lab checks. Isla was going to be having a BiPap titrating sleep study the day that she came down with the virus, so that has now been rescheduled for April 19th. Isla's pulmonologist in Philadelphia is fairly certain that she will need to be on settings double of what she is on now on, to try to maintain the breathing that she currently has. 
We are praying that Isla stays healthy for this upcoming sleep study, handles it miraculously well, and that we can gain very clear results to know exactly where her BiPap machine levels need to be to maintain her current breathing and how much of the day or night she is needing to wear it. We need this clarity. 

Despite all the health challenges, Isla still pursues each day with determination :) We have loved getting our warrior girl and fam out in the sun when we can...fresh air and vitamin D! Isla cannot always communicate her pain, but at times, she is able to say what hurts and communicate "too tired." We take many breaks through the day, but she doesn't want any of the challenges to fully stop her. She struggles with limitations. Her determination is really incredible, and I think to many people, she may seem "ok" or "better", but she is a warrior who is powering through her body doing a lot to try to stop her. We pray for her excitement for each day to not stop... for her determination to not waver. 

We loved celebrating Easter together and we are so grateful Isla could do a little of our tradition of painting windows. She still wanted to dye eggs for Easter and also do our tradition of an egg hunt. We were able to have a sweet backyard Easter lunch, and it was just such a blessed time. Precious family time! Isla still had a fever but was so happy to celebrate! Celebrating in life is one of our favorite things! 

Happy Easter! He is Risen!