There is no place like Home

Wednesday, 6/6 - 10 PM update

Hi family, I will not be updating daily but just wanted to share that we got to bring our baby home today! We have not seen this joyful heart & smile in a while! We are so thankful. All pictures above are from today, she loves to be home.

We had a rough early AM hours, Julia was in a lot of discomfort! She was being infused with potassium and phosphate, giving her either weird taste or burning in her eyes and stomach ache. Sleep schedule was all over the place, but it’s ok because today we are home and could not be happier. In Jesus name we will sleep soundly tonight in the comfort of our bed.

Her blood numbers are much better as my husband described in a message to our kids this morning, (I just copy/pasted):

“God answering prayers. Her platelets are up to 30, wbc are 1 and potassium back to normal range of 3.8 and phosphate back to 4.2. So her numbers are miraculous today. God is good.”

We will be back at the clinic Friday to check blood levels and see how the Chemotherapy has affected her numbers. She might need infusions.

We were sent home with a medication bag pumping 24hrs through her line/portal for the original blood bacteria that had sent us to the hospital. She will need this for the next 14 days. We get a home nurse visit tomorrow to change the medication bag and teach us how to get it done ourselves 🙏🏼

Prayer Requests:

• Bone Marrow to RESTART and start doing what is supposed to do and produce healthy cells

• The medication pump attached to her portal line 24hrs x 14 days. All new to us - we need no fear and confidence to manage

• All her blood levels and electrolytes to continue to reflect good progress and no critical declines

• Chemotherapy given today to do the cleaning of any bad cells, and to not tear down her body completely. For Juju to have strength from God to withstand the side effects

• Julia still has a mouth sore (healing) and we need her bowl movements to continue to be frequent

Thanks family! Grateful for your prayers. Your words and messages of encouragement gives us hope to continue to trust, pray & obey Gods direction for our baby. In so many areas we have seen the hand of God guide & provide! To Him be all Glory!

“The Lord keeps you from all harm and watches over your life. The Lord keeps watch over you as you come and go, both now and forever.”

‭‭Psalms‬ ‭121‬:‭7‬-‭8‬ ‭NLT‬‬

In God we Trust!