Family Time!

We had a long day today and it started out  sad for our sweet girl :( 
Ivy's veins are just non existent right now and after many pokes to get an IV in, they just don't last but a few hours! So she was stuck at 11 last night, again at 2 am and it went on until it was decided today that they will need to take her for a new picc line. Poor baby. I wish they could just wait until Wednesday and do it when she is under and going in for her surgery. She had a very long echo, an ultra sound, blood work, urine tests, dressing changes and so forth. She also has bleeding wounds where they removed the dressing from her cath sites! I was so disappointed when I saw this so I spoke with our ever so sweet nurses this afternoon and asked that we please put a sticker on Ivy's pajamas stating that she is extra sensitive and needs adhesive remover and extra care used every single time tape is removed from her. The nurse who came in to change her dressings this afternoon was so upset by the infected looking wounds that she has from the tape that she made stickers for everything. Her bed has a big sign, and it is in her charts and in the computers as well.  I hope this puts a stop to the unnecessary owies this poor baby has to deal with. 
The nurses are all so so sweet. And they are so good about the family all being here. 
Ivy was so sad and stoic all of yesterday and today. But late this afternoon we got her in the wagon and the entire family was a parade round and round the halls for an hour trying to cheer our girl up! It worked. She came out of her shell a tiny bit. She started talking, finally. She cracked some smiles and even some giggles. She ate and ate and ate and ate. And at a random moment while on her wagon ride she said, "Donut!......Me!!" And raised her hand! It was so stinkin cute!! As if someone had said, who wants a donut? I think she was tired of waiting for someone to ask, so she just did it herself! Needless to say, her daddy went running right to the store in search of a donut for the little princess! By the end of the day, even though she was still very far from being herself, she knew she was surrounded by people who are absolutely crazy in love with her! She is just so darned scared. She always has the saddest pouty face and scared eyes. She doesn't cry at all, just gets a pouty lip and tears! So heart breaking. I wish I had stories to tell you of all the fun we had today but I'm not going to sugar coat this into some fantasy. She's sad and scared and we are just here doing exactly what we came here to do. Surrounding her with love and familiar faces and lots and lots of kisses! That in itself has been a gift for us! A treat to spend our days with such a precious gem! JOY
 Love from Boston!