I can't help but laugh every time I watch this one!
Wednesday, March 20, 2013
Thursday, March 14, 2013
Our Trip to Pittsburgh
Thank you to all of you who had been praying for us while we traveled to Pittsburgh to see a vision specialist. We had a long, but well worth-it, trip! For the first time EVER, we left a doctor office feeling inspired, encouraged and excited for our Elena.
As a result of Elena's brain injury, she suffers from what is called a Cortical Visual Impairment (CVI). The structure of her eyes is all intact and healthy, but the part of her brain that interprets what her eyes see is damaged. Therefore, Elena is technically blind in the sense that she sees but has no idea what she is seeing. This doctor likened it to looking through a kaleidoscope. Elena's world is a mix of indistinguishable colors, shapes and patterns that she is unable to decipher. Fortunately, with lots of vision therapy, CVI can improve and Elena can learn to understand what she sees.
We've known for some time that Elena was suffering from CVI, though no doctor actually confirmed this for us until our trip to Pittsburgh. Dr. Christine Roman is one of the leading researchers and specialists in the country on CVI. She was amazing. These kids are her passion and we got the sense that she has a vested interest in helping all her patients with CVI learn to see. She spent two hours with us, explaining what was happening with Elena, explaining CVI and testing Elena to see where she fell on the spectrum. Elena falls into Phase II (there are three phases, one being the most severe impairment, three being closest to "normal"). This was a huge encouragement as we expected her to still be in Phase I. We were amazed at what Dr. Roman got Elena to look and sustain her gaze upon. We had never seen Elena look at ANYTHING for longer than 2-3 seconds and she had her staring at objects! It was fascinating to watch.
Dr. Roman was really impressed with Elena's desire to be challenged and saw in the short time we were there how hard she works. We, of course, knew that but it made for a proud Momma to hear a professional confirm that. She also kept commenting on Elena's disposition. The only time she fussed during those two hours was when we took away something she had been looking at...meaning she wanted MORE!
We are recharged and eager to begin integrating new tasks and targets into our every day routines to help Elena see. Dr. Roman shared that she felt Elena was going to make really great progress. When we are so used to hearing doctor after doctor tell us what Elena WON'T be able to do, this was a welcome reprieve. Dr. Roman gave us options, encouragement to persevere when other doctors had told us to "wait and see". We will not "wait and see" with Elena. We will continue to work hard, challenge her and give our precious girl every opportunity to reach her full potential, whatever that may be.
Here's a few pictures of our girl of late!
.JPG)
As a result of Elena's brain injury, she suffers from what is called a Cortical Visual Impairment (CVI). The structure of her eyes is all intact and healthy, but the part of her brain that interprets what her eyes see is damaged. Therefore, Elena is technically blind in the sense that she sees but has no idea what she is seeing. This doctor likened it to looking through a kaleidoscope. Elena's world is a mix of indistinguishable colors, shapes and patterns that she is unable to decipher. Fortunately, with lots of vision therapy, CVI can improve and Elena can learn to understand what she sees.
We've known for some time that Elena was suffering from CVI, though no doctor actually confirmed this for us until our trip to Pittsburgh. Dr. Christine Roman is one of the leading researchers and specialists in the country on CVI. She was amazing. These kids are her passion and we got the sense that she has a vested interest in helping all her patients with CVI learn to see. She spent two hours with us, explaining what was happening with Elena, explaining CVI and testing Elena to see where she fell on the spectrum. Elena falls into Phase II (there are three phases, one being the most severe impairment, three being closest to "normal"). This was a huge encouragement as we expected her to still be in Phase I. We were amazed at what Dr. Roman got Elena to look and sustain her gaze upon. We had never seen Elena look at ANYTHING for longer than 2-3 seconds and she had her staring at objects! It was fascinating to watch.
Dr. Roman was really impressed with Elena's desire to be challenged and saw in the short time we were there how hard she works. We, of course, knew that but it made for a proud Momma to hear a professional confirm that. She also kept commenting on Elena's disposition. The only time she fussed during those two hours was when we took away something she had been looking at...meaning she wanted MORE!
We are recharged and eager to begin integrating new tasks and targets into our every day routines to help Elena see. Dr. Roman shared that she felt Elena was going to make really great progress. When we are so used to hearing doctor after doctor tell us what Elena WON'T be able to do, this was a welcome reprieve. Dr. Roman gave us options, encouragement to persevere when other doctors had told us to "wait and see". We will not "wait and see" with Elena. We will continue to work hard, challenge her and give our precious girl every opportunity to reach her full potential, whatever that may be.
Here's a few pictures of our girl of late!
.JPG)
Here she is at "school" sitting like a big girl!
Our little traveler!
Here she is with her cute hat courtesy of Fishies of Hope!
Riding horsey at the Ledfords (I have a feeling one of these may be in her Easter basket!)
Tuesday, March 5, 2013
Ok, Ok!
Alright, already! Can these devotionals be any more direct?! :) Here was today's email.....
"Either He Planned It or He Permitted It"
Most of us would agree that life's trials can feel like a punishment. Major disruptions seem like they're meant to make us miserable. The truth is, God transforms us with each trial we experience. He is removing the "dross" or imperfections from us. Each time we survive a major ordeal we grow stronger, wiser, more prepared for the next challenge. We are conquerors and overcomers with God's help.
Ordeals, hardships, distresses are permitted by God for our perfection. Either He permits them or He plans them. If God has intentionally laid out a troublesome path for us, He has a purpose.
But it's not always about us. God might place pain, suffering or distraction on our path to teach others about His love, steadfastness, and mercies. The way we react to stress reflects what we believe about God, and allows others to see His faithfulness.
Few of us are immune to desperate circumstances. But sometimes they are the best way for God to perfect us. He wants to display us as His showpiece to give the world hope. We don't always feel good about God's higher ways. They hurt. They stretch. I know. I have felt the pain, the pull, the piercing agony.
However, if God plans my circumstances, then I have to trust He has a purpose. I believe He sends "assignments" so we can show the world that He is worthy to trust and has good plans. If I model confidence in Him, I'm announcing to the world, with my actions and attitude, our great God knows exactly what He is doing with my life.
Nothing compares to knowing and trusting the Lord is in control ... especially when everything around me feels unstable. He won't permit or plan something difficult for us to walk through without having a greater purpose behind it. One that will make us holier, more like Him, and shine His glory. Our experience is not in vain!
Proverbs 31 Ministries
Ummmm, can I get an AMEN?
"Either He Planned It or He Permitted It"
Most of us would agree that life's trials can feel like a punishment. Major disruptions seem like they're meant to make us miserable. The truth is, God transforms us with each trial we experience. He is removing the "dross" or imperfections from us. Each time we survive a major ordeal we grow stronger, wiser, more prepared for the next challenge. We are conquerors and overcomers with God's help.
Ordeals, hardships, distresses are permitted by God for our perfection. Either He permits them or He plans them. If God has intentionally laid out a troublesome path for us, He has a purpose.
But it's not always about us. God might place pain, suffering or distraction on our path to teach others about His love, steadfastness, and mercies. The way we react to stress reflects what we believe about God, and allows others to see His faithfulness.
Few of us are immune to desperate circumstances. But sometimes they are the best way for God to perfect us. He wants to display us as His showpiece to give the world hope. We don't always feel good about God's higher ways. They hurt. They stretch. I know. I have felt the pain, the pull, the piercing agony.
However, if God plans my circumstances, then I have to trust He has a purpose. I believe He sends "assignments" so we can show the world that He is worthy to trust and has good plans. If I model confidence in Him, I'm announcing to the world, with my actions and attitude, our great God knows exactly what He is doing with my life.
Nothing compares to knowing and trusting the Lord is in control ... especially when everything around me feels unstable. He won't permit or plan something difficult for us to walk through without having a greater purpose behind it. One that will make us holier, more like Him, and shine His glory. Our experience is not in vain!
Proverbs 31 Ministries
Ummmm, can I get an AMEN?
Monday, March 4, 2013
Don't YOU worry!
Yes, I'm still here. I'm not hunkered down under the covers. I'm not wallowing each day in negativity. I know my last post wasn't Polly Positivity, but guess what, neither is life. This blog serves as an outlet for my emotions and an honest description of what our journey really is. I would be lying to you if every time I posted I talked about how amazing is this, and how wonderful is that. The truth is, this journey sometimes REALLY sucks. And sometimes we feel so blessed. Like I said, there are highs and lows. I wouldn't be very honest if I only shared the highs.
The last couple weeks have still been tough. Elena is still struggling through never-ending issues. And so are we. But, God knows all this. He's thrown in a little inspiration here and there the last couple weeks.
One is Chad. Man, he's a good one! When I'm down, he is so good about picking me back up. He is so calm and patient with me when I'm upset about something. He quietly reminds me how amazing our little girl is, how we are all in this together and that doctors are silly. :) He always knows just what to say to get me to pull it together. And he hates attention like this, so I'd better stop going on about him before I make him blush. Ha!
I recently subscribed to a daily devotional email. The other day, Elena and I were melting down after two doctor appointments, where one was telling me what would be "impossible" for Elena to achieve. I came home to my daily devotional on "Tearing Down the Impossible". This is a snippet...
I don't know what impossibility you might be facing.
But remember - all impossibilities have a weak spot. It's there. Ask God to show you where it is. Ask God for just enough strength to attack there. Tear it down one good decision at a time.
And soon it will be clear, inside every impossible is the word "possible"... if only we dare to see it.
If we allow it, our waiting will bring us to an intimate knowledge of God that we would not otherwise have. Most of David's beautiful and poetic psalms were written while in caves, caverns, and the wilderness, waiting on God.
God does not ignore the cries of His children. David cried and begged God for help, intervention, and defense. God never let David down.
Our waiting has a purpose for someone other that ourselves. It's not all about us. Just think of how rich our lives are today because of the wait David endured. We have the comfort, compassion, hope, and healing of the Psalms.
What awesome instructions David's life gives for waiting! Waiting is less difficult and the future is brighter when we let God do His work in our waiting season. When we let our guard and defenses down, we're open to seeing how faithful He is to bring His plans for our lives to fullness.
The last couple weeks have still been tough. Elena is still struggling through never-ending issues. And so are we. But, God knows all this. He's thrown in a little inspiration here and there the last couple weeks.
One is Chad. Man, he's a good one! When I'm down, he is so good about picking me back up. He is so calm and patient with me when I'm upset about something. He quietly reminds me how amazing our little girl is, how we are all in this together and that doctors are silly. :) He always knows just what to say to get me to pull it together. And he hates attention like this, so I'd better stop going on about him before I make him blush. Ha!
I recently subscribed to a daily devotional email. The other day, Elena and I were melting down after two doctor appointments, where one was telling me what would be "impossible" for Elena to achieve. I came home to my daily devotional on "Tearing Down the Impossible". This is a snippet...
"You don't have enough faith,' Jesus told them. 'I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." Matthew 17:20 (NLV)
But remember - all impossibilities have a weak spot. It's there. Ask God to show you where it is. Ask God for just enough strength to attack there. Tear it down one good decision at a time.
And soon it will be clear, inside every impossible is the word "possible"... if only we dare to see it.
Boom. I immediately declared that I WILL find the weak spot and attack.
Today's devotional was "There is Purpose in the Wait" about David's waiting for God's purpose in his life. And man, do we wait around here. Elena's progress is slow. We work and work and wait and wait. I can't tell you how often we hear that "we will just have to wait and see". Elena has no "prognosis". It is all work hard and "wait and see". So, obviously this one hit home.
"Wait for the LORD; be strong and take heart and wait for the LORD." Psalm 27:14 (NLT)
God does not ignore the cries of His children. David cried and begged God for help, intervention, and defense. God never let David down.
Our waiting has a purpose for someone other that ourselves. It's not all about us. Just think of how rich our lives are today because of the wait David endured. We have the comfort, compassion, hope, and healing of the Psalms.
What awesome instructions David's life gives for waiting! Waiting is less difficult and the future is brighter when we let God do His work in our waiting season. When we let our guard and defenses down, we're open to seeing how faithful He is to bring His plans for our lives to fullness.
So don't you worry about us. Even though we have tough days, we have great days too. We are being taken care of each and every day, whether we recognize it or not.
You can subscribe to the free daily devotionals that I do HERE.