Today marks the 1 week mark of being home. What a joy it has been to be together as a family again! Although there is a lot more going on now around Levi than just being in a hospital bed, the change has been great for Levi and us all. Here is an overview of life at home:

 

Medically: Levi has been medically doing well since we arrived home from the hospital. We started a strict routine to keep on top of his respiratory function. It has had its challenges, but we are grateful for the blessing to keep Levi healthy and safe at home. Levi has surprised us by not needing as much continual oxygen as he did while in the hospital! We believe his use of a bipap machine, while making sleeping a bit tricky, is helping to recruit greater respiratory function during the day. We still consistently monitor his rates and have oxygen within arms reach at all times. Yet, we are grateful that he his breathing stronger on his own. We are praying this continues! One additional prayer is for a pressure ulcer on Levi’s tailbone. We have worked hard to keep Levi’s skin from breaking down. Yet with his muscle atrophy and lack of mobility his skin began breaking down in the hospital. Pray for healing as we work with a wound and skin care clinic. 

 

Functionally: Levi has lost almost all physical functional ability and we can tell his mental cognition is foggy. We have begun to see more and more movements over the past few days and are hopeful that this will increase week by week. We begin PT and Speech therapy this week and OT next week to help Levi regain some of his function with his arms, legs, and oral motor function.

 

Medicines: We are slowly reducing and discontinuing some medicine that Levi required but we couldn't immediate stop because his body became dependent upon. This week we will end four pretty heavy medicines that we now he needed but we are very grateful to discontinue. Praise the Lord! We are hoping as these meds work their way out of his system his function ability and awareness return.

 

Homeschool: We have continued homeschooling our other kiddos and it has been a gift to get back into some of our rhythms and snuggle up for some good reads as a family. We are on the third Green Ember book and the kids are eating it up! We love seeing the thrill in our kiddos faces as we dive into the world of Natalia.

 

Amy & Jared: It probably goes without saying that we are tired. Yet, it is such a different tired than being at the hospital. The transition home includes around the clock care yet we are so grateful to be doing it together as a family. So much has happened in such a short amount of time it has been hard to mentally and emotionally keep up. There comes a point at which you can no longer process in the moment, but just need to keep going. We feel like we passed that point along time ago and we have been grateful for God's strength to keep going. There will be time to process, there will be time to heal. But right now we’re thankful to be helping Levi and the kids take small steps to getting better and better.

 

Thankful: Even amongst all the difficulties, we are overwhelmed how the Lord has continued to provide and care for us. We feel amazed for so many of you who are praying, so many of you who are meeting tangible needs like food and finances, so many who have reached out and stepped in to help. The Lord has sustained each of us in different ways through these last couple months. We know the Lord will continue to care for us and give us all that we need. Thank you dear ones for coming with us on this journey!

 

Prayers: This week is a full one for us. From doctors appointments, to therapies, homeschool, to trying to get into rhythms of life when life feels very different. You can pray the Lord would give us peace, give us rest, keep us healthy (Amy and I already have already been sick this past weekend), and keep us trusting. We keep praying for Levi to get stronger and stay healthy. And we keep asking the Lord to help us help our younger ones process all that has happened and the new needs now before us.

 

We are staining to keep our eyes on Jesus. We are thankful for the journey the Lord has us on and the people he has placed in our crew. There are still hard moments and uncertainty mixed with hopeful prayers.

 

We recently read an article on Desiring God called Life is for Living that expressed some of the ache of our hearts: "Bury me, my Lord — throw dirt upon my aspirations, my dreams, my life — and then exhume what is worthy, what is true, what is good, what is beautiful, that which is pleasing in your sight. I am but a dream, a shadow, a blade of grass blowing in the wind. Show me death to teach me life!"

 

So while we have dreams and hopes, aspirations and desires, our true hope rests in the fact that our Lord will continue to give us life in himself. Sometimes there is sorrow in not living "life" like so many around us or how we imagined. Yet life is not ultimately something to be lived, rather it is an abundance only found in Christ alone (John 11:25). Thus we continue to pray, "Teach me to live while I live. Take me to the end of life that I might learn to live this life as I wait for life with you."