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!

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.

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.

PSALM 139

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 :)

Awakenings

Last night I had a very strange dream. Somehow...I think is was some type of medication...all the children I know with cerebral palsy stood up and started dancing, speaking, and moving around as a typical child would. Everyone was so happy and celebrating. Then one by one the symptoms of cp started coming back. Children started falling down, they began losing use of their arms and legs...many stopped signing or speaking. You could see the sadness on the faces as they started to realize that things would go back to the way they were before. It was devastating to everyone.

The dream reminded me of the movie Awakenings with Robin Williams and Robert DeNiro. In this movie patients who have been comatose for many years are suddenly "awakened" by a drug, only to fall back into a comatose state after a short period of time. They know that it is happening and that is the saddest part.

I was thinking about what this dream means. I think I have REALLY finally realized...had my own awakening...that there is no miracle cure for cerebral palsy. No matter how many therapies and procedures we do, Grace will always have cerebral palsy. I DO believe that she will continue to improve and maybe eventually walk, but she will always have special needs and will appear so to everyone. But I also REALLY know that she will always be special in many other ways...not just because of her disability.

Wordless Wednesday

Yoga for Special Needs

After Grace's PERCS procedure, I received an email from a mom of another child in school with Grace at ACCDAT. There was a yoga class for special needs beginning in June. It sounded great. I meet the instructor, asked a few questions and decided this was the thing for Grace. She now goes 3 days a week and Whitney is her helper (we love her and she helps make my life easier...THANK YOU Whitney!!)  She loves it and can now even do some of the chanting.  

The whole class...Grace, Hailey and Colin make a great group.

Grace has become so much stronger and more flexible.  PERCS has much to do with her improvements but the yoga has also helped a lot.  I can't remember what this pose is called but Brenda says she does it great.

This is "fierce posture".  Doesn't she look fierce ;)

Grace and Hailey like to hold hands while they do breathing exercises. 

I went last Friday to check it all out and took Sophie.  Here she is trying to do tree pose.

I Wanna Hold Your Hand

Grace is by far the most affectionate of my three.  She loves hugs, kisses and cuddles.  She also loves her brother Mack more than anyone else.  She thinks he is the greatest thing ever!!  She is always trying to rub his back or hold his hand and will have nothing to do with it (as long as we are watching).  He fell asleep in the car the other day so Grace finally got a chance to hold his hand.  She was so happy.

Notice the hat...the mouth has fallen off and we had to take it together today.  I don't think it is going to last much longer.  Luckily we have a parrot hat waiting in the wings.  

Wordless Wednesday

I Did It By Myself!!

Sophie was so determined to do this puzzle and after a little coaching on "how to do a puzzle" from mom, she sat here and kept working until she "did it all by myself!"  She was so proud and so was I.  She wanted me to take a photo so here it is.  Way to go Soph!!  (yes, her shoes are on the wrong feet, but one thing at a time :)

Mack's New Hat

The giraffe hat lasted a good 2 months. Mack never took it off except for swimming lessons...he even slept in it. Well, it finally was beyond repair and after some coxing, Mack was convinced that the monkey hat was pretty cool. He is now wearing it non-stop. Thanks Shelly, Macey and Darcey for sending the replacement hat.

He was wearing it today while Grace, Sophie and I were wearing crowns from betterthannormal.org. This was the conversation....

Me: "Hello, I'm Princess Mommy"
Sophie: "Hello, I'm Princess cess Sophie"
I was expecting Mack to say something about being a monkey, but this is what he came back with...
Mack: "Hello, I'm a trash can!"
Hmmmmm...well allrighty then?

Update on Grace

I know, I know...I've been busy!! I've been meaning to update everyone on Grace since the surgery but we have been on the go. Grace is doing PT twice a week and special needs yoga 3 times a week. She has been working really hard to build up those muscles that had been covered by the spastic tone until the PERCS. I still wasn't sure the first week afterwards that we had done the right thing by going through with the procedure, but I can say now...we DID the right thing. Well, I guess we won't really know for awhile but right now she seems to be getting stronger and stronger. She sits better unassisted and cruises around so much easier because she doesn't fight the tone making her legs cross.   She is so incredibly motivated to move, move, move.  She is VERY close to getting into sitting position on her own and standing unassisted.  We will just keep working.  Check out the videos below.  She gets her casts off on Tuesday.

Wordless Wednesday

Galveston, Oh Galveston

Well, we did it.  After much prayer, much discussion and much research we took Grace to Galveston to have PERCS with Dr. Yngve.  We met with the doctor and his team on Monday to discuss the procedure and Grace's situation.  After several  hours with his team, we decided to go forward with the surgery the next morning at 7:00.  Needless to say, I didn't sleep much Monday night and was even second guessing everything as we left our hotel at 5:30 am the next morning.  Is the the right thing?  Is it the right time?  

This is what was done...

-gastroc recession

-semitendinosus percutaneous tenotomy

-myofascial lengthening single hamstring (Timi let's discuss this)

-percutaneous adductor tenotomy

-biceps brachialis lengthening

She has cast from her toes to her knees and sleep in leg splints and arm splints.

I know it sounds like a lot but Grace was up and walking (with my help) yesterday.  She is doing great but now the REAL work begins!  She even rode her tricycle this morning.  She is, obviously, pretty weak but I am so excited about her recovery and the possibilities.  A PT is coming to the house tomorrow morning to help me develop a home program.  She will also be doing yoga on MWF and then back to CE in July.  We will be very busy!!!

Wordless Wednesday