posts from when kai was in the hospital
Good morning. I realize now that I may be posting so many of these more specific prayer requests, but I hope that’s ok.
During this (which admittedly feels like it’s been forever instead of just a few days) we oftentimes can’t even figure out words to pray so we just say God heal Kai. God heal Kai. Over and over again. I’m a newbie at making prayer request and not sure how to ask and definitely don’t have the right words,
but Kai clearly has this army of people fighting for him so if it’s ok Ill be calling out requests. Last night as I posted the update Kai started moaning again. He has moaned in pain throughout the night except for just a little bit right after he took some pain less. This may be all normal but I humbly ask if you wouldn’t mind praying for whatever is going on and pray that it is just part of the healing and is normal and just send him good thoughts helping him know and feel he is strong through all of the power being poured into him by God. Or just praying simply, God heal Kai, knowing that how that may look and what path it may take is up to Him. Thank you so much. So much.
This afternoon Shawn and I had the awesome, awesome privilege to get to hold our little Kai monkey again. He spent most of the morning still pretty out of it and the focus was on managing his pain. Then around 4:00 or so we asked him if he’d like for Mommy to hold him and he said yes tearfully and reached out. Our nurse helped us unwind the cords and brought Kai to sit with me in the chair. I can not express how thankful I was to be able to hold little Kai again — even if he was giving his signature “stink face”. Kai then asked to eat something and ate an “apple squeezey” and then asked to read books. He even “tickled” my arm. Uncle Colby, Shawn and Maya played a variation of hide’n’seek using the hospital bed, then Kai told me it was my turn to hide and he wanted to sit with Daddy.
Kai stayed upright for the first time in a long time for about an hour. He’s still very weak and his brain, I think, is still just readjusting and recalibrating, but he’s doing really well. The physical therapists, speech therapists, and occupational therapists will be working with him daily to help him recover. And tonight he even asked to watch his favorite videos on YouTube which may or may not include random Russian videos teaching him how to say construction vehicle names in Russian (side note: does any other parent have kids who seem to find THE most random stuff on YouTube?).
They’re keeping the feeding tube in for now and we will see how he does eating tomorrow. And let’s be honest, Kai had his stink face on all day. But I love that stink face. And I can’t imagine the pain he’s feeling right now and not to mention the exhaustion and confusion. He is still having quite a bit of stretches of pain and it hurts our hearts so much hearing him just moan in pain, but he IS having many good moments too, even if brief, and that is definitely something to celebrate and give thanks for.
Thank you God for allowing us this day with Kai and the many victories and advancements he made today and providing all of you to help us. Thank all of YOU who have filled our Facebook feeds, sent text messages, emails, and virtual hugs. Your prayers and support have lifted us, revived us, and given us the life we need to be able to keep pushing forward.
Kai had a very restful night last night – so so thankful for this. He was kept under light sedation through the night and went in for another MRI of his brain this morning to see how everything looked after surgery. Praise the Lord that everything looked exactly how they expected. In the end, they were able to remove approximately 95% of the large tumor in his brain which is amazing.
They’ve sent the tissue from the tumor off for pathology testing and we’re hoping that by mid-week we will have a final diagnosis of what this disease is and can formulate the treatment plan. Right now they’re saying he probably needs a few weeks to recover from the brain surgery and get as much strength as possible before they will start treatment.
We got to see Kai’s eyes today (admittedly he shuts them as tight as possible when the nurses want to look at them, but I’m ok with that, shows me that strong Kai will and tenacity combined with the stubborn resolve that 2 year olds everywhere have perfected). He’s responded to questions (correcting me on the color of Thomas the Train) and telling Shawn to sing his bedtime songs. He even tried to sit up once when I came in the room.
Kai is also on less medications than yesterday and getting nutrients now from a feeding tube. The little guy definitely has some pain but he’s managing it really well and the nurses here are so good to him and us and trying to make him as comfortable as possible.
His recovery will be day by day, but he made great strides today. We just continue to pray for Kai to be healed and that he can rest and recover smoothly.
Thank you again so so much for all of your support. We truly do feel it and we tell Kai how many people are praying for him and thinking of him – when we start talking about all of you and saying the different names he tries to open his eyes, so we know he hears this. So thank you so much from all of us.
I first off want to thank Amanda and Caroline for being the communications team today 🙂 and posting updates for us. Thank you!
I came on here to write an update and the words are failing me and I can’t focus on the status facts, all I can think to write is thank you and share our gratitude – we are so overwhelmed. God has provided us so much….it’s just amazing. Thank you God so much.
I will never be able to express how much we appreciate each one of you……your prayers, connecting us with cancer experts and sharing your networks, researching, traveling to Austin, sitting with us, encouraging us, asking more people to join in our fight, bringing a feast of food, and so many more things. We could not have made it through today without you. Thank you, thank you, thank you. These words can’t express it enough.
We are all in this together,and we have begun the fight.
As the doctor said “we met our goals for the surgery”. They took out what they wanted to and this has improved Kai’s vital signs tremendously – it is so great to hear. And even while under the light sedation he tried to pull out his breathing tube – so he showed he is strong.
He will have a MRI tomorrow morning to confirm what the surgery accomplished and help start formulating the treatmemt plan. Our main focus right now is for him to recover and wake up well from the surgery.
So now, we will try to rest – a long road is ahead, but for today we say thank you, thank you so very much.