Thursday, August 30, 2012

UPDATE!!!

   So for those not familiar with the process we don't get updates on our little girl very often. We only get them about every 4 months or so. This was our first one since we received our referral in May. I was told we get pictures and a general well being update. August is update month so we have been "patiently" waiting all month for an update to show up in our email. Yesterday... you know almost the end of the month, basically about as long as you can possibly wait and have it still be referral month. :) We finally got the pictures and update we had been waiting to see. I wish I could post pictures on her because we LOVE her and she is so cute and happy and smiley. She looks like she pretty much is always having fun. It's hard to see her getting bigger and know that it's going to be such a long time before we get to see her.
   We also got her medical update which is important for us since she has some medical issues. I don't think I went into this on the last blog so let me summarize her medical problems. She was born with Sinus Invertus which means her heart is a mirror image of where a normal heart lies in the chest. She is functioning completely fine and that has posed no problems. She is growing right on schedule and is active. The other medical issue is that she was born with one leg that is larger (longer and wider) than her other leg. Her foot on that side is also affected. They think she may have a genetic condition but aren't really sure. She will have some genetic testing done when we finally bring her home. SO on to the update now. She is still doing great she is walking and running so her leg doesn't seem to bother her that much. Which honestly amazes me because she's got to be very off balance but she's a fighter and figured out how to walk anyway. She finally got an x-ray and they discovered her bone is bigger on that side and that is contributing to the problem. She also has some extra soft tissue which is expected with the condition. She was supposed to have an MRI on the 8/28 to decide the course for surgery. That is where our update ended. So in 4 months when we get our next update she could have already had surgery or she could be on the list for surgery or they could have decided after the MRI that surgery is not possible right now. This is the hardest part for me. I have NO control or say in what medical procedures are being performed on her right now. Being a nurse this is not something I am used to. I have lots of say in my children's healthcare and I know exactly what is going on and what the plan is at the time. I also don't get to comfort her or be a part of her care. I don't even get to know how she is doing the next day. I just have to keep praying and know that she is God's child before she is mine and he knows what is best. Even after typing that though it sounds way better than it actually feels. I would say it's a huge step of faith but it's not like we have any other choice but to trust that God has this under his control. 
  So we now wait "patiently" for the next update... in 4 months. I have just learned those updates are a mixed blessing. It's so reassuring to get pictures and to hear from someone who has actually seen our child and played with her but at the same time it's so hard to be so far away. I'm not sure I realized just how hard it would be to get the update while we were waiting. That was not something I was prepared for but as I'm learning there isn't much I am prepared for in this journey.

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