Shuffling (and flying) Off to Cincinnati

Cliff, Dani and Cordelia have officially moved to Cincinnati.

I think most of you know this already, but Cincinnati Children's Hospital  is one of the best in the country for Cordelia's condition (Biliary Atresia). As Cliff and Dani have said, in Buffalo Children's Hospital her needs are abnormal, they are rare and uncommon which makes them all the more tricky for the doctors (in their defense, the condition affects 1/10,000 children). However, in Cincinnati her needs are everyday practice-- they have an entire floor devoted to pediatric liver patients, particularly Biliary Atresia. In Cincinnati she is normal.

In the 3 weeks since they returned from Cincinnati (where they went in hopes of correcting the condition with a surgery that would have at least temporarily rerouted her liver to her intestines until she was a bit older, but where it was discovered that her liver was so badly damaged that it wasn't even possible) things have been chaotic and confusing for everyone.

Because of her liver failure (and some of her medications)  Cordelia has started to retain a lot of fluid. She was surgically "tapped" once to help reduce the swelling, but within a week and a half her little belly was measuring larger (from retention) than when they first drained the fluid. It was becoming an incredibly delicate balancing act-- medication to reduce the retention which was causing a lack of potassium which was causing a need to go back to the hospital and be hooked up to an IV which was causing further retention...you can see how this was all going...

The doctors in Buffalo eventually said that she needed to be in the hands of the experts.

This past Wednesday morning she was airlifted from Buffalo to Cincinnati, OH while Cliff and Dani, bags packed, left home and drove the 7 hours to the hospital.

What a whirlwind of a week.

When they returned to Buffalo from Cincinnati the first time the hope was that Cordelia's body would be functioning well enough that with some assistance from Buffalo Children's Hospital and monthly check-ups in Cincinnati that they would be able to go about their "normal" routines until the time of the transplant at which point they would have gone directly to Cincinnati for the surgery and then would have stayed there for 3-6+ months after the surgery as she recovered.

Now, they wait in OH for a liver (could be up to 6 months? I will write a post about that process next week) and then the recovery time. No one is sure how much of this will be inpatient vs. outpatient time. They will either move into an apartment in a Ronald McDonald house or look for housing elsewhere (a lot of things are up in the air).

All that said, Cliff has had to take an undetermined leave of absence from his job (as has Dani), and while their insurance has been great about covering the medical costs (doctor's appointments, surgeries, etc.), it's quite staggering how quickly the non-medical but necessary costs can add up (needing a new car to replace the old one that was 'making due' at home, paying for either an apartment or the small daily fee for the Ronald McDonald House and the list will certainly go on.

Cliff feeding Cordelia

In order to help defray the financial burden friends and family are in the process of setting up a number of fundraising efforts.

Plans for a fundraising dinner are in the works on September 8th. If you are on Facebook look for "Benefit for Cordelia Faith Minter" to be added to the Facebook group list where you can get the most up to date news and details.

A friend of the family (Thanks Jonathan Ziders) has set up a website that works through Paypal to take donations as well:

http://cordeliafaithfund.chipin.com/cordelia-faiths-medical-costs


Also, in the meantime donations can be sent to my parents house-- email me at lisa.littlewood@gmail.com for their address if its on your heart to send a donation and you'd like to do it that way.

A sweet smile in the midst of the craziness.

Thank you for all of your support and prayers. Please keep lifting this sweet family up by covering them with prayers and showering them with love.

Update and Prayer Requests

Good morning everyone,

Just a quick update-- unfortunately Cliff, Dani and Cordelia spent the majority of their weekend in the hospital again. Cordelia's sodium levels keep dropping and so they have to keep giving her sodium via IV to get her levels back up.

The drop in sodium is due in part to the medications she is taking-- apparently she is on a number of different medications to control water retention, etc. and it is a very detailed science to balance the proper amount of medication so that her sodium levels do not drop.

Cliff and Dani were in good spirits when we saw them at the hospital last night. Sunday was Cliff's birthday (Happy Birthday again brother!!!) and so Scott (my husband) and I stopped up to deliver a piece of cake and a silly card in an effort to add some cheer to a stressful day.

My parents were there (they brought dinner) when I arrived and Cliff and Dani's sweet pastor had delivered cupcakes shortly before us...I LOVE the love that God is bringing into their lives in the midst of all of this crazy stress.

Cliff and Dani were excited about the little things...an actual cot for them to sleep on (instead of just the pull out hospital chairs) and a whole "side room" that included a fridge and table and place for them to keep their things. If ever I have met anyone who sees the glass half full (or at least always tries too) it is these two!!!

Love you guys!! Your hopeful, faithful and committed optimism in the midst of a lot of chaos inspires me. Thank you.

Other things to be praying for...Cordelia continues to retain water, which means her belly gets very bloated. They've already surgically drained the fluid once. If they have to do this repetitively it increases the risk of infection. Please pray that her fluids would reduce themselves on their own and that she not need this procedure too often...

Also, she really needs to gain weight and her body needs help actually processing some of the vitamins she is taking (instead of getting rid of them all). Please be praying for God's hand in helping her body to do all of these things to make her strong for her surgery!

Their next check up appointment is in Cincinnati on July 10th. Cliff and Dani have both been tested as living donors and will find out if their own livers are a good match during this time as well (This does not mean they will definitely be her donor, but it opens up the options).

Thank you again for all that have sent cards and food and support...Cliff and Dani have genuinely appreciated every act of kindness, encouragement and help. They proudly showed me a sweet "Get Well" card from one of the kids from their Sunday School class (Cliff and Dani are great with kids and wonderful Sunday School teachers!)...it was really sweet and brought big smiles!

Blessings.

Psalm 107:1 Give thanks to the Lord, for he is good: his love endures forever. 

June 23rd, 2012

Greetings Friends,

Welcome to Cordelia's blog.

This is a place where we will be providing updates, prayer requests, needs for help, information about the upcoming fundraiser and anything else we think would be helpful for you to know in order to love and support Cliff, Dani and Cordelia on this road to help, healing and recovery.

Thank you all for the many ways you have already offered support, encouragement and help to Cliff and Dani as we have all learned about Cordelia's condition and the complications associated with it. We know that many of you are wondering how you can continue to help and pray and we hope that this blog space will be one way to communicate those things.

Check back often...we will try to post new news and updates 1-2+ times a week, depending on what is going on.

The best way to stay connected (besides checking in frequently) is to enter your email address into the box in the right hand column-- every time a new blog post is created and published you will receive it directly to your inbox (unfortunately a day later at times, but it will come to your inbox nevertheless!).

Thank you for you love and prayers. I hope to post an update by Monday on Cordelia's most recent challenges and needs.