After two days I have finally fully cooled off about the scan. I am happy we talked about it and I know if I really needed it I would push harder and it would happen. But a few days out I feel better about not needing it.
Kai is telling us what we need to know.
He is still completely comfortable and that is an amazing gift, but if I look closely and think back just a little, it is clear that things are not the same.
He is sleeping more and more each day. Yesterday we didn’t wake up until 9! And then he comfortably slept most of the day away snuggled up in someone’s arms.
He has started holding fluid in his face. When he lays to one side it all collects and he ends up with a puffy eye and a fat cheek. They said this could be from in the pressure, the fluid could be slowly leaking from his shunt site, and at this point I have to believe that is probably true. It doesn’t seem to bother him and it comes and goes, so there is really nothing to do about it except be aware that things are changing.
Ever since the scan talk we have really been considering the option of going home.
A week ago it was not an option for me. I felt safe here in the hospital. I felt free from being his nurse. I felt happy to be shut off from having to watch everyone’s normal life going on around us. I think in someways staying here makes this all feel a little less real. I don’t have to worry about anything except being with him and thats enough right now, but eventually its all going to catch up with me. Someday I will have to leave this hospital with or without Kai. Someday I will have to get in my car, Kai’s car, and see his car seat and his wheel chair in my rear view mirror. Someday I will have to take those things out of my car for the last time. I will have to take the pictures down from our hospital door. I will have to pack up his bag of cloths and blankets and toys. I will have to drive down the mass pike alone. I will have to face the outside world and the lives that are continuing to live on around us. But I realized that right now I have a brief window of time where I can do all of that with Kai, one last time….
Keikikai 
(((HUGS))) mama. This breaks my heart all over again. Follow your heart…you know what you need to do. Hoping Kai continues to stay comfortable…
How I wish we had some comforting words for you. I’ve said it before and I’ll say it again, you are an amazing person and mother. Kai is a brave little boy. Our hearts break for you. Please know that you are in our thoughts and prayers every day.
You are so amazingly strong Kerri! Kai is such a strong boy 🙂 saying lots of prayers for the both of you!
So many thoughts and prayers are with Kai and you, and sending many, many more. Follow your heart and intuition, you are his mama and his angel. Praying for Kai continuously. 🙂
Do not give up!!! MIracles do happen. I pray that Kai will live a long and happy life and you will get to do all of those things with him millions of times instead of just one.
Dearest Kerri –
My thoughts and prayers are with you and Kai. You are such a wonderful Mom for him and you will make the right decisions. Thank you for sharing your thoughts and the beautiful pictures of Kai. Sending you massive amounts of love, hugs and peaceful thoughts.
MP
We all continue to pray for Kai and his family. You are not only his mom, but his guardian angel. Cherish every moment you can with him whether he is sleeping or awake. He knows you are there with him and can feel you comforting him every moment.
Big hugs and prayers. We love you all.
Love,
Randi Booth
I wish so badly I could take these shoes you are forced to wear. Please know I am praying for you, hurt for you, and cry for you. And I will continue for you.
You are his mom; you CAN’T make the wrong decision!! Hugs to all of you.
I am so sorry that you and your family and going through this. I have been following your story on a friends Facebook and my heart melts every day for you guys. You are a strong woman and a wonderful mom.. I look forward to seeing kia’s picture every day because I know he has made it another day. If there is anything at all I can do please don’t hesitate to ask. Kia has a little spot in my heart even though I have never met him. I am a mom and I dot know what I would eve do if I was in your shoes. With love Jenn
Follow your heart it will tell you what to do. You will make the right decision for your family. Praying for a miracle and your peace as you make these painful decisions. Praying for you.
Oh Kerri I wish we could make it all better. I’m so glad that he’s comfortable and that he has such an amazing momma. Just keep going with your heart..stay wherever you and he will be most comfortable. Continuing to send love and prayers.
You are the most amazing person I know!!! Sending big Hugh’s and lots of love! Xoxo
Kerri, You continue to have amazing perspective. He is precious:) my heart is with you and Kai. – heather
Praying for you and hoping you can soak up every last moment with him!
You,and Kai are in my prayers. My heart goes out to you and your family
❤ loving you so much and thinking of you always.
Our prayers will never stop….holding all of you close to our hearts. You are an amazing mom faced with these most difficult decisions. Follow your heart, you will make the right decision for Kai and yourself. Sending lots of hugs and love
xoxoxox
Melissa
Kai…please know that even though we have never met you we are praying for you, your mommy and daddy every day! We hope that you are comfortable and know that the arms that hold you everyday love you SO much. Hang in there little one!
Prayers for Kai and family. My heart breaks for you. Kai has touched me even though I have never met him. He has touched so many. Endless hugs and prayers xoxo
Dear Kerri,
I read and keep updated, but have never written. Probably because your situation hits so close to home for me. Someday I will lose my oldest son to his disease. I don’t know when, but we are all acutely aware that it will happen. It will probably be fast but yet slow feeling. When my son first become ill, I was told to prepare and make plans. I did. I was on autopilot. And now I sit and wait and try to hang on to him. My son isn’t small anymore like Kai, but the feelings never change. What may be, what could have been, if things were different.
I rarely talk to others about my feelings about it all. I feel like sometimes it too much for people to handle, makes them nervous. People try to help by giving suggestions with good intentions. I smile and try to let it go, try not be angry. I know they will never know that pain. The numbness that comes with the waiting. My frustrations with the medical community and weight of managing care and medications. While all the while try to stay connected and grounded. We know our children better than any medical provider but can be so overwhelming.
I hope the universe is kind to you all during this time. I’m so glad to hear that his pain is managed, you are finding support, and you are enjoying this time holding your babe close. Your family is reflected in all of us, we see you in ourselves. We look at our children and see Kai. Kai’s time with you and with us has changed the people in our community of mothers. Kai’s legacy will help all of cherish every moment. Let go of the mundane frustrations of our children and be thankful. So with that I thank you for letting all of us follow you during this difficult time and allow us to come together and do what we can for you and your family. I know all too well how easy it is to turn inward and push people out to cope with the intensity.
With great love and appreciation,
Alexis
Kerri you be with your little boy where you feel most comfortable. I would like very much to visit all of you but I’m not sure if you are too overwhelmed at this point. Know that I am always thinking of you. I am so grateful to have been allowed into your lives. I am honored and humbled by all of it. I was a stranger and you Kai and Mark just let me in. That is a reflection on the type of people you are that is way it is so obvious to me why Kai was sent to you. Hold onto each other and know that my arms are there as well. GOD BE WITH YOU.
Jen
PLEASE ENJOY EVERY MOMENT YOU HAVE WITH HIM THATS ALL YOU NEED TO DO , YOU ARE AN AWESOME MOM AND KAI IS A BEAUTIFUL LITTLE BOY THAT I HAVE GROWN TO LOVE ❤ MY HEART IS BREAKING FOR YOU , PRAYING FOR A BLESSING FOR YOU AND KAI ! XOXOXO HUGS
Thinking of you all and sending love and light your way.
You are a beautiful mother. I am praying for you and Kai
I continue to pray for Kai, you and your family. My thoughts often bring me here to see how Kai is doing during the day. It is so good to see Kai comfortable. Warms my heart to see all the love around him. Kerri you are a very strong person and wonderful mommy, do not forget that it is ok to cry etc. Sending warm thoughts your way and a hug for precious Kai.
My dear friend…we are always praying of you and Kai. Follow your heart. You know what is best for Kai, and you also have known. I am pretty speechless here. We love you all and will also be there for you. Hold him close, kiss him lots and keep him safe. You are an amazing person for sharing this journey with everyone. Sending you lots of love, light, reiki and prayers.
We are loving you from here…and having that brief visit with your sweet boy was so very precious…Kerri, you have always known what you and Kai needed and you will figure this out as well…
Our job is just to pray and love you all as hard as we can….
Love, alice, emily, lexie and Max
Kerri,
You are a incredable Mom and an extremely strong woman. Thank you for the beautiful pictures of Kai. Your Wonderful ability to share your thought snd feelings is nothing short of amazing. My thoughts and prayers are with you and Kai every day.
Love Nancy (Sherry’s House)
Kerri – thank you so much for keeping us posted I think of you & your hubby and Kai everyday wondering how you all are doing .. I wish I could take all the pain away .. I wish I could heal him and cure him & I am a strong believer in my faith but have a hard time wondering why these things happen.. I continue to pray and think of you and Kai – wishing for peace, strength, and lots of love to you all .. I can’t emphasize enough how amazing your are ! Love and prayers!!
Thinking of you always, Kerri. As amazingly difficult as this all has been, I hear you really trying to listen to your heart and know that there you will find the answers that you and Kai need. Sending you both lots and lots and lots of love, and hoping that each moment brings you more and more peace. Love, Al
Every time I read an update, I somehow still find joy in your words. Although the absolute love is still present, I hear an extreme sadness creeping in that echoes of shadows of this dark time. My heart is breaking for you. I pray that you do what will give you and Kai the most peace, and as you say – that may be going home together. Sending love to all of you and always praying for no pain for Kai and mercy for you.
Love the picture of Kai looking right at the camera! How beautiful and precious he is! Always praying for Kai, you and your family.
Maybe Kai is waiting to go home ❤ I pray every night for a miracle for Kai. Hes a beautiful precious boy who has touched many many lives. I met him for a brief few minutes at Childrens with you & grandma. Thoughts & prayers for you & your family. Love, Mary Schoolcraft (Maddox grandma)
Glorious Father….You are loving & wonderful. If it is Your will, please heal this precious child You have blessed this family with. Only You can provide this wonderful miracle. I have faith that You will continue to heal this precious boy…please take away all the disease & illness ravaging this young child. Please heal him in the miraculous way that only You can do. Amen!
You are so amazingly and strong Kerri! Kai is such a strong litlle one,I am so impress with all your words.I only think that i can say now is for the both of you more strongness, prayers and peace in you heart! God bless you!
I have never had the pleasure of meeting you and your adorable boy BUT you have touched my heart. I can’t begin to imagine what you as a mother are going through so i won’t even try… just hold him tight and I will do the only thing that I know how..Pray I am praying for you and your dollface and your family.. may you someday have peace as you do all the days that you cuddle with the beautiful baby boy. I am thankful to know people that are helping you and your family.. there are good people in this world. God Bless and I will pray my heart out!!!
My wife and my thoughts and prayers are with you and Kai. We can’t imagine what your going through. I am a friend of your Dads and he has kept me posted on your journey. A road no mother should have to travel. Please know we are thinking of you and Kai.
Smile always,
David and Sonia.