Tuesday, November 27, 2012

Peekaboo My Love

Peekaboo My Love
By Candace 

Peekaboo my love…
…but you were the surprise,
We had to change our tune
To all our lullabies

We thought that you would walk
We thought that you would sing
We never thought they’d tell us
Not to hope for anything

Not anything?
We thought this could not be
We racked our brains and searched our hearts
And prayed ourselves to sleep

If only a thousand kisses a day would cure you
You’d be even better than our prayers
We always wanted to be special
But not this special…not this rare.

We count our blessings
And count each seizure …one by one
We hold you tightly in our arms
When there’s nothing to be done

Each day I wonder how much longer
Will you be here by my side?
How many kisses can I give you?
How many tears will we cry?

How many years will we have to live,
Being stronger than we ever thought?
How many meds will they give us for you?
How many doctors will we have fought?

I now know how it feels
To love unconditionally
To be proud of my child
Thought they can’t walk, speak, or see

Though you can’t run into my arms
And say, “I love you too…”
One day son, we will take a walk together
Where everything will be new

We won’t need bodies and brains
Or this word… “neurology”
I’ll melt into your hug…
And whisper, “I was your Mommy” 

Tuesday, November 13, 2012

Thanks giving to overflow ... for Edmond.

Hi everyone. Seems like forever since I've written an update, but it's only been a month, I think we've just been so busy it feels like a long time. Edmond had an appointment with his neurologist today to discuss his climbing seizures, he's been having 8-10 a day for about 3 weeks time and usually wakes up to seizures between 4am-6am each day. We are going to up the dose of ONFI that he is currently on and see if it does anything. He is going from 10mg twice a day to 15mg twice a day. THe max dose is 20 mg twice a day for people ages 2-16 year old... so after that dose, we would have to add in another medication. He continues to take Keppra twice daily as well. He has been sleeping so much the last week due to the seizures tiring him out. In the mean time we are just trying to live our lives the best we can each day. 

Edmond continues to eat well, and I've been racking my brain for solutions to thicken his foods that are also nutritious for him. I've been using yogurt, pureed butternut squash, pureed pumpkin, frozen fruit, barley, and avocado in smoothie like drinks for him... adding in formula for vitamins and fat and prune juice for fiber. He was 25lbs today and 32 inches long, so he is growing well. 

Edmond holding onto the red ball with his left hand. 

Edmond started Occupational Therapy on Thursdays at 5pm with California Children Services (CCS). I have to take him to their offices in San Bruno for this. CCS also lent Edmond a bath chair... I included a picture of him in it.  Edmond still receives, vision therapy, developmental therapy, and physical therapy in our home on Tuesday, Wednesday, and Thursday. But he will stop in home physical therapy once a PT Is assigned to him through CCS and we will have to also take him to the CCS site for that once a week in addition to the OT... It's getting really busy! Hopefully Adonis and I can switch off in bringing him to his appointments once I start working. I will be returning to work December 11th, at least that's my plan for now. We are trying to prepare for this major change of pace in our family. I'm a little nervous about time management and everything that needs to be done for Edmond daily, but I really need to return to work at this point, so we just gotta make it work. 

Edmond's bath chair on loan from CCS
until he gets his own.
CCS is also scheduling an appointment with a "vendor" to present us with equipment options, such as an adaptive wheelchair, stander and bath chair for Edmond. I believe we will have to apply for our insurance to pay for these things. It does feel like everything for Edmond is falling into place now so that I would be more able to return to work. Edmond is also getting "institutionally deemed", which means he will qualify for Medi-Cal as a secondary insurance due to his diagnosis, and he also qualifies for respite care hours and hopefully in home nurse care hours, which we are now waiting for a response to our application for these services. 

We continue to have faith that God has a plan for our family that is greater than what we now see. We continue to trust that though it is so painful to endure all of this, we can trust that God has the very best intentions for our lives and our family in mind, although it is a mystery to us as to how this could be God's best, we have faith that it is. 

Please keep us in your prayers, as Eden likes to say when she gets into trouble, and I ask her... "why did you do that?" she says, "because we are weak, but He is strong"... And so it is so true... we are ever so weak, but in our weakness...  HE (meaning Jesus)  is strong... 

Please also pray especially for Adonis' family during this time as they are, even as I write this, having to say goodbye to Grandmother Beatrice Segrove -- as doctors have said she will not make it through until morning. Adonis is in Concord at the hospital there right now saying his goodbyes with his family. 

I cannot think of a better bible passage that encourages me in all of these things than this one... please take a moment to read it... and if you do not understand it... pray that God gives you understanding of it, I am still unlocking the mystery of it myself. 
God richly bless you.  - Candace

2 Corinthians 4:7-18
But we have this treasure in jars of clay 

to show that this all-surpassing power is from God and not from us. 

We are hard pressed on every side, but not crushed; 
perplexed, but not in despair; 
persecuted, but not abandoned; 
struck down, but not destroyed.  

We always carry around in our body the death of Jesus, 
so that the life of Jesus may also be revealed in our body.  
For we who are alive are always being given over to death for Jesus’ sake, 
so that his life may also be revealed in our mortal body. 
So then, death is at work in us, but life is at work in you.

It is written: “I believed; therefore I have spoken.” 
Since we have that same spirit of faith, 
we also believe and therefore speak,
because we know that the one who raised the Lord Jesus from the dead 
will also raise us with Jesus and present us with you to himself. 

All this is for your benefit, 
so that the grace that is reaching more and more people 
may cause thanksgiving to overflow to the glory of God.

Therefore we do not lose heart.
Though outwardly we are wasting away, 
yet inwardly we are being renewed day by day. 
For our light and momentary troubles 
are achieving for us an eternal glory that far outweighs them all.
So we fix our eyes not on what is seen, but on what is unseen,
 since what is seen is temporary, but what is unseen is eternal.

EDMOND is a lion for Halloween :) 
Playing with his mobile and ball. 
Ready for his appearance at Auntie Kelly's Wedding...