Tuesday, August 25, 2009

Trying Out A Wheelchair

We have been putting off purchasing a wheelchair currently for a few different reasons. Our PT and Conductors think we should wait because we don't want Grace to get too used to getting around in a wheelchair. They/we want her to continue to work towards walking. In addition, wheelchairs are very expensive and insurance and Medicaid will only cover one type of chair over a several year period (I believe in excess of 5 years) so we really must know what kind we want when we get it, unless we want to pay for it out-of-pocket.

For now we have acquired a loaner. We don't use it a whole lot, but Mack and Sophie like to push Grace and she is really starting to figure out how to get around in it by herself. I know that it is likely we will have one of our own one day but for now we are thankful to have this one to try out. Thank you so much Julie for thinking of us!

Thursday, August 20, 2009

Are You Okay Mommy?

I've spent much of this week on the phone with our insurance providers and other agencies looking for a way to get some of Grace's therapies paid for. Can you believe that our insurance does NOT cover out-of-network physical therapy, even when the type she will be doing is not offered within a 200 miles radius!!!!!?? I'm pretty stressed about the whole situation. We have spent thousands and exhausted our savings to get Grace the help she needs to be the best she can be. I have felt at peace that we will go without vacations, and Mack and Sophie aren't able to do outside activities but where will the hemorrhaging of monies end. How much more can we take? I know that we are not destitute and for that I am so thankful but what happens if/when there is no money left. Will Grace have to go without certain therapies? That is NOT AN OPTION. Will I fail her?

Today as I was going over all this on the phone, etc, Sophie came up to me and said "Mommy, are you okay?" I was taken aback. Was she watching...listening...or did she just sense that I was not at my best. I was at the point that I honestly though I might vomit.

"I'm just a little tired today Soph. Everything's okay." I replied.

As she began to rub my arm, she leaned in and whispered "I love you mommy." That's when the tears began.

Tuesday, August 18, 2009

My Babies Are Growing Up!!

On August 9, my 28 week premature babies turned 4 years old. I can't believe that my 2 lb 11 oz boy and each 1 lb 13 oz girl are almost too big for me to carry...are counting and picking out letters...are choosing their own clothes. How can it be that we are so blessed?
Here they are three years ago in their 1st birthday hats.


O LORD, you have searched me

and you know me.

You know when I sit and when I rise;

you perceive my thoughts from afar.

You discern my going out and my lying down;

you are familiar with all my ways.

Before a word is on my tongue

you know it completely, O LORD.

You hem me in—behind and before;

you have laid your hand upon me.

Such knowledge is too wonderful for me,

too lofty for me to attain.

Where can I go from your Spirit?

Where can I flee from your presence?

If I go up to the heavens, you are there;

if I make my bed in the depths, you are there.

If I rise on the wings of the dawn,

if I settle on the far side of the sea,

even there your hand will guide me,

your right hand will hold me fast.

If I say, “Surely the darkness will hide me

and the light become night around me,”

even the darkness will not be dark to you;

the night will shine like the day,

for darkness is as light to you.

For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

All the days ordained for me

were written in your book

before one of them came to be.

How precious to me are your thoughts, O God!

How vast is the sum of them!

Were I to count them,

they would outnumber the grains of sand.

When I awake,

I am still with you.

If only you would slay the wicked, O God!

Away from me, you bloodthirsty men!

They speak of you with evil intent;

your adversaries misuse your name.

Do I not hate those who hate you, O LORD,

and abhor those who rise up against you?

I have nothing but hatred for them;

I count them my enemies.

Search me, O God, and know my heart;

test me and know my anxious thoughts.

See if there is any offensive way in me,

and lead me in the way everlasting.

Another New Therapy

I'm so excited!!! Grace is starting an intensive therapy with Beginning Steps Therapy on August 24. This therapy will be for three hours everyday for three weeks. There is a long waiting list to get into this therapy and because three other children were not able to attend, we worked our way up the list and got in. I feel guilty for being so happy that they could not attend but also so lucky that we don't have to wait a year (as originally planned). The physical therapist, that Grace will be working with, is wonderful and is a big fan of the PERCS procedure and familiar with the work that has to be done on those muscles that had previously not been used due to the spasticity that was released during PERCS. I'm not sure that all makes sense but work with me...I'm tired. Please pray that Grace gets all she can out this and that she eats enough to replace all the calories she will be expending. She will basically be working out three hours a day. If only I could do that :)