Our Week at a Glance - Aug 27-31

I'm very, very excited about one thing  on our schedule this week - we have NO medical appointments outside of the home!!!  When was the last time this happened?!  I honestly can't remember.  I feel like we have a free week to do with what we want.  I need to make some plans so that we can make the most of our time!

We have no feeding therapy this week as our therapist is on vacation.  Between her vacation and ours we will miss 3 weeks.  At this point though, I'm not too worried about it.  Can I just brag on my littlest girl?  Today (Sunday) she ate 15 ounces!!!  Is that amazing?!  It is the most she has had in one day since she went into heart failure in January.  Oh, happy tears.  It has been a long, long time.  I'm feeling very encouraged and hopeful at this point that she will be able to eat - and get off of this tube.  Please continue to pray for her feeding success. 

Tomorrow (Monday) we are planning to visit a pond.  My oldest and a friend are collecting various samples from the pond to study as part of their chemistry lab.  The rest of the children will be doing some nature studies/pond studies to tie in with their studies.  I'm hoping some of them will want to draw in their nature journals.  I'm also hoping we'll see some interesting things.  In any event, it will be fun to just be out.  We're just planning to go to a small pond near our home.

Tuesday - I've made plans to attend a local Mom's Night Out with the local Down syndrome group.  I'm a little nervous about going.  The meeting is very close to my house though so if I'm going to try it - now seems like a good time.  I posted a note to the group and I've received soooo many encouraging notes from other members.  It seems like a really neat bunch of people.  So, I'm looking forward to it too in spite of being a little nervous.

We have physical therapy on Wednesday.  I'm hoping Eliana will be able to do a little more and not have a sore tummy this week.  She is loving being up on her hands and knees - rocking and looking like she is ready to take off!  Her button site isn't really looking better, though I'm guessing it will just take some time.  It doesn't look any worse either. 

That's about it for the week.  Christopher has science lab later in the week with the pond samples.  That's it!

I'll try to write more tomorrow updating on Rebecca's Wholehearted.  :-)  Stay tuned for the news!  *grin*

With love,

Leslie

Guess what our girl has done today!

She is eating!!!  I'm just thrilled with what she has done today.  Her first feeding was at 8:30am.  She was doing great taking most of the bottle.  She got stalled a little on the last ounce.  We took a short break while I got ready for church and then tried a little more.  She ate 128cc - out of the 140 she is supposed to be eating.  We skipped the last 12cc as it seemed silly to pump in so little.  That's a little over 4 ounces.

She just finished her second feed of the day - and took 110cc which is a little more than 3.5 ounces.  she is getting the last ounce via tube as I type.

The surgeon on Friday asked what I thought was making the difference in her ability to eat now.  I do think that having the NG gone has made a big difference for Eliana.  She seems much more content.  While the g-tube is often a pain for me, it really isn't for her.  I'm getting used to it too.  I know the problems and how to deal with them. for the most part.  (At least I'm hoping I've figured out most of the problems.  LOL) 

I'm so very thrilled with Elaina's eating progress!  She has taken a little over 7.5 ounces so far today!  She has 3 more feeds to go.  If she can keep this up, we'll soon be able to do all of her feeds by mouth.  That will be a glorious day!

I was reflecting today on how when Eliana was born I hated giving her a bottle.  I wanted to nurse her so badly.  She was able to nurse, but not for long enough and when she went into heart failure she was not able to eat much orally at all.  Now, the bottle that I so didn't want to be a part of our day - I am welcoming and looking forward to.  Isn't a little perspective a wonderful thing?  I am thankful that we have this option for our daughter. 

Thank you God for this moment of hope.  This day has been one already of hope.  The message in church was encouraging and it was just sweet to be there with my family.  I've missed us being able to be out together.  This peace in my heart is helping to feel like I'm finding that "new normal".  I so wanted things to be like they were before that I'm sure I was resisting the changes.  I'm happy to have back some of the old (like today I'm trying to bake bread by hand for the first time in 8 months), but I'm also happy to find joy in the new too.

Lord - I am thankful for you.  I am thankful for the opportunity to praise you.  I am thankful for eah blessing - large and small - that you place in my life.  Thank you for opening my eyes to see more of the blessings that you provide.

With love,

Leslie