just a little update

Hmm... where should I start?

It seems there isn't a whole lot to tell....

We received results from the Whole Exome Sequencing from Baylor.  Unfortunately, there was really no new information....which means we still don't have a diagnosis.  I'll admit I was a little bummed.  In the back of my head I still held out hope that the test would give us some mind-blowing revelation about how to treat Zeta and make things all better. 

I continue to hold a lot of hope for our baby girl.....though my hopes have been changing a bit lately.

We've been blessed with such a caring and understanding medical team and family which helps make sometimes impossible situations seem just a little more bearable.

Zeta had an endoscopy Tuesday.  They did find blood in her stomach, but there was no obvious cause.  The doctor told us that it could be mechanical (from all the hardware in her stomach)  or we may just need to increase her meds or it might be infectious.  They did several biopsies and we should hear back from those within a week.

I am grateful for your continued thoughts, prayers, and support.  I often wonder how we would cope without such.  There are many that are less fortunate than us. I know that we are infinitely blessed and that God is continually with us sending us the love and care we need from those surrounding us.


¹⁴ When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. ¹⁵ Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” ¹⁶ And he took the children in his arms, placed his hands on them and blessed them.
Mark 10:14-16

Today...it's ok

What if we never experienced pain?

What if life worked out exactly as we planned for ourselves?

Would that always be a good thing?

I know looking back that I never would have chosen the way my life has been played out.  No one wakes up and says....hmm....  I would like to be just middle class (feeling like sometimes you border more on 'white trash')...... not  I'd like to have a sickly child......  nor I'd like to spend a lot of time at hospitals......Nobody says I'd like for some of the people I hold close in my heart to  be the ones I meet at some of the most frightening times in life.....   or I'd like to watch my child have ReLeNtLeSS SeIzUrEs.  nor do they say -I'd like to worry about whether or not my other children feel neglected.......These are NOT things I planned in life.

With that said, I don't know whether or not I would change a whole lot....at least not the lessons I've learned, not the people I've met, not the love I've felt..... - perhaps the pain, though......DEFINITELY the pain.....BUT without the pain - would I truly appreciate the little things (heck - even the big things)...would I feel as much compassion for others?  Would I appreciate that wealth doesn't come in dollar bills?  Would I truly understand the meaning of true - really, very true unconditional love?   

If things were always easy would we have reason to hope for anything more?

My ramblings may not make much sense this morning.....I'm just.... still searching.....looking for the meaning of it.....trying to understand this path upon which we've been propelled.  I know it may not be for me to fully understand now....and for now it's ok with me.  Tomorrow may be different.....or it may not.....it really doesn't matter.  What matters is that my hope still resides in Him and that right now I am eternally grateful for this life - for my husband, my boys, my family, my friends, for Team Zeta!

prayers and hope

All I've wanted to do is scream and let everyone know what a rotten day Zeta had yesterday.  If she wasn't sleeping she was seizing.  As I know all too well, that is not a great thing  - at all.  This morning seemed to start off ok, but after a couple of hours she was back at it again.  It's all very frustrating and so disheartening at times.  If you're a parent, you know that you cannot stand to feel as though there is nothing you can do for your child.

Fortunately, my focus has kindly been re-directed.

Take a look at this: (be sure to read the article and notice the date too)

 

 

On top of this, I just received an email from the Hypothalamic Hamartoma coordinator at Barrows asking to share our experiences with another family that is contemplating surgery. Again, I was reminded of how God has shown himself throughout every step of our journey.  Would I do the surgery again?  YES.  Did it help?  YES, it gave us nearly  5 months seizure free and gave us a chance to fully learn more about our little girl.  We don't know if the problems she has now are related to the suspicious inoperable area left in her brain or if it was something set into process from the HH previously or something stemming from her microcephaly or any of her other health problems. We just don't know.   For me, it used to be mostly about not knowing and wanting to know so we could fix it.  Now, it's just about trying to make her comfortable!

 

....but I've digressed far from my point.  The email made me realize that this has definitely been a process for all of us...and that although we've encountered many trying times we've always made it through......and through every step - even before Zeta was born- we were reminded that we're not alone.  We've been saved by grace and this life.....this place...this moment is just temporary.

 

Zeta is resting now.  Pray for more relief.

 

 

 

Psalm 56:8

Zeta is 2 and a half!

We had a big surprise yesterday!

Some special friends stopped by to celebrate Zeta's 2 and 1/2 birthday!

Unfortunately, she was not feeling well - and slept the whole time!

 

Regardless, the party went on and the boys had a blast!

 

 

We finished the day by making a special painting (and even painting each other!)  However, both my cameras died before I could get pictures:( 

I spent the evening counting our many blessings! I'm so thankful for Hands of Hope, the care they provide, and the purposeful memories they help us create!  

 

"Of all earthly music, that which reaches farthest into heaven
is the beating of a truly loving heart.”
Henry Ward Beecher