Saturday, October 20, 2007


Delight yourself in the Lord, and He will give you the desires of your heart - Psalm 37:4

I used to think that if I were obedient - good - doing the right things, that I would be blessed.  I would get the things that I wanted.  My prayers would be answered the way that I wanted them to.  It seemed like a good and fair trade.  It made sense to me (and often still does!)!  Even though my Daddy often told me growing up that "life isn't fair", I still wanted it to be so.

I'm thankful though that God is more than fair - He is a giver of grace.  I am learning more about delight.  It isn't so much about me - and what I want.  It's about Him.  It's about my heart being in the right place.  When I'm able to find delight in God - not in my circumstances or blessings - then I will find that my heart is filled and that my desires are being met.  

It's easy to find comfort in this when things are going well.  It has been a huge struggle for a lot of the last year.  It is so hard to understand sometimes.  Even last night my 8yo asked me "why is life so hard?".  I'm not sure if I answered him fully.  He often surprises me with his insight on things beyond his years.

I think life is hard for a number of reasons.  An obvious one is due to sin.  Though I also think that difficulties help to keep us on our knees seeking answers from God.  Trials keep us focused on the One who can help and heal.  Pain causes us to long for life with Him - for His peace that passes understanding.

I am trying to keep my focus where it should be (though that isn't always easy).  Finding my delight in God.  Being content in what He has given me.  Finding peace in my circumstances - even when they aren't what I want.  I have so much to learn.  Thank you for being so patient with me Lord.   

Speaking of delight - Eliana is doing so well!  She is such a delight to me.  A good gift from God.  When she was born, I had a lot of questions, doubts and fears.  I'm sure I will continue to wonder about many things.  I do know that Eliana is a precious, incredible gift!  I can't help from smiling and hugging on her.  Her smile just lights up the room!  Almost every time she is alone and someone walks in to her, she responds with happiness and a huge grin.  How can you not smile back?  She gives love so freely - what a blessing!

Eliana has not needed to be pumped since Monday!  Yippee!!!  I sometimes wonder if I'm being hard-headed about not using the pump, but I really want her off of it!  I obviously wouldn't hold out if she were struggled or just needed it.  (Like on Monday.) 

We visited her ped yesterday (Fri) and I told her that I had decided not to tube her once she had her first day of complete oral feeds.  I felt she was doing well and that if we were a little short that it would be alright.  I confided that I had decided that "I'm the mama and I can make decisions for my baby."  (Not leaving out Roger in this decision process as he too wants to see her off the tube.)  It was more that I felt we didn't need to wait for a "professional" to tell us what to do each step of the way.  Her comment was that I had always had strong opinions on how she was fed.  (A reference to my stubborness about breastfeeding Eliana - said with kindness.) 

After checking her out, the ped agreed that she was doing GREAT!  She measured her height and weight (and head circumference) on 2 different charts.  One for typically developing (I like this so much more than "normal") children and one for children with Down syndrome.  On the first chart she measures at the 25%.  Not bad given all that she has been through!  On the second chart, she is at the 75%!  Way to go!  She hasn't gained much weight in the last month and I was wondering if she would have dropped, but she is maintaining a pretty consistant curve. 

Here are some of her numbers from the visit:

Height 27.5"

Weight:  17pounds 14 ounces

O2 Sats:  100!!!  I had tears forming in my eyes as I watched the numbers climb until they reached this.  This measures how well the oxygen is getting to her heart.  This is a struggle for most heart babies and was for Eliana before her heart was repaired.  It's sweet to see that high number which indicates all is working as it should.  Thank you God for my baby's healed heart!

I asked the ped about getting her off the tube.  As I anticipated, she wants to wait until spring to have it removed.  I understand as a sickness in which she can't eat would land her in the hospital instead of just needing to be tubed.  She recommended that I call the surgical nurse and ask her about it.  I had told that I thought there was a window in which if she got rid of the tube that she wouldn't need surgical repair to the site.  Her opinion was that given the amount of granulation tissue that there is around the site that she will need some repair to make it "look pretty" again.  I'll hopefully be able to talk with the nurse next week and have a little more info on this.  Her site is getting worse in terms of the granulation.  Think of a red swollen growth around the button.  It doesn't seem to bother her a lot in her day to day routine, though she doesn't really like to be touched there directly.

Eliana had a visit with her PT (physical therapist) on Wed and did well.  She seemed to cry less than last week.  We didn't have her feeding therapy in the morning and I wondered if a slower day at home helped any with that?  She is working on learning to crawl.  Right now she tends to scoot backwards - which is frustrating when you want something in front of you.  She hasn't figured out how to move her legs forward so we are trying to move her legs and then waiting for her to move her hands. 

She is also learning to bear weight on her legs.  She is doing better with this.  For awhile she would just crumble when we would try to have her "stand".  These are the next two developmental milestones for Eliana to reach.

Her therapist commented on how fortunate Eliana is to be in a home with lots of attention.  She even gave the boys things that they could do with Eliana to help her.  Eliana has a team of therapists-in-training right in her own family.  *grin*  I love watching her siblings with her.  ALL of them love to be with her.  They are drawn to her and want to hold her and love on her.

Christopher has always loved scooping her up from her crib or chair or wherever she may be (even from my arms) to play with her.  Rebecca loves to mother Eliana and fix her hair.  I think that the little boys have watched their older siblings and learned a lot on how to love on and care for their little sister.  They all love to hold her, sit with her, talk to her and play with her.  I find such delight in watching them with her.  I'm thankful that they are home and able to provide so much love, encouragment and fun to her throughout her days.

Tomorrow we are planning a fun park outing.  We are attending a local Buddy Walk.  It's sponsored by a local Down syndrome group.  There will be a walk (fundraiser for the group), food, activities, a raffle and a band.  Chris Burke in one of the members of the band.  He is the man who played "Corky" on the tv series "Life Goes On".  I'm excited and a little nervous.  I'm excited about meeting some of the moms that have been so very kind to me via email.  I'm excited about seeing some families and in particular other children with Down syndrome.  I'm nervous about going to an outing where I don't really know anyone - though I'm sure we'll be fine. 

As always there is more that I want to write - but will have to wait until later.  I would love to share some of what we've been doing in school - our art and field trips (horseback riding) .  Roger and the boys have started on the long-anticipated tree house in the back yard!  It's looking super and the boys are so excited!  Way to go guys!  It's late though and I'm trying to get to bed at an earlier hour.