Sunday, January 29, 2012

Enjoying a gorgeous winters day in Williamsburg

Hold on to her Benjamin

Run quickly

She's fast

Now you can't get away

Wednesday, January 25, 2012

Lily's journey to a stronger heart - 12 (cardiac cath) pt. 2


wow just seeing those words brings on tears

We went into Monday with peace. 

As we were sitting and waiting while Lily was in the cath lab, Chris asked me

"how was I feeling about the results?"

and my response surprised me a little, because I can honestly say I was not worried, concerned or stressed - I felt such a sence of peace, and even excitment and anticipation. 

and it wasn't that I knew that the results were going to be better, I just knew that either way I didn't need to be concerned.

This is different to how I was feeling a few months ago - I had allowed myself to be consumed and overwhelmed by the what ifs,  how long does she have, and how could I bare life without her. I don't know if it was the emotions of the holidays or what but at times it was not pretty (as some of my work buds can testify too).

As I began to get a grip, focus my eyes on my heavenly father, pray, and read the bible - those things that were consuming me, were replaced by peace.  It is not my burden to carry, no matter what Lily's future is it is OK, my job is to love her, enjoy her, not miss a moment because of fear.

How much better is it when we cast our cares on Him

I had actually gone from a place of  dreading the cath to excitement about it.

After the last time, we were prepared to hear anything - but you can imagine the joy we felt as the doctor told us the results.

Her pulmonary hypertension is significantly decreased - so what does this mean

well the doctors and surgeons and other very smart people will meet to discuss Lily's options over the next few weeks.

OPTIONS - wow we have options - last time we were being told, there was nathing else to be done!!!

They will discuss surgery - the question is when and what??

Thank you again for the continued love, prayer and support you all show to our family.

As far as Lily is concerned she is just HAPPY to be home.

Thursday, January 19, 2012

Lily's Journey to a Stronger Heart - 12 (cardiac cath)

We are getting ready to go CHOP for Lily's cardiac cath, which is on Jan 23rd.  We will leave here Sunday to drive up, and she will spend Monday night in the hospital for observation post cath.  We should return home Tuesday.

She is doing so well - growing, WALKING, happy, enjoying life

We were at Chop last Friday for a pre-cath visit, lots of tests - she was not happy!! The best part of the day was meeting another very special heart girl, Teresa, and her mom, Ann. You can read about Teresa here, on her momma's blog.  Teresa has severe cardiac defects and is in a similar situation to Lily in that she has pulmonary hypertension, and therefore has been unable to have the life saving surgery she needs.  We met a few weeks ago online when I was introduced to Ann's blog by my friend Jen, after a few emails back and forth we realized we were both going to be at CHOP on Jan 13th.  Teresa is an amazing little girl, full of life, so sweet and chatty - her mom is also pretty amazing, she has 9 children, 5 of which were adopted from China, all with medical needs - go check out her blog and read about the miracle they are seeing unfold in little Teresa's body.

We are going into Monday with anticipation.  We are anxious to know what is going on inside of Lily - from the outside she looks amazing - gaining weight, pink (except in the mornings when her hands and feet can look pretty blue), full of energy.  It's what's going on in her heart and lungs that we want to know - and more to the point has there been a change in her PULMONARY HYPERTENSION after a year on medication????

We have peace in our hearts - and whatever the news is, we know God is in control - as someone recently reminded me of - He loves Lily more than we do.

I will update from CHOP as soon as I can, thank you for all your continued love and prayers for Lily and us.

Here is a video of lily expolring CHOP last Friday - enjoy (it still amazes me to see her walking)

Sunday, January 15, 2012

Lily turns 4

On January 4th Lily turned four

She wanted nathing to do with the party hats

Nathing to do with the cake

She hated the balloons and was more interested in the gift bags than the gifts

but she loved birthday kisses from her sister

and fun fast rides from her brother

how blessed we are to have you in our life sweet girl - you are loved so much

Happy Birthday