I have a couple of praises regarding feeding - yes, feeding! Last night Eliana ate almost 3 ounces in one feeding! It has been a long time since she has done this well. We are doing good on some days to get in ONE ounce in the entire day! The feeding took a long time, but she was comfortable and willing so we just kept at it. It made me wonder what it is that keeps her from doing this on a more regular basis. I could pinpoint nothing different. I am encouraged that she is able. I am hoping that getting the NG tube removed will help her out. I do think that is the source of much of our problems.
Speaking of removing the NG - Eliana did that again today during a feeding. She ate about one ounce - really good for her now - then had an ounce via the tube before pulling it. I tried the bottle and she took another ounce. Yippee!!! I was excited to see this amount.
Eliana's skin is looking badly again. She has taken to rubbing her face often - on her hand, against my shoulder when I'm holding her and against the blanket when she is on her tummy. This causes the tape to come off - or part of it - and typically requires me to remove the rest of the tape and redo it. Her skin is looking like it has a couple of times in the past. I decided to leave the tube out for a couple of feedings to give her face a break. If you think of her, please pray for healing for her cheeks.
During the break we visited the pediatrician. We were welcomed by several of the staff. They knew us by name (I was surprised by that) and commented on how they hadn't seen us in a while. (It's been 1 month.) It does feel like a while and yet it's only been a month! I've always enjoyed being known by the staff at my OB/midwife's office as I'm in there weekly (or more) for most of my pregnancy. I've never been one to visit the ped office much at all though. There are many, many things that I've been very comfortable doing with my other children that I'm not able to do with Eliana. It has challenged me in many ways - some of them ways I didn't want to be challenged. I am thankful for the things I'm learning though and know that Eliana is a precious gift to our family and many others too.
Dr L was pleased with how Eliana is doing. With the exception of feeding she is really quite healthy and progressing well. She had several things to share that were encouraging. (She is very encouraging to me and I think that this is one of the reasons that I really enjoy going to the ped.)
- Ears - When she peeked into her ears, she commented on the first ear that she could see good reflection of light. (This is a good thing!) This was the left ear - the one that has repeatedly failed the hearing test. Thank you God! The other ear looked good as well.
- Muscle tone - She commented that while Eliana does have low muscle tone that it really isn't that bad. She is doing things well like keeping her hands in mid-line (in front of her body) and rolling over. This will be a great blessing to her for many things.
- Height and weight - Eliana weighs 16 lb and 6 oz and is 26" tall. In looking at the growth charts, Eliana is plotted on two different charts. There is a chart used by most children and on that one she falls at about 55% in both catagories! On the chart for children with Down syndrome she falls at 80% for height and 90% for weight. Dr. L was quite pleased and said that this is something that isn't seen all too often.
Thank you God for these encouragments. It is so comforting to hear encouraging words from others. Be it something small or something big - it is just a blessing. I want to encourage you to take time to share something positive with the people you love, friends, family and even strangers. We can all use a little more blessing in our lives!
We had to replace Eliana's tube tonight. For the first time, she seemed to know what was coming. To begin the process I wrap Eliana in a blanket to keep her arms and legs from thrashing about. As I did this she started shaking her head "no" - over and over again. She didn't fuss, just kept shaking her head back and forth. It did go in, but it just isn't ever easy any more. I'm looking forward to knowing that I've done this for the last time.
I have more to share on the upcoming week as I've scheduled a variety of things. It will have to wait though as it is late and my sister and her family are coming for a visit tomorrow. :-)
With love,
Leslie
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