Kai’s biopsy results came back, everything looks normal. The team  is looking at genetics now for answers, but those tests could take months. I want to avoid coming back in and out of the hospital, especially for many more months. So, I’m hunting down Kai’s doctors. Wednesday happens to be tumor board day- So most doctors are present in the hospital. 
#kaican

#gogold 


#medicalmystery 


#fightforacure (at Building Hope- Seattle Children’s New Building)

Kai’s biopsy results came back, everything looks normal. The team is looking at genetics now for answers, but those tests could take months. I want to avoid coming back in and out of the hospital, especially for many more months. So, I’m hunting down Kai’s doctors. Wednesday happens to be tumor board day- So most doctors are present in the hospital.
#kaican

#gogold


#medicalmystery


#fightforacure (at Building Hope- Seattle Children’s New Building)

Kai has always had this perfect little cowlick that I call a coca cola cowlick because it’s just perfect, like the perfect hairdos in the 1950s Coke ads. I’m starting to see her little coca cola cowlick come back! So precious #heartmelting 💁 (at Seattle Children’s Hospital)

Kai has always had this perfect little cowlick that I call a coca cola cowlick because it’s just perfect, like the perfect hairdos in the 1950s Coke ads. I’m starting to see her little coca cola cowlick come back! So precious #heartmelting 💁 (at Seattle Children’s Hospital)

Kai was grinding her teeth all night, per usual. But I was starting to worry that she wasn’t going to get any sleep again. Then about 2am, she suddenly began to twist and scream. She was twisting so much she was rolling over onto her face - Which is saying a lot since she is nearly completely paralyzed. She was grabbing at her face and eye again. Narcotics didn’t work. Her heart rate was too fast to be read. Her voice was straining from screaming. Rapid Response Team was called, no one could figure out what to do to help her. After six hours of the worst pain fit I have ever seen Kai experience; five hours of doctors, nurses and myself taking turns rocking her; morphine, Ativan, OxyContin, Benadryl and bolus fluids; & taking her off pedialite and putting her back on TPN 😞- Kai finally fell asleep. I was so tired, I laid down and fell asleep right away, I don’t even remember all the medical staff clearing out of our room. I don’t know how Kai isn’t sleeping right now- But we are working on her right hand movement right now. She’s babbling away, as if she’s telling me what happened last night and just trying to have some small chat. 

Pup, you amaze me beyond belief. 

#kaican #gogold #fightforacure #kaicanmovemountains #atrt #childhoodcancer  (at Building Hope- Seattle Children’s New Building)

Kai was grinding her teeth all night, per usual. But I was starting to worry that she wasn’t going to get any sleep again. Then about 2am, she suddenly began to twist and scream. She was twisting so much she was rolling over onto her face - Which is saying a lot since she is nearly completely paralyzed. She was grabbing at her face and eye again. Narcotics didn’t work. Her heart rate was too fast to be read. Her voice was straining from screaming. Rapid Response Team was called, no one could figure out what to do to help her. After six hours of the worst pain fit I have ever seen Kai experience; five hours of doctors, nurses and myself taking turns rocking her; morphine, Ativan, OxyContin, Benadryl and bolus fluids; & taking her off pedialite and putting her back on TPN 😞- Kai finally fell asleep. I was so tired, I laid down and fell asleep right away, I don’t even remember all the medical staff clearing out of our room. I don’t know how Kai isn’t sleeping right now- But we are working on her right hand movement right now. She’s babbling away, as if she’s telling me what happened last night and just trying to have some small chat.

Pup, you amaze me beyond belief.

#kaican #gogold #fightforacure #kaicanmovemountains #atrt #childhoodcancer (at Building Hope- Seattle Children’s New Building)

This dittle dittle button nose 💘

Sometimes I stop and ask myself: “What is this life?” But I’d live it all over again. I’d live this life a thousand times over. (Apart from Kai getting being ill, clearly.) Her smile, her victory, her laugh- Well, it’s worth everything to be able to see her triumphs and her happy spirit, it’s worthy of a thousand lifetimes over. 

She did well with Speech and Occupational therapy today. She’s still a bit tired. I’m very proud of her for giving her all. 💪 She’s making progress each day! 

& Kai’s father stopped by. He gave his consent for the saliva swab and gave blood, in case we need that for further testing. Now the genetics team can start to test each one of Kai’s genes. 


#kaican #kaicanmovemountains #gogold #fightforacure #atrt #genetic #warrior  (at Building Hope- Seattle Children’s New Building)

This dittle dittle button nose 💘

Sometimes I stop and ask myself: “What is this life?” But I’d live it all over again. I’d live this life a thousand times over. (Apart from Kai getting being ill, clearly.) Her smile, her victory, her laugh- Well, it’s worth everything to be able to see her triumphs and her happy spirit, it’s worthy of a thousand lifetimes over.

She did well with Speech and Occupational therapy today. She’s still a bit tired. I’m very proud of her for giving her all. 💪 She’s making progress each day!

& Kai’s father stopped by. He gave his consent for the saliva swab and gave blood, in case we need that for further testing. Now the genetics team can start to test each one of Kai’s genes.


#kaican #kaicanmovemountains #gogold #fightforacure #atrt #genetic #warrior (at Building Hope- Seattle Children’s New Building)

Kai has just been all smiles, all day. Her smile is not the smile of the little baby girl she was. It’s the smile of a wise old soul. It makes my heart ache that she has this wise smile of hers, because she has seen so much more in this world that many do not see. But her smile is full of love. And her eyes are still full of wonder. And she’s still my little lady. 


#kaican

Kai has just been all smiles, all day. Her smile is not the smile of the little baby girl she was. It’s the smile of a wise old soul. It makes my heart ache that she has this wise smile of hers, because she has seen so much more in this world that many do not see. But her smile is full of love. And her eyes are still full of wonder. And she’s still my little lady.


#kaican

Sometimes good news is bad news. The opthalmologist stopped by to see Kai and wasn’t able to find anything wrong with her eye. The GI doctor and I just reviewed the photos taken during Kai’s colonoscopy…Everything looks healthy. The GI doctor and I will meet up again on Friday when the results are back from Kai’s colonoscopy biopsy. 

Still a mystery….. 


#gold #fightforacure #kaican  (at Seattle Children’s Hospital)

Sometimes good news is bad news. The opthalmologist stopped by to see Kai and wasn’t able to find anything wrong with her eye. The GI doctor and I just reviewed the photos taken during Kai’s colonoscopy…Everything looks healthy. The GI doctor and I will meet up again on Friday when the results are back from Kai’s colonoscopy biopsy.

Still a mystery…..


#gold #fightforacure #kaican (at Seattle Children’s Hospital)