No new photos

I'm sure you have probably noticed the shortage in Ashley Kate photographs that have been or shall I say not been posted lately. I am struggling with her appearance this week. She just doesn't look like herself. We had hoped and had been told to expect her facial swelling to start to disappear within a week or so of treatment for her blood clot issue, but that has not been the case. To be quite honest she looks awful! Her entire face is puffy and swollen, but the left side continues to cause us much concern. It has bad days and then it has worse days. Today has been one of the worse days. She woke up with the left eye swollen shut once again and has struggled with a very heavy upper eye lid that keeps her from opening her eye. She looks miserable.

I have been trying and trying to get a follow up vascular ultra sound scheduled. Our discharge orders requested one at 2 weeks, 1 month, and again at 2 months then a re-evaluation of her condition would be made a we would decide to continue coumidin or not. When I say I have been trying that is all that has happened. For some reason this is proving to be difficult and with her lack of improvement in the swelling department is is even more difficult as I wonder if the clot is getting bigger instead of smaller. Today's attempts at scheduling this appointment just reduced me to tears. I don't know why. Maybe it was because the pediatric surgeon I was told to follow up with wouldn't see her. Maybe it was because I was told he was sending her to a vascular surgeon. Maybe it was because he doesn't want to give the referral to the doctor he wants her to see before he will see her. Maybe it was because they aren't even sure if this new vascular doctor will even accept her as a patient? Maybe it was because I am going to have to try and get her pediatrician to make a referral to a doctor he doesn't need her to see and has no idea that she needs to see. Maybe its because this new doctor is in yet another hospital making that 8 that she will have been seen in during her 2 years of life. Maybe it was because I just wanted to scream out, "Enough already! Let her be a little girl!" How dare me, right? Maybe I am just tired of the run around and the fight and I am just wishing that getting to this doctor and that doctor could be "easier done than said" rather than "easier said than done".

Why I shared all that is beyond me, but it came tumbling out. I guess because I wanted to explain why I'm not posting pictures this week. Honestly our sweet Ashley's face is frightening. Her eyes are puffy and squinty. Dave thinks that once she does begin talking she will speak Chinese because she spends the majority of her life looking through squinted eyes. That makes me giggle. Can you just imagine waiting for her to speak for this long and then she does and we don't have a clue what she is saying to us? Her cheeks are huge! It looks as though she is storing nuts for the winter. There is no bridge to her nose. Its just huge. It's really hard for me to see the expressions on people's faces when they see her. I know they are wondering what in the world we are feeding this child. The answer? Nothing. She doesn't eat.

Some days I wish there was a way I could hang a sign around our necks explaining to the world what this child has lived through and what a miracle she is. Perhaps it would keep them from staring? Perhaps not.

Anyway, she is still beautiful its just not the same beauty you are used to seeing and so for now I'm not sharing her photographs. The whole blood clot, swelling, lack of much needed appointments on our schedule is weighing heavy on my heart and I don't really know what else to do. I just pray that somehow it will all work out and she will be ok.

Edited: I'm laughing through my tears as Dave just walked in and having no idea what I typed in this post said to me as he leaned over in Ashley Kate's crib," We have the best of both worlds. You originally wanted to adopt a baby girl from China and I wanted to adopt locally. Look what we got!" He then proceeded to do a traditional Chinese bow into the crib and officially kiss "Miss Ashley Ming Li Adams" good night. I love this guy and I love what God has done in the life of our family.