A Waiting Game...

     I pestered Dani for a picture of her and the baby and they sent this beautiful shot along (many of you may have seen it on Facebook). I was teasing them that I didn't have any pictures of her, and as is the case with just about EVERY momma I know she joked that of course she is almost always the one taking the pictures. We joked about how moms somehow only end up in pictures with really bad bed head and no make-up.  So, she implored Cliff to take a couple of shots today...such sweet smiles.

     Everything is in a holding pattern right now, no major changes, which is good-- no news is good news for a few days anyway.

     It is now a game of waiting patiently for a liver with the knowledge that weight gain and growth are good for Cordelia and for her post operation recovery, while on the other hand knowing that the current complications with fluid retention could end up leading to another minor operation to "tap" her belly (basically drain it of some of the excess fluid)...something they don't want to do (because it increases the risk for infection) and that each day her current liver deteriorates a little bit more.

     Cliff sounded tired when I spoke to him two nights ago...he said that one of the hardest things is that doctors and nurses come into their room so frequently (even at night) that they only get short spurts of sleep before being awoken again. They actually look forward to the weekends because there are not as many specialists and therapists and interns and social workers coming in to see them...it's just the bare bones hospital staff, which allows them a bit of breathing room. Of course Cliff and Dani would be the first to tell you that all of these people are WONDERFUL and that all of the help and guidance they have gotten has been incredible, I imagine it just gets a little overwhelming at times.

     One of the biggest "normal" challenges right now is that little Miss Cordelia has discovered that she has hands (as all new babies eventually do!), little hands that, combined with a lot of curiosity,  grab and pull and tug on things. As any four month old would do she is using her hands to discover the (very strange!) world around her-- unfortunately she has also discovered things like the feeding tube, which she has pulled out several times and which the nurses then have to reinsert (not so fun).

     They do have a few toys that they dangle in front of her and that she likes to play with. It's funny, in the midst of all of this, it's easy to forget that she is just a sweet little baby who instinctively wants to start doing and developing like babies do...In that regard, they do actually have a physical therapist coming in to work with her on strengthening her next, movement, etc.

     So now they just sit and wait for a liver to become available-- something that could happen anywhere from a couple of weeks to another two to three months. The doctors feel like given her new "transplant score" of 29 (the scale goes up to 60... 29 is a "good" score) that it could be sooner rather than later.

There is just something about a sleeping baby isn't there?! So sweet. 

     Cliff and Dani both had several more examinations and tests and are still being considered "living donors" if the situation reached a point where a liver was immediately necessary, but not available from the transplant bank. In the simplest terms, a "living donor" is an adult who offers to give a partial lobe of their liver to be grafted into the child as a "whole" liver. The incredible thing is that for the adult, the liver regenerates itself over time (though I do believe the adult is placed on medication for the remainder of their life (?) and it is major surgery for them). It's not the ideal option and neither Cliff or Dani are superior matches, but it's a plan B if necessary.

      Dani also has a friend (Joyce) who is being tested to be a living donor-- Joyce, you are an incredible friend and I love your passion and commitment to Dani! If there is any hint of good that I can admit to in all of this it is that I have had the opportunity to see and am blown away by the kindness and generosity of others in the midst of difficult times...that is a blessing.

      On another note, plans for the fundraiser are coming along. We've hit a few "bumps in the road" as far as date and location, but we're working on securing that SOON! We're shooting for a September 29th date and hoping the new location we're looking at can accommodate. I promise to post the information as soon as I have it...We know this is crucial for planning, volunteers, getting donations, etc.

     More information to come soon...I promise!

     In the meantime I asked Cliff what his biggest prayer requests were right now and he said the biggest thing is that Cordelia would remain infection free...this is crucial to her being ready for a transplant...so crucial that if a liver were to become available while a patient has an infection it goes to the next person on the list...we certainly don't want that to happen. Prayers. Prayers. Prayers!

     I would also add that Cliff and Dani need prayers for their own health-- with all of this stress and their lack of sleep, please pray that God would provide them with the strength and health they need to sustain their day to day challenges. That protection would just be poured out over them and that God would be sustaining them in every detail of their days.

    Again, if you'd like to send a card to Cliff, Dani and Cordelia I'm sure it would make there day...send cards addressed to their attention to:

Cincinnati Ronald McDonald House

350 Erkenbrecher Avenue

Cincinnati OH 45229