Our Week - 6/25-6/30

I thought I'd share a quick look at our week ahead.  We have a lot going on and would love prayers on some things too.

Monday - My house is CLEAN!!!  I love it!  It is so nice to look around and see clean.  It happened in about 2 hours as 3 gals swept in and cleaned it all.  This was a gift from some of my friends and it is soooo nice!  I wish I could do the same in keeping it clean.  I probably should have done a better job in training my children.  No guilt now though - just going to enjoy my clean house. 

We also got naps today - well 5 of us did anyway.  :-)  I was very happy to be one of them!

Tuesday - We have no plans!  I've always appreciated days like this and think that I will come to appreciate them even more given all the many, many appointments we have had for Eliana over the last 6 months.

Wednesday - Feeding therapy in the morning.  Eliana is eating some solid foods now.  I am trying one meal per day and may up that soon.  Yesterday she had  applesauce and seemed OK with it.  She doesn't really seem to like it or dislike it for that matter.

Bottle feeding is horrible.  She will often take one swallow - and then not be willing to take any more.  I'm not sure if it's pain or what.  I just see no improvement at all.

Thursday - Three of my children have eye appointments including Eliana.  It's her first one.  I'm really hoping and hoping that she has no eye issues.  For those that have seen pictures you know that all of our boys have glasses and some significant vision issues.  Rebecca has had some mild vision issues and wore glasses for a short time to help prevent any deterioration of her vision.  (It was 20/30 in one eye I think.  Not enough of a problem that she even really noticed.)  The interesting thing is that neither Roger or I wear glasses.  We obviously have something on one of the genes though!

I know that children with DS can often have vision problems related to that.  I'm just hoping/praying that she doesn't.  I really don't want to have to deal with glasses right now.  I know that if she needs them that we will do it, but I just don't want to.  I want her to have a break with something. 

Christopher is hoping to get fitted for contacts then.  We tried briefly last summer but he seems more motivated now. 

In the evening, Roger's sister and her family will be arriving from  Nebraska to stay for a week.  We are very much looking forward to having them visit!!!  It has been a long time since the cousins have seen each other and our nieces haven't yet met Daniel or Eliana. 

Friday - The appointment with the surgeon - or someone working in surgery - to discuss the possibility of a G-tube for Eliana.  I'm starting a list of questions.  If any of you reading have ideas or suggestions, please let me know!  I'm hoping that we will have more information after this meeting.  I'm not sure what all will be done at that meeting.  I know that we are supposed to take her in on an empty stomach.  That won't be hard since she doesn't really fuss for food.

Saturday - Fun with our cousins/aunt/uncle!  Not sure what we'll be doing yet.  I'm sure it will be fun.

We would love prayers for the upcoming appointments for Eliana - eye and surgery.  Prayers for clear answers, wisdom for the doctors, discernment for us for any decisions that need to be made and for the best options for Eliana to be what is available to her.  I will update as I can.  I'm looking forward to the appointments but also a little anxious about what we will hear.  Thank you dear friends for standing with us in prayer!

Love,

Leslie

PS.  I typed this earlier in the day and was waiting to post to add in a picture.  I didn't realize that I'd also have a bit more news to share.  #34 was tonight.  That is the number of times I've put in her NG tube.  Christopher even asked me if I thought I could get a job as a NICU nurse after my experience with Eliana.  I laughed - there is way more to that job that I know how to do.  Though I know a lot more about it now than I did 6 months ago. 

Here's a photo of Eliana from last Thur - the last time she pulled her tube.  Tonight I found it pulled after she had been sleeping on her tummy (she rolled over while sleeping) and then rubbing her face on the mattress.  So even the really great placement up the front of the face is not too tough for our little girl.  Thankfully it still stays in much better there!