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Tuesday, April 5, 2011

hopeful news & prayer requests

This is my fave pic of Glor, ever. Taken a few weeks ago. 
Hey sweet friends, sorry it took me so long to update after sweet Glory's MRI yesterday. We really have been praising the Lord for some answers and at the same time - begging Him for more relief for her. The very condensed version of the news we received yesterday is that because of a minor case of hydrocephalus (fluid-filled enlarged brain ventricle) that Glory had as a baby, there is some scar tissue that is affecting some nerves and causing epilepsy. Besides the massive series of seizures Glory had on Sunday, we also think she may have been having minor seizures that would have been undetectable to us but would have led to some pretty extreme personality changes in her lately. While the hydrocephalus is still totally mild and has no need for treatment, the scar tissue will stay and we'll need to treat Glory's epilepsy from here on out.

So, we're really filled with hope. Even if epilepsy is our new normal - that is very different than some of the other things that could have caused such a severe episode for her. We're just starting the long process about finding out more what the future will look like and how we can care for her best. You better believe this mama's gonna be all over the healthy diet modifications and environmental changes, as well as - of course what ever she might need medically. 

Now, in the present though, we could really still use your prayers and encouragement. She is still having an incredibly rough time recovering from all the trauma her sweet brain went through on Sunday. Lord have mercy, she has all her words back though! You can imagine, if we suspect that her minor seizures were causing erratic behavior in the past few weeks - her major seizures are causing some intense unhappiness with life right now. We're doing all we can to keep her calm and help her rest, but she only slept about 2 hours on Sunday night and 2 hours on Monday night. You can imagine how you'd feel under those conditions alone, much less all the other things our sweet girl went through. 

For me, this has been the roughest part. I'm really longing to just see her back to normal, see her as herself for a glimpse of a minute. Our doctors are really confident that she shouldn't have any sort of brain damage, but I just want to see my sweet Glor for a second. I would pay a million dollars or shave my head or cut off all my toes to see her smile right now. To see her giggle or hear her sing. 

Our plan is to move her out of the ICU and see if that helps her sleep tonight, which will hopefully help her start to return to her sweet self as quickly as possible. She's coming off her really intense seizure medication and starting on what will hopefully be her new normal medication, so we'd love for you to pray for that transition as well. 
*update: She is out of the ICU and in the sweet children's floor. Here she can have toys, we can both sleep in her room, we can actually sit on her bed without getting yelled at, and she won't be interrupted every few minutes with bells and dings. She's also been asleep almost two hours, which is a huge answer to prayer. Quality of life has GREATLY improved, though we're so thankful for the awesome care she received in the PICU. 

Here are some prayers from "praying God's Word" by Beth Moore that I've been praying over her this morning. 

Reach down from on high, my God and my Redeemer, and take hold of me! Draw me out of deep waters. Rescue me from my powerful enemy, from my foes, who are too strong for me! My enemy has confronted me in the day of my disaster, but You, Lord, are my support! Bring me to a spacious place; rescue me because You delight in me! Psalm 18:16-19
{Gloriana would probably want me to tell you guys - "the foe" of the IV is not actually too strong for her. She's beasted seven of those 
and now the nurses have quit trying to keep one in:).}

Lord, my God, show the wonder of Your great love, You who save by Your right hand those who take refuge in You from their foes. Keep me as the apple of Your eye; hide me in the shadow of Your wings from the wicked who assail me. Psalm 17:7-9

Keep me safe, O God, for in You I take refuge. I say to You, Lord; "You are my Lord; apart from you I have no good thing." Psalm 16:1-2

Though my enemy plots evil against me and devises wicked schemes, he will not succeed if I am walking with You, O God. You will make him turn his back when You aim at him with drawn bow. Be exalted, O Lord, in  Your strength! 
I will sing and praise Your might! Psalm 21:11-13

That last one is my favorite, amen. If you know our Gloriana, you can probably picture her - a sweet warrior princess defeating this enemy who is trying to assail her. I know within days, she'll be singing His praises again. Shoot, she might want to even make a vlog about it.  

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