Just an update on all that we have going on this week. It's a busy week - at least the front end of it anyway.
Monday - We go to Duke for an Upper GI and swallow study. Both involve ingesting barium and then having a x-ray to see the flow of the fluid and to determine if there are any problems. There will be a feeding therapist there to help Eliana. I don't really know how long it will take or any more details. I'm hoping that she will eat and that the test will go smoothly and not cause any distress for her.
Tuesday - We have feeding therapy in the morning and then pre-op work for surgery in the afternoon. I'm not sure what all is involved in the pre-op work. I do know that they will be doing blood work which in the past has been difficult for Eliana. I have asked several times if we could schedule the echo (this is an ultrasound of the heart) for this day (so that I don't have to make 3 trips to the hospital for pre-operative work). The gal I've been talking to keeps telling me that the pre-op people (who is that?) will decide if she needs an echo. Even though I've repeatedly told her that Eliana's cardiologist told me that she would need an echo before surgery, this doesn't seem to be enough to get it scheduled. *sigh* (Yes, I felt like I was banging my head against the wall on this one.) I expect this to be a long day between going back and forth between the appointments. Even longer if they decide to do the echo and Eliana needs to be sedated.
Wednesday - Eliana has physical therapy. This is typically something that I enjoy - and Eliana does to a degree though it can be a lot of work for her. I appreciate the encouragment that I hear from the therapist on how well she is doing.
Thursday & Friday - NOTHING! Yippee!!! At the moment we have nothing planned for either day and I love that. We'll probably hang out at home, maybe play with some friends. Several friends have talked about getting together and that sounds like fun!
Today we went to a "Salsa walk" at a friend's neighborhood. As I'm reflecting on going out, I think it was the first time we have been out as a family (except to church) since Eliana was born. I should ask my other family members, but I think it's right. (Eliana and I did join the family at an event for his work, though we weren't there the whole time. This time we left and came home together - though in 2 vehicles since we don't fit in one anymore.)
Typically Eliana and I stay home. It has been too much to work around all of the feeding things. It was a lot of fun. It was nice to be doing something together - and away from home. We brought a bag of chips and then walked around to various houses on the street to sample a wide assortment of salsa. Each person had made salsa from things that they had grown in their garden. Yum! Oh and the varieties from traditional to fruit (strawberry, blueberry, peach, pineapple) to vegetable (cucumber, tomatillo, lime, avocado) were so much fun! So many varieties that I had never before tried. Really a delightful way to spend the evening. One neat surprise was seeing my 5yo go to town on the salsa!!! He ate some of all of them. I think we have just found the way to get veggies into that little man.
We had a fun visit with my sister, bil and niece. It was short (they came yesterday morning) but we were so glad to have them here! The girls had fun playing "spa". They gave my sister and I a spa treatment which included a shoulder massage, hair styling, rubbing lotion into our hands and feet and painting our nails. Oh, and cucumber slices on our eyes. It was a relaxing time. They had so much fun doing this that they asked if they could visit some of the neighbors to offer a treatment to them too. Here's a photo of the girls.
I've been trying to upload a slideshow of 4th of July photos. The slideshow is made, but I can't figure out how to get them into a post. If I can't figure it out in a day or so, then I'll just post the link.
Here are some of our prayer requests:
*That Eliana would swallow willingly for the swallow study. I'm not sure how they get the fluid in if she is uncooperative. Just praying that the results would be clear, that if there are any problems that those would show up and that it would be a quick and painless process.
*Prayers that the person drawing blood would be able to find a vein that will work on the first try so that Eliana does not have to endure repeated pokes.
*For pre-operative work to go smoothly and that all testing that needs to be done can be accomplished on Tuesday.
*Wisdom for all decisions that need to be made regarding surgery. We have a "tentative date" and it will be confirmed after seeing the results of the tests being done this week. Once again we remain in limbo. While it isn't necessarily what I would choose, it isn't so bad either.
*Peace for us as we wait and for our children as they deal with surgery, hospitals and unknowns once again. Also that we would listen to God and all that He has to tell us as we wait, wonder and walk through our days.
Praises:
*Fun time tonight with family and friends! It's been a long time and it was a sweet and simple time. We are used to having many times out together exploring and having fun and I am thankful that we had an opportunity to do something that fit perfectly in between feedings and was close to home too.
*Good health for our family. This is especially nice given how often we have been in and out of doctor offices and the hospital. I'm thankful for Eliana's continued health.
*Family. How fun it has been to have both of our sisters and their families (though we missed our nephew!) here this week! A treat for all of us.
*Friends. We are richly blessed in the friend department. I thank God for the many, many people that have walked with us - both in real life and also via the internet.
As I prepare for the week - with surgery looming once again - I can't help but reflect on how this compares to the last time we were preparing for surgery. Those of us with "cardiac kids" talk about what it is like on "this side of surgery". It is soooo much better on this side! It was so very hard being on the other side. It isn't that this side is easy, but it isn't as scary. Maybe it is easier because we have to learn to trust God, to let go of things we have no control over anyway, and to relax in His love for us. Maybe it is easier when we see our little ones come through an incredibly significant surgery with flying colors (though it unfortunately isn't that easy for everyone). It's probably some of all of this.
I know that no matter what our day holds, that God loves me. He knows where I'm walking and what I'm going to encounter. I pray that I would listen so as not to miss the opportunities He has before me.
Thank you for standing with us dear friends,
Leslie
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