New Normal

March 29th, 2023

Grateful and a new normal…..

It’s been a while since my last update. We are now all in Calgary and Ezekiel turned 1 on February 19th. Our time back has been met with a few challenges but thankful that we are all together again. Zeke got rsv the first week home, followed by a cold. This was not ideal but he faired well. Although it took a lot longer than we expected we’ve met some of the new team at Alberta Children’s hospital.

Most of his clinic visits have been following him closely for his blood clots, feeding, physiotherapy, neurology and cardiac. Before we left sick kids the consensus was Zeke would need to be on blood thinners for a while as the clots in the various locations have not changed in size. Since we’ve been here his clots have still remained the same and so he’ll continue with blood thinners in the hopes they resolve.

Our last cardiac appointment this past Thursday was not what we wanted to hear. There is concern that Zeke’s SVC syndrome is back and his new anatomy is somewhat compromised. He will be admitted this evening for a sedated MRI early Thursday morning. There is also a plan to have him go through to Edmonton for a diagnostic cath lab.

Ben and I have been reflecting on the past 12 months and realize that these unexpected hospitalizations will be a new norm for our family. We decided to reflect on the things we are grateful for as we wait for the results of the MRI scheduled for Thursday.

We are so grateful to our church family for the meal train and for the help with the kids. We love all the precious families that have helped and are grateful for them taking our kiddos in. We are grateful for family and their care and concern for our boy and for reaching out and always touching base with us. Thank you to the many saints some of whom we know and others we do not for all your prayers, love and concern for our boy and our family. Thank you to Jessie a fellow Heterotaxy mama whose willingness to share her story has so encouraged us through this journey.

Above all we give thanks to God who has carried us through and blessed us with 12 beautiful but hard months with our sweet boy. It’s all been for his glory and our good. We continue to pray for many more months and years with Zeke. We are learning to always have a posture that gives thanks in everything. This verse has been an encouragement for us;

1 Thessalonians 5:16-18 “Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”

For now we will get through this latest hospital admission hoping for a quick resolution and praying that there is no need for further surgeries. Please pray with us for this upcoming MRI test and the cath lab. We will endeavor to keep posting updates so you can follow along with Zeke’s recovery. Again from our family to all of you thank you!