It’s 5:30am Friday morning and I know everyone will be waking up soon looking for an update on Kai. I know you all are praying for him and thinking of him and telling your friends about him so they can do the same, he needs it now more than ever.

Yesterday he had an MRI of his abdomen and brain. The results were not good. His tumor is growing, there is a blockage/malfunction in his shunt and he is developing hydrocephalus again. His blood cultures also came back with a second bacteria on top of the bacteria and fungal infections we have already been treating.

Starting Wednesday night he was having a significant amount of breakthrough pain probably caused by the pressure building in his head. His stomach has also been bothering him from all of the harsh antibiotics they have been using to treat the infection. And now that his port Is out they are having to stick him multiples times a day to try to get enough blood for his daily lab work. It has not been an easy few days for the little guys and I just can’t stand to see him in pain anymore.

After many discussions with all of the people who have cared for and grown to love Kai over the past 15 months, we have decided to let him rest, keep him comfortable and hold him close.

No more pokes, no more being woken up every hour for vitals, no more tests.

Late last night we were able to unhook him from most of the wires and we traded his hospital crib for a bed so he will never lay alone again. We slept comfortably most of the night and when he woke this morning I got to look into his eyes, squeeze him tight and ask for more pain meds so he can rest peacefully again.
They warned me that as we increase his meds to manage the pain he will wake less and less, and after he went to sleep last night I was afraid I would never see those big brown eyes again but this mornig I held him. Studied him looked into his eye as he started into mine. I hesitated, for only a second, before calling the nurse for more meds as he began to fuss. I wanted to stair into those eyes forever, but my job now is to make sure those eyes, open or closed, show no pain.



64 thoughts on “Thursday

  1. I am so sorry for your pain and for Kai’s pain. Holding Kai and you close to my heart. Sending love, hugs and wishes for peace for both of you.
    Mary Pat

  2. There are no adeqaute words to describe how sorry I am ….you are such a phenomenal mother to Kai. I am lifting him and you in prayer and hoping he is comfortable and able to rest.
    With love and hugs to you and your beautiful Kai

  3. Kerri – you are an amazing person and mother – I am praying for u and your husband and Kai more than ever – may God give you all the strength and peace and heal all the pain.. There are no words to express .. Thinking and praying for you all! Xoxo

  4. I love all so much and am holding close in my heart. Prayers for piece, comfort and strength for you, Kai and Mark.

  5. Kerri and family,
    I learned of Kai and his story today from a mutual friend. What a beautiful boy and what an amazingly strong and loving mama he has! I am holding you, Kai and all of your family in my heart and prayers and sending along some healing energy to you all. Wishing you love, light and peace as you walk this difficult but loving road.

  6. You are the strongest family I know. We continue to pray for you. I’m so glad you were able to sleep and hold him close.

  7. What an amazing bond of love you have for your little boy. May the time you spend with him be warm and close. I am crying as I write this; I will be praying for you all.
    Randi Booth

  8. Kerri, you, your family, and sweet Kai are always in my thoughts. I wish you peace and strength through this most difficult time. Thank you for continuing to share your journey and your beautiful boy with us.

  9. Kerri – holding you and Kai so close to my heart. You are so brave and I will be sending you so much love and support so that you can stay that way. Kai is an amazing gift sent here to teach us so much about love and about what’s important in life. Know that I will be sending you so much love, light, hugs and prayers. Hold Kai close and tell him that Hailey and I love him.

  10. What could I possibly say with words that would express the emotion I’m feeling for you all right now. Wishing you peace and comfort, warm snuggles, and rest. You guys are always at the forefront of my mind and in my heart and prayers.

  11. Kerri I’m having a hard time writing this. God put Kai into your life because he knew he would be with the perfect mom and dad for him. Parents who would support and love him unconditionally. Although this journey is very painful it has also been a beautiful one. I am continually amazed at how much love we can have for one another. You Kai and Mark have brought total strangers together in love. An incredible gift that I am honored and humbled to be a part of. Hold your beautiful guy and know that we are all holding you. God bless.


  12. This is the first time I am reading this blog, and all I can say is “wow”, because I am blown away by how strong you all are. My thoughts and prayers are with you all, and the next time I feel the need to complain about anything in life, large or small, I will think of you all and the daily struggle you are facing.

  13. I have prayed for you and your son and your mom. Please know that I feel there are reasons for everything we are given to deal with on this Earth. Having this blog for me to read has given me so much to be thankful for, but much more importantly so much to pray for. Know that God and the angels will be there for Kei!

  14. Kerri, Mark and families,
    There are no adequate words to give you comfort. God did give Kai the most perfect parents and extended family for his short journey here on earth. And, yes, he did teach all who were blessed to know him, and even those who never met him, about the true meaning of love. I am so glad he is wrapped in your arms and those who are so close to him. My thoughts and prayers are with you all. Love, Susan R.

  15. I only know of you from Colette but I’ve followed along on the sidelines. Please know Kai has touched so many lives and being only 2 that’s a big feat. Ill continue my prayers for you all and mostly for Kai and that he is embraced by the love all around him so he can sleep soundly.

  16. Oh my gosh… I am also a local MoCo alum, and saw some others post about this. I am at work, but just read your blog beginning to end and I have tears streaming down my face. You are such a strong momma for the fight you faught for Kai, and are now even stronger for putting it all in God’s hands. I pray that you have some good snuggles with Kai and somehow have strength and courage for whatever comes next. I know I’ve never met you in person, but you and Kai and your family are in my constant prayers now. I don’t even know what else to say, I am just filled with so many emotions right now…

  17. Kerri,
    You, Marc and Kai are in our prayers. We love you. You are so amazing and strong! Kai is so lucky to have you for his momma!

  18. I had no idea that you had this blog. What a beautiful picture of Kai and you too mom. My heart breaks for you and your husband and family at this time. I hope that he is comforted.

  19. Kerri,

    That’s so wonderful that you were able to switch out the crib for a bed. What a wonderful idea. That must be so comforting for him to feel your skin every moment. We think of you guys often. Much love to you and your adorable Kai.

  20. Thinking of Kai and the family. Sending you positive energy and prayers your way. The picture of Kai is beautiful. You are such a strong and courageous woman and Kai is fortunate to have you!

  21. Love to you all, and may God carry your weight, give you strength, and allow you to live in your family’s love forever.

  22. Lord I come to you as humble as I know how asking you to Bless this baby cover him with your blood…..let his Moma know that u got work for him to do down here on this earth giant that ur not finish wit him yet…annoint his head take the pain just keep him in ya care this we ask in jesus name Amen

  23. Know you are surrounded by love. You are giving Kai the greatest gift of all, a mother’s exceptional love for her child. Kai touches the hearts and lives of many. May you all have comfort, strength, peace and love.

  24. I sit hear w tears in my eyes reading ur story im so very sorry love prayers and hugs from my family to yours

  25. My heart goes out to you. I pray for Kai – no more pain and only the comfort and warmth of your love. Reading about Kai’s journey has changed me in that from now on I will hug a little tighter with the ones I love and treasure every moment.

  26. Kerri, I hope the two of you find peace free of pain. I am keeping you in my thoughts and sending you love.

  27. Sending the snuggliest, warmest hug from a mom to another mom!!!! May you rest your head at night and never doubt that you did EVERYTHING you could to make Kai’s time here absolutely amazing. You are a wonderful mom and he is one heck of a kid!!!—from a fellow MoCo mom, Elaine

  28. I am saying a prayer for your beautiful son Kai and your family. As a mother, my heart is breaking for the pain you and your beautiful boy are going through. I received this from a friend and was reduced to tears from the first post I read. You are strong and amazing may God Bless you and Kai and know you will continue to be my prayers for along time. May you find peace snuggling with your beautiful boy and maybe be free from pain. God Bless you.


  29. Thinking of you and Kai. I feel like nothing I can say could begin to be a comfort to you, but I guess, like all the others, I am here, holding you and your son in my heart, crying as I read your post, hoping that you will find peace, that your mission to keep him comfortable is accomplished. So so sorry and sending all the love and light I can to you and yor family.

  30. Dear Kerri, I just learned of your story today. My heart, thoughts, and prayers are with you, Kai, and your family and friends. Thank you for sharing with your blog.


  32. You’re in my heart and thoughts, although I don’t know you personally, I want you to know my prayers are with you and your beautiful browned eyed baby. Words can never express enough…

  33. Wishing you and your family even more love, peace, comfort, strength, bravery. Holding you all in our thoughts and hearts from Western ma.

  34. I have no words to describe the sadness I feel for you and your family! May The Lord give you the strength you need and comfort for this road your on. My family and I are praying for you and your family. Kai is in our daily prayers for him to feel nothing but love and comfort from his family and feel no pain.
    Stay strong and know many people are praying! God give you comfort!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s