Baby Steps

Let me start with some good news. The MRI came back that all of the tumor was removed! This is AWESOME! Kayla is making slow progress. She is now off of her oxygen and breathing on her own. She is in and out of sleep. I can now see the positive side of medically induced coma healing. When she is awake, it's really sad and hard to watch. All of her tubes are bothering her a lot. Kayla continues to make us laugh even at the toughest moments. She will wake up and mumble something quietly. When I jump up to say, "what sweetie?" she screams out what ever it is she was trying to say. She is obviously frustrated that we aren't telepathically connected. Today she shouted out at us as we were talking to the doctor, "BE QUIET!!! STOP WHISPERING!!!!!" Then, "Daddy is talking too much. Always talking too much!"  It was so hard to laugh quietly at that one.

That leads me to my next update. We had an OT (occupational therapist) do a swallow clearance test on her to see if she was ready to start eating yet. Unfortunately, part of the brain where she had her tumor was the part that controls the ability to feel when you need to cough or swallow... (and speech and balance).  We aren't sure about her balance yet because obviously she hasn't gotten out of bed yet. Her speech luckily is great though! They don't feel that she is quite ready to eat food on her own as of yet. This will change soon.  For now, they have decided that the best way to get Kayla some nutrition is through a NG tube. (a small tube that goes in her nose and feeds to her tummy) We still are waiting on clearance from the doctor as to if the x-ray is cleared and she can start getting food. She does complain a LOT when she is awake about being hungry. She hasn't eaten in 2 days. Her pain is being managed as best as it can be. I know she will be so much more comfortable with a satisfied belly.

Donna (Kayla's God mommy and my best friend for over 30 years) came up from LA to be here with us through the surgery and all the critical stages following. Her strength and knowledge in the medical field as an RN have been such a blessing to us as you can imagine. When they are describing what they want to do next to her we just glance at Donna to see if she is smiling and nodding. If she has a worried look in her eye, we quickly stop and nothing happens until OUR team is happy. It's been such a huge help to us. The staff in the PICU is allowing Donna to stay in there with us during the day which is so awesome. Actually, I think "most" of the nurses we have had, love her! A few are trying to get her to move here and get a job at UCSF! Even at one point today, Kayla was crying out for her asking if she was still here. It's no wonder... she has been a HUGE help in all the critical (and painful things) in this process. Like helping to gently roll her over and reposition her. It's so nice to have her expertise in making sure our baby is always comfortable in a time when NOTHING is comfortable.


Denny is a trooper. He won't leave her side. Donna and I make him shower, take breaks and get naps. Today she stayed with Kayla while Denny and I had lunch and then dinner later alone. So, no one needs to worry about us taking care of ourselves. We are doing great on that end. It's been the perfect team.

On a serious note. Since all of you are asking ways to help, this guy:

 NEEDS SOCKS!!!!!!!!                       BADLY!!!!!!!!!!!

We are taking up a new charity collection for socks for this amazing dad. He is a size 13. He prefers ankle socks. He isn't picky about the color. He just prefers that they don't have holes in them. In honor of Kayla we are secretly requesting "pink or purple" or socks of color. You should see the toes. I am sparing you the details on that end. It's sad. Really really sad.

Anthony is doing awesome and in sleep over heaven with is girlfriend Amanda! I can't thank my friends enough for keeping things so normal for him. That gives us strength and power.

Tomorrow we expect that Kayla will continue to heal... her tube feedings will help her to get stronger! She will become more and more like the Kayla we had 2 days ago. Thank you all for continuing your support in every way. My favorite quotes right now are:

What is "strong"? 
                               What is "normal"?  
                                    and   KNOWLEDGE IS POWER!!!!