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Sweet tooth

I haven’t had the time or energy to post the past few days although every day I try. I try to find a quiet corner of the hospital to sit and drink a coffee and write, but it hasn’t been happening. I actually hate when a few days go by without writing because I feel like I won’t remember everything I wanted to say.

First of all Kai is doing well. Almost too well. When our friends from the jimmy fund came by Monday morning we all talked about how surprisingly well Kai looked. I don’t think any of us even expected to be here Monday, but here we are. Kai has always done things his own way and this will be no different.
As good as he looks, I know things are changing. Each day this week we have increased one of his meds. He had a few episodes o breakthrough pain, but everyone is very quick to make a new plan that will keep him comfortable. He has been sleeping more and more the past few days, which is hard to see especially when he still looks so good. His is still soft and pink and warm. He is still breathing steadily and clearly.
I have started getting his blood pressure done each morning. I felt like it would be a good way for me to see if things had changed overnight, but of course in true Kai fashion, his pressures have been BETTER each day…
It seems as though the infection has cleared and isn’t coming back. I am thankful for this but it also leaves me wondering…I am afraid now that this could go on a long time. Will he suffer more by going slowly as the hydrocephalus builds? Will the hydrocephalus build quickly enough or will the tumor end up slowly taking over?? Will we be here at the hospital for weeks? Should we try to go home?? I thought after making the call last week that I would no longer have to think of these things. I though we decided to let things happen as they may and chances were good this infection, this shunt malfunction, this tumor would take Kai, and it would likely be soon.
But for now he is looking good.
He is enjoying the party and the snuggles and the love.
After sleeping most of yesterday he is brighter and more alert this morning than he has been all week.
Oh Kai, I only want to do what’s best! When things are bad it is SO obvious, but when you are here in my arms this morning, happy, content, looking around it makes it so hard to remember we are doing the right thing. I have start letting you go all over again.

This morning we had breakfast together. We got a good nits sleep and no one else is here yet. He has not taken anything but a few drops of water by mouth lately, but on Ashley’s birthday he had some frosting from her cupcake and today I filled a 5ml syringe with my orange mango juice. He opened up wide and drank it drop by drop. I know it’s not much but he loved it. He has always been a sweet tooth just like his mom!
A few days ago we also had some professional pictures taken of him here in the room and yesterday I had Mark bring Kai’s photo albums from home. I have covered his door with photos and everyone keeps stopping to look at them.
There are so many good ones. So many where he is smiling and playing and doing things I had forgotten he used to do. It is a good reminder of where we are now, but also that he did do a lot in his few short years. It is sad and hard to look at them sometimes but I’d do anything to see that smile.

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54 thoughts on “Sweet tooth

  1. Thank you, Kerri, for continuing to share your sweet Kai with us. He has truly affected the lives of so many people you and he have never met. I love seeing his pictures, and while I cry every time, I know he is surrounded by so much love; and that makes me smile.

  2. Stay where you are. You are being taken care of so well by the doctors and it allows you to just be mom. Don’t take on unneccasary stress of having to take over meds and pain relief. God has granted you more time with you sweet boy. Settle in and soak up his love. It is not his time to go yet. God Bless you

    1. Tracy I agree. You are blessed with this time with your son and you should enjoy every minute of it without feeling like you need to be the ‘nurse’. You can enjoy your time being his mom. He is so lucky to have you. I know we don’t know each other but I have begun following your blog as well as Andrea’s updates on FaceBook and somehow feel like i know you. I am praying for you all and hope that you will find comfort in your time with your precious little boy. Life is not fair sometimes but you are taking each moment of your time with Kai to cherish forever and you are showing such amazing strength! Stay strong and know we are all thinking of you and your family.

      1. I also agree with Tracy. As I sit here in tears with my 3 mo old in my lap, I can’t even imagine what you’re going through. I would stay and treasure every extra moment I was given and give him as much orange mango juice as he can drink! Try to live in the moment. As an RN I would suggest trying not to overdo the pain meds when he’s feeling well so that they’ll be more effective when he really needs them the most. My heart breaks for you. I will keep praying for a miracle…and that smile.

  3. Kerri, I have never had the pleasure of meeting you or Kai but I feel like I know both of you. I think about you both constantly and share your story with anyone who will listen. My son is only 19 months old but I tell him daily about Beautiful Kai. We say our prayers for you daily. You are an absolute inspiration!!! Thank you for sharing your son and your story with the world. In my eyes you have made the world a better place for my son to grow up! Hugs, Kristen Tobin

    ________________________________

  4. Kerri,
    God bless you & sweet Kai, he is an angel on earth. You both are so amazingly strong. We met via tubie group on fb and Kai will always have a place in my heart & that smile will never be forgotten.
    Hugs mumma

  5. I hate to say stay in the hospital, but I agree, you should stay, that way you get all the time you can to snuggle & give him treats & not worry about meds/doses, or anything, just spending time. Love,love,love seeing these sweet pics of Kai baby πŸ™‚ And I can’t wait to get up there to see you guys again!!! XOXO

  6. I think about you and your little boy everyday:) I cry and it makes my heart and stomach hurt.. but your family has impacted me and I won’t ever forget Kai’s story- I check for updates everyday on how he is doing- I sent an application to shriners children’s hospital in springfield today to volunteer- I hope I hear back from them. I just want to give back in some special way and I thought this would be a good idea. There is nothing in life that matters more then your family’s health- nothing. xxoo

    1. I never met you but I tell my son about Kai and today showed him the picture if Kai. My three year old boy asked if he can go see him at the hospital to give Kai a hug. So please give Kai a hug from a little boy who is thinking of him. And, as many others here, I think of you and your sweet boy each day. Sending lots if giod loving energy for both of you. Kai is so loved by strangers and non-strangers. Peace and love. Etel

  7. Kerri,

    Thank you for sharing Kai with all if us! He is a blessing. I think about him constantly. He has impacted my life. You have made all the hard decisions already… All there is left to do is enjoy each and every special moment. I have never met Kai but I know how special he is. I’m happy to hear he is doing a little better. Much love to all of you. If there is anything I can do for you please reach out!

    Alise

  8. Thank you so much for sharing your story with us. Your strength amazes me and has helped me be a better mother, wife, and friend. My thoughts are with you and your family.

  9. Such a handsome, handsome boy! I’m so incredibly glad I got to meet Kai, and you, and your family. Thank you for sharing Kai with me, both at Camp Sunshine and here at the hospital. I’m so honored to have been able to be a part of his life! Keep up the good work, Kerri, you’re doing an amazing, inspirational, fantastic job. And you ARE doing the right thing – as his mom, you know what’s best, and that’s exactly what you’re doing for him.

  10. Kerri,
    You and Kai have been an inspiration for strength and love. We do not know each other, but I pray and cry for Kai and you each day, and send all my positive thoughts your way. I firmly believe that God is giving you this time with Kai so that you can both make peace with what will come. Take each and every moment you have as the blessing that it is, and keep your head high, as you have been. Trust your instincts, they will never steer you wrong. Kai is a miracle, and was put here on earth to teach you and all he knows about love and the precious gift of life. God will take Kai when he is ready, and I am positive that there is going to be the best place there ever could be waiting in Heaven for sweet Kai. A place he will keep ready for you to join him in someday. A place from which he will watch over you for the rest of your life. I am so pleased to hear that Kai is comfortable, and I pray with all my might he remains comfortable and happy each moment. Love and light to you all.

  11. Amazing little boy, amazing mom. Kai can feel all the love he is getting, even from strangers who never met him. He’s a living angel and we are all so much better for having been able to hear his story. Thinking of Kai all day, every day and praying for his comfort
    ❀

  12. Kerri – I love that last picture πŸ™‚ Kai looks so wise beyond his years…. He is truly a very handsome little man β™₯ You are all in my thoughts always…

  13. Dear Kerri,
    My husband and I are high school classmates of Mark and we’ve been deeply moved by your words and photos of Kai. I admire your strength and insight. Thank you for sharing your beautiful son to all of us. I hope to meet you one day. Much love, Michelle

  14. Kerri,
    Thinking of you and praying that you find peace in the loving decisions you have made. Be as much at peace as you can be, snuggle him close, soak up as much love as you can, let the doctors and nurses take care of the rest and just be the awesome mommy you are. We are all with you, supporting your every decision, and holding you close to our hearts.
    Hugs,
    Kristin

  15. I think you are so incredibly brave… I can’t imagine being in your position – but I do believe in trusting your instincts and being confident in knowing that you will always try to do what is best for your little boy and for your family.
    Thinking of all of you and sending you prayers.

  16. He looks so wise in that last photo…I can only imagine he totally understand how much love is surrounding him. Thank you for sharing your beautifully-written emotions and thoughts so honestly. We all cry with you and send our energy your way.
    Jeanette

  17. Kerri, I’m sure you don’t remember me, but I met you at MoCo a number of different times. You would pop into new mom’s group from time to time and share your experiences and stories. Although I was not aware of your blog or how Kai was doing, I thought of you both often. It breaks my heart and I’ve cried on a number of occasions over the last week since learning of this decision you have been faced with. What I really wanted to say it that I think you are so strong and brave and from my memories of those few meetings I remember thinking you were an inspiration to mom’s everywhere. To sit in a group of mostly strangers and share your story without shedding one tear was amazing to me. You were positive and loving and compassionate. I think of you constantly and hope for comfort for you and your family.

  18. Dear Kerri,

    I hear that it is both confusing and amazing for you to have this gift of more time with Kai. I just wanted to add my voice to the many surrounding you with thoughts and prayers, and tell you that your gift for writing about your experiences is so special and unforgettable, just like Kai. Since my truest way of praying is through my music, and while I would love to play my cello for Kai in person, for now I will play and lift up that musical prayer for you from here.

  19. I’m so glad I got to see these pictures of sweet Kai today. I am crying once again today at work while reading this. Kai has forever changed me and I will tell his story.

  20. Keri and Mark,
    You and your family are in our thoughts and prayers. Your story is amazing and I wish I could have meet Kai. As your mother can tell you, I love children, but moved away to FL before I got the chance to meet him. Thank you for sharing and many blessings to Kai and his amazing family.
    Joe and Walter

  21. Wishing you peace through the rest of this journey however long it may be. Thank you for so openly sharing your beautiful son’s story and reminding us all how precious life is. We must love as much as we can every single day we are on this earth. Kai will be more than simply remembered; he will continue to inspire people long after he takes his last sweet breath. Much love to your entire family.

  22. Sending peaceful thoughts to you and Kai. You are an amazing person to invite us into such deeply personal days in your lives. I don’t think we have met, but I have followed your story through friends from MoCo. My son was 12 days old when we let him go-he did not have cancer, but brain injury sustained at 22 hrs old. It is amazing what modern medicine can do sometimes, but the brain remains a part they can not easily ‘fix.’ it is the hardest thing I have ever done and I wish you a quiet strength and peaceful heart in the days ahead. It is unimaginable to most to love your child so much that the best thing for them is to let them go.

  23. Kerri,

    I have never had the fortune of meeting you or Kai, but my heart breaks for you both. Thank you for sharing your story, as it allows us to get to know you and your sweet boy and to remind us to appreciate life’s blessings. I think about you often and pray for peace.

    Rebecca Pratt

  24. My heart goes out to sweet Kai, you and your family. Everyday I rush here to see how he is. My thoughts and prayers are with you. Enjoy the precious gift of more time with Kai, soak up those hugs, smiles and love. I know it must be hard but let the Dr’s do the rest and you be mommy. I pray Kai is resting comfortably and pain free.
    God Bless you

  25. Thank you Kerri for sharing your heart. I am here. So many of us are. We read every word. We pray fiercely. We love tremendously. Kai is giving you time. Take it. Let go. Let others worry about meds. You just do what you do best. Love unconditionally just like Kai does for you. All my Love

    Jen

  26. Kerri, thank you so much for sharing your story with the world. I am praying daily for you and Kai. I love the last picture you posted. He is so strong and an inspiration to us all!

  27. Kerri, I went back to work after a long weekend at home and felt distracted as I tried to teach 5 classes of 7th graders because I was wondering how Kai was feeling and how you were doing. I felt funny telling co-workers why I was so distant; it seemed odd to try to explain that I was worried about a family I barely knew. Today I noticed your update and read it while the students were at lunch. My coworkers discovered me sobbing at my desk; they started as happy tears at the thought of Kai enjoying some sweets and turned to sorrow. I found myself going on and on to my co-workers about Kai and his life and his strong mom, who writes beautifully and has shared her story with the world. Now just a few more strangers have Kai (and his amazing mom) in their hearts and are sending their love and prayers his way.

  28. Always sending you prayers and warm thoughts. You and Kai have touched hundreds if not thousands of hearts, it’s so very easy to see by everyone’s love and support. XO

  29. Hard to express in words just how impressed
    I am with you as a mother, you’re truly an inpiration to us all. Kai is a huge hero and inspires me to be a better everything.. Sending many prayers….always
    E.M

  30. Hi Kerry, I’m Nicole Glover’s sister and I met you and your precious Kai at Moco a couple times. I’ve been reading all your updates and I have never shed so many tears.. It has put my own life into perspective and I have never felt as blessed as I do now about my little Jackson’s health. Kai is beautiful. Simply beautiful. God has a plan with him, and whatever that plan is, He wants you to trust him and give all your questions, tears, whatever you are feeling to Him. My prayer is peace and comfort in all your hearts. Do me a favor, please? Please give Kai a gentle squeeze from me. Kai will have a special spot in my heart, his story has truly touched me. Thank you.

    Love, Christie

  31. Hi Kerry, you and Kai remain in my thoughts and prayers constantly. there s such beauty in your writing. I feel so honored by your openness to all of us, and that you invite us in to your thoughts, your quiet moments of grief and hope. Your hospitality to all of us who may not even know you or Kai, but are touched by your story and want to offer support, is just astounding. Thank you for being honest, real and letting us hold you and Kai in our hearts. Hugs and peace.

  32. Enjoy each moment you have with your precious little boy. Those memories will last a lifetime and pull you through. Also remember no regrets you an aamazing mom and you are doing things exactly the way you are supposed to. I am sure Kai is guiding you. Take care.

  33. God works in mysterious way … I have been praying for Kai every day since I got to know his story …. Very happy that he is doing a little better … I wish I could have the power to heal him and make him feel good . Be strong baby boy …. Lots of love and hugs for u …. Xoxox

  34. YOU ARE AMAZING THE THINGS THAT YOU DO AND DO THEM WELL FOR KAI, THERE IS NO DOUBT IN MY MIND THAT HE IS HANGING ON TO YOU AS LONG AS HE CAN ! HE IS SUCH AN ANGEL ! I THINK ABOUT HIM ALL OF THE TIME HE HAS TOUCHED MY HEART AND I CAN NOT HELP BUT CRY AND THINK OF YOU AND ALL THAT YOU ARE GOING THUR ! I PRAY THAT THE LORD WILL CONTINUE TO COMFORT YOU DURING THIS TIME ! AND I PRAY FOR PEACE FOR YOU AND THAT THE LORD WILL CONTINUE TO HELP YOU TO UNDERSTAND AND BE ABLE TO STRONG THUR IT ALL ! YOU NEED TO REMEMBER YOU MAY LOSE KAI BUT ONE DAY YOU WILL BE ABLE TO SEE HIM WITH NO MORE PAIN AND RUN AND PLAYING IN HEAVEN ! I LOOK FORWARD TO READING AND OF THE FUN YOU ARE HAVING WITH HIM , YOU HAVE MADE ME REALIZE JUST HOW PRECIOUS LIFE IS AND WE NEED TO MAKE THE MOST OF IT ! YOU TAKE CARE OF YOURSELF AND KAI AND I AM SENDING YOU A BIG HUG TO LET YOU KNOW WE ALL LOVE YOU AND KAI ! WE ALL LOVE YOU GUYS FROM S.C.

  35. As I wake this morning, I find myself thinking of you and Kai, wondering how your night went, hoping you slept well and Kai was pain free. I like many, check your blog often for updates, and go about my day with you, Kai and your family on my mind. I was able to share your story with some coworkers yesterday who will also be keeping you in there thoughts I.prayers. By reading all these stories and comments it really goes to show how important prayer is and how strong you baby is to continue this fight as he is not ready to leave. I continue to pray for peace, love and many happy moments as the days go on. Stay strong… Hold on tight and love unconditionally… God bless you all ❀

  36. What memories you are storing. What mental images you will retain and bring out as needed. I know the waiting and watching is filled with questions but it sounds like love surrounds you all. My prayers are with you every moment of each day.

  37. I, too, have never met you or your family, but am a member of Hip Milford Area Mamas (which is how I became aware of your blog.) Like so many else have mentioned, I find myself thinking about Kai quite a bit, and about the incredible strength you, as his mama, have. Having two toddlers of my own, I really don’t know if I could be so strong in the face of an illness such as cancer…Please enjoy every moment of your time with him, trust in your ability to make the right decisions for your family, and hang in there…hoping for a miracle for your precious little man.

  38. There are SO many people praying for you and your family! I think about Kai every day! You are doing such an amazing job and you are so strong. Your story has touched mine and so many other people’s lives. And I agree, trust yourself… you know what is best for you and your family. You have SO many people behind you! Hang in there. I pray that Kai continues to do better.. and better… and better!!!!!!

  39. Hi Kerry..
    I’ve worked with your Aunt Margie since she started at the dental office, and think she’s great. Through her, I feel liked I’ve shared in Kai’s life and illness, and have seen his beautiful pictures thoughout. He and you have been in my prayers since diagnosis, and will continue to be. Your blog sharings are beautiful, heartwarming, and so touching. May God bless you and give you the strength you need throughout these days. Warmly, Mary Piwko

  40. Kerri, I have never met you, but you write so honestly and beautifully that I feel as though I do know you. My sister, Tara, knows you from MoCo and playgroups in Worcester. I have been praying for you every day since I first read this blog, last week….when you made the decision. Last night I shared Kai’s story with my church’s small group (kind of like a bible study, but we just get together and share our lives and pray for things etc). We prayed extensively for you both- that in those moments when you are alone, and it’s just the two of you, that you would feel peace beyond understanding….and a friend of mine prayed Psalm 23 for you, that “even though you walk through the valley of the shadow of death, you would fear no evil…” Kai is beautiful, and know that his life has touched many, many other lives out there. And *your* life has, too. Thank you for sharing all of this.
    ~Jennifer (Keating) Roca in Attleboro

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