Wednesday, May 30, 2012

This Journey

This journey of having a special needs child is hard.  Some days I feel empowered, called, and chosen to be the best mommy I can to our sweet little man.  Some days it feels suffocating and sad.  Having there be something medically wrong (not just talking a cold or fever) has been my worst fear since the day we said goodbye to our first baby boy.  When Ella was a baby...I really feared losing her.  Every fever, cold, etc. I just knew it was going to be something terrible. Little by little I learned to relax and trust.  Even though my head knew that she would get sick, it took a while for my heart to get there. 

Spina bifida affects lots of different body parts.  Each month my calender has at least one BIG appointment that could be a game changer.  I see those days marked in my planner and my stomach does a flop. 

I know God is using this in my life to make me more like is often not an easy or pretty process. The letting go of my plans, my wants, my expectations...dying to them and allowing Christ to be glorified is life.  The having a heavenly perspective...knowing that this life is but a vapor, is a daily discipline.  The trusting in God's sovereignty...even when it hurts and hurts is faith. 

I daily see my great need for the Lord.

Tuesday, May 15, 2012

10 Months

Our sweet little guy is now 10 months old.  I cannot believe it!  His adjusted age is 8 1/2 months.  Seeing that my last post was about him turning 9 months, it shows that this has been a super busy month. 

This past month Eli had all of his regular therapies with the addition of the Spina Bifida Clinic day and also his first sedated MRI. 

This month brought with it some new skills as well.  Little man can roll and get on all fours as quick as we can blink.  He is doing great rocking on his knees on command.  His is beginning to move his arms some in the crawling motion.  Our PT said a few months ago that crawling on all fours would be very challenging for him and we are hoping to surprise her soon.  I am hoping that he will be crawling well by his first birthday....time will tell.

He can really get around and as you can see will no longer play on his blanket.  He likes to get tangled in it instead.  He learned this month how to clap on command and give hi fives.  I guess the biggest accomplishment was that he figured out after lots of practicing how to transfer from his tummy to sitting and from sitting back to all fours.  It may look a little different as he keeps his legs straight for support, but he does it!!

He is such a sweet boy.  I call him our little bear because he is so sweet and cuddly.  He is just a happy and easy going little guy.

Eli got his first little hair cut by mommy this month.  We are still trying to figure out this boy hair-do thing. 

He loves his big sisters and they remain crazy over him.  (Party in Eliza's crib...and yes she is still in a crib and I have no plans of rocking that boat anytime soon.)

Eli's MRI revealed that his ventricles are stable, which is good, but that he continues to have more fluid on the outside of his brain.  The neurosurgeon feels that he may be developing communicating hydro and has given us two months to wait and see if his body will absorb the extra fluid.  He said if not we will need to do a shunt.  My heart was very sad over this yet, we will continue to pray, plead, beg and trust God no matter what happens.  I know it wouldn't be the end of the world, yet I really hope we don't have to walk down that road.

We are currently seeking a second opinion from the neurosurgeon at Vanderbilt who preformed his fetal surgery.  We are wanting to get all the info. we can in order to make the best decision for Eli.

Oh yea, Destin makes a case you didn't know!

Have a great day!  Eli's gotta get back to his leg work-out!!