6 months since transplant

It has been 6 months since transplant! 

In the past few weeks, Clara scared us all with an illness that could only be seen in her lab work, and she recovered quickly. 

My parents came to visit for a glorious 10 days.  We all rejoiced in the normalcy of the visit relative to their previous visits during chemo, PICU, pre/post-transplant, and daily nausea.  We had adventures to Muir Woods, San Francisco, Ridge Winery, and a local restaurant.  We sipped wine every evening in our front courtyard after Clara went to bed.  We grilled fabulous meals or ate miraculous meals concocted from nothingness by my mother when we didn't plan ahead.  Clara showed the beginnings of toddling and learned how to smell flowers and pant like a dog and say "isateht" (It's a tent!) while hiding under a blanket with Mimi and saying "shhh" while placing a finger over Mimi's nose.  She loved to snuggle her Popsy although continued to think him a puppy throughout the trip.  Barking or panting each time we said his name.  She grew up quickly while they were here and created quite a bond with them.  We have had a couple of Skype video calls, and you can tell she remembers them.  She really couldn't care that Alan and I were here as long as they were around.  It is painful that they will be apart for so much of her early life.  Perhaps we will see them even more frequently next year and during much better circumstances.

Their visit gave me quite a break.  Although, I was so fearful it wasn't going to be enough and felt quite a bit of guilt for wishing I could have more.  After they left, we stepped back into our routine well - and it became clear that Clara was ready for a new, big step.  Eating.  She is discovering the world of new flavors and textures and the feeling of satiation of hunger due to her own efforts to eat.  She has shown outward signs of pride in this new independence.  And it seems to be going hand in hand with the physical milestone of standing on her own which she is very close to mastering as well as walking on her own.  She is now standing without the aid of a piece of furniture and will even begin walking and taking a few cautious steps to her next destination.

With all this excitement and the attention these developments require of me, I haven't blogged at all!  But we do have some home videos posted which you can view by clicking on the "Clara's Home Videos" link on the right hand side of the blog anytime. 

We are also very heavily involved in what is called a "Rapid Wean" as we take Clara off of NG tube nutrition and force her to learn hunger and that only she can fix it.  She is doing very well, but we also have to be very careful of dehydration.  As a result, I have developed quite an extensive charting system through excel which I send to the Drs each day.  Each day involves a new tab where I journal a bit about how the day went.  So many of you have expressed interest in how the wean is going and I hope to be able to use that part of her charting to update the blog and keep you all informed.  We cannot wait to have Clara without an NG.  She has had it for 10 of her 15 months of life.  And we are close to being able to pull it out for good.

We love you all and thank you all for the continued support and interest in our amazing daughter.  She is so full of love for life.  We will keep you up to date once we have details on the 6 month bone marrow testing that they did on Wednesday this week.  We should know more in 1 to 2 weeks.