First of all, I would like to thank those of you who commented or emailed me regarding Lily. Your care and concerns are so appreciated!
We got the results of the abdomen scan, and Lily is Wilms tumors free! Unfortunately, it looks as if the sludge that was in her gall bladder has turned into gall stones. A referral to the GI is in place, and hopefully, we'll just be able to leave them alone, that they won't clog any ducts and have to be removed.
This weekend was such a contrast to last weekend! Dave and I have been considering going up to Chicago for the SOFT conference, but it turns out that his school will change to a year-round schedule next year, and school will begin the week before the conference. We've decided, instead, to use the money we were putting aside for the conference to go to birthday parties of children with Trisomy 18. Unfortunately, we can't go to all of them, and we're limiting our distance to a certain radius in the southeast, but still, it's the best we can do to meet with other families.
This weekend, we went to one of those birthday parties. Rebekah, who turned two last week, also lives in South Carolina. (You can read more about Rebekah at her blog. Her mom is a storehouse of information!) We didn't just see Rebekah, though. We saw Joey (2 in June) (Her blog), Dawson (5) (He has a blog, too!), and Kaylen (10), as well! It was amazing to be in the presence of that many children with T-18 and their families. So many times, I feel as though there's this disconnect between me and other people, but this weekend wasn't like that. There was this immediate connection, and it was so refreshing to hear stories and learn more about these children who have defied that horrid death sentence "incompatible with life." (I mean, hey! Kaylen is 10 years old!) Although I've heard from other moms about their child having vomiting episodes, I found out that these other children go through it too--things like that! In the flesh!
It's finding out things such as this that makes me feel less alone on this journey.
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I haven't checked in for a long time, but wanted to let you know that I can relate to this post. I felt so alone when my little guy was here because his Chromosomal issue was one of a kind. I think the idea of going to birthday parties is truly amazing. Your family is an inspiration <3
ReplyDeleteSo glad to hear little precious Lily is Wilms tumors free... and that you are all able to breath with relief! Hope the gall stones aren't too serious, and require no op. Thinking of you both as always
ReplyDeleteMuch love
Taryn
What a beautiful post!! So glad that you had a great trip to Rebekah's 2nd birthday! What a wonderful opportunity for all of you to be surrounded by others that "truly know what you're experiencing"!!! Its amazing how those connections have been made. I'm glad that Lily is tumor free and hope and pray that the Gall stones don't require surgery! Take Care and as always sending many hugs and prayers
ReplyDeleteCindy
Jordan's mom
So thankful for Lily's good report. So touched by your plan to attend birthday parties of Trisomy 18 children. Such a beautiful mission on so many levels. Our girl is going to be two-years-old in just three days!!! How incredibly wonderful is our God!
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