Share each other's burdens, and in this way obey the law of Christ. Galatians 6:2

      It doesn't seem fair.

I've been following 3 month old baby Chaia's story. Today they did a PET scan, and it showed her heart is more damaged than they originally figured.

I want to ask "Why God?" But her parents have such a heavenly perspective. They count it as joy to go through these trials.

 I remember God's grace carrying us through during those early months of Riley's diagnosis.

But we weren't looking at such a serious, dire prognosis. 

My mama's heart is in pieces for this family. I cry throughout the day and fall to my knees begging God to work a miracle here. 

It's all too close for comfort. Watching their video's describing their days at the Cleveland Clinic filled with up's and down's, bring rushing back all the emotions that flooded me during our stay.

 The scariest days of my life.

Less than 10 months ago,

but they seem like years ago.

So much has happened since then!

God has been very good to us.

 But He's a good God, and no matter His plans for us, he will always be good and loving. 

Ben ( Chaia's dad) said something in one of his video clips about believing in the character of God.

 It has stuck with me.

I just pray that God will choose to let her live a full life and receive glory through the medical miracle she can be.

If there is one thing that I HATE in this world, it is children suffering.

I see God using Chaia's story to draw me closer to Him though. He is a rock. The only One you can count on in a world gone mad.

              God brought this verse to mind tonight

concerning Chaia...

"Now unto him that is able to do EXCEEDING ABUNDANTLY above all that we ask or think, according to the power that worketh in us,".. 

[Ephesians 3:20]

Count your blessings. I'll be counting mine...

                                           Goodnight

You can click on this one to stay up-to-date on Chaia!!!

http://mustardrevolution.blogspot.com/2011_10_01_archive.html

For God hath not given us the spirit of fear, but of power, and of love and of a sound mind.

Well, you know what they say.."no news is good news." But i have missed blogging. I think i'm going to wean myself off Facebook and spend more quality time writing and recording my life between here and my journal. What do you think?

It's 2am but my mind is full and my heart is heavy. I was introduced via blog to another little family with a very sick 3 month old daughter, Chaia. She has a very, very rare genetic disease with only 108 (?) known cases ever! She is staying at the Cleveland Clinic, 1 floor below the one they had us on in January and then in March. She is adorable! The disease has affected different areas of her body but the biggest concern is her heart. They will be doing a PET scan tomorrow (Thursday) at 12:30pm to determine if she'll need a heart transplant or if the cells will rejuvenate themselves and make her heart stronger. It is pretty serious..thus heartwrenching. But I can testify of their amazingly strong faith. I love how when God is putting you through trials of fire His grace is overwhelming. I don't know how else we could get through it. Anyways, PLEASE, PLEASE pray for this angelic sweetie tomorrow particularly at 12:30pm. We don't even want to entertain the thought of what could happen, and we know without a doubt that God is more than capable of healing and restoring. Pray with me please. You can follow the dad's blog at mustardrevolution.blogspot.com

   I'm not sure what it is. Perhaps it's hitting the one year mark; reminiscing about that time of year when 9 months of waiting and loving this fluttering, kicking, hiccuping snuggle-bug actually came to an end and she was born. The first time I laid my eyes on her and the moment I finally got to hold her. Nursing her, our eyes locked on each other. Without a doubt, thee best day of my whole life. Or maybe it's because we're getting closer to the winter months, that time of year where I had the worst day of my life. The day the dr's informed us of Riley's diagnosis with TSC. The overwhelming fear of the unknown and something harming my baby. Me feeling completely helpless to protect her. Here's the bottom line. I'm scared. I feel like it's been too calm for too long. I know that's a waste of time, worrying; fearing something that I don't have to deal with yet, but i can't help it. That's what i hate about TSC. There is no cure. There is no remission. Tumors could be forming as I write.

   Riley IS doing pretty well actually. She never did get those feeding tubes. The next visit, she made the leap into the 15 lbs and Galen and I felt as long as she's gaining, we're not doing an invasive surgery. She hasn't been weighed at a dr's office for awhile. But last time she was 16 lbs. Most girls are 20 lbs by 1 year. Not our Riley. I weighed her on the scale with me today and it looked like 16.5lbs. I'm avoiding her pediatrician because he is gung-ho feeding tubes. She is skinny. There's no doubt about that. But i don't think she looks unhealthy. Her new nickname is "skinny-minnie" :). People are still shocked to hear how old she is when looking at her. :(

  Now here's some super-duper news! Riley is STILL seizure-free. 6 months, baby!! We are tapering Keppra. But after that is done she will only be on one med, Topamax. I wish it didn't affect her appetite so much... :-/ I honestly think, no, know how good we've had it these past months and I'm afraid I've gotten so accustomed to this norm. Sick kid? What? Where? The other day, i just thought back to what her seizures looked like. The pain, the discomfort, the confusion which quickly led to a loss of the few skills she had at the time such as smiling, cooing, and waving her arms. My baby has come soooo far! She is 12 months old and wearing 12 months clothes [major growth spurt UP]. I still have to use a safety pin to keep her pants up. she is walking along the furniture...al-most walk-ing! She smiles her face off...seriously! The sweetest, most affectious giggles. {Peek-a-boo is the bomb!} She still has not said anything. She makes noises enough but not what they'd expect at her age. There's some concern in this area because of where one of the tubors is located. It may be affecting her speech. She has until 18 months before they'll introduce speech therapy. Her physical therapist is a darling-dear! Riley loves her. She now comes every other week because Riley is not really considered behind anymore. She's not advanced by any means but nothing concerning.

    Well that's about it folks! Galen's still working like the hard-working man he is and I am loving fall and the slower pace that comes with it! We will be remodeling a couple rooms upstairs and rearranging our house a little before winter. My interior decorating side is cyked about that! Oh, and I will post pics of Riley's 1st birthday party...hopefully tomorrow. Ok, must retire now. Remember to pray for Chaia please! Love you!

(Rachel, I owe you big time girl! Have not forgotten about you!)