Jonah on the train at Storybookland on June 17th
It's candidly harder to sit down and write updates than I'd anticipated, both due to the constant activity at the hospital, spending time with the other kids, as well as finding the words to say.
Jonah has yet to wake up from surgery last week and has posterior fossa syndrome. We're seeing a little more extremity movement, but it's a waiting game. If he's fighting and using energy to recover from the brain injury rather than responding to us then let him sleep as long as he needs to, but we'd obviously like to have him awake.
In just a few minutes he's going into another surgery to have both a permanent shunt installed to drain excess spinal fluid from the brain into the stomach and a double broviac port installed for drawing of blood and future delivery of chemo.
We met with the oncology team last night and are working with them on determining course of treatment which requires some big decision in the next week.
Jonah has been determined to be the most popular kid on the floor - anytime you step into the family room at the PICU it's full of family and friends visiting Jonah. We can't express how much we appreciate the huge outpouring of support from both near and far.
Thanks for joining us on this journey.
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Praying for the very best outcome for Jonah! ! Also praying for wisdom for you guys as well as the doctors and nurses for the right decisions at the right time. May God pick you up and lift you up with His love that is so devine!! When whispering in Jonah's ear , let him know that Timmy the turtle misses him very much! Love you guys!
ReplyDeleteHeard about you from a friend, sending good thoughts and prayers for your family.
ReplyDeletePraying for Jonah and you all as you move through this heart wrenching process. Thank you for sharing all that is happening---your unbelievable strength, vulnerability, and candor is inspiring and humbling. Sending prayers from Virginia.
ReplyDeleteWe are in Texas visiting family but are praying for Jonah and your whole family, that God's peace and presence would be with you amidst the sorrows, waiting, and decision-making. May you find God to be your refuge, an ever-present help in time of need. Love, Walter, Toni, Nathan and Naomi
ReplyDeleteHey all so good to see you again today. Amazing amazing family that you are. Here is a prayer that is from one of our services and just sent out to our prayer ministry....just in case it comes in handy :)
ReplyDeleteI also have here a Prayer of Intercession from our worship service on July 12th.
God you are our safe place to hide.
You are our mighty fortress.
You are our ever present help in time of need.
We turn to you in the midst of our troubles.
Lord, our world is full of difficulties.
We may feel afraid, but it does not overcome us
because we know we can put our trust in you.
Your love and grace are like streams of water in the desert.
Your joy comes splashing down upon us.
You refresh and renew us like rain coming down on the earth.
Bring your water of life to those who are thirsty
and living in a dry and weary land.
Where there are wars, bring your peace.
Where there is despair, bring your hope.
Where there is animosity, bring your reconciliation.
Where there is abuse, bring your tender mercies.
Where there is poverty, bring your charity.
Where there is illness, bring your healing.
Where there is grief, bring your comfort.
Where there is injustice, bring your righteousness.
Lord you are our mighty fortress, our strong deliverer.
In you we put our trust and release ourselves into your hands.
Amen