Our week - Sept 3-7

Hi Friends,

I'm a little behind.  I'm finding my days are just busy - as I'm sure are yours - and there aren't enough hours in the day.  (Are there ever?!)  We are trying to keep up with schooling and it has added a lot to the day.  I need to find a balance with housework too.  *sigh*  That has never been one of those things that I love to do.  Not sure I know many people that do though!  I probably need an attitude adjustment here - as well as some training time for the children and I.  ;-)  There just aren't enough hours to get it ALL done.  I'm Ok with that - most days. 

Monday - We had a fun Labor Day!  It was nice to have Roger home from work.  We had friends come over for the the afternoon/evening and had a blast together.  Roger and the kids went swimming while my sweet friend and I did some scrapbooking.  It's been a long time since much of that got done and I thoroughly enjoyed the time!!!  I need to find a way to make that a regular part of my week?  or maybe month?  I do enjoy this creative outlet - plus it's really fun to look back at photos of people and events that you love.

We had ribs for dinner which were a hit.  The evening included games, a movie, ice cream and more scrapbooking.  Fun for all of us!

Tuesday - Eliana had an appointment with her ped today.  It was great to see her.  She is just so positive and encouraging!  We also saw the ped we had visited on Fri and who had been concerned about Eliana and was hoping that her advice had been good.  (It was.)  Her burn looks much better and the site isn't bleeding any more.  Thank you God!

The area still doesn't look great though and the ped thinks it will just be that way for the duration.  She recommended that I not continue with the silver nitrate.  Hopefully it won't get any worse.  It's hard to look at it as it just looks painful (and truthfully it looks yucky).  It doesn't seem to bother Eliana thankfully.

She is still doing well on the height/weight chart.  She is high on the "Down syndrome" chart which plots the slower/lower growth patterns.  She is at 80-85% there.  Don't remember where she is on the other chart.  She is still on the curve, though I don't remember where.

BIG PRAISE for today's feeding.  She ate almost 17 ounces!!!  Yippee!!!  This is the most to date since she was in heart failure.  Way to go Eliana!  She took just 6.5 ounces through the tube.  If she could continue like this, we could see an end in site for the tube!

Wed - A day at home!  Yippee!  I am really appreciating those.  We have physical therapy in the afternoon.  I'm not sure if I've seen much change in what she is doing.  She is trying to crawl though!  She moved one hand forward today and kind of scooches her knees forward too.  Cute!

Oh, the other thing she is doing more of is clapping.  She did this in imitation of my friend Rebecca the other day.  It was fun to see her doing that.  She did it so much at the ped office today that the ped asked if we did this a lot when Eliana did anything.  LOL  We don't though I bet we'll do more of it in the future.  This is something Eliana just enjoys doing.

Thur - Our first field trip with Eliana and the feeding tube  "stuff".  We (Eliana and I) have missed almost all of the field trips this year.  We went briefly to one that was close by and in between feedings.  We also went to one that was next door.  We have not ventured away from home as a group at all.

I need to find something to warm a bottle while we are out.  No luck yet in finding something that is battery-operated and not something that plugs into a car.  I'm hoping that someone makes this and that it isn't just a "good idea" in my mind.  LOL

I'm excited and a little nervous about being out and having to manage the pump and take care of Eliana - and the other children.  It's with our FIAR  homeschool group - a wonderful group of friends - so I know we'll be in good company.  I've really missed these outings and being with these friends and I am excited about starting back. 

Fri - This is a big day!!!  Rebecca will be presenting a check for over $5000 to Duke Children's Hospital.  I'm so excited for my girl - and a little nervous for her too.  We don't know the details yet of how things will be done.  I'm hoping to find out more as I think this will help Rebecca not to be so nervous.  She has done a wonderful thing and I'm really proud of her.

We are exploring the possibility of having a local tv station cover this.  Pray that if this is God's will that it would work out.  I would think a "positive" story would be a nice thing to cover. 

Prayer requests:

*Healing around Eliana's button site.

*Continued improvement in Eliana's feeding.

*That our field trip would be fun and educational for all of us!

*A friend's son Tyler is having his heart surgery on Mon Sept 10.  Would you join me in praying for a successful surgery?  Prayers for his mama and those that love Tyler would be appreciated too.

Will update as I can.  I need to post some photos. 

Thank you friends for caring for us.

With love,

Leslie

PS  I've been asked about how to buy bracelets.  If you will just send me an email, we can arrange this for you.  :-)