A Full Day and more updates

Just wanted to update.  It's probably obvious that I didn't go on the trip to the conference.  I really wanted to go but with all of the problems that we had with the feeding pump/tube on Thur night, it's probably best that we were home.  I wouldn't have wanted to deal with all of that in an unfamiliar environment.  I had prayed and asked God to work things out with the room if it was His intent that we should go and I do believe that staying home was best. 

Here is a little bit of what has been going on the last couple of days.  Thursday morning we had an appointment with the feeding therapist.  Eliana did better for her then (was really fussy the first time we saw her a couple of weeks ago).  After watching her, she didn't think that she exhibited signs of reflux.  She did think that at times the flow of liquid was too much for her and tried to work on slowing that down by tipping the bottle at a different angle.  (more horizontal)  I'm to work on feeding that way in addition to stimulating the muscles on her face and in her mouth.  We'll see if that helps any.  She also mentioned that she didn't think we were in a critical time frame or hurry for the Gtube. 

We (Eliana and I)  both took a long and much needed nap together on Thur afternoon prior to her physical therapist coming over.  She worked hard and is continuing to improve.  I think I mentioned last month about the scale she was being measured on and how she was already behind.  Well, she looked at the scale again and Eliana has improved 6 weeks worth in the last 4 weeks.  Yippee!!!  Way to go sweet girl!  The PT was very encouraging about her progress.

Friday, Eliana's ped called to see how she was doing.  (Isn't that so nice?!)  She had talked with a couple of therapists that had seen Eliana.  She wanted to try Eliana on prevacid to see if it helped any at all.  It would help if she has reflux or any other damage in her throat.  Even though we both think she has no signs of reflux, this is just a precaution to see if it can help at all.  I can see how she could have damage from the tube being inserted so many times so I'm glad to try something that might help.  We talked for awhile about how things were going and about our options for the future.  We are both thinking that the Gtube surgery is likely to be happening.  She wants me to call her on Monday to update on the cardiology appointment and on the prevacid.  On the prevacid, it is a dissolving tablet that I'm having a hard time getting to dissolve completely.  I've tried placing it in water and pouring water over it.  I am concerned that if it isn't dissolving completely that it could end up clogging her tube.  (I inject the medecine into her feeding tube.)  I would love any tips if anyone has them.

Saturday, Eliana and I venture out to lunch to celebrate a friend's birthday.  It was our first social outing with the feeding pump.  I thought it seemed like a good place to be with other Mommies and nobody else to have to watch out or care for while I was out.  It was a fun time with the girls.  Eliana didn't like being in the restaurant so much as she was a little fussy and wouldn't eat at all.  She did sleep some while being held.  Later while we were looking at books in a small homeschool store, she took a bottle and ate about half of it (2 ounces).  I was encouraged to see her improvement.  Tonight we had friends over to give out awards for our Keepers of the Faith club.  All in all, a busy and fun day!  A little much for Eliana, but it was good to see what it takes to go out and about. 

We are going to try to go to church tomorrow for the first time since Eliana was born.  I'm guessing it may be a hard and/or emotional time for me.  I'm not sure why I think that - but I do. 

I appreciate all of the sweet comments that many of you have left and I'm going to try to respond to them.  I continue to feel so very behind on so many things - especially thank yous.  I was thinking tonight of a very thoughtful gift from two gals Roger works with that was given to me just before Eliana's surgery.  It was a bag with a couple of magazines, mints, chocolate, lotion, kleenexes and gum to take to the hospital.  So sweet to think of the details of what I might need while I was in the hospital!  (If you are reading this - thank you Martha and Starla!)  I have so many people to thank!!!  If you are reading this and are  one of those sweet people - thank you!  I do intend to write notes, but it probably will still take me awhile.  It doesn't reflect my gratitude however on the many precious gestures and gifts with which people have blessed us.

It's late and I'm heading to bed.  Will work on updating more tomorrow - maybe with a bracelet update and some photos.

With love,

Leslie

 ETA:  Thank you Karen for posting on the T21 board about our feeding tube problems - and to the gals that responded to me here!   I appreciate your help and encouragment so much!!!  Will try to respond more to you tomorrow.  It's much too late here (2:45am) and I'm going to sleep now.