Waiting Patiently

 


      It's been a week of emotional ups and downs as we all wait expectantly, yet as patiently as possible, for a liver to become available for Cordelia. This morning was probably one of the most heightened mornings of expectation as the Doctors told Cliff and Dani that a liver had become available, but that there was at least one family ahead of them.

     My mom told me at 9:15. I called my sister at 9:17 and then Cliff called me at 9:35. He told me that there was a liver available, but that thus far they had been unable to reach the other family that was ahead of them on the waiting list...this other family had until 10 a.m. to get back to the doctors to "claim" the liver (they are not in the hospital, but further away somewhere).

     I got off the phone with Cliff and got down on my knees right in the middle of the scattered toys in our playroom and prayed that God would make this happen. I reminded God how badly Cordelia needed a liver (as if He needed to be reminded!) and then I sat waiting and hoping that this would be the moment we had all been waiting for.

     My mom called at 10:02.

    "No," was the answer. "Not yet. Not this one."

     "No?! No? But everything seemed to be lining up just right?!" 


     After my loudly expressed sigh of disappointment my mom said, "Lisa, God loves that other little baby too (the one who will be getting the liver today) and we need to pray for the doctors and that that operation goes well."

    She is absolutely right of course. God does love that other little baby and we pray today that his or her surgery goes incredibly well...from the sounds of it he/she is actually struggling even more than Cordelia right now.

     And so...we wait. And in the process we learn about perseverance, and seeking God's help for extra measures of patience. Peaceful patience. The kind that comes when you step back and say, "Ok, this wasn't the day for Cordelia to have surgery and God in all of your sovereignty you know that...AND you know which liver will be best suited for her little body and which day will be the best day for the Doctors to do this incredibly miraculous surgery on her...we trust, hope and believe that YOU have it all figured out."

      So today wasn't Cordelia's day for surgery, but we're o.k. with that.  And we are praying for this other surgery, even though we don't even know the family. And we are praying for the family who lost a little baby and donated the liver in the first place....This is all so complex, and leaves us realizing that we live in SUCH a fallen world where things are not as they were supposed to be. But we are grateful for a God that doesn't leave us here to do this all on our own...We know that He is walking side by side with Cliff, Dani and Cordelia on their journey.

     A note of "good" news is that Cordelia's score was raised from a 29 to a 40 this week-- after this situation this morning I believe she is now almost at the top of the list for her size/category/blood type, which means hopefully the next one will be for her.

     We are praying that God sustain her body as we wait. She was tapped 3 times this week because her belly has expanded just about as far as it can go and now extra food and extra fluids are causing too much pressure, which must continually be released. Between that and the fact that her sodium levels keep dropping to potentially dangerous levels, the nurses and doctors are keeping a VERY close eye on her and actually prepared Cliff and Dani for the idea that she might need to be moved to the ICU if a liver doesn't become available soon so that they can keep an even closer eye on her.

     So, we're asking for big prayers this week-- for another liver to become available (one PERFECT for her), that God would sustain her body, nourish her and keep her healthy while we wait and that great wisdom would be given to the doctors in the midst of all of this.

     After all of this Dani sent us this picture with a note that said..."I wanted to play today anyway!"

The Day to Day in Cincinnati

      As many of you know my sister and I had a chance to visit Cliff and Dani in Cincinnati last weekend. The time was a blessing but it was also an incredibly HUGE reality check in regards to what they're dealing with on a day to day basis.

      I feel at a bit of a loss for words to describe what I was feeling after seeing them and Cordelia (I know, those of you who know me are saying...You? No words?!), but I did take a number of pictures with my I-phone so I'll share those with you and hopefully that will accurately relay some of their experience.


      This is a box that a family from Cliff and Dani's church (Faith Fellowship on Main Street in Clarence) sent to them...I just LOVED that they went out of their way to decorate it with scripture and pictures drawn in marker. Their church family has been so incredibly encouraging and supportive, a true testament to the the idea of what fellowship and community can be in a church body. This box is one of MANY boxes, cards, letters, and gifts they have received from church friends. THANK YOU to everyone who has been encouraging them with letters and gifts...those are the things that are truly sustaining them right now.

Here is Dani on their "bed" (yes they are BOTH "sleeping" there at night) writing her thank you notes. Katie and I told her she DID NOT have to send anyone thank you notes, but she insists with a smile and so she has a little stash in their room and when she has time she sits down to write them out. 

Me with the baby...it was great to be able to hold her and snuggle as best we could with all that paraphernalia hooked up...

A shot of Cliff and Dani's bed...which is really a pull out chair. The nurses were sympathetic enough to track down one of those foam egg carton things to put on top of the pull out for some extra cushion. Many of you have asked me about their room at the Ronald McDonald House. Yes, they do have a room, but they really need to be with the baby at night so neither of them is sleeping there at the moment...They take turns during the day going over to take naps, showers, do some laundry, grab a bite to eat and Cliff likes to lift weights in the small weight room...though Dani tries to prod him that sleep will make him stronger (:

And Cordelia's crib...

The door to the Ronald McDonald House. I can't say enough about this place...it is INCREDIBLE. The facilities, the employees, the VOLUNTEERS! People cooking and cleaning and washing dishes...We saw a 7 year old boy with cleaning gloves on and a broom in his hand. When we first walked through I was close to tears as I considered that all of the 80+ families who are currently staying here have a child with a significant illness of some sort...they ALL have stories to tell, and hardships to face, but the beauty is that in the process all of these volunteers and employees are dedicating their time and money to try to make their journey just a little bit easier in any way they can...Katie and I have promised that in the future we WILL donate time and money to this organization. You can check them out here to learn more. To see more pictures of the Cincinnati Ronald McDonald House click here.

Another picture of the Ronald McDonald House...

 One of the many beautifully decorated seating areas in the Ronald McDonald House...

A very cool sculpture near the sitting area outside...the hearts are part of their logo and can be seen in a lot of the artwork and decorating around the facility.

Cliff and Katie with the statue that sits out front...

Dani, in the hospital, pushing (breast) milk through Cordelia's feeding tube with a syringe...Not the typical way for a momma to be feeding her baby, but Dani does it confidently and with a smile as if it were the most natural thing in the world (that's why we love her so much!!).

 Cliff and Cordelia checking out the equipment...She actually really likes all of the lights on this rack of stuff!

    What is not portrayed in these pictures is the steady flow of nurses, doctors and miscellaneous hospital staff who are in and out of the room 24/7. Cordelia's situation is incredibly high maintenance and so someone is constantly checking her monitors, or taking a blood draw or implementing medication. Cliff and Dani have both been incredibly vigilant at watching what they are doing, participating where they can, and making sure that all the medical teams are communicating with one another about things like taking blood (which, if not kept in check, could lead to a blood transfusion). 

   What is also not portrayed, despite all of the smiles, is how little sleep they are all getting...A few broken hours here and there each night and short naps in shifts when they can get them in. 

    On a note of "good" news, the Doctor's are petitioning to have Cordelia's score moved from a 29 to a 40, which will hopefully expedite her ability to get a liver. There was some talk of them also giving this an August 30th deadline, at which point they will seriously consider doing the living donor surgery...with whom is a question that is still up in the air. 

    If you have a moment this week, drop them a note in the mail...and if you really want to find the way to Dani's heart mail her some Pringles or Reese Peanut Butter cups...she's a shoo in for both! 

Monday July 23rd, Health Update

Here is the most recent update from Dani on what they have been going through in just the last 24 hours...A recap of what happened between the hours of 9 p.m. (when Katie and I left their room last night) and when we saw them at 9 a.m. this morning!

I am humbled, inspired and amazed by what these two have endured over the last six weeks and how graciously, peacefully and faithfully they are handling it all.  In just the two days that my sister and I spent in the hospital we got a good dose of the reality they are facing each day...it is big, tiring, challenging and hard to imagine how they are making it through...but somehow, by the grace of God, they are...

Here is Dani's report from last night...

• So last night her ascitis (stretched belly)  was definetely getting worse (she's in size 3 diapers due to her belly). Around 11 p.m.  her o

  xygen level went from 100 down to 85. It came back to shortly after that and has been hovering around 95-97. However, the nurse had to report that dip though to the doc who then  ordered a chest.xray to rule out pneumonia or collapsing lung, etc. 
  
  
  Cliff and I thought that was overkill and grumbled about them being ridiculous with tests and how she needed her rest. So chest xray came to the room and did their thing in the room. More blood was taken for more tests (17ml today-one over her limit and that's with giving back the waste blood) 
  
  
  After all of this I was not happy and a bit more worried about Cordelia so we prayed for protection over her and guidance for the doctor. 
  
  
  5 a.m. rolls around and the nurse comes in.. They stopped her iv nutrition. She had somehow wiggled her pic line out a bit and it was no longer centrally located where it was supposed to be... Score one for God's sovereignty. Had she not had the breathing problem and chest xray they wouldn't have looked at her pic line until her next dressing change Tuesday. The iv nutrition could have damaged her peripheral veins. We were again humbled and reminded how great and merciful God is. His ways are beyond our comprehension. Prayer is still our greatest need in this 
  season of our lives.
  
  
  
  
  
  
  And then, after all of this, here is the "schedule of 
  Cordelia's day that they reported today...
  
  
  

  

  
  
  
  
  
  

  Cordelia's Monday schedule:
  12a chest xray
  4a blood test
  9a nuclear test
  930a xray
  1030a ekg
  12p blood test
  130p iv
  2p belly tap
  4p blood test
  And then maybe a nap
  

  
  

  Please continue to pray and mark your calendars for the September 30th Benefit! 

  
  

Saturday's Health Update

       Just wanted to post the health update that Dani sent to me last night...it's very medical/technical in its terminology, but we wanted you all to have a very specific things to pray for and, at the end of the day, that is where Cliff and Dani are right now, living in a land of lingo and lots of terminology not always translated easily into layman's terms. 

Here are Cliff and Cordelia checking out her very complicated medical equipment earlier today...

      Hopefully more to come tomorrow...Katie and I are in Cincinnati visiting this weekend and are enjoying our time with Cliff and Dani. We are also relishing in our chances to hold little Miss Cordelia.  Although we did sheepishly need to call the nurse to come help us lift her out of her crib to hold her this afternoon. We had sent Cliff and Dani off to eat dinner and get in a shower and short nap and while you'd think two moms with four kids between us could calm a fussy baby, it is a WHOLE new world when that baby has all sorts of wires hooked up to her!

      Because it's late I'm going to leave you with the note from Dani, and hopefully will have time to post something longer over the next day or two.  Big picture summary right now....Cordelia's need for a liver is becoming more urgent and evident everyday and we hope that it will be soon. 

The note from Dani...

• I have a health update. I'm sorry its lengthy
  
  
•  She had a fever again last night. There have been more blood draws (praying she doesn't need a transfusion with all the recent tests and blood drawing). Also,  her sodium levels are very low. They usually would give her saline but her ascitis (accumulation of fluid in the belly)  is getting bad too and that would make it worse. The lead doctor's are looking into a different medicine that is very aggressive (and not well documented on pediatric patients), but that may be necessary. Please pray for wisdom and discernment for the doctor's. 
  We saw her ct liver scan and the bile ducts are engorged (normally they are thin and stick like) they think that may be the infection causing the fever but don't have a way to test it. On a positive side she didn't need to be catheterized for a urine culture this.morning because they were able to get it with cotton balls. 
  
  
  Bottom line...she needs a liver.
  
  
  If anyone is looking for specifics to pray about....healing for her fever and any infections to clear up would be first. No bleeding issues and if she needs blood for it (the draws and the amounts they are taking) to be safe. Big prayers for a new liver soon... until she gets one the ascitis, sodium, and bile ducts will have to be constantly adjusted. 
  
  
  
  
  
  

A Health Update

      Cordelia is having a bit of a tough week... Early last week it was discovered that she was fighting off an infection (which, as we all know, is not great for her right now). In an effort to determine where the infection might have been, and ward off anything bigger, the Doctor's did another "tap" to empty her belly of about 4 oz. of fluid.

     Apparently last night was a pretty tough night. Cordelia is not sleeping well because she doesn't feel well and is uncomfortable (if you can imagine trying to soothe a sick baby WITHOUT cords and monitors and feeding tubes, you know how hard that is...now add the extra challenge of all of this stuff in her way making it that much harder for her to get comfortable and Cliff and Dani to even be able to soothe her).

 The doctors did LOTS of tests today...they were checking her liver and looking at her lungs, doing scans to figure out where the infection is coming from. Please pray that they would have clarity and wisdom and the right information to determine where this infection is coming from and what they need to do to clear it up.  

     She is on antibiotics now and and they seem to be helping.  The doctor's told Cliff and Dani that as long as the infection cultures don't show any considerable growth in the next day or two that she will still be a possible candidate if a liver becomes available (the concern with infection is that she would miss an available liver), but a LOT is up in the air right now.

   So, if Cliff and Dani weren't getting any sleep before this bout of illness, they're REALLY not getting much sleep now.

    So, prayer requests this week? Prayers, prayers, prayers for Cliff and Dani's strength and protection over their health. Healing for Cordelia's infection and answers to the tests.  Please pray that God would just be covering them in health and strength as they walk through this day by day.

    On another note, the bills are starting to come in, a reality that can be a bit staggering at times...like the one day in the hospital where Cordelia had an EKG and needed anastesia and it all cost $14,000. Yup, you read that right. No, I didn't add an extra "0".

    One day = $14,000!

     Now, obviously that is not every day, but as you can imagine these things all add up.

     Fortunately insurance covers the majority of that...the cost of that one day to Cliff and Dani was around $80 (crazy, huh?!).

    That said, they're beginning to have a LOT of those smaller $80 type bills coming in...they're doing pretty well right now, but it just highlights the importance of the benefit and our fundraising attempts for them.

     My sister and I are heading out to Cincinnati to visit this weekend-- we're going to try to push them out the hospital door on Saturday night to go out to dinner or just do something together as a couple that is not within the confines of hospital walls. Please pray that Cordelia stays healthy this weekend in particular to that they feel ok enough to head out for a few hours together...they need it and deserve it!

     We'll take pictures and videos and come back with an update next week.

What Can WE Do?

Isn't this great?! 

I just had to share. 

If there is any good to be found in a situation so difficult and not so good, it is that it opens up an opportunity for people to love and help, care and share of their time, talents and efforts in any way that they can. 

As we all wait for little Cordelia to receive a new liver, people are stopping, moved by the situation and asking a very important question, "What can I do?"

Life is crazy...all of the craziness and chaos we see in the world can be overwhelming, and I admit that at times it seems like there is nothing one person can do when the mess of the world is so big. 

But that couldn't be further from the truth...it's the little things, in our own sphere of influence that make a big difference in someone else's life. 

As a former English teacher I'm a sucker for a good quote from a classic British author, particularly Mr. William Wordsworth. Here is what he had to say about being kind and generous and doing what we can do...

The best portion of a good man's life - his little, nameless, unremembered acts of kindness and love.  ~William Wordsworth

So, one of Cliff's friends, Jonathan (his dad and our dad go way back, actually) keeps asking "What can I do?" (We are grateful to him for setting up the online donation site as well!) Today the answer led him to order this sticker and stick it on the back of his car...I say, "That Rocks!!" 

I love all the people asking "What can I do?" People are offering baskets for the fundraiser, and services, and time and donations. Several women that Cliff worked with for a relatively short period of time have stepped up in BIG ways to help organize and plan the upcoming benefit (thank you Cindi and Angela and everyone else who has had a hand in the organizing thus far).

One of Dani's closest friends is going through the somewhat rigorous process of being tested to be a living donor...That rocks pretty big too! 

There are some wonderful people at Cliff and Dani's church who continue to call them, and us and offer whatever they can...That is the beauty of fellowship within a church body. 

These examples, they are just the beginning of a long list...a list that will continue to grow. 

So, as hard as all of this is, we are all being offered the blessing of seeing a side of humanity that isn't always highlighted on the evening news or in our local papers-- the kindness, the compassion, the passion and the generosity of the human spirit. 

I love that. 

A Waiting Game...

     I pestered Dani for a picture of her and the baby and they sent this beautiful shot along (many of you may have seen it on Facebook). I was teasing them that I didn't have any pictures of her, and as is the case with just about EVERY momma I know she joked that of course she is almost always the one taking the pictures. We joked about how moms somehow only end up in pictures with really bad bed head and no make-up.  So, she implored Cliff to take a couple of shots today...such sweet smiles.

     Everything is in a holding pattern right now, no major changes, which is good-- no news is good news for a few days anyway.

     It is now a game of waiting patiently for a liver with the knowledge that weight gain and growth are good for Cordelia and for her post operation recovery, while on the other hand knowing that the current complications with fluid retention could end up leading to another minor operation to "tap" her belly (basically drain it of some of the excess fluid)...something they don't want to do (because it increases the risk for infection) and that each day her current liver deteriorates a little bit more.

     Cliff sounded tired when I spoke to him two nights ago...he said that one of the hardest things is that doctors and nurses come into their room so frequently (even at night) that they only get short spurts of sleep before being awoken again. They actually look forward to the weekends because there are not as many specialists and therapists and interns and social workers coming in to see them...it's just the bare bones hospital staff, which allows them a bit of breathing room. Of course Cliff and Dani would be the first to tell you that all of these people are WONDERFUL and that all of the help and guidance they have gotten has been incredible, I imagine it just gets a little overwhelming at times.

     One of the biggest "normal" challenges right now is that little Miss Cordelia has discovered that she has hands (as all new babies eventually do!), little hands that, combined with a lot of curiosity,  grab and pull and tug on things. As any four month old would do she is using her hands to discover the (very strange!) world around her-- unfortunately she has also discovered things like the feeding tube, which she has pulled out several times and which the nurses then have to reinsert (not so fun).

     They do have a few toys that they dangle in front of her and that she likes to play with. It's funny, in the midst of all of this, it's easy to forget that she is just a sweet little baby who instinctively wants to start doing and developing like babies do...In that regard, they do actually have a physical therapist coming in to work with her on strengthening her next, movement, etc.

     So now they just sit and wait for a liver to become available-- something that could happen anywhere from a couple of weeks to another two to three months. The doctors feel like given her new "transplant score" of 29 (the scale goes up to 60... 29 is a "good" score) that it could be sooner rather than later.

There is just something about a sleeping baby isn't there?! So sweet. 

     Cliff and Dani both had several more examinations and tests and are still being considered "living donors" if the situation reached a point where a liver was immediately necessary, but not available from the transplant bank. In the simplest terms, a "living donor" is an adult who offers to give a partial lobe of their liver to be grafted into the child as a "whole" liver. The incredible thing is that for the adult, the liver regenerates itself over time (though I do believe the adult is placed on medication for the remainder of their life (?) and it is major surgery for them). It's not the ideal option and neither Cliff or Dani are superior matches, but it's a plan B if necessary.

      Dani also has a friend (Joyce) who is being tested to be a living donor-- Joyce, you are an incredible friend and I love your passion and commitment to Dani! If there is any hint of good that I can admit to in all of this it is that I have had the opportunity to see and am blown away by the kindness and generosity of others in the midst of difficult times...that is a blessing.

      On another note, plans for the fundraiser are coming along. We've hit a few "bumps in the road" as far as date and location, but we're working on securing that SOON! We're shooting for a September 29th date and hoping the new location we're looking at can accommodate. I promise to post the information as soon as I have it...We know this is crucial for planning, volunteers, getting donations, etc.

     More information to come soon...I promise!

     In the meantime I asked Cliff what his biggest prayer requests were right now and he said the biggest thing is that Cordelia would remain infection free...this is crucial to her being ready for a transplant...so crucial that if a liver were to become available while a patient has an infection it goes to the next person on the list...we certainly don't want that to happen. Prayers. Prayers. Prayers!

     I would also add that Cliff and Dani need prayers for their own health-- with all of this stress and their lack of sleep, please pray that God would provide them with the strength and health they need to sustain their day to day challenges. That protection would just be poured out over them and that God would be sustaining them in every detail of their days.

    Again, if you'd like to send a card to Cliff, Dani and Cordelia I'm sure it would make there day...send cards addressed to their attention to:

Cincinnati Ronald McDonald House

350 Erkenbrecher Avenue

Cincinnati OH 45229

A New Fundraising Site

Fundraising is a critical part of the journey that many families must explore when faced with unexpected medical challenges like Cliff, Dani and Cordelia are currently facing. While many of the hospital costs are covered through insurance (a blessing), there are so many other costs that I had never even considered before finding out about Cordelia's condition.

Things like hotel rooms and a rental car when they first traveled to Cincinnati. Cliff and Dani have both been driving quite modest vehicles that were, quite frankly, both on their last legs. One of them (the Jeep, I think?) was so far on it's last leg that it actually died on them while they were returning their rental car to the airport (they'll probably cringe that I'm telling you this story, but it is a testament to how modestly they were trying to live). Inevitably they need a new car...but their baby's health takes first priority right now. 

Both of them have had to take a leave of absence from their jobs...leaves that are  unpaid. This decision, while necessary, leaves them living on savings and...donations. 

Once Cordelia has her transplant surgery a whole other host of uncovered costs will be introduced-- in home health care, a host of medications and equipment, and many, many other things that we can't even anticipate at this point. 

For all of those reasons we are in the process of planning a fundraiser in September and a good family friend (Jonathan) has graciously worked to set up an online donation site. Many of you will notice that the the web address of the donation site has recently changed. Jonathan set up this new site (the link is the right column) for several reasons, but mostly because the site (@ Indiegogo) is more comprehensive-- It allows you to upload pictures and video, see comments and even make donations with a credit card.

All of the donations from the Chip In site (close to $2,500! Thank you!!) have been deposited into a local credit union for Cliff and Dani. We will pick up where we left off in striving to reach  $5,000 before the September fundraiser. Just a note about donations-- if you donate a minimum of $20 to the site you will be given free admission to the fundraiser (your name will be automatically added to a list that will be held at the door). 

All that said, we hope that you will all come out to the fundraiser in September and, in the meantime, if you would like to donate to help Cliff and Dani out with their current costs you can do so by clicking the donation link in the right hand column of the blog page or by clicking here (if you are reading this as an email). 

Thank you all for all you've already done and contributed. The support is greatly appreciated.

Praise You In This Storm

The good news this week...Cordelia's PELD "score" (a number given to her on a scale of <1 to 60 to determine the severity of her condition) was raised from a 14 to a 29, placing her in the "priority" category on the transplant list.

While this is in someways bittersweet (her health needed to deteriorate in order to increase her score), it is a very good thing in her overall fight towards health and GREATLY increases her chances of getting a viable liver.  There are 17,000 patients on the national liver transplant list and somewhere between 5,000-6,000 livers become available each year for transplant.

The doctor's in Cincinnati have been WONDERFUL and my parents reported as they were leaving the Cincinnati hospital this morning that one of Cordelia's tests today (thyroid?) came back normal, which surprised the doctor's as much as Cliff, Dani and my parents...a huge praise in the middle of a lot of challenges.

They (our parents-- Cordelia's grandparents) also reported that while Cordelia was fussing when they first arrived in her room this morning, within the couple of hours that they were there that she finally broke a smile and was in good spirits when they left.

Cliff, Dani and Cordelia have been blessed with visitors this week-- my parents were there from Wed-Saturday, a couple from their church told me they felt so blessed to be able to go out and visit and see Cordelia in such great hands at the hospital, and Dani's mom is on her way today. The help has been wonderful for them because it gives them a chance to leave the room, take a walk, or a shower, or a nap! as well as just feel loved, encouraged and supported.

Another note of good news...Cliff and Dani received a room at the Ronald McDonald House next door to the hospital. They have been on a waiting list for a couple of weeks and were finally able to move in this morning!! While they will continue to spend most of their time in the hospital this allows them a space of their own to call "home base" where they can shower, store personal belongings and even receive free meals that are prepared by local volunteers.

Cliff and Dani can receive mail at the Ronald McDonald House so if you'd like to send along a card you can do so by addressing it to their attention at the following address:

Cincinnati Ronald McDonald House

350 Erkenbrecher Avenue

Cincinnati OH 45229

What I continued to be awed and inspired by is Cliff and Danielle's strong faith and their trust in God in the middle of all of this. Our family grew up in the church and Cliff has always been strong in his faith, but seeing his and Dani's response to all of the challenges they are facing right now is nothing less than inspiring.

 Cliff told me last week that neither of them had ever read their Bible's from front to back and thought that while they were spending time in the hospital that they would start doing it together...and if they got to the end, they will start all over again.

They also sent a text with this picture...Cordelia's medical "tree of life" so to speak...

along with the title of a song by Casting Crowns, "Praise You in This Storm"...

I googled the song to read the lyrics myself...I've copied them here for you because they are so powerful.



"Praise You In This Storm"

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus:]
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus]

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

[Chorus x2]

 Cliff, Dani and Cordelia feel the strength of your prayers and appreciate them all.

Lastly, as I mentioned in my last post, we are in the process of planning the September 8th fundraiser. If you click on the "Fundraising" tab at the top of the blog page you will see the flyer and I will begin to post information under that tab about needs, both donations and volunteers.

The biggest need that we are thinking about right now in terms of the fundraiser is gift baskets for the auction...A basket/gift can be any appropriate giveaway that is $20 or more...i.e. restaurant gift certificates, car wash certificates, movie certificates, a basket of chocolate/goodies from a local business,   the list goes on and on.

If you are a business owner, or know a business owner who might be willing to donate a basket for the fundraiser please ask, collect the basket and then arrange a time for pick-up/drop-off with us (contact information is posted under the "fundraising" tab. Thank you!

Cordelia had a rough night last night and hard day today, all challenging and pretty scary for Dani and Cliff as well.

While I'm not completely sure of all of the details, apparently she has not been tolerating the pace of her food well (which is now being given through a feeding tube), and her belly, which continues to expand because of fluid retention and bloating is measuring over 51 cm, much larger than when they originally "tapped" her to reduce the swelling. All of these issues were making it quite hard for her to breath, and her labored breathing was beginning to be quite concerning Cliff and Dani.

After some more tests, and some guesses that she might be becoming borderline anemic, the Doctors decided on what will likely be the first of several blood transfusions, which is a four hour process.

Daddy and his little girl. 

Cliff and Dani were also told that neither of them is a great match to be a living donor. They were both tested and while they were hoping that one of them would be a good match it turns out that neither of them is. Because Cordelia is so small, a living donor would also need to be on the small side (around 100-120 pounds). I don't know a lot about the living donor process (I promise to do some research and share some more with you as I learn about it), but I do know that in an ideal world they would love to have a good living donor lined up as back-up in case they run out of options (i.e. a perfectly matched liver from a non-living donor) as time goes on.

Cliff and Dani are both very tired, not getting much sleep and being taught new information daily about how to care for Cordelia and how to participate in things like the feeding process (through the feeding tube). Even changing her diaper is difficult because of all of the wires and IV's. Cliff joked in one of his Facebook posts that he wasn't able to find the section in "What to Expect in the First Year" on all of this stuff...

How true...

Please continue to lift all of these things up in your prayers-- that Cordelia would stay as healthy as possible and avoid all infections, that we would all have peace and be trusting that God has the right liver at the right time in His plans, and that He would be filling Cliff and Dani up with continued strength, wisdom and peace.



P.S. I've posted a link on the right hand side to a fundraising site that has been set up for Cliff and Dani. Click on the link to check it out.

Also, feel free to leave comments for Cliff and Dani at the ends of these posts by clicking on the "Comments" section where you can write your thoughts, prayers and words of encouragement.