On Monday (July 9) at 10:30am Eliana will be having an Upper GI to check for any malformation of her intestines. None of us think that there are any problems there as there is no evidence to indicate problems. The surgeon needs to know this prior to surgery as he would try to fix any additional problems while he was "in". As best as I understand she will have some sort of liquid/formula with barium in it put in to her tube. They will use an x-ray to see how the fluid travels through her body.
She will also be having a swallow study done. This also involves barium in her formula, but clearly she will need to swallow this. There will be a feeding therapist there to help her, though it isn't "her" feeding therapist. I am praying that she would eat enough at that point to give them the information needed to see her swallow. Any problems with reflux (not making it completely to her stomach and/or coming back up which would irritate her esophagus) or aspiration (going down into her lungs) should be able to be detected. Again, we see no signs of this outwardly, but are checking to be sure. She is currently taking Prevacid to help in case she is having reflux. If there are no signs of this on Monday she will stop taking this med.
She will need additional pre-operative work done next week. I'm not sure when all of that will be done. I was asked if we wanted to do all of this in one day, but that seems like a lot for Eliana. I'm guessing she isn't going to be too happy about the GI/swallow and to add blood draws and a sedated echo (to check her heart) would be a lot in one day. Since we live close to the hospital, coming another day isn't a huge problem for us. We are still tentatively scheduled for Tues 17 July for surger. This might change depending on what the pre-op testing shows.
Hmmm ... this is kind of a boring, factual entry isn't it?! I appreciate all of the encouragment ya'll have given me about the last entry on "the bow". An interesting aside from all that I've been through with Eliana has been this writing. I've never been much of a writer. I've kept sporadic diaries or journals, but have never been consistent. I didn't find the time to do it and didn't really "get" why people would want to blog either. I just didn't understand. The one area in which I have written is in my scrapbooks. I do a lot of journalling there as I do love having the whole story to go with the pictures.
Also in terms of the ability to write, I've never had any confidence about my skills. I don't remember much about writing in high school. I certainly don't remember ever being praised for anything I've written. My senior year I took some test (don't remember what it was) that was given to people in the honors English class. I wasn't in the class and am not sure why I was allowed to take it. Anyway I scored well enough on the test to be able to skip the freshman English/writing class in college. My score wasn't "high" - it was just high enough to exempt out of the class. I always felt that I had "gotten away" with something. That somehow I had tricked the system. This led to me having great doubts about my ability to communicate through the written word. I've since thought that while I can typically communicate clearly that my writing is just that - clear but not really any good.
Now, reading that last paragraph maybe I'm right. LOL My grammar skills aren't the best as I really don't understand the technicalities behind all of the parts of speech. When I write I just try to put my feelings down on paper (or screen). I'm not trying to write anything amazing, but just to share my heart.
I'm not sure I explain what having this blog has done for me. It has brought me comfort and hope in the forms of prayers and encouragment from so many people. I've gained information on a variety of medical issues that we are facing. I've also gained some hope in my ability to share my thoughts and feelings. Just writing through my emotions has helped me. It has been good to get everything out. I believe too that being able to look back at this journey will be something I treasure. The details that I might have forgotten are saved. I'm thankful for this forum and the opportunity to share. I'm thankful for you dear friends that care about Eliana and our family.
My heart is full and I am very blessed. Maybe ... maybe one day I'll consider writing a book. That seems pretty far out of my comfort zone though. It would have to be something God really impressed on my heart as I have no idea how to even begin to do that. For now, I am thankful to know that my experiences and emotions as we walk this new path are something that does occasionally serve to encourage and bless those that are sharing it with us. How good is God that He would use me? It humbles and amazes me that He would do that. It encourages me to see how He orchestrates the details in my life and in others so that we can see His hand at work. I'm thankful to know that He loves me and that He uses so many other people to show His love to me every day.
With love,
Leslie
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