Hello friends. It has been too long - and there is a lot to share with all of you about Elida. I will get the news about her muscle biopsy out of the way, and move on. The biopsy did in fact show that Elida has a muscle disorder. While this news did not come as a shock to anyone, it was devastating, none the less, for Seth and I, along with our families, to hear. It has taken a few weeks for the news to sink in, and for us to adjust around the fact that we now have a general diagnosis. We do not know what kind of disorder it is - in fact, the biopsy came back as "inconclusive"... again, the doctors are encouraging us to dig deeper for further understanding, and so the biopsy is now in Iowa for further testing.
This place (of waiting) continues to feel very uncomfortable - especially because we are struggling a bit with how further information will be helpful for us. Without getting into it too much - the long and short of it is that there is a huge range of disorders that Elida might have - but no matter which one- we are told that we will treat her symptoms the same. We are going to do PT and OT and love the goodness out of our sweet girl, no matter what. I, in particular, would like to avoid the emotional set back of a detailed diagnosis that could leave us feeling hopeless. I guess it is hard to see the use in what I expect could be a terrifically difficult burden of knowledge to bear - especially because right now, she continues to show us that she is capable of getting stronger every day.
In that, Elida is doing just SUPER! I wish we could make tiny Elida's for all of you to have. I mean it, she is just the most delightful little baby. I get the feeling that she is so happy to be here in this world with us. Though her core body strength is still delayed, the tightness in her muscles (especially in her arms) has almost all but disappeared. She waves her arms around and kicks her legs straight up in the air. In the last few days she has begun to twist her hips... the beginning of her will to flip herself over. It is quite unbelievable for us to observe. Again, we are truly in awe of Elida, all of the time.
I think these photos sum it up... in more ways than not, she is a very normal 3 and a half month old. Exploring her world with her fingers and mouth, beginning to chat it up with coos and ahhs, loving picture books and hearing stories, sleeping through the night... (lucky us, right?)
A few other things, Elida has been scheduled for a re-swallow study in September, we are all very excited and hopeful that she might be able to begin some (small) oral feedings if this study goes well. Keep praying! Also, we ended up postponing her surgery to get her hip cast. We all wanted to avoid the complications that happened during her last surgery AND her hips are healing very slowly on their own. So we are keeping her in her hip brace at night, and crossing our fingers that the casting can be avoided all together. Again, we keep praying!
I know that was a lot to fill you in on. It is crazy being back at work - good, but crazy. I will try to update more regularly. It is very nice to keep you all in the journey with us.
Love and Blessings to you.
