Monday, March 7, 2016

Left Hanging

Update 3/10/16: I now have an appointment for March 22!

Complex. There's that word again, uttered by a medical specialist's scheduler.

Four days ago I received a phone call from the geneticist's scheduler. They found something. They want me to come in. They want to photograph Jie Jie then have her leave the room while they tell me all about it. Usually, they like the child to stay in the room and participate in what's going on. They couldn't get me in until late APRIL! I mentioned we have other testing going on that this could affect so they moved the date to April 11. FIVE WEEKS away!

I asked for a phone consultation. Sorry, it's too complex to handle on the phone.

I said I'll read about it first in her medical record. Sorry, they aren't putting it in her record until after they consult with me.

Do they truly think it's okay to do this to people? To mothers?

Meanwhile, Sissy's been having serious behavioral issues. Things escalated shortly after her 17th birthday last November and reached a critical point the week before Christmas. It can't be explained without being very specific and there is an issue of her privacy. More evaluations are being done later this month. It's devastating. Her situation is also being described as complex by many specialists. I'm extremely angry at the people in China who hid/lied about her condition. I'm not alone in this. Other moms with children from the same orphanage have similar situations. Now we are figuring out how to move forward in a positive way.

11 comments:

Lynnea Hameloth said...

Oh my....my heart is so sad for you as I can't imagine not knowing for 5 weeks?!!? That is CRAZY. Sending prayers and a big hug your way. Hang in there.

Candis said...

This is so hard! Telling you that it is complex, but not telling you anything else until April is crazy! That would make me angry as well. I am so sorry for all you are going through and all that your girls are going through. I stand amazed at how well you have handled everything so far. Keep on keeping on!

Jennie said...

You are certainly a wonderful advocate for your beautiful girls. I keep thinking if the girls are still in China, they would be in less positive circumstances. Because of you, the girls will be getting the appropriate diagnoses and will have a better future ~~all in due time. And their diagnoses do not define them ~ they are precious girls. You are an inspiration! I shall pray for patience and courage as you face the many challenges in the bureaucracy.

Karen said...

So sorry to hear they're leaving you in limbo about Jie Jie's diagnosis. I know it's hard not knowing! We're struggling with our 15 year old and there are many days that I think I can't take it anymore. :(
Sending prayers

Anonymous said...

I think I would bug them multiple times a day asking about cancelations as punishment. And who knows maybe you will get a sooner appointment. ;)

Anonymous said...

I'm so sorry! That is awful to wait. We have asked to be put on a cancellation list if dr keeps one. I would call everyday and ask if any cancellations or openings. Not very fair to ask you to wait that long!

sarah said...

I don't have anything to add except I am praying over the whole situation. Telling you it's complex and then having your wait 5 weeks is not 0K. I'm so sorry that is happening

Lisa and Tate said...

I cannot even imagine how hard this must be. You and your sweet family will be in our thoughts and prayers.

Anonymous said...

I saw your update, what an answer to prayer! I will continue to pray for you and Jie Jie as you learn more about her "complex" medical condition. (And of course for Sissy)

Anonymous said...

I've been praying for you and Jie Jie. I sure hope everything is ok!

Joannah said...

I'm so sorry you are dealing with so many complex and heartrending issues. I hope that despite the complexities, that solutions will be available to you and your girls.