Uggg... I just typed a huge thing and lost it all! I'll probably need to do this in parts as it was long and I'm not sure I have time to write it all again.
Eliana is doing well. She is such a delight to our whole family. We think she is adorable - even when she cries. You can see it coming as she starts to stick out her little bottom lip - and I do mean stick it out. It's cute! She did this on the day she was born. My children got a kick out of it and called her "Little Miss Pouty-Face".
Feeding - Eliana is still TUBE FREE!!! It has been over a week now! Yippee!!! I still cry tears of joy when I write or say that - tube-free! It's been a long road. A road I expected to be one of joy and peace as we welcomed a new little one to our family. The road has had moments of joy - but also many more times of trial and difficulty than imagined. Through it all, Eliana has been a delight! We are so very glad she is part of our family! I am thankful too for the many things that I've learned from Eliana. Things I've learned about God, our family and my friends. Things I've learned about love and peace and joy. Things I've learned about patience and trials and prayer. I wouldn't trade these lessons - and wouldn't for a moment trade the joy that Eliana brings to our lives. God was so good to give us this precious girl. He is good all the time.
Back to eating. When Eliana did well for a couple of days, I thought that now was the time to try to go without the tube. She needs to go for several months of not using the tube in order to have it taken out. Each day without using it just seems one step closer to have it out!
There were times when things seemed so far away. I truly believe that the NG tube caused some of her feeding problems. Now, I don't regret having it - we truly had no choice. Thankfully the problems don't appear to be long-term.
I told her feeding therapist today what I was doing. I commented that I had just decided to give it a try - going without. She told me that I needed to keep tabs on her to make sure that she was gaining enough weight (she really hasn't gained much if any - but hasn't lost either). I also need to make sure that she isn't dehydrated (number of wet diapers) or constipated. She shows no signs of either of these things. She is a little plump and very content. And did I mention cute?!
Physical Therapy was also today. And she cried and cried. I wonder if this is typical? Anyone? It's hard work - and she had not had a long enough nap. This happened last week too. I hate seeing her get so upset, but know that she needs to learn these skills. We are working on crawling (she is scooting backwards and needs to learn going forwards) and bearing weight on her legs (she does not want to do this!).
I asked when she was going to measure her development on the scale again (AIMS is what I think it is called). She took it out and began marking and counting points. She gave her 3 "freebies" - things she doesn't think Eliana is going to do but rather skip over. One was pivoting while on her tummy. She doesn't like to be one her stomach unless she is sleeping. I just don't think she will do this. Another was "lounging". This is lying on your side while propped up on one arm or elbow. She is not fond of this at all. I can't remember the third thing.
Anyway, when she counted the points, Eliana is still ON the developmental scale!!! This is for typically developing children and it is exciting to see her gaining and learning at such a good rate - especially considering all she has been through. She is in the bottom percentile and is the equivalent to an 8mo old. (Eliana is 9mo and 3 weeks.) She seems to be motivated to move and learn on her own. I am thankful for all that she is learning.
Fun things - Here are some things that Eliana likes to do.
*Bouncing - she loves it when you are holding her or sitting on edge of the bed. She seems like a little daredevil. (Dare I even say that?!)
*Clapping - She loves to clap her little hands and grin hugely while doing it.
*No - She shakes her head no often. There are times when someone has asked a question and she does it right on cue - and it cracks us up. She likes that too - laughter is a big hit with her.
*Hands - She is still fascinated with her own hands. Sometimes she will catch a glimpse of one of them and just stop and stare at it. She will turn it slowly to look at it from different angles as if admiring the neat thing she has. She also likes other people's hands.
*Sitting up - She moves from laying down to sitting all the time. She is also learning how to get out of the sitting position too. This is currently her favorite way to be though. It gives her a lot more options for what she can see and do.
That's all for now. Still more to post on the FIAR, Isaiah's birthday and the pirate party. Oh, and the list of things "I didn't know". Just not enough hours in the day.
Thanks for your prayers, encouragment and love dear friends.