Monday - I will be calling to talk with the surgical nurse. I will be sharing that the ped does want the swallow study done. Hopefully we will be able to schedule that tomorrow as well as any other pre-op work that needs to be done. I have a lot of questions about the testing and what it involves. One of the feeding tube loops that I'm on has given me some information about what to expect with the various tests. If anyone has other suggestions on questions I should be asking - please share them!
Tuesday - The cousins will be returning from the beach. They left this morning to visit there for a couple of days. My children commented that it wasn't hard to say good-bye this time since we will be seeing them again so soon. They have had a great time together! I am hoping to share some pictures maybe tomorrow. I really need to learn to download photos.
Some of the fun things that they have done so far include going to the library, going on a geocache, shopping, swimming, water balloon fight, kickball, watching a movie and beading bracelets. Oh and how can I forget - a "Cousins party". They all helped to decorate a portion of two cakes with frosting and sprinkles. Everyone got to blow out a candle on his/her cake and open a small gift. My sweet SIL arranged all of this and the kids had a blast! Eliana and I haven't been involved in much of the activities due to the feeding pump limiting our time out of the house, but we have enjoyed having them here!
Wednesday - Hmmm ... what are we going to do to celebrate the 4th?! I don't know. We typically spend this time in the mountains with my parents and have our own traditions that we enjoy there. We need to make some plans though to enjoy the day here!
Thursday - We will say good-bye to the Bakewells. It will be hard to see them go. Daniel cried the last time he had to say good-bye to his Aunt Karen. It has been wonderful having them here to visit! We sure wish that they lived closer.
Eliana will have physical therapy in the late morning. Hopefully this will work better with her sleep schedule (or lack thereof).
Friday - Eliana has an appointment with her ped. It's been a month and we are looking forward to seeing her. We've talked on the phone several times - and emailed some too. She really is a blessing. We'll be talking about the upcoming surgery. Unfortunately, her ped will be out of the country when Eliana is scheduled to have her surgery. Not sure there is any way around this though.
Saturday - No plans ... yet.
Sunday - Meeting with some friends to help plan field trips for our homeschool group for the upcoming year. We like to plan everything out a year at time so that we can plan and then just enjoy the year. We schedule field trips to coordinate with our curriculum in some way. It's a wonderful group and we are so thankful to be a part of it!!! This sweet group of friends has been a tremendous support to me and my family!
I have more to write - and will try to write more tomorrow and add some photos as well. For now, it's late (2am) and Eliana is finishing her last feeding. Going to church (or anywhere) always throws off her schedule. As I was listening to my friend Rebecca talk about something in her home tonight, I realized that I had not been in anyones home, except Catherines next door, in over 6 months. I know that we really haven't gone anywhere, but the realization just hits me some times in different and odd ways. This has been an isolating time in many ways. I am thankful for the friends and family that have come to us - and for the many dear people that I'm connected with via the web! (I wish I had time to write all of you!)
I have two additional prayer requests:
Please pray that Eliana would not have reflux. We don't think that she does, and it would be nice to have that confirmed.
Please pray that her intestines would be properly formed and not twisted in any way.
Thank you dear friends!
With love,
Leslie
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Praying for your dear family, Leslie, and sending big hugs!
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Thank you sweet friend! I appreciate your prayers, encouragment and love so very much. I'm thankful to call you my friend!
ReplyDeleteWith love,
Leslie
My friend sent me a link to your site here. My son is 10 weeks old, and has had an NG tube since day 5. He has Down's and will have heart surgery in the fall for his AV canal defect. He pulls his tube at least once a week, i got a delivery of a box full of size 8 French tubes instead of size 5, and its always a dreadful and usually unsuccessful event when we try to draw blood for tests on my boy.
ReplyDeleteReading some of your entries is like reading from my own diary.Tyler is also a "Duke baby", and the doctors and staff have been wonderful.
Thank you for sharing your experiences so that moms in similar situations can learn from you, and gain hope from Eliana's successes.
I will keep you and your whole family in my prayers!