Wednesday, May 23, 2007

Needing to pack ... and putting it off until the last minute as usual.

I know that I waited until the last moment before Eliana's surgery.  I even did this before her birth.  In fact, I had packed NOTHING - and because I was so very sick and had to be admitted to the hospital right away, there was no time to pack anything.  (In the past I've always just packed when I was in labor.) 

Tomorrow we will be leaving to attend the NCHE conference.  It's our state's homeschool conference and I'm a vendor there.  I sell the FIAR curriculum - which I love - and is written by dear friends of mine.  I've been doing this for a number of years and have loved sharing with others the joys we have experienced using this curriculum.  For several reasons, this will be my last year as a vendor which makes me sad.  Perhaps if the market changes, I will do it again one day - we'll see.

This will be Eliana's first trip.  It will be her first significant outing that isn't medically related as well.  We've missed a lot of field trips and travel that I had anticipated going on and I'm looking forward to getting out with my sweet girl.  A little nervous about it too.

There is sooooo much stuff to pack for Eliana!  It's amazing how one so little can require so much stuff.  I have the feeding pump, additional feeding bags, syringes, stethoscope, formula (both ready to feed and  powdered to add in), bottles, dish soap, drying rack, bottle brush, NG tubes, scissors, various adhesives (duoderm, tegaderm, pink tape), diapers, wipes, blankets, clothes, socks, pjs, swing, stroller, etc...  Maybe you can see why I'm putting it off.  LOL

Today we visited a new therapist - an OT with feeding experience.  She was very nice.  She watched Eliana eat.  She noticed that there seemed to be some problem - something that is bothering her.  What she doesn't know is what has caused it.  It could be something sensory caused by all of the cardiac issues, could be silent reflux, or it could be fatigue.  A lot of things to look at and try to sort out.  We are going to try to take each one step by step and see if we can rule things out.  She told me that if we tried one and didn't see a difference in a week or less, we could move on to the next thing. 

Eliana didn't eat well.  She tried and then got fussy.  The therapist tried some different things to soothe her like a vibrating chair.  She finally got really fussy and stuck out her lip several times and then just cried.  Really not something she does often at all!  I tried feeding her again and she was clearly hungry, but for some reason couldn't eat.  I then tube fed her some of the formula which settled her right down and made her happy again.  That was what made the therapist think that reflux/sore throat could be the problem. 

She also said that based on her experience she did not think it was a good idea to go without the tube feedings.  She thought if we could see an increase in the amount that she is taking that perhaps we could move to that at some point.  My instincts tell me that this is the way to go as well.  She's gone as much as 12 hours with no tube feeding and didn't indicate much hunger at all.  She also takes only about 6 ounces per day by the bottle.  That's less that 25% of her total.  I know that she is a healthy size and could afford to lose some weight, but I don't want a lack of food to affect her ability to grow and develop in other areas.  *sigh* 

It's hard to know sometimes what is right.  I know that God will give us wisdom though as to what to do for Eliana.  That doesn't mean we won't make mistakes - we'll make plenty of them!  We will do the best we can to follow God's lead on what course to take for Eliana.

If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.  James 1:5

This is one of the verses I've been praying as we seek to find what will work best for Eliana.  Honestly, it's hard to know.  I'm trusting God to lead us on this.  Trying to find the path He wants tme to walk.

The therapist today was encouraging in terms of what I'm trying to do with Eliana as well as commenting on her motor skills.  It's always nice to hear words of hope.  I think that so often when you hear about a child with a disability you tend to hear the "gloom and doom" instead of the hope.  I know that God made Eliana and blessed our family with her and yet words of hope for how she will fare in this world are still nice to hear.

A few prayer requests for our family.

1.  Safety as we travel to the conference.  Health for all of our family, most especially Eliana.

2.  Peace at home while we are gone.  My parents are here to help with the children and I'm hoping that it will be a fun time for all of them.

3.  My daughter Rebecca has a hard time being away from me for lengths of time.  There have been a number of those over the last 5 months and her heart is just tender.  (That is  often a great thing but can cause hurt at other times too.)

That's all for now.  God bless you faithful friends!

With love,