grace led in life

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!