Thankful Thursday

For years and years I have been made to feel if I were crazy because illness after illness would sweep through me. Odd things that ER doctors could never figure out. Even family at times questioned if those illnesses were simply attention seeking behaviors. I have doubted and even questioned myself over the years. "is this really happening again? Why do I keep getting sick.

I have sought God and prayed for help in this and recently through a set of God consequences I found myself getting allergy shots with my Son. Now it was my sons needs that found me into the help and expertise that was necessary to  find a very rair genetic disorder. 

It was GOD!

Now after years of this I am full of hope, dignity and humility to be told I will no longer have to live with illness after illness hitting me knocking me down off my wheel.

Today the supplies came for tomorros infusion.

Am I nervous absolutely!

 This is what will be sent to me every 4 weeks.

The pump has to be mailed back every infusion.

The refrigerated item is the gamaglobulin that will transform my physical health.

This is $3600!

100% covered! This every 4 weeks!

Possibly I may get to extend the treatments out. That is my hope.

That is my prayer.

I told the driver of the transport that I was happy.

he asked me why?

I told him it was because what ever the road I may be on it will be more about those who walk it with it.

It will be the character exercised over all these years that will make or break me in this.

Though my body be tried a bit over this my heart sees my mind knows that this is God's intervention to the health of my body. 

I will live a healthy normal life now.

I will play with abandon with the children and all those who surround me will once again know me by my new name.

Tenacious, vivacious White Raven.

Humor

They sent the instructions to the pump...

IN SPANISH!

The English manual was sent via fax.

I am taking it easy today and drinking a lot of fluids. The process starts 8 am my time and will be a 6 hour project.

A neighbor has offered to watch the kids the 

WHOLE DAY!

All I have need of. Helps me to feel comforted that it will all be good.

Signs and wonders give me that peace even if my soul does waver a bit with some nerves a shakin'~~

Support Group for Teen and Young addults with CVID or PIDD

Common Ground This is a wonderful support group site

IVIG Demonstration Project Bill Introduced WE NEED YOUR HELP TODAY!

Action Alert
Please contact your congressman here this is an easy fill in the blanks form to help those of us with CVID to get the home nursing care associated with the infusions that protect our lives. As of now the nursing is not covered and IVID need to be giving in an in home setting to protect PIDD and CVID patients from infectious illness if we were to go to a public facility at the very moments we are most vulnerable to catching them.
Thank you for supporting those children and adults who lack immunity from these genetic disorders.

Inherited Common variable immunodeficiency (CVID) first infution

The first infution is scheduled for Friday.

The home care nurse will meet us at the doc office. She will monitor me for the 6 hour treatment.

The staff there if I have an anifilactic ?sp, reaction.

Rejoice with me the insurance will cover it at 100% no co-pay!!!

The cost of the treatment will only be $3600 a month! Well better than the $10000 we thought we were facing. The infusion is a lower dose and so costs less. this will help with my life time max on insurance. The meds and the equipment will be delivered via cold packs.

Here I go...

We are still trying to arrange the childcare Steve will either take of and get to be with me or tending the kids, or a little of both. The nurse Stays with me the whole time. Please pray that I do not get sick or vomit. Oh that would really be a drag. The migraine possibility yuck. Well as we see over and over this unmerited favor over me will guard me.

A wonderful 4th filled with adventure.

With the heat searing the soles off your shoes. 

The reflections beating off black asphalt.

Oh yes the 4th offered us a exceptional adventure. Surprises around every corner.
It was quite a wonderful opportunity for the children to grow and yes even us. Now in 29 years of marriage we have had flats in the driveway, two flats on the way home from Colorado years and years ago. Sunday well what an opportunity to see answers to the prayers moment by moment.

After Morning services (that were awesome) I always tear up at song of patriotism. We went to the movies and had a mini stay-cation together. The fellow at concessions was so generous and amazing. He suggested ways to economize the order, going far beyond good service. It was really refreshing. Dove had won a cup and so we made purchase of two other cups $1 to fill each visit. This little tid bit matters to story. For the cups of ice were not tossed as would be a paper cup but kept.

Leaving the parking lot onto the road choosing homemade lunch over fast food we were homeward bound.

So we thought

The road was so washboard, really it was a noisy road. Then we realized it was not the road that was noisy...yep a flat, in the big truck no less...just then an entry into a parking lot looking up and seeing a tree shaded spot at the very edge of the lot. We limped up into the resting place we would be spending most of our 4th of July in.

A nice place for there were landscaped places for the kids to wonder and jell.

The changing of the tire commenced. We found the supplies (Thank God) under the back seat this being the first time to get them out since buying the truck last year. I grabbed the shade screen and got the little mat from the back seat. Steve commenced the tire lugs stubborn to the point of concern. Prayer...yep they busted loose. Not an easy task.

While searching the rig for anything of good use the cups of ice were put into one and found I an old unopened water and filled it over the ice so at least it would not be hot for him to drink. Using the sun screen I stood over him while try as he might the spare tire would not lower, Unable to stay with the sun to my back (holding the shade over Steve) I went to spell myself a moment in the shade of the rig. I then prayed aloud as the children watched asking God to help lower the tire, Steve was getting very tired. JUST AT THE INSTANT OF AMEN he got it!  When the moment came to remove the tire off of the rig (these are BIG tires) I was able to flag down an officer who came to help lift the tires with Steve who had suffered a mild back injury just the day before. 

The officer left and we were on our way or
so we thought...
the keys had been locked in the truck!

A comedy of errors.

So Steve and Dan began a hike to find help.

I prayed for them, no hats. Then looking up was a hawk...I knew it would all be alright. No one would stop. They simply looked on. We were near a bank drive through ATM.

I gave it effort again hand signing for a phone call...they responded pulling up little by little.

When I approached them there was a dream catcher hanging from the mirror ( a native symbol of warding off evil).

A man and three women. The first thing out my silly mouth..."oh, it figures there would be a dream catcher". Quickly I explained that I was Inuit Cherokee and had just seen a hawk before they offered the help of a call. The fellow removed his own antenna and without a word spent over 30 minutes of dedication worked through a crack in the door to hit the lock button. The mall security pulled up with daddy and son. Another later came with a little water we drank.

Then an officer came to see all was well just then the door opened when a stick Steve found gave this native fellow a better tool. We all rejoiced!

Everything we had need of was there. Each step of the way at the very moments of need another came as they were needed. The gentleman who opened the door was so determined patient and calm, he was dignified and respectful. The women also speaking nary a word only a calm kind effort of exceptional generosity of time.

It was so wonderful. 

That evening the events of the day led to a real change in our daughter. 

God does answer prayer.

Her heart is so softened.

It was a wonderful day.
(100*+ in the shade)
Coming home we all rested and took showers. We all sucked on water and ice cubes well into the evening. We were all grateful and content in an amazing adventure on the 4th of July
The evening at home and fire works on the TV

An evening in the light

An honor and a privilege came my way this evening as my daughter who has had a real turn around came to me with an amplified Bible in hand and asked me to read to her. Now Dash was longing for his time too with me and I invited him and his pillow/ blanket to come and lay on the floor to hear as I read.

It was the book of John chapters 1-3. Amplified and expressed with the ease of a child's understanding.

It was Holy!

Now the wisdom came to me to explain that it is the Holy Spirit living by invitation, through belief in Christ Jesus and all that He had done to wake mankind up into who He was/is on that cross, that the light is welcomed. Once light comes in the darkness is then illuminated and can not stay dark any longer. because All the dark deeds done are a prison that is our own torment and separation. When we live in darkness we fear the light. Than that in itself is the separation...the torment.

To welcome the light to shine within is to repent of it and let the light chase away every shadow. We no longer have to live in the loneliness for the absence from fear.

Dove asked me to pray with her, Dash thanked me and wandered off to bed. It was a good night in the light. Darkness got the illumination it needed around here. We spoke of our adoption into the light as also many other things too. This one was so amazingly made clear to them though.

I think I am glowing tonight with gratitude, conviction of a darkness of an amends to tend too. In a way this offense seems so justified it serves a purpose of seeming separation to protect my child. To protect my kid through anything other than light shined into the darkness is error. I must face the darkness head on or I am simply withholding the light from it. The darkness may reject that light but if I withhold the light from opportunity then I error.