Monday, October 31, 2011
John 11...When the tears fall.
It's something like day 37 of this 'new normal' of life in the hospital. We've shared a lot of the highs and lows in this process. Lots of pictures from Chaia's good days. Bumblebee pictures that melt your heart...unless you don't have a soul.
But let me be honest. Some days you just feel as if you will be swallowed up. Today was one of those days. And it is strange, because Chaia had a relatively good day. But, here we sit, feeling sadness. Thick, tangible, consuming sadness.
It isn't because we're hopeless. I have all my hope set on Jesus and what He is doing.
It isn't because Chaia is losing. She is actually doing surprisingly well.
It isn't because our faith is slipping. It isn't because we are caught in sin.
It is simply because things are not right. And it makes for some very sad moments. We spend our day in a room where a little one suffers and battles for her life, on a floor where many others are doing the same thing. Some make it. Some don't.
Sadness is ok. Because things are not right. And this is sad.
I've thought of John 11 quite a bit in this journey. The story of Lazarus dying and Jesus defying everyone's expectations, the disciples, Mary and Martha, the Jewish onlookers...And even though Jesus does something astonishing at the end of the chapter, he first enters into the sadness. He weeps. Lazarus is dead and it is sad.
Chaia is sick and it is sad. Jack is sick and it is sad. Justin and Malachi and Breanna and Chase and Garrett and Odin...sad.
I think I've shied away from the sadness in sharing this journey on the blog. Not sure if it is out of guilt or trying to remain hopeful or upbeat...or something else...but here is the reality. This is sad and that is okay.
When we enter into the sadness...when we engage the heartwrenching pain...it is where Jesus often meets us and rolls away the stones.
Time and time again. God shows up in the saddest of situations in the Bible. And He puts His glory on display.
He is doing that in the PICU at the Cleveland Clinic.
And He will do it with your life as well. Just enter into the sadness and ask Jesus to roll away the stones.
Keep the Prayers Coming
I don't have an extensive update right now on our buddy Jack. He is in need of continued prayers overnight as he's still working to bounce back after his surgery.
Chaia has had a moderately good day. She is being weaned off of her CPAP pressures and so far she is tolerating it. Pray for her heartrate and that she would get some rest as she is a crazy lady today.
Jesus has a word for us today.
Matthew 6:25-34
Read it. Pray it. Own it.
Chaia has had a moderately good day. She is being weaned off of her CPAP pressures and so far she is tolerating it. Pray for her heartrate and that she would get some rest as she is a crazy lady today.
Jesus has a word for us today.
Matthew 6:25-34
Read it. Pray it. Own it.
Sunday, October 30, 2011
5 Things--Monday Edition
1. Thanks so much for praying for Jack and the family. Monday is a marathon for them beginning early in the morning. Tonight (Sunday), Jack's older sister surprised him (and mom) by flying in to be here for the surgery. Pretty amazing. Not only did we hit and surpass our goal of 100 prayers for Jack, we brought a little taste of Ireland to Cleveland.
2. This is Chaia in her Halloween outfit. We bought this before she got sick. It is hard to believe we are in our 6th week of this crisis. And yet here she is...bumbling around.
3. Our church in Wadsworth wrapped up a series this weekend called CHANGE YOUR WORLD. Everyone in the church was given money, $5000 total...and we were challenged to go out and multiply that money for God's glory. Read Matthew 25 to get an idea. Well the goal was to triple that amount and the preliminary word is that we brought in over $16,000! This money will go to 6 different initiatives. 1. Rebuilding Joplin, Missouri ("For I was a stranger and you welcomed me") 2. Freeing 5 women/girls from human trafficking in Mali Africa ("For I was imprisoned and you came to me.") 3. Clean Water system in Bolivia ("For I was thirsty and you gave me something to drink") 4. Grocery gift cards to help the under resourced in Wadsworth ("For I was hungry and you gave me something to eat") 5. Medicine for a clinic in Sierra Leone Africa ("For I was sick and you cared for me.") 6. And bedding for under resourced families in northeast Ohio ("For I was naked and you clothed me.") At RISE: Bombarding the Heavens, we took Chaia's $5 and asked you to help her multiply it. She turned her $5 that night into $650!
4. We have a long road ahead of us here at the Clinic. If Chaia continues to hang on, I think we are looking at weeks if not months. Time will tell. We couldn't do this without you guys walking with us. This can feel incredibly lonely at times but then we see the support on this blog and on facebook and the visitors and the mail and we are able to hang on.
5. Jesus is LORD. A friend referred me back to this post that I wrote on here in February, while Shaina was pregnant with Chaia. He has been preparing our hearts for this moment for months and years and I say now with all that is in me. Jesus is Lord and His fame is our aim. No matter the cost.
2. This is Chaia in her Halloween outfit. We bought this before she got sick. It is hard to believe we are in our 6th week of this crisis. And yet here she is...bumbling around.
3. Our church in Wadsworth wrapped up a series this weekend called CHANGE YOUR WORLD. Everyone in the church was given money, $5000 total...and we were challenged to go out and multiply that money for God's glory. Read Matthew 25 to get an idea. Well the goal was to triple that amount and the preliminary word is that we brought in over $16,000! This money will go to 6 different initiatives. 1. Rebuilding Joplin, Missouri ("For I was a stranger and you welcomed me") 2. Freeing 5 women/girls from human trafficking in Mali Africa ("For I was imprisoned and you came to me.") 3. Clean Water system in Bolivia ("For I was thirsty and you gave me something to drink") 4. Grocery gift cards to help the under resourced in Wadsworth ("For I was hungry and you gave me something to eat") 5. Medicine for a clinic in Sierra Leone Africa ("For I was sick and you cared for me.") 6. And bedding for under resourced families in northeast Ohio ("For I was naked and you clothed me.") At RISE: Bombarding the Heavens, we took Chaia's $5 and asked you to help her multiply it. She turned her $5 that night into $650!
4. We have a long road ahead of us here at the Clinic. If Chaia continues to hang on, I think we are looking at weeks if not months. Time will tell. We couldn't do this without you guys walking with us. This can feel incredibly lonely at times but then we see the support on this blog and on facebook and the visitors and the mail and we are able to hang on.
5. Jesus is LORD. A friend referred me back to this post that I wrote on here in February, while Shaina was pregnant with Chaia. He has been preparing our hearts for this moment for months and years and I say now with all that is in me. Jesus is Lord and His fame is our aim. No matter the cost.
Saturday, October 29, 2011
A Fellow Clinic Warrior
Some of you have been praying for him...sending him cards and wrestling merchandise. Now its time to meet him.
This is Jack.
He's a rock star that is about to kick the pants off of a brain surgery this Monday. He has epilepsy and has had three other brain surgeries to get to this point. On Thursday the doctors determined that he would probably lose his speech completely. On Friday, they came back and said that they think they can salvage his speech. It is a really big day for the Kelly Family.
I need you mustard revolutionaries to pray for this warrior and his family.
Older sister Mikayla (not pictured)...who is holding down the fort back in Ireland.
Younger brother Luke...future star striker for Arsenal.
Younger sister Alex...brilliant smile, just lost a tooth yesterday!
Mom Nikki...who has somehow raised smashing kids even with Mick as her mate
Dad Mick...the worst golfer in Ireland...but he's fluent in 14 languages (just ask him!)
and Jack...the next Stonecold Steve Austin.
I'm asking you all to post a prayer on here over the weekend for this family. They are linked in to this blog and they need us on our knees for Jack's big day on Monday. Goal is 100 prayers posted by the time Jack goes into surgery on Monday morning at 7:00 a.m.
This is Jack.
He's a rock star that is about to kick the pants off of a brain surgery this Monday. He has epilepsy and has had three other brain surgeries to get to this point. On Thursday the doctors determined that he would probably lose his speech completely. On Friday, they came back and said that they think they can salvage his speech. It is a really big day for the Kelly Family.
I need you mustard revolutionaries to pray for this warrior and his family.
Older sister Mikayla (not pictured)...who is holding down the fort back in Ireland.
Younger brother Luke...future star striker for Arsenal.
Younger sister Alex...brilliant smile, just lost a tooth yesterday!
Mom Nikki...who has somehow raised smashing kids even with Mick as her mate
Dad Mick...the worst golfer in Ireland...but he's fluent in 14 languages (just ask him!)
and Jack...the next Stonecold Steve Austin.
I'm asking you all to post a prayer on here over the weekend for this family. They are linked in to this blog and they need us on our knees for Jack's big day on Monday. Goal is 100 prayers posted by the time Jack goes into surgery on Monday morning at 7:00 a.m.
Thankful for the Little Things
Grandma Penrod started a list of small things that were taking place to set up a Miracle in Chaia's heart.
I wanted to do a list this morning while Chaia and mama are grinning at each other.
Because our need for God in the good times is just as great as our need for Him in the bad times.
So off the top of my head, I'm shooting for 25 little things that have gotten us to today.
1. Thankful that Chaia is off the Bair Hugger which means she can regulate her own temperature.
2. Thankful that we got transported to Cleveland Clinic, where a geneticist who specializes in rare genetic diseases worked and had read about GACI.
3. Thankful that the director of nurses in the ICU has never seen a room like Chaia's. She's worked here for 30 years.
4. Thankful that the third extubation has been the charm so far.
5. Thankful for finger puppets.
6. Thankful for Ronnie Mac's where we've had a place to escape and even met some new friends. Thankful for you all paying for our room through November and into December.
7. Thankful that Chaia has responded well to three blood transfusions.
8. Thankful that Chaia has been able to continue to take mama's milk and has the thunder thighs to prove it.
9. Thankful that the pomidronate has been tolerated well by Chaia's body and is hopefully reversing the calcification as we speak.
10. Thankful 35 states, 9 countries and 6 continents praying for this little warrior (Welcome on board Australia and Nepal!)
11. Thankful that all indications are that her heart damage has been contained and isn't continuing to expand.
12. Thankful that Chaia's ART-Line did what it needed to. Thankful for Dr. Wendorf at Akron Childrens who was successfully able to get it in.
13. Thankful for the nurses at Akron Childrens and Cleveland Clinic who do more than put in shifts...they enter in and walk with us. They even pray for us.
14. Thankful for the Seattle Seahawks (who'd have ever thought anyone in their right mind would say that?)
15. Thankful for gummy grins while intubated which apparently doesn't happen very often. And now gummy grins with CPAP, which doesn't happen very often either.
16. Thankful for the PIC Line in Chaia's arm that has worked well.
17. Thankful we are off the Epinephrine
18. Thankful that God has counted us worthy of such a thing as this.
19. Thankful for Gungor. That their new album has echoed in our hearts and brought hope to hopeless places.
20. Thankful for Bombarding the Heavens...and all those who made that night so powerful.
21. Thankful for our families who have walked with us through the valleys and rejoiced with us on the mountain tops, in the hospital and across the country.
22. Thankful that this disease hasn't touched Chaia's brain...with me as her dad...she already is at a disadvantage in the brain department...we need all the help we can get in that area.
23. Thankful for God's Word that brings verses like Ezekiel 36:26 into our lives at just the right time.
24. Thankful for the meals and Au Bon Pain gift cards and financial gifts that have been given to us...Thankful for friends doing our laundry, cleaning our house, bringing our mail, doing our financial aid paperwork/advocacy.
25. Thankful that Jesus has conquered the grave and that means the worst things are never the last things.
I wanted to do a list this morning while Chaia and mama are grinning at each other.
Because our need for God in the good times is just as great as our need for Him in the bad times.
So off the top of my head, I'm shooting for 25 little things that have gotten us to today.
1. Thankful that Chaia is off the Bair Hugger which means she can regulate her own temperature.
2. Thankful that we got transported to Cleveland Clinic, where a geneticist who specializes in rare genetic diseases worked and had read about GACI.
3. Thankful that the director of nurses in the ICU has never seen a room like Chaia's. She's worked here for 30 years.
4. Thankful that the third extubation has been the charm so far.
5. Thankful for finger puppets.
6. Thankful for Ronnie Mac's where we've had a place to escape and even met some new friends. Thankful for you all paying for our room through November and into December.
7. Thankful that Chaia has responded well to three blood transfusions.
8. Thankful that Chaia has been able to continue to take mama's milk and has the thunder thighs to prove it.
9. Thankful that the pomidronate has been tolerated well by Chaia's body and is hopefully reversing the calcification as we speak.
10. Thankful 35 states, 9 countries and 6 continents praying for this little warrior (Welcome on board Australia and Nepal!)
11. Thankful that all indications are that her heart damage has been contained and isn't continuing to expand.
12. Thankful that Chaia's ART-Line did what it needed to. Thankful for Dr. Wendorf at Akron Childrens who was successfully able to get it in.
13. Thankful for the nurses at Akron Childrens and Cleveland Clinic who do more than put in shifts...they enter in and walk with us. They even pray for us.
14. Thankful for the Seattle Seahawks (who'd have ever thought anyone in their right mind would say that?)
15. Thankful for gummy grins while intubated which apparently doesn't happen very often. And now gummy grins with CPAP, which doesn't happen very often either.
16. Thankful for the PIC Line in Chaia's arm that has worked well.
17. Thankful we are off the Epinephrine
18. Thankful that God has counted us worthy of such a thing as this.
19. Thankful for Gungor. That their new album has echoed in our hearts and brought hope to hopeless places.
20. Thankful for Bombarding the Heavens...and all those who made that night so powerful.
21. Thankful for our families who have walked with us through the valleys and rejoiced with us on the mountain tops, in the hospital and across the country.
22. Thankful that this disease hasn't touched Chaia's brain...with me as her dad...she already is at a disadvantage in the brain department...we need all the help we can get in that area.
23. Thankful for God's Word that brings verses like Ezekiel 36:26 into our lives at just the right time.
24. Thankful for the meals and Au Bon Pain gift cards and financial gifts that have been given to us...Thankful for friends doing our laundry, cleaning our house, bringing our mail, doing our financial aid paperwork/advocacy.
25. Thankful that Jesus has conquered the grave and that means the worst things are never the last things.
Friday, October 28, 2011
Redefining "Good Day"
Not much to report today. Chaia is stable. Had a good day. Was awake a ton, and calm. It is amazing the roller coaster from thinking you may have hours left with your child to being allowed to dream again about days, weeks, months and even years.
Next steps are to wean off the cpap. If she can do that, then we'll see if her body is again capable of self-sustaining. So many hurdles...Weaning Milrinone and Versed and Fetanyl and then obviously the Pomidronate needs to work at de-calcifying her body, which we won't know whether this is happening significantly for at the minimum another month.
Again this journey has essentially 9 out of 10 scenarios panning out that are bleak. But we have a God who likes those kinds of odds.
Short term. We rest and go back and enjoy Chaia for the weekend and see if we can keep hangin' on. Today was hopeful. And Romans 5 talks about how suffering if done well, will lead to hope. It is very hard some days to do this well.
Tomorrow, if things work out well. I will introduce you to a friend of mine.
Next steps are to wean off the cpap. If she can do that, then we'll see if her body is again capable of self-sustaining. So many hurdles...Weaning Milrinone and Versed and Fetanyl and then obviously the Pomidronate needs to work at de-calcifying her body, which we won't know whether this is happening significantly for at the minimum another month.
Again this journey has essentially 9 out of 10 scenarios panning out that are bleak. But we have a God who likes those kinds of odds.
Short term. We rest and go back and enjoy Chaia for the weekend and see if we can keep hangin' on. Today was hopeful. And Romans 5 talks about how suffering if done well, will lead to hope. It is very hard some days to do this well.
Tomorrow, if things work out well. I will introduce you to a friend of mine.
A New Look
Good news. The tests overnight revealed another positive trend and she is not intubated as of 8:30 this morning.
Instead she remains on CPAP, which sort've resembles a yellow billed blue bird.
Make fun of this kid and I'll come after you.
My name is Chaia. My parents have mutated genes. But I'm still freakin' cute.
Instead she remains on CPAP, which sort've resembles a yellow billed blue bird.
Make fun of this kid and I'll come after you.
My name is Chaia. My parents have mutated genes. But I'm still freakin' cute.
Thursday, October 27, 2011
Parenting for Dummies Part Two
First, Chaia has had a rough day. She was heading pretty assuredly toward re-intubation which is not great. But there is silver-lining in that...she was heading there because her respiratory system was failing...not her cardiac system...so her heart is ok right now. And because of that we can re-intubate if necessary.
But, they took some tests at 7 p.m. and the results were markedly turned toward the positive, so now we are holding off until the next round of tests at 1 a.m. to see if they think she can continue to battle on her own.
Second. Chaia is not ours. She is a gift. I mean that. It is God who gives life. So the work of parenting is pretty simple. If you commit yourself to the primary work of parenting, you will do well for yourself and for your kids.
Your primary work as a parent isn't friendship. You'll never be cool. You're old.
Your primary work as a parent isn't success. Even if they make great money, they won't give it back to you anyways...Because you're not cool and you're old.
Your primary work as a parent isn't to make them responsible adults. There's no such thing...just a bunch of posers who'd rather be playing with Legos.
Your primary work as a parent isn't "to give them every chance you never had." If you are doing that with your kid...everyone else around your kid hates your kid and hates you for spoiling your kid. (Learn to say "no")
Your primary work as a parent isn't any of these things...Instead it is STEWARDSHIP. In fact your whole life's work should be an act of stewardship. God gifts you with children, with money, with that breath you just took, with friends, with family, with food, with opportunities...and the whole point of those gifts is that you might let them roll right back up to God in thanksgiving and glory.
But in our brokeness, we take these things and distort them...and instead of rolling them back up to the giftgiver, we turn them inward toward ourselves. So money isn't stewarded...it turns into greed and consumerism. Food isn't stewarded...it turns into gluttony or apathy. Children aren't stewarded...they are turned into idols we live vicariously through.
I wrote Chaia a letter the other day before her extubation and I just remember this line that jumped off the pages of my heart. "Your mom and I love you so much...more than words can describe...but we don't love you THAT MUCH. So much that we would make you the center of our lives. So much that we would gain you and lose our souls. So much that you could become an idol. We don’t love you that much, and it is the greatest gift we can give you."
Chaia isn't, wasn't and will never be ours. She is a gift and she belongs to God.
That is what it means to follow Christ...to turn everything about our lives to Him in worship...no matter the cost.
It's better that way. With all that is in us, we know this to be true.
But, they took some tests at 7 p.m. and the results were markedly turned toward the positive, so now we are holding off until the next round of tests at 1 a.m. to see if they think she can continue to battle on her own.
Second. Chaia is not ours. She is a gift. I mean that. It is God who gives life. So the work of parenting is pretty simple. If you commit yourself to the primary work of parenting, you will do well for yourself and for your kids.
Your primary work as a parent isn't friendship. You'll never be cool. You're old.
Your primary work as a parent isn't success. Even if they make great money, they won't give it back to you anyways...Because you're not cool and you're old.
Your primary work as a parent isn't to make them responsible adults. There's no such thing...just a bunch of posers who'd rather be playing with Legos.
Your primary work as a parent isn't "to give them every chance you never had." If you are doing that with your kid...everyone else around your kid hates your kid and hates you for spoiling your kid. (Learn to say "no")
Your primary work as a parent isn't any of these things...Instead it is STEWARDSHIP. In fact your whole life's work should be an act of stewardship. God gifts you with children, with money, with that breath you just took, with friends, with family, with food, with opportunities...and the whole point of those gifts is that you might let them roll right back up to God in thanksgiving and glory.
But in our brokeness, we take these things and distort them...and instead of rolling them back up to the giftgiver, we turn them inward toward ourselves. So money isn't stewarded...it turns into greed and consumerism. Food isn't stewarded...it turns into gluttony or apathy. Children aren't stewarded...they are turned into idols we live vicariously through.
I wrote Chaia a letter the other day before her extubation and I just remember this line that jumped off the pages of my heart. "Your mom and I love you so much...more than words can describe...but we don't love you THAT MUCH. So much that we would make you the center of our lives. So much that we would gain you and lose our souls. So much that you could become an idol. We don’t love you that much, and it is the greatest gift we can give you."
Chaia isn't, wasn't and will never be ours. She is a gift and she belongs to God.
That is what it means to follow Christ...to turn everything about our lives to Him in worship...no matter the cost.
It's better that way. With all that is in us, we know this to be true.
Chaia Joy Thompson Fund
Some have inquired about contributing toward a fund in Chaia's name. It's not expected by any means, but, word on the street is that a week at Akron Childrens, over a month at Cleveland Clinic, an ambulance ride and a helicopter ride will end up costing more than 10 or 20 dollars.
If you have been seeking this information, its here.
The Chaia Joy Thompson Fund
First Merit Bank
102 Main Street
Wadsworth, OH 44281
You can send it by mail or drop it off at the bank.
If you have been seeking this information, its here.
The Chaia Joy Thompson Fund
First Merit Bank
102 Main Street
Wadsworth, OH 44281
You can send it by mail or drop it off at the bank.
Goliath strikes back
Chaia began to labor in her breathing around 5:00 a.m. this morning.
Her CO2 levels are high which means she isn't sustaining as well as she needs to in her breathing.
The vent (R2D2) is turned back on. She is hooked up to CPAP to see if this will help her with breathing.
If it doesn't, we're looking at reintubation. (Insert heavy sighs and tears here.)
The potential positive is that the doctors are fairly certain it is not her heart that is causing the respiratory failure...so they think with some more time her breathing muscles could strengthen back up and she might be able to try again.
This part of the journey is called One step forward, three steps back.
This part is excruciatingly draining.
p.s. Update on Jack! He had his preliminary surgery and is doing well. October 31 is his major surgery on his brain. Please keep him and his family in your prayers.
Her CO2 levels are high which means she isn't sustaining as well as she needs to in her breathing.
The vent (R2D2) is turned back on. She is hooked up to CPAP to see if this will help her with breathing.
If it doesn't, we're looking at reintubation. (Insert heavy sighs and tears here.)
The potential positive is that the doctors are fairly certain it is not her heart that is causing the respiratory failure...so they think with some more time her breathing muscles could strengthen back up and she might be able to try again.
This part of the journey is called One step forward, three steps back.
This part is excruciatingly draining.
p.s. Update on Jack! He had his preliminary surgery and is doing well. October 31 is his major surgery on his brain. Please keep him and his family in your prayers.
Wednesday, October 26, 2011
David 1...Goliath 0
So the Vent is off.
31 days on the vent.
Now one day off.
We are by no means out of the woods. She needs to remain stable over night. This David and Goliath is a 12 round fight...not a one stone throw.
So we sit and wait.
We stare at a screen of numbers, hoping respiratory rates remain stable...heart rates remain stable...blood pressures remain stable...pulse-oxes remain stable. So far so good.
Meet Goliath 1
Affectionately known as R2D2, Chaia just beat the tar out of this Goliath. May he Rest in Peace.
Here are just a couple pics from the rest of the afternoon/evening.
Chaia was a little wild with her heart rate and breathing after extubation, but a little bit of mama holdin' her and a bit of dad playing guitar and she was back down where she should be.
David 1...Goliath 0
Round Two going on right now.
Chaia wins when we kneel...its not a catchy phrase, it is the irrefutable truth.
Please don't stop.
31 days on the vent.
Now one day off.
We are by no means out of the woods. She needs to remain stable over night. This David and Goliath is a 12 round fight...not a one stone throw.
So we sit and wait.
We stare at a screen of numbers, hoping respiratory rates remain stable...heart rates remain stable...blood pressures remain stable...pulse-oxes remain stable. So far so good.
Meet Goliath 1
Affectionately known as R2D2, Chaia just beat the tar out of this Goliath. May he Rest in Peace.
Here are just a couple pics from the rest of the afternoon/evening.
Chaia was a little wild with her heart rate and breathing after extubation, but a little bit of mama holdin' her and a bit of dad playing guitar and she was back down where she should be.
David 1...Goliath 0
Round Two going on right now.
Chaia wins when we kneel...its not a catchy phrase, it is the irrefutable truth.
Please don't stop.
Tuesday, October 25, 2011
Monday, October 24, 2011
Remember July?
I just scanned back in my blog to the day Chaia was born and how we came up with her name.
You can read that here
You can see her very first pictures here
And then there was this post from July 18 that still tugs at my heart. And for the record, that is still the prayer we pray...even now. (Though we might change it up for any future kids...I kid.)
I share these from July...because in my mind, they give glimpses to where we've gotten to in October. It is remarkable to think of the hand of God orchestrating this from scene to scene...And now we move toward the pivotal scene in this story. The next 48 hours are exhillarating, terrifying, peace-filled and unsettling.
We're in Gethsemane friends...and the prayers here are agonizing.
You can read that here
You can see her very first pictures here
And then there was this post from July 18 that still tugs at my heart. And for the record, that is still the prayer we pray...even now. (Though we might change it up for any future kids...I kid.)
I share these from July...because in my mind, they give glimpses to where we've gotten to in October. It is remarkable to think of the hand of God orchestrating this from scene to scene...And now we move toward the pivotal scene in this story. The next 48 hours are exhillarating, terrifying, peace-filled and unsettling.
We're in Gethsemane friends...and the prayers here are agonizing.
Prayers from the nations...and from the generations
Here's what we know.
Prayers have and are being raised from
Alabama
Iowa
Maine
Wyoming
Connecticut
Oregon
Kansas
Hawaii
Utah
Virginia
Colorado
Ohio
Michigan
Florida
Maryland
New Jersey
Indiana
Washington
Georgia
Texas
Wisconsin
Kentucky
Illinois
North Carolina
South Carolina
Missouri
Minnesota
Pennsylvania
California
New York
West Virginia
Washington D.C.
And
Kenya
South Africa
Germany
England
Brazil
and Canada
32 states, 7 countries, 4 continents and one district.
And people of all ages. Saints from their 90s all the way down to Molly, who is almost 4 from Mayfield, Ohio. We don't know Molly. But we like her, alot.
Even the nurses at the Cleveland Clinic are rallying around this little girl.
And This is Megan.
She takes care of Chaia over night and is awesome...except for one character flaw. She is a Steelers Fan. But she knew she was taking care of Chaia and that Chaia's room has a lot of brown and orange. So Megan, despite the shame and ridicule she will receive from the people of darkness to our east, put on the colors of the Brown Knights to be in solidarity with Chaia. And she signed up for a half hour shift in our interVENTion.
Thank you for praying without ceasing. Chaia's down to 10 breaths...now they begin to wean other key numbers over the next few days. It's go time.
Prayers have and are being raised from
Alabama
Iowa
Maine
Wyoming
Connecticut
Oregon
Kansas
Hawaii
Utah
Virginia
Colorado
Ohio
Michigan
Florida
Maryland
New Jersey
Indiana
Washington
Georgia
Texas
Wisconsin
Kentucky
Illinois
North Carolina
South Carolina
Missouri
Minnesota
Pennsylvania
California
New York
West Virginia
Washington D.C.
And
Kenya
South Africa
Germany
England
Brazil
and Canada
32 states, 7 countries, 4 continents and one district.
And people of all ages. Saints from their 90s all the way down to Molly, who is almost 4 from Mayfield, Ohio. We don't know Molly. But we like her, alot.
Even the nurses at the Cleveland Clinic are rallying around this little girl.
And This is Megan.
She takes care of Chaia over night and is awesome...except for one character flaw. She is a Steelers Fan. But she knew she was taking care of Chaia and that Chaia's room has a lot of brown and orange. So Megan, despite the shame and ridicule she will receive from the people of darkness to our east, put on the colors of the Brown Knights to be in solidarity with Chaia. And she signed up for a half hour shift in our interVENTion.
Thank you for praying without ceasing. Chaia's down to 10 breaths...now they begin to wean other key numbers over the next few days. It's go time.
Sunday, October 23, 2011
interVENTion has begun
Listen to this:
While you read this:
I just spent the first half hour of this journey kneeling next to Chaia, holding her hand and pleading.
This story is weighing heavily on my heart tonight.
Mark 5:
21 When Jesus had again crossed over by boat to the other side of the lake, a large crowd gathered around him while he was by the lake. 22 Then one of the synagogue leaders, named Jairus, came, and when he saw Jesus, he fell at his feet. 23 He pleaded earnestly with him, “My little daughter is dying. Please come and put your hands on her so that she will be healed and live.” 24 So Jesus went with him.
35 While Jesus was still speaking, some people came from the house of Jairus, the synagogue leader. “Your daughter is dead,” they said. “Why bother the teacher anymore?”
36 Overhearing[c] what they said, Jesus told him, “Don’t be afraid; just believe.”
37 He did not let anyone follow him except Peter, James and John the brother of James. 38 When they came to the home of the synagogue leader, Jesus saw a commotion, with people crying and wailing loudly. 39 He went in and said to them, “Why all this commotion and wailing? The child is not dead but asleep.” 40 But they laughed at him.
After he put them all out, he took the child’s father and mother and the disciples who were with him, and went in where the child was. 41 He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”). 42 Immediately the girl stood up and began to walk around (she was twelve years old). At this they were completely astonished. 43 He gave strict orders not to let anyone know about this, and told them to give her something to eat.
GOD WOULD YOU SPEAK 'TALITHA KOUM' AND COMMAND THIS LITTLE GIRL TO RISE?! COMPLETELY ASTONISH THE BELIEVERS AND SKEPTICS ALIKE! BRING LIFE AND JOY TO THIS CHILD AND LEVERAGE HER LIFE FOR YOUR GLORY. GOD, GIVE US A CHANCE TO STEWARD HER LIFE TOWARD YOUR GLORY AND FAME.
While you read this:
I just spent the first half hour of this journey kneeling next to Chaia, holding her hand and pleading.
This story is weighing heavily on my heart tonight.
Mark 5:
21 When Jesus had again crossed over by boat to the other side of the lake, a large crowd gathered around him while he was by the lake. 22 Then one of the synagogue leaders, named Jairus, came, and when he saw Jesus, he fell at his feet. 23 He pleaded earnestly with him, “My little daughter is dying. Please come and put your hands on her so that she will be healed and live.” 24 So Jesus went with him.
35 While Jesus was still speaking, some people came from the house of Jairus, the synagogue leader. “Your daughter is dead,” they said. “Why bother the teacher anymore?”
36 Overhearing[c] what they said, Jesus told him, “Don’t be afraid; just believe.”
37 He did not let anyone follow him except Peter, James and John the brother of James. 38 When they came to the home of the synagogue leader, Jesus saw a commotion, with people crying and wailing loudly. 39 He went in and said to them, “Why all this commotion and wailing? The child is not dead but asleep.” 40 But they laughed at him.
After he put them all out, he took the child’s father and mother and the disciples who were with him, and went in where the child was. 41 He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”). 42 Immediately the girl stood up and began to walk around (she was twelve years old). At this they were completely astonished. 43 He gave strict orders not to let anyone know about this, and told them to give her something to eat.
GOD WOULD YOU SPEAK 'TALITHA KOUM' AND COMMAND THIS LITTLE GIRL TO RISE?! COMPLETELY ASTONISH THE BELIEVERS AND SKEPTICS ALIKE! BRING LIFE AND JOY TO THIS CHILD AND LEVERAGE HER LIFE FOR YOUR GLORY. GOD, GIVE US A CHANCE TO STEWARD HER LIFE TOWARD YOUR GLORY AND FAME.
Game Day, Moral Quandaries and Chaia's Room
Sunday Morning Update...If you're looking for the prayer vigil sign up, its the post below this one on the blog. Just read the instructions and click the comment section to sign up.
So Chaia is a Browns Fan.
See? I told you.
But she is also a Seattle SeaHawks fan.
At least she is becoming one. The Browns play the Seahawks today. Yesterday the Seahawks practiced at Case Western where my cousin Steve Thompson is one of the athletic directors. He asked if the team might be willing to sign a card to add to Chaia's room. They did him one better and personalized an autographed helmet from the whole team.
So message to Colt McCoy and company. I have been loyal to you all for years...but suddenly I'm a little unsteady. I hope you can outdo these Seahawks to win my daughter back to your graces!
So may the best team win today.
Also, here is Chaia's room. One of the nurses said she hasn't seen anything like this since she's worked here...We still have hundreds of cards that we haven't put up yet.
Vent is down from 24 breaths per minute to 14 breaths per minute...we go down to 12 at 4 p.m. this afternoon. She's doing well!
So Chaia is a Browns Fan.
See? I told you.
But she is also a Seattle SeaHawks fan.
At least she is becoming one. The Browns play the Seahawks today. Yesterday the Seahawks practiced at Case Western where my cousin Steve Thompson is one of the athletic directors. He asked if the team might be willing to sign a card to add to Chaia's room. They did him one better and personalized an autographed helmet from the whole team.
So message to Colt McCoy and company. I have been loyal to you all for years...but suddenly I'm a little unsteady. I hope you can outdo these Seahawks to win my daughter back to your graces!
So may the best team win today.
Also, here is Chaia's room. One of the nurses said she hasn't seen anything like this since she's worked here...We still have hundreds of cards that we haven't put up yet.
Vent is down from 24 breaths per minute to 14 breaths per minute...we go down to 12 at 4 p.m. this afternoon. She's doing well!
Saturday, October 22, 2011
It's Time for an interVENTion
So the next steps are pretty clear right now.
Wean Chaia off the ventilator fairly aggressively over the week and the first part of the next week.
If she handles it well, we're looking at extubation middle or end of this next week.
This is major crossroads #1.
Chaia has been on the vent for one month...It has been good. (It has taken some of the work off her heart by doing some of the breathing for her.) It has been bad. (It has led to mild infection that has been treated with antibiotics and has led to some levels of dependency on the vent to keep her going.)
When she weans off this, we will know if her respiratory function is sufficient and if her heart's support of her respiratory function is sufficient. If she can't wean or she is extubated and can't sustain herself, we will be saying goodbye in very short order. In some ways it is Make it or Break it time.
So its time for an interVENTion. Monday through Wednesday...72 hours...we are looking for people to pray in half hour intervals. For you math majors, we need 144 people to sign up. Here's how I see this going. We will sign up through this blog in the comments section. And you can only sign up for the next available half hour...so no claiming a time on Wednesday until we've covered every half hour on Monday and Tuesday.
So in the comment section, jot down the day and time you will be praying, your name and where you are from. Remember, you can only take the next half hour slot...So if the last person has taken 9:00-9:30 a.m. on Monday...you either take 9:30-10 or you come back later and get a time that works. This has to go better than the youtube video posting on facebook haha.
Chaia's InterVENTion begins tomorrow night at midnight. Join us.
Chaia still wins when we kneel.
Wean Chaia off the ventilator fairly aggressively over the week and the first part of the next week.
If she handles it well, we're looking at extubation middle or end of this next week.
This is major crossroads #1.
Chaia has been on the vent for one month...It has been good. (It has taken some of the work off her heart by doing some of the breathing for her.) It has been bad. (It has led to mild infection that has been treated with antibiotics and has led to some levels of dependency on the vent to keep her going.)
When she weans off this, we will know if her respiratory function is sufficient and if her heart's support of her respiratory function is sufficient. If she can't wean or she is extubated and can't sustain herself, we will be saying goodbye in very short order. In some ways it is Make it or Break it time.
So its time for an interVENTion. Monday through Wednesday...72 hours...we are looking for people to pray in half hour intervals. For you math majors, we need 144 people to sign up. Here's how I see this going. We will sign up through this blog in the comments section. And you can only sign up for the next available half hour...so no claiming a time on Wednesday until we've covered every half hour on Monday and Tuesday.
So in the comment section, jot down the day and time you will be praying, your name and where you are from. Remember, you can only take the next half hour slot...So if the last person has taken 9:00-9:30 a.m. on Monday...you either take 9:30-10 or you come back later and get a time that works. This has to go better than the youtube video posting on facebook haha.
Chaia's InterVENTion begins tomorrow night at midnight. Join us.
Chaia still wins when we kneel.
Friday, October 21, 2011
The Days When I Could Protect My Family
There was a day before Generalized Arterial Calcification in Infants, when I could protect and save my family.
Those were the days of simplicity.
Those were the days of 4 people reading my blog. 2 if you take away me and my mom. When doctors didn't deem us interesting. When we were much less frequently prayed for.
So I wanted to share a moment from those days...A blogpost about the night I saved both of my girls from peril.
The Following is two versions of the same story. It is difficult to ascertain the precise truth of what took place.
Version One
Friday night, Ben told me that he thought he saw a bat flying in the dining room. I didn't believe him, that is until I saw it Saturday evening from the kitchen. The poor little guy looked terrified and couldn't have been more than a baby or toddler aged/sized bat. Ben put his gloves on, grabbed one of my mixing bowls with its lid and went to the dining room, only to give up on it after about 2 minutes. He returned to the kitchen and I went in to be with Chaia in the Living Room. Just a few minutes later, the bat appeared again, this time in with us. I screamed for Ben to come quickly. He came only after he had redressed himself in gloves and rearmed himself with my mixing bowl. The tiny, exhausted and terrified bat was resting on the living room wall, leaving ample time for Ben to make his move, only he hesitated and the bat started flying again, which queued Ben hitting the deck and holding the bowl above his head hoping the little guy would land in it and preferably put the lid on over himself as well. No such luck. Ben then let it escape the living room and fly upstairs. By this time the bat was beyond exhausted and Ben was able to capture it on the bathroom window without even a fight. He released it out into the wild and we continued on with our night.
Version 2:
It started on Friday night, when a treacherous creature that mimicked a pteradactyl in both size and noise came swooping into our dining room. Shaina was upstairs, so it was up to me to protect Chaia from the obviously fierce predator. I did so successfully. I shared our encounter with me lady, who doubted my truthfulness and suggested I merely mistook a tiny moth for something more.
Then Saturday came and the foul beast reappeared, this time first to me lady's sight. She fainted in the kitchen, at which I swept her into my arms, with oven mitt on one hand and frying pan in the other. I knew it was my duty to ensure her safety. I armed myself with the most basic of neccessities and entered the dining room for battle. The beast, though fierce and aggressive was also crafty and stealth. No where to be found. I moved a rubbermaid container, only to find the most gargantuan of spiders (think the queen beast from Arachniphobia crossed with Dumbo). This frightening creature was no match for my ingenuity and courage. I captured it in the mixing bowl and shook the bowl hard enough to crush the venomous enemy. Then it was time to return to the beast that I was destined to encounter.
I discovered that while I intended to have a solitary duel, the beast had other intentions, namely to take the lives of my woman and child in hopes of crushing my spirit. I entered the living room, just in time to ward of the diving attempts of taking our first born. After an intense back and forth, I was able to force the savage blood sucker away from my loves and into another chamber. After defying death, repeatedly, I was able to surprise the evil vampire and capture it in the titanium plated mixing bowl. As I returned downstairs with my foe captured and my own body unscaithed, Shaina again fainted at the sheer bravery of my conquest. Chaia said her first word, "Dadda" and after taming the beast, I released it back into the wild, knowing it would never ever seek a conflict with me again.
Those were the days of simplicity.
Those were the days of 4 people reading my blog. 2 if you take away me and my mom. When doctors didn't deem us interesting. When we were much less frequently prayed for.
So I wanted to share a moment from those days...A blogpost about the night I saved both of my girls from peril.
The Following is two versions of the same story. It is difficult to ascertain the precise truth of what took place.
Version One
Friday night, Ben told me that he thought he saw a bat flying in the dining room. I didn't believe him, that is until I saw it Saturday evening from the kitchen. The poor little guy looked terrified and couldn't have been more than a baby or toddler aged/sized bat. Ben put his gloves on, grabbed one of my mixing bowls with its lid and went to the dining room, only to give up on it after about 2 minutes. He returned to the kitchen and I went in to be with Chaia in the Living Room. Just a few minutes later, the bat appeared again, this time in with us. I screamed for Ben to come quickly. He came only after he had redressed himself in gloves and rearmed himself with my mixing bowl. The tiny, exhausted and terrified bat was resting on the living room wall, leaving ample time for Ben to make his move, only he hesitated and the bat started flying again, which queued Ben hitting the deck and holding the bowl above his head hoping the little guy would land in it and preferably put the lid on over himself as well. No such luck. Ben then let it escape the living room and fly upstairs. By this time the bat was beyond exhausted and Ben was able to capture it on the bathroom window without even a fight. He released it out into the wild and we continued on with our night.
Version 2:
It started on Friday night, when a treacherous creature that mimicked a pteradactyl in both size and noise came swooping into our dining room. Shaina was upstairs, so it was up to me to protect Chaia from the obviously fierce predator. I did so successfully. I shared our encounter with me lady, who doubted my truthfulness and suggested I merely mistook a tiny moth for something more.
Then Saturday came and the foul beast reappeared, this time first to me lady's sight. She fainted in the kitchen, at which I swept her into my arms, with oven mitt on one hand and frying pan in the other. I knew it was my duty to ensure her safety. I armed myself with the most basic of neccessities and entered the dining room for battle. The beast, though fierce and aggressive was also crafty and stealth. No where to be found. I moved a rubbermaid container, only to find the most gargantuan of spiders (think the queen beast from Arachniphobia crossed with Dumbo). This frightening creature was no match for my ingenuity and courage. I captured it in the mixing bowl and shook the bowl hard enough to crush the venomous enemy. Then it was time to return to the beast that I was destined to encounter.
I discovered that while I intended to have a solitary duel, the beast had other intentions, namely to take the lives of my woman and child in hopes of crushing my spirit. I entered the living room, just in time to ward of the diving attempts of taking our first born. After an intense back and forth, I was able to force the savage blood sucker away from my loves and into another chamber. After defying death, repeatedly, I was able to surprise the evil vampire and capture it in the titanium plated mixing bowl. As I returned downstairs with my foe captured and my own body unscaithed, Shaina again fainted at the sheer bravery of my conquest. Chaia said her first word, "Dadda" and after taming the beast, I released it back into the wild, knowing it would never ever seek a conflict with me again.
Thursday, October 20, 2011
Dearest Chaia
Little Bean, I don't know what is going on in those big blue eyes of yours. You've been through the ringer in your first few months of life and your mom and I are sorry we can't make it better. We are sorry we can't pick you up. We are sorry that you can't even cry to let us know how sad you are.
Your doctors don't hold out a whole lot of hope for you. They say that the combination of your disease and the damage to your heart is probably too much for you to overcome. They say there's a chance you won't be able to wean off the ventilator. They say even if your respiratory system works without the vent, that theres a chance your heart won't be able to sustain your respiratory system. They say that even if your heart and lungs work well, theres a chance you won't ever wean off the milrinone iv. They say even if you wean off that, there's a chance that your heart will eventually give out when you grow an extra inch or gain an extra pound. They say that the calcification that has gotten you into this mess in the first place may or may not be reversible. They also say that if you survive all that, that the scarring in your heart could shrink in comparison to the rest of your fleshy vital heart and you could be an exception to the norm...an abnormality...a miracle.
Your mom and I love you so much. And what the doctors don't realize is that we pray to the God who has a track record of causing death to die. So we will pray for the vent...your heart and lungs...for the milrinone...for your growth and development...for the calcification to disappear...and for you to be on their abnormal list.
Because you're a warrior. And your God is faithful and has conquered the grave. Here's your theme songs for the week.
Your doctors don't hold out a whole lot of hope for you. They say that the combination of your disease and the damage to your heart is probably too much for you to overcome. They say there's a chance you won't be able to wean off the ventilator. They say even if your respiratory system works without the vent, that theres a chance your heart won't be able to sustain your respiratory system. They say that even if your heart and lungs work well, theres a chance you won't ever wean off the milrinone iv. They say even if you wean off that, there's a chance that your heart will eventually give out when you grow an extra inch or gain an extra pound. They say that the calcification that has gotten you into this mess in the first place may or may not be reversible. They also say that if you survive all that, that the scarring in your heart could shrink in comparison to the rest of your fleshy vital heart and you could be an exception to the norm...an abnormality...a miracle.
Your mom and I love you so much. And what the doctors don't realize is that we pray to the God who has a track record of causing death to die. So we will pray for the vent...your heart and lungs...for the milrinone...for your growth and development...for the calcification to disappear...and for you to be on their abnormal list.
Because you're a warrior. And your God is faithful and has conquered the grave. Here's your theme songs for the week.
Wednesday, October 19, 2011
The Manna Principle
It's probably the most impactful sermon I've ever listened to. I don't know if it was as earth shattering as it was simply timely.
When I was in college, I heard a preacher named John Hampton speaking out of Exodus. He was talking about how Israel was sustained supernaturally in the wilderness by God.
Every day, manna appeared for the Israelites to feast on. The rule was, don't bother taking more than you could use that day...because by tomorrow it would be rotten.
In other words...Israel had to trust God to get them through today. And then tomorrow.
It's the Manna Principle. God will give me exactly what I need for today...no more no less.
One Day at a time is the most annoying cliche in hospital lingo ever...and yet, it is exactly the message of Manna. God infuses His grace into our lives at just the right time in just the right ways.
Chaia is stable still. The biggest task in her life is to wean off the ventilator that is doing a good portion of her breathing and keeping the work off her heart. The vent is good...but the vent is bad. And she will only make it if she makes it off the vent.
And she will. A day at a time.
One grace-infused day at a time.
And you will make it too.
Just find the manna.
When I was in college, I heard a preacher named John Hampton speaking out of Exodus. He was talking about how Israel was sustained supernaturally in the wilderness by God.
Every day, manna appeared for the Israelites to feast on. The rule was, don't bother taking more than you could use that day...because by tomorrow it would be rotten.
In other words...Israel had to trust God to get them through today. And then tomorrow.
It's the Manna Principle. God will give me exactly what I need for today...no more no less.
One Day at a time is the most annoying cliche in hospital lingo ever...and yet, it is exactly the message of Manna. God infuses His grace into our lives at just the right time in just the right ways.
Chaia is stable still. The biggest task in her life is to wean off the ventilator that is doing a good portion of her breathing and keeping the work off her heart. The vent is good...but the vent is bad. And she will only make it if she makes it off the vent.
And she will. A day at a time.
One grace-infused day at a time.
And you will make it too.
Just find the manna.
Tuesday, October 18, 2011
RISE Bombarding the Heavens
Going to post a couple of highlights over the next day or two from Sunday Night's service.
Monday, October 17, 2011
Pennies from Heaven
Listen to this
While you read this
So a fellow heart warrior a few doors down from us in the hospital named Cohen is 18 months old. He has just gone through his 4th heart surgery.
His mom stopped by today and shared that before his first surgery, they found a penny in his 'onesie' that he was wearing. It was a penny from Heaven and they took it with Cohen for his first surgery. He now has 4 pennies...one from each of his surgeries. And he and his mom thought it would be good for Miss Chaia to have the penny from Cohen's first surgery. So, now taped to the head of Chaia's bed rests a little penny.
Now that we've got that for good luck, I can finally change out of the pair of underwear I've been wearing for the last 22 days...but the rally beard is staying.
More importantly, Cohen and family need your prayers. They are on the brink of being able to go home. Pray that God would bring that about quickly.
While you read this
So a fellow heart warrior a few doors down from us in the hospital named Cohen is 18 months old. He has just gone through his 4th heart surgery.
His mom stopped by today and shared that before his first surgery, they found a penny in his 'onesie' that he was wearing. It was a penny from Heaven and they took it with Cohen for his first surgery. He now has 4 pennies...one from each of his surgeries. And he and his mom thought it would be good for Miss Chaia to have the penny from Cohen's first surgery. So, now taped to the head of Chaia's bed rests a little penny.
Now that we've got that for good luck, I can finally change out of the pair of underwear I've been wearing for the last 22 days...but the rally beard is staying.
More importantly, Cohen and family need your prayers. They are on the brink of being able to go home. Pray that God would bring that about quickly.
Diva Status
So the lady who brings us the mail every day comes in laughing. The stacks of cards are of comical proportions.
Today after she brought in about 50 more cards, she came back and put this on her door.
The outpouring of support is making little Miss Chaia legendary.
What is happening in her little body will make her God legendary.
Today after she brought in about 50 more cards, she came back and put this on her door.
The outpouring of support is making little Miss Chaia legendary.
What is happening in her little body will make her God legendary.
All We Are Is Yours
So, last night over 200 people came together to bombard the Heavens with us and Shaina and I are humbled.
I will post video later today. But I feel like there was a thick air of expectancy as we pleaded with God for Chaia's life.
One of the highlights was watching as everyone came forward at the end of the gathering and lit a candle off the Christ candle.
By the end of that time, we had this:
Shaina and I came back to the hospital (sorry we did not stick around to fellowship with all of you who came!) around 10 and Chaia gave us two hours of bright blue eyed smiles. We hadn't seen any smiles for a few days so, our hearts are full.
For those of you kneeling all over the country and all over the globe, we love you and ask that you do not stop until the LORD makes clear His answer.
It will never be said of us in this that we 'have not because we asked not.'
I will post video later today. But I feel like there was a thick air of expectancy as we pleaded with God for Chaia's life.
One of the highlights was watching as everyone came forward at the end of the gathering and lit a candle off the Christ candle.
By the end of that time, we had this:
Shaina and I came back to the hospital (sorry we did not stick around to fellowship with all of you who came!) around 10 and Chaia gave us two hours of bright blue eyed smiles. We hadn't seen any smiles for a few days so, our hearts are full.
For those of you kneeling all over the country and all over the globe, we love you and ask that you do not stop until the LORD makes clear His answer.
It will never be said of us in this that we 'have not because we asked not.'
Saturday, October 15, 2011
Quick update
Change Your World! Bring $5 and help Chaia change the world.
JOIN US AND BOMBARD THE HEAVENS!
Just an FYI, this will be a time of worship and prayer together with friends family and churches! The RISE band will be leading us. They are swell.
See you tonight!
Hard 24 Hours
This is a hard road.
Shaina and I went downstairs for lunch yesterday. Five minutes after we left, Chaia's blood pressure plummeted. They had everything ready to go to remedy this drop, but then Chaia rebounded on her own. She'd had a very stable week to that point. Mom was gonna get to hold her for the first time since Sunday, and then this.
Then we left for the night and went to Ronnie Mac's. We came back to the hospital this morning to find out that her vent had gotten a pretty significant leak in it. They extubated and reintubated with a new tube. When they extubated, Chaia spit up...simultaneously losing her feeding tube from her nose. So they've had to run a new feeding tube down past her stomach to her intestines (which is where it was before).
She is visibly uncomfortable so they have sedated her.
Shaina and I feel very helpless. We can't pick her up and we can't tend to her. We can't fix it.
It has been a relatively good week, with some moments of significant hope. But sometimes the hope feels like it is slipping. That's when we need you all to hold our arms up more than ever.
Tomorrow Night in so many ways feels like the key battle in this war. I don't know what God will do, but the expectancy in our hearts is high.
This part of the journey is called sadness.
But this part will not win.
Shaina and I went downstairs for lunch yesterday. Five minutes after we left, Chaia's blood pressure plummeted. They had everything ready to go to remedy this drop, but then Chaia rebounded on her own. She'd had a very stable week to that point. Mom was gonna get to hold her for the first time since Sunday, and then this.
Then we left for the night and went to Ronnie Mac's. We came back to the hospital this morning to find out that her vent had gotten a pretty significant leak in it. They extubated and reintubated with a new tube. When they extubated, Chaia spit up...simultaneously losing her feeding tube from her nose. So they've had to run a new feeding tube down past her stomach to her intestines (which is where it was before).
She is visibly uncomfortable so they have sedated her.
Shaina and I feel very helpless. We can't pick her up and we can't tend to her. We can't fix it.
It has been a relatively good week, with some moments of significant hope. But sometimes the hope feels like it is slipping. That's when we need you all to hold our arms up more than ever.
Tomorrow Night in so many ways feels like the key battle in this war. I don't know what God will do, but the expectancy in our hearts is high.
This part of the journey is called sadness.
But this part will not win.
Friday, October 14, 2011
The EPIC Weekend Challenge
Alright, so many of you are tracking with Chaia on here and on Facebook. Some of you are still trying to figure out how to make Chaia's picture your facebook profile pic. It's ok...this is a safe place.
I had an idea. Shaina and I have stayed afloat because of the prayers and encouragement. We have also persevered because of music that has been right on time. So, ya'll are a creative bunch, so I thought we could have some fun, have some prayer and have some music.
On Facebook, I'm asking you to put a song from Youtube on Shaina and I's walls that somehow deals with the word 'Heart'. Write a prayer that ties in to the song. It can be fun, deeply theological, encouraging, etc. I'm challenging you all to put up 150 songs with the word 'heart' tied into the song by the end of the weekend.
So find the song you're thinking of on Youtube. Click the facebook icon below the video to share the song on Facebook. Then in the message part of Facebook, use the @ sign and then my name and the @sign and Shaina's name. Write your prayer for Chaia's heart after that. Figure out what number of song you are on our wall (so we can see if we are getting close to the challenge goal of 150.)
Rules:
1. No doing multiple songs. You get one crack at it.
2. No country music. Violators will be prosecuted.
3. No 'R' Rated songs or videos. Preserve Chaia's innocence.
4. No duplicate songs. That is cheating and you will be sent to Ohio State or the Tour de France if you cheat.
You can check out our Walls. I've got us started.
Days in the hospital are long and often stressful.
At least this will pass the weekend time! :-)
I had an idea. Shaina and I have stayed afloat because of the prayers and encouragement. We have also persevered because of music that has been right on time. So, ya'll are a creative bunch, so I thought we could have some fun, have some prayer and have some music.
On Facebook, I'm asking you to put a song from Youtube on Shaina and I's walls that somehow deals with the word 'Heart'. Write a prayer that ties in to the song. It can be fun, deeply theological, encouraging, etc. I'm challenging you all to put up 150 songs with the word 'heart' tied into the song by the end of the weekend.
So find the song you're thinking of on Youtube. Click the facebook icon below the video to share the song on Facebook. Then in the message part of Facebook, use the @ sign and then my name and the @sign and Shaina's name. Write your prayer for Chaia's heart after that. Figure out what number of song you are on our wall (so we can see if we are getting close to the challenge goal of 150.)
Rules:
1. No doing multiple songs. You get one crack at it.
2. No country music. Violators will be prosecuted.
3. No 'R' Rated songs or videos. Preserve Chaia's innocence.
4. No duplicate songs. That is cheating and you will be sent to Ohio State or the Tour de France if you cheat.
You can check out our Walls. I've got us started.
Days in the hospital are long and often stressful.
At least this will pass the weekend time! :-)
Thursday, October 13, 2011
10 Things You Should Know...Thursday.
10. There is a fish tank on the third floor of the M building. It is Nemo themed with Nemos and Dorys and a pufferfish. There is also a bright blue and purple fish with orange teeth. I kid you not. Neon Orange. Worth coming and seeing even if there is no one in the M floor to visit.
9. The nurses are wonderful on the ICU floor. Allegedly there are rumors that some of them are calling dibs on Chaia as their patient before they come in to work. Chalk it up to the cuteness factor.
8. We have more cards than square footage in our room. You guys are incredible. I actually have a favor to ask. We met a neat family at the Ronald McDonald House. They are from Ireland and are far from home. Their 12 year old, Jack has some serious issues with seizures and they are looking at a fifth brain surgery for him next week. I know they don't have nearly the support and love that we do and I wondered if you could adopt this family for us. If you could send cards in the next couple of days to Ronald McDonald House® of Cleveland C/O Jack from Ireland 10415 Euclid Avenue | Cleveland, OH 44106. P.S. He loves professional wrestling (WWE), so if you find a card or toy or something along those lines, fire it his way! Thanks!
7. Chaia is one of the smiliest intubated kids ever to grace Cleveland Clinic.
6. Shaina has had mashed potatoes on her plate for a guinness world record 35 consecutive meals. Not complaining...the hospital food is relatively good and free to breastfeeding moms.
5. Got the bill for the Hospital life flight today. Should I be bothered that I got to Children's faster in my car (disobeying one or two suggested speed signs?) than the helicopter and was 13,000 cheaper in getting there? lol
4. Chaia is still very stable. It is hard to believe when you look at her that anything is wrong. That might be that hardest part of this whole thing.
3. Chaia came to the hospital with 0 bows for her hair. She will leave this hospital with over 30.
2. Verse for the day..."But He was wounded for our transgressions, he was bruised for our iniquities: the punishment that brought our peace was upon him; and by His stripes we are healed." Is 53:5...There is nothing the cross can't redeem. Not even you or me or Chaia's heart!
1. Shaina and I are so ready to be with the saints and plead and kneel together and bombard the heavens with you on Sunday.
9. The nurses are wonderful on the ICU floor. Allegedly there are rumors that some of them are calling dibs on Chaia as their patient before they come in to work. Chalk it up to the cuteness factor.
8. We have more cards than square footage in our room. You guys are incredible. I actually have a favor to ask. We met a neat family at the Ronald McDonald House. They are from Ireland and are far from home. Their 12 year old, Jack has some serious issues with seizures and they are looking at a fifth brain surgery for him next week. I know they don't have nearly the support and love that we do and I wondered if you could adopt this family for us. If you could send cards in the next couple of days to Ronald McDonald House® of Cleveland C/O Jack from Ireland 10415 Euclid Avenue | Cleveland, OH 44106. P.S. He loves professional wrestling (WWE), so if you find a card or toy or something along those lines, fire it his way! Thanks!
7. Chaia is one of the smiliest intubated kids ever to grace Cleveland Clinic.
6. Shaina has had mashed potatoes on her plate for a guinness world record 35 consecutive meals. Not complaining...the hospital food is relatively good and free to breastfeeding moms.
5. Got the bill for the Hospital life flight today. Should I be bothered that I got to Children's faster in my car (disobeying one or two suggested speed signs?) than the helicopter and was 13,000 cheaper in getting there? lol
4. Chaia is still very stable. It is hard to believe when you look at her that anything is wrong. That might be that hardest part of this whole thing.
3. Chaia came to the hospital with 0 bows for her hair. She will leave this hospital with over 30.
2. Verse for the day..."But He was wounded for our transgressions, he was bruised for our iniquities: the punishment that brought our peace was upon him; and by His stripes we are healed." Is 53:5...There is nothing the cross can't redeem. Not even you or me or Chaia's heart!
1. Shaina and I are so ready to be with the saints and plead and kneel together and bombard the heavens with you on Sunday.
Wednesday, October 12, 2011
Boasts, Weaknesses and a Good Time to Invest in Hallmark Stock.
This was last Thanksgiving. And so much of what he communicates is exactly how Shaina and I feel.
First the outpouring of support has been ridiculous! Hallmark thanks you for singlehandedly getting them through this turbulent economy. The lady that delivered our mail today came in laughing at how thick the stack of cards was. Then she came back 5 minutes later laughing again because she had missed a stack of yellow envelopes that were for Chaia as well. So thank you so much for that. From Girls schools to college dorms to elementary schools to youth groups to Sunday School Classes...Chaia is a stinkin' diva. haha.
Many have shared encouraging words, and we have felt the truth of Scripture as people have grieved with us when we've grieved and rejoiced with us when we've rejoiced.
Some have said that Chaia's story has impacted them in significant ways, which we are humbled by. Some have credited our faith and strength and I want to speak to that really briefly.
We are not strong.
This is absolutely grueling. We face an impossible road with impossible decisions...but we are putting our hope in the only place that has ever made sense to us to hope...In the death and resurrection of Jesus. This isn't about us. It isn't about Chaia. It is about Christ and His glory on display. And just like the video, we are blessed that God would count us worthy. But we are not strong. We are weak. We are lowly. But God has a Word for us.
1 Corinthians 1:26 Brothers and sisters, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. 27 But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. 28 God chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, 29 so that no one may boast before him. 30 It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness and redemption. 31 Therefore, as it is written: “Let the one who boasts boast in the Lord.”
We are boasting in Christ...Because even in this, he is enough.
Chaia continues to be stable. She is holding on and we continue to believe absolutely and resolutely that this story is not yet over. Just a reminder that we would love for you to worship and pray with us this Sunday.
Love you all.
First the outpouring of support has been ridiculous! Hallmark thanks you for singlehandedly getting them through this turbulent economy. The lady that delivered our mail today came in laughing at how thick the stack of cards was. Then she came back 5 minutes later laughing again because she had missed a stack of yellow envelopes that were for Chaia as well. So thank you so much for that. From Girls schools to college dorms to elementary schools to youth groups to Sunday School Classes...Chaia is a stinkin' diva. haha.
Many have shared encouraging words, and we have felt the truth of Scripture as people have grieved with us when we've grieved and rejoiced with us when we've rejoiced.
Some have said that Chaia's story has impacted them in significant ways, which we are humbled by. Some have credited our faith and strength and I want to speak to that really briefly.
We are not strong.
This is absolutely grueling. We face an impossible road with impossible decisions...but we are putting our hope in the only place that has ever made sense to us to hope...In the death and resurrection of Jesus. This isn't about us. It isn't about Chaia. It is about Christ and His glory on display. And just like the video, we are blessed that God would count us worthy. But we are not strong. We are weak. We are lowly. But God has a Word for us.
1 Corinthians 1:26 Brothers and sisters, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. 27 But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. 28 God chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, 29 so that no one may boast before him. 30 It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness and redemption. 31 Therefore, as it is written: “Let the one who boasts boast in the Lord.”
We are boasting in Christ...Because even in this, he is enough.
Chaia continues to be stable. She is holding on and we continue to believe absolutely and resolutely that this story is not yet over. Just a reminder that we would love for you to worship and pray with us this Sunday.
Love you all.
The Sovereignty of God
So my sister-in-law Alicia linked me to an article on facebook that was written on the Gospel Coalition website. You can read it here.
That January blog post seems so far removed from our lives in the hospital today. It seems like Passion was a decade ago.
But what I said it that post, I'm telling you here that I am still saying it now. In the midst of crisis and heartache, I still want Jesus more than anything.
And more and more, Shaina and I see God's hand preparing us for this road by taking us to the deep waters of His grace.
Pray for us that we can get and stay in the place where JESUS + NOTHING = EVERYTHING.
That January blog post seems so far removed from our lives in the hospital today. It seems like Passion was a decade ago.
But what I said it that post, I'm telling you here that I am still saying it now. In the midst of crisis and heartache, I still want Jesus more than anything.
And more and more, Shaina and I see God's hand preparing us for this road by taking us to the deep waters of His grace.
Pray for us that we can get and stay in the place where JESUS + NOTHING = EVERYTHING.
Tuesday, October 11, 2011
Annoying and Persisting
So we are calling the gathering for Chaia "Bombarding the Heavens".
Here's where I'm at. The prognosis is all around not spectacular.
Today an ICU doctor came in and shared with us the facts of Chaia's heart and body. He said it is an absolute that the heart is 25% dead. It's an absolute that she needs a transplant or else. 10 times in the conversation he used the word 'absolute'.
Here's the deal. I understand his statements and that he is trying to get us to understand the gravity of this (as if we didn't get it already.)
But there is only one prognosis that is absolute, and that is that Jesus has conquered the grave...and He is not done here.
That is why we are gathering on Sunday evening. Because this story is not over and we need the people of God to dig their heels in and persist to the point of annoying by bombarding the heavens with our prayers.
So please come. If you're a state away, we'll lodge you. If you're worried about classes or work in the morning, I'll write you a pass. Just come and dig your heels in and persist and plead with us.
We will not waiver from the belief that God is doing a glorious thing in our midst. Jesus can make dead hearts beat again.
I ABSOLUTELY believe that.
Here's where I'm at. The prognosis is all around not spectacular.
Today an ICU doctor came in and shared with us the facts of Chaia's heart and body. He said it is an absolute that the heart is 25% dead. It's an absolute that she needs a transplant or else. 10 times in the conversation he used the word 'absolute'.
Here's the deal. I understand his statements and that he is trying to get us to understand the gravity of this (as if we didn't get it already.)
But there is only one prognosis that is absolute, and that is that Jesus has conquered the grave...and He is not done here.
That is why we are gathering on Sunday evening. Because this story is not over and we need the people of God to dig their heels in and persist to the point of annoying by bombarding the heavens with our prayers.
So please come. If you're a state away, we'll lodge you. If you're worried about classes or work in the morning, I'll write you a pass. Just come and dig your heels in and persist and plead with us.
We will not waiver from the belief that God is doing a glorious thing in our midst. Jesus can make dead hearts beat again.
I ABSOLUTELY believe that.
Monday, October 10, 2011
Saturday, October 8, 2011
Picture worth a thousand...
It has been 2 weeks since we held our baby girl (with the exception of 5 minutes at Akron Children's when her stats were plummeting.)
So that makes today a really good day.
So that makes today a really good day.
Friday, October 7, 2011
Mercy Every Morning
It's go time. All is set for the PET Scan. I have faltered at moments and believed that this test holds our fate. Pretty sure God has had His hand on this all along. So Chaia is in a good spot.
Still, this morning, we walked in to the room and were greeted with this.
Big blue eyes in a little princess warrior.
Plus Mama made her theme verse and put it on her bed to travel with her to the PET Scan.
I am amazed at God's goodness and nearness.
Here we go.
Still, this morning, we walked in to the room and were greeted with this.
Big blue eyes in a little princess warrior.
Plus Mama made her theme verse and put it on her bed to travel with her to the PET Scan.
I am amazed at God's goodness and nearness.
Here we go.
Thursday, October 6, 2011
My Ladies
I've had the privilege of watching my two ladies in this fight. I've seen a tenacity, a fearlessness, a fight in both of these two that has the power to raise dead hearts to life. I can't believe God has been merciful enough to let me live life with these two.
Chaia, you're an absolute warrior. And I am in awe of your life. I can't believe how much I love you and tomorrow is a day for miracles. I pray that you crush PET Scans, you bowl over calcifications and you cause some of the most prolific medical minds in the world to kneel in awe and praise at the miracle God has done in you. Stay strong my little bean and know you are a life of joy to your mom and me.
Shaina, I love you and your identically mutated gene. I love discovering life with you. I love walking into empty elevators where someone has just ripped a nasty, sewage scented treat and ran away. I love that you love Chaia and ache more than she does. I love that you are not feeling forsaken by God but that even now you want Jesus' fame in this world. I can't wait to plant a church with you.
So Friday's the day. Rest up. And then hold on to your hats.
The rest of you, its go time, let's kneel and pray like our lives depend on it. Because they do.
Lord, we need you.
Thursday's Top Jam
one part irony + three parts Truth.
The great theologian Tom Petty and his disciples the Heartbreakers once said that the waiting was the hardest part.
But God has been merciful and Chaia has a PICC line successfully placed in her arm. She is zonked out from sedation, but is resting up for Friday's big test.
PET Scan tomorrow. Asking God for the mercy of an absolute miracle. Any pleading you did today was not in vain...just repeat it again tomorrow!
God, we're waiting here for you. Because quite frankly, there's no where else to turn.
(By the way...Facebook looks alot cuter than it has ever before).
The Funny Thing About Perseverance (Change of Plans)
So we have held on to James 1 through this process and how trials lead to perseverance and perseverance when it completes its work, leads to maturity.
So we've asked for perseverance to do its work...which is like asking God for patience.
The big test for 12:30 (PET Scan) is now planned for tomorrow--Friday at 12:30 and they are looking at inserting a PIC Line...a more permanent line for her to receive her treatments. There are risks in this...they are looking to go through her arm to run this line. If it doesn't work there, they will have to run it through her liver and then up to her heart.
So we don't know if the PIC Line will happen today or tomorrow. We don't know if the PET Scan will happen today or tomorrow. For now, we sit and we wait and we pray.
This part of the journey is called perseverance.
(This part of the journey sucks.)
So we've asked for perseverance to do its work...which is like asking God for patience.
The big test for 12:30 (PET Scan) is now planned for tomorrow--Friday at 12:30 and they are looking at inserting a PIC Line...a more permanent line for her to receive her treatments. There are risks in this...they are looking to go through her arm to run this line. If it doesn't work there, they will have to run it through her liver and then up to her heart.
So we don't know if the PIC Line will happen today or tomorrow. We don't know if the PET Scan will happen today or tomorrow. For now, we sit and we wait and we pray.
This part of the journey is called perseverance.
(This part of the journey sucks.)
Wednesday, October 5, 2011
Here we go.
According to the cardiologist, this is the biggie...the test of all tests to find out if Chaia's heart is going to make it.
Brief Update and Wednesday's Song
No tests today. Chaia is resting incredibly well (with a little friend called sedation). But her vitals are all great today. She is able to maintain her own temperature without assistance for the first time in a long time! Her liver is back to normal size. It is about rest and healing today.
This is the song in my head today.
We have a big day tomorrow. More on this later.
This is the song in my head today.
We have a big day tomorrow. More on this later.
Tuesday, October 4, 2011
chaia update
Sorry the audio is a little difficult...if someone knows how to fix that on the web cam, let me know.
Address for Chaia is
Cleveland Clinic
M43--06
Chaia Thompson
9500 Euclid Avenue
Cleveland, OH 44195
Note I accidentally had 5500 Euclid earlier!
Monday, October 3, 2011
Chaia Update
Chaia wins when we kneel. Please don't stop.
Thank you all for fasting and praying today. It was a grueling day. Here is a quick update.
Chaia greeted us in the morning with her bright blue eyes and some smiles. God seems to infuse His mercy right when we need it.
Tests and Teams galore today. Infectious Diseases, Neurology, Cardiology, Palliative Care, Social Work, Endocrinology, Genetics, Behavioral Therapy, etc.
Here's what we know. Chaia's heart is in rough shape still. It has been badly damaged through the heart attack like experience she has endured. One of the key numbers they test in blood work to monitor heart failure is called BNP. Normally this number is under 100. When Chaia arrived at the Cleveland Clinic, her BNP was over 4000. The cardiologist we spoke with said she has not ever seen a BNP that high.
The good news is that that number has dropped significantly to 1600. Still very high, but heading in a healing direction.
No transplant lists at this point. We found out we will be on a 'wait and see' approach with her as the Generalized Arterial Calcification in Infants is treated slowly over 4 weeks. It is remarkable to see how the world is collaborating for this little one. Consultations from Germany and Australia have informed our dosage approach in treatment. The cardiologist mentioned that Chaia has become the doctors' sweetheart at the clinic. The rarity of this disorder and her enormity of cuteness has won the hearts of the cardiologists in particular who have "done extensive research and reading to figure out how to save her life."
This is more marathon than sprint at this point...and let me be honest...I hate running. Shaina and I are very weary and this is only the beginning of a potentially long walk toward recovery.
But we continue to trust and we desire nothing more than God's glory. If it is instant healing, God have your way. If it is gradual healing, God have your way. If it is time to let go, God have your way. Do not pray that God simply get us out of pain and suffering (and believe me, this is agonizing.) But pray that He would take us into deeper waters. I don't want to come out of this without God completing the work He desires in Shaina, myself and Chaia, as well as the rest of the world.
My hunch is that it may become harder to pray in this marathon. But we are battling for this little girl's life and we are desperate for you to hold our arms up like Moses so that the battle can be won. Please keep the words of encouragement, Scripture and prayer coming full throttle.
The world is literally watching this little girl's journey. God let your glory reign.
Thank you all for fasting and praying today. It was a grueling day. Here is a quick update.
Chaia greeted us in the morning with her bright blue eyes and some smiles. God seems to infuse His mercy right when we need it.
Tests and Teams galore today. Infectious Diseases, Neurology, Cardiology, Palliative Care, Social Work, Endocrinology, Genetics, Behavioral Therapy, etc.
Here's what we know. Chaia's heart is in rough shape still. It has been badly damaged through the heart attack like experience she has endured. One of the key numbers they test in blood work to monitor heart failure is called BNP. Normally this number is under 100. When Chaia arrived at the Cleveland Clinic, her BNP was over 4000. The cardiologist we spoke with said she has not ever seen a BNP that high.
The good news is that that number has dropped significantly to 1600. Still very high, but heading in a healing direction.
No transplant lists at this point. We found out we will be on a 'wait and see' approach with her as the Generalized Arterial Calcification in Infants is treated slowly over 4 weeks. It is remarkable to see how the world is collaborating for this little one. Consultations from Germany and Australia have informed our dosage approach in treatment. The cardiologist mentioned that Chaia has become the doctors' sweetheart at the clinic. The rarity of this disorder and her enormity of cuteness has won the hearts of the cardiologists in particular who have "done extensive research and reading to figure out how to save her life."
This is more marathon than sprint at this point...and let me be honest...I hate running. Shaina and I are very weary and this is only the beginning of a potentially long walk toward recovery.
But we continue to trust and we desire nothing more than God's glory. If it is instant healing, God have your way. If it is gradual healing, God have your way. If it is time to let go, God have your way. Do not pray that God simply get us out of pain and suffering (and believe me, this is agonizing.) But pray that He would take us into deeper waters. I don't want to come out of this without God completing the work He desires in Shaina, myself and Chaia, as well as the rest of the world.
My hunch is that it may become harder to pray in this marathon. But we are battling for this little girl's life and we are desperate for you to hold our arms up like Moses so that the battle can be won. Please keep the words of encouragement, Scripture and prayer coming full throttle.
The world is literally watching this little girl's journey. God let your glory reign.
Sunday, October 2, 2011
You Guys are our jock strap
We have felt incredibly supported through this dark night. Prayers from Kenya, Brazil, Germany, Ohio, Indiana, Illinois, Tennessee, Michigan, Georgia, North Carolina, South Carolina, Florida, Texas, Missouri, California, Maryland, Wisconsin, and Minnesota have been sent our way.
It is humbling and we have sensed God's nearness.
Need you now more than ever. The little bean has some really big tests tomorrow to find out the damage that has been done to her little heart. We need to know if there are parts of her heart that are 'hibernating' or if they are dead.
We are asking that you would join us in praying that God revives Chaia's heart and that the cardiologists are deterred from decisions to give up or transplant. We will be fasting from midnight until noon tomorrow. We invite you to join us...to get on your knees and cry out to a God who bends His ear. We want God's glory to be leveraged through Chaia as He sees fit. She's His.
Shaina and I are brought to tears with the love we have felt. It is the body of Christ full throttle and we are humbled. But this is our greatest hour.
Love this Word from Ezekiel (Message)
24-28 "'For here's what I'm going to do: I'm going to take you out of these countries, gather you from all over, and bring you back to your own land. I'll pour pure water over you and scrub you clean. I'll give you a new heart, put a new spirit in you. I'll remove the stone heart from your body and replace it with a heart that's God-willed, not self-willed. I'll put my Spirit in you and make it possible for you to do what I tell you and live by my commands. You'll once again live in the land I gave your ancestors. You'll be my people! I'll be your God!
Plead with us for Chaia's heart.
It is humbling and we have sensed God's nearness.
Need you now more than ever. The little bean has some really big tests tomorrow to find out the damage that has been done to her little heart. We need to know if there are parts of her heart that are 'hibernating' or if they are dead.
We are asking that you would join us in praying that God revives Chaia's heart and that the cardiologists are deterred from decisions to give up or transplant. We will be fasting from midnight until noon tomorrow. We invite you to join us...to get on your knees and cry out to a God who bends His ear. We want God's glory to be leveraged through Chaia as He sees fit. She's His.
Shaina and I are brought to tears with the love we have felt. It is the body of Christ full throttle and we are humbled. But this is our greatest hour.
Love this Word from Ezekiel (Message)
24-28 "'For here's what I'm going to do: I'm going to take you out of these countries, gather you from all over, and bring you back to your own land. I'll pour pure water over you and scrub you clean. I'll give you a new heart, put a new spirit in you. I'll remove the stone heart from your body and replace it with a heart that's God-willed, not self-willed. I'll put my Spirit in you and make it possible for you to do what I tell you and live by my commands. You'll once again live in the land I gave your ancestors. You'll be my people! I'll be your God!
Plead with us for Chaia's heart.
Saturday, October 1, 2011
A New Direction
So Chaia is on the verge of celebrity status at the Cleveland Clinic...for two reasons. First, the nurses and respiratory therapists are obsessive about her long eye lashes.
Second because they've never seen anything like what they are seeing in this little one's body.
General Arterial Calcification in Infants (GACI).
That's the diagnose. Google hardly knows what this is. And the same goes for the doctors.
Chaia is one of 180 known cases of this genetic disorder...in the world.
Basically her arteries are calcifying and not working the way they are designed. Her heart was the first place of calcification and it is happening a little in her stomach as well.
The good: diagnosis answers a lot and helps us focus in on one thing rather than guessing at a dozen things. Also, it is a bit of a miracle that the geneticist at the Cleveland Clinic would be able to hit on something that is so rare. Also good is the fact that there is a treatment (which we've started) that has been successful in reversing the calcification and allowing a long and healthy life.
The less than good. Survival rate if untreated is almost nil. Doctor said that we are lucky that she made it out of the womb and that most will die by 6 months without treatment. Chaia's heart has suffered significant damage in this journey. It is unclear to this point what parts of her heart are 'dead' and don't function anymore versus what parts of her heart are 'hibernating'. The head of cardio shared that some interesting new studies have shown that hearts that have been deemed 'dead' or non-functioning, have actually in some cases been alive, but in a type of low functioning, barely evident way in order to recuperate and heal. Especially in an infant, the potential for rebound and restoration is present. If the heart has suffered too much, then we begin discussion on heart transplants.
So we know some ways to pray...I ask for you to join me in a 5 finger prayer. Just hold up one finger for each prayer to God.
1. Thanksgiving that God would deem us worthy to endure a trial such as this and that we would seek with Joy to allow perseverance to complete its work.
2. That Chaia's heart would de-calcify and that doctors would drop to their knees in awe of the healing that God has done.
3. That Chaia's heart would drastically recover and all would point to the glory of God.
4. That Chaia's other vital organs would be untouched by calcification.
5. That Shaina and I could find hope. The outlook is hopeless apart from a God who raises dead things back to life.
I wrote a song awhile back about what God did in my life through my dad's heart attack and passing. The lyrics are appropriate.
Chorus:
Out of death
Comes Vibrant Life
Out of death
You Make all things right
Out of death
Victorious Light
Out of death
You call us your bride
Bridge:
Breathe your breath on us O Lord
These dry bones need to be restored
End of the song:
You make our dead hearts beat again.
You make our dead hearts beat again.
Second because they've never seen anything like what they are seeing in this little one's body.
General Arterial Calcification in Infants (GACI).
That's the diagnose. Google hardly knows what this is. And the same goes for the doctors.
Chaia is one of 180 known cases of this genetic disorder...in the world.
Basically her arteries are calcifying and not working the way they are designed. Her heart was the first place of calcification and it is happening a little in her stomach as well.
The good: diagnosis answers a lot and helps us focus in on one thing rather than guessing at a dozen things. Also, it is a bit of a miracle that the geneticist at the Cleveland Clinic would be able to hit on something that is so rare. Also good is the fact that there is a treatment (which we've started) that has been successful in reversing the calcification and allowing a long and healthy life.
The less than good. Survival rate if untreated is almost nil. Doctor said that we are lucky that she made it out of the womb and that most will die by 6 months without treatment. Chaia's heart has suffered significant damage in this journey. It is unclear to this point what parts of her heart are 'dead' and don't function anymore versus what parts of her heart are 'hibernating'. The head of cardio shared that some interesting new studies have shown that hearts that have been deemed 'dead' or non-functioning, have actually in some cases been alive, but in a type of low functioning, barely evident way in order to recuperate and heal. Especially in an infant, the potential for rebound and restoration is present. If the heart has suffered too much, then we begin discussion on heart transplants.
So we know some ways to pray...I ask for you to join me in a 5 finger prayer. Just hold up one finger for each prayer to God.
1. Thanksgiving that God would deem us worthy to endure a trial such as this and that we would seek with Joy to allow perseverance to complete its work.
2. That Chaia's heart would de-calcify and that doctors would drop to their knees in awe of the healing that God has done.
3. That Chaia's heart would drastically recover and all would point to the glory of God.
4. That Chaia's other vital organs would be untouched by calcification.
5. That Shaina and I could find hope. The outlook is hopeless apart from a God who raises dead things back to life.
I wrote a song awhile back about what God did in my life through my dad's heart attack and passing. The lyrics are appropriate.
Chorus:
Out of death
Comes Vibrant Life
Out of death
You Make all things right
Out of death
Victorious Light
Out of death
You call us your bride
Bridge:
Breathe your breath on us O Lord
These dry bones need to be restored
End of the song:
You make our dead hearts beat again.
You make our dead hearts beat again.
Happy Birthday Bean
We celebrated Chaia's 3 month birthday today with Cleveland Browns cupcakes! Here she is with her birthday bow.
We love her so much.
Pray for her heart to rest, recover and heal. I will update more tomorrow. God is good. He is faithful. He is trustworthy.
And we need a miracle in every sense of the word.
Happy Birthday Chaia! :-)
We love her so much.
Pray for her heart to rest, recover and heal. I will update more tomorrow. God is good. He is faithful. He is trustworthy.
And we need a miracle in every sense of the word.
Happy Birthday Chaia! :-)
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