Benefit and Health Update on Cordelia

Well, it has been 10 days since the Caring for Cordelia benefit and we are just now getting back into the "normal" swing of things! But, most importantly, the baskets have been picked up, the money has been counted and the summary of it all is that...

Between pre-sale ticket sales and donations and day of event sales, raffles and donations, we were able to raise a total of $28,500 for Cliff and Danielle!!

Cliff and Dani are both so humbled and thankful for your generosity and encouragement. They are a couple whose words are few but whose hearts are HUGE  and they want to let you know that are incredibly grateful and thankful for the financial, spiritual and emotional support you have all offered over the last five months.

We also want to thank you...ALL of you...for making the day so successful and fantastic.

Every one of you played a part in helping to support Cliff and Danielle in their ongoing journey with Cordelia.

A huge thanks to our core team who were there from the beginning to help plan, coordinate, sell tickets, collect baskets. Thank you to Angela Bauerlein, Cindi Wing, George Rak, Jane Rak, Jonathan Ziders, Joyce Meyer, Mel Byrd, Katie Cloen, Mom and Dad Minter, Leah Bolender  (and her day of the event money counting partner Andrea!) Dawn Delprince and Andrea and Jim Keifer for coming to meetings, printing flyers, picking up supplies, and commiting so much time and energy to help all of the pieces fall into place.

And to Karen Vitale and Jim Smith, Danielle's Mother and stepfather.  Karen Sold Over 50 Tickets and Brought In Over 40 Baskets And Gift Certificates.  Jim helped load them all to be transported. A huge thank you to them as well!!!!

Thank you to the band, Wide Right, who came to us through George Rak (his father in law is one of the band members). You guys were incredibly fun, gracious and so awesome for just being willing to be there. And also to George's Lancaster track team members who showed up to offer their helping hands wherever we needed them!

Thank you to Frank Sansone, owner of J.R. Productions, who sent Miss Shell (the airbrush tattoo artist) to entertain our children. Thank you both for your generosity and time!

Thank you to all of the major players who helped out the day of the event-- there were so many people who showed up and filled in in so many different ways that if I tried to list everyone's names I'd likely miss someone. Please know how grateful we were to have your help.

Thank you to all of the individuals and businesses who donated baskets, supplies, food and funds. We had 260 baskets and 75 gift certificates to raffle off. And again, while there were far too many to be able to aptly list everyone's names/businesses, please know that your donations were very much appreciated!

And thank you to everyone who showed up at the event- for your patience and graciousness towards our family even when the space was small, seats were few and walking from one end of the room to the other proved to be a challenge (especially for those of you there with children!). So thank you all!


As for an update on Cliff and Dani...Life is busy for them. There are a lot of doctor's appointments and running around for medications and required items. The nurse comes by 1-2 times a week to do blood tests and check on Cordelia. While she is doing well considering the circumstances, Cliff and Dani have already been to the E.R. with her twice since she has been back. Once because her pic line (one of the lines that allowed for medications to be administered and blood to be taken without having to prick her with needles every time) moved significantly from where it was supposed to be-- they ended up just taking it out, which is o.k. except now there will be more needle pricks.

The second time was because the soft spot on her head was protruding...the hospital staff did a scan and said that everything was alright, but they are keeping an eye on it and hoping it goes down (not sure what could of caused it).

In addition to that her blood work came back with some off numbers this week-- too high potassium and an abnormal platelet count...they needed to do more blood work to verify and figure out what was going on.

So, while there are no major issues, the reality is that there are and will continue to be a lot of day to day challenges and idiosyncrasies involved in taking care of Cordelia.  Cliff goes back to work next Monday and Danielle will have her hands full with Cordelia's care taking.

Again, thank you all for the many, many ways you have already encouraged and supported Cliff and Dani. Their journey continues, so please continue to keep them in your thoughts and prayers. Pray for wisdom, for good and attentive health care, for protection over Cordelia during cold and flu season and for strength and help for Cliff and Dani.

Thank you!!!

Winning Baskets and Gift Certificates for Pick Up

Below is a list of winning baskets and gift certificates that need to be picked up!

Basket Number	Winning Ticket	Last Name	First Name
132	8720	Armbruster	Liz
63	8818	Barone	Russ
274	8580	Bowen	Brian
66	0311	Carncross	Jason
162	0227	Creenan	Anne
53	8875	Cronenberger	Jess
31	8874	Cronenberger	Jess
41	0323	Day	Denisa
199	0322	Day	Denisa
198	0322	Day	Denisa
87	0322	Day	Denisa
126	8605	Diaz	Rich
205	8598	Diaz	Rich
102	8595	Diaz	Rich
159	0316	Dugan	Carey
148	0316	Dugan	Carey
206	0178	Ehrhardt	Sue
122	8716	Feliciano?	Margaret
233	0109	Fulton	Angelica
169	0109	Fulton	Angelica
119	0108	Fulton	Angelica
275	3522	George	Leah
208	0268	Gonzales?
200	8849	H?
152	8848	H?	Larry H? (hard to read)
santa	0201	Hall	Rebecca
105	0201	Hall	Rebecca
Coors Light Chair	0084	Hodak	Jeff
257	0252	Hoy	Andrea
163	0243	Hoy	Andrea
166	0241	Hoy	Andrea
161	8694	Iliohan	Xander
240	8691	Iliohan	Xander
251	8805	Jesson	Jessie
147	0226	Koerner	Laura
144	0225	Koerner	Melissa
157	8983	Leavoy	Jason
221	8981	Leavoy	Jason
103	0233	Lezynski	Scott
camp chair	3540	Littlewood	Doug
243	8576	Lubacz	Serena
2	0033	MacGregor	Mary Ann
184	3511	Mccog?	Krista
185	3510	Mccog?	Krista
262	8641	Meyer	Louis
195	8829	Miller	Julie
179	8800	no name
270	8918	Papaj	Kathy
37	8895	Papaj	Kevin
45	0275	Ramaccia	Maureen
189	0274	Ramaccia	Maureen
93	0274	Ramaccia	Maureen
76	8873	Ray?	Shannon
256	0107	Sausaman	Chris
254	8647	Saxer	Travis
90	8646	Saxer	Travis
149	0034	Schmits?	Elaine
214	0016	Seegar	Wendy
201	8586	Sliwinski	Leonard
108	0221	Steinman	Joshua
14	8844	Szuthouski	CJ
216	8796	Teglash	Ann
225	0180	Toukatly	Janelle
95	0180	Toukatly	Janelle
212	0220	Walsh	Mark & Debbie
245	8655	Zang	Julie
187	0169
210	8957

98                   0217

Gift Certificate #	Winning Ticket	Last Name	First Name
26	0342	Lovering	Sharon
3	0341	Lovering	Sharon
33	0341	Lovering	Sharon
8	0259	Dirickson	Barb
32	0258	Hoy	Andrea
4	0256	Hoy	Andrea
Tullys	0194	Lattimer	Carol
Transit Music Bar	0192	Jusko? (Tusko?)	Marjone
Simply Certificate	0185	Sheman?	Tina
73	0180	Toukatly	Janelle
72	0169	?	?
Advaqnced Body Care	0118	Patterson	Becky
Bill Grays	0095	Thompsons
Buffalo Harley	0084	Hodak	Jeff
Mighty Taco	0083	Hodak	Jeff
45	0076	Williamson	Tammy
69	0048	Bauerlein	Chris
10	0045	Yeskost?	Peter
Good Feet	0045	Yeskost?	Peter
80	0045	Yeskost?	Peter
34	0042	Yeskost	Peter
Worlds Gym	0037	Kaczmarek	Melinda
38	0037	Kaczmarek	Melinda
Carpet Cleaning	0037	Kaczmarek	Melinda
67	0032	MacGregor	Mary Ann
37	8893	Heinrichs	Amy
84	8884	Robinson	Lori
75	8862	Shepp	Allison
81	8859	Shepp	Allison
Monkey See Bookstore	8809	Adema	Jennifer
Bowling Party	8809	Admea	Jennifer
1	8805	Jesson	Jessie
Olivers	8770	Smith	Rick
46	8744	?	?
2	8649	Langheier	Alexis
77	8628	Meyer	George
Ashley Home	8626	Rauls	Brian

Above is a name of winning baskets that need to be picked up alphabetized by last name. If there is a "?" next to the name it is because we could not read the name clearly...hopefully you recognize it!!!

All of the baskets are currently at Kathy Minter's House in Depew. Please call Kathy at 683-1851 to arrange for pick up. Call Kathy for address.

Baskets can be picked up all week (Monday-Friday) from 5:30-8:30 and Saturday from 9-1.

If you work at Amherst Alarm, or know one of us (Cliff's family members or Benefit organizers) contact the person you know and we can arrange to get the basket to you.

You must bring your ticket to claim your basket!

Benefit Update

Thank you to ALL who came out to support, donate and make Caring For Cordelia a success tonight!!!

More thank you's to come...but off to bed for tonight!

Also, we have a number of baskets and gift certificates that were won and have not yet been picked up. If you received a phone call (we did call some of you) we have your basket! Otherwise, basket numbers and winners will be posted by noon tomorrow!

If you know that we have your basket please call Kathy Minter at 683-1851 to schedule a time to come and pick it up (preferably between 5:30-8:30 during the week or 9-1 next Saturday)...More information will be posted tomorrow!

THANK YOU!!!

Check Out Cliff and Dani's Story on Channel 2 News

Some exciting news...Cliff and Dani are home and....

Their story will be featured on Channel 2 News tonight at 11!

An article about them can also be found on Channel 2's web page...Check it out here!

We're looking forward to seeing you all at the Benefit on Sunday! 

Another Great Recovery Week and Some REALLY Cute Pictures!

Hi everyone,

     As the old adage goes, "no news is good news," so is the case with little miss Cordelia and her mom and dad this week. Life in Cincinnati was pretty uneventful with Cordelia's numbers and stats all staying in the normal range.

     One really exciting piece of their week was having Cordelia's transplant bear hung up at Cincinnati Children's Hospital!  The hospital is quite large with many different floors/wings all devoted to very specific issues and illnesses. The floor that Cordelia was on was a gastrointestinal floor, and the section they were in was devoted in large part to liver patients. After a patient gets a donated liver and goes through surgery the family receives a bear that they get to dress (Dani ordered the adorable clothes!) and decorate. Here are a couple of pictures!!

     That scripture verse included on their bear's little sign is Isaiah 41:10...

"So do not fear, for I am with you;

Do not be dismayed, for I am your God.

I will strengthen you and help you;

I will uphold you with my righteous hand."

     Such powerful words and truth that Cliff and Dani have held onto throughout this entire journey. Words and a promise that will hopefully encourage and strengthen other families who travel this road in the future. 

     On another note of good news...Cliff and Dani think they may get released very soon!!!

     So soon that they are hoping one way or the other that at least one of them will get to make an appearance at the benefit next Sunday.  WooHoo!!!

     They hope to be released beforehand, but have said that if that were not the case they would try to at least make the trip this weekend to bring some of their stuff back to Buffalo either way! Let's all keep our fingers crossed for them! 

     A bit of a disclaimer for them, and I  know I've said this before, Cordelia's immune systems is EXTREMELY compromised for the first six months post surgery and Cliff and Dani need to be INCREDIBLY careful to not bring anything home to her when they are out in public. That said, if you are sick or have recently had a live vaccine (within 48 hours) you'll need to keep your distance from them once they are home...that goes for little ones too (if they've had live vaccines). 

     All good and exciting things!!!

     Please continue to keep them all in your prayers and to pray for protection over Cordelia as they get ready to come home and be on their own. 

     A few ADORABLE pictures to leave you with:

Cordelia can finally practice tummy time! A HUGE milestone for her. 

Getting ready cheer on her Buffalo Bills! 

Joy. Pure Joy.

       Don't forget to come see us at the Caring for Cordelia Benefit next Sunday from 4-8 at the Main and Transit Fire Hall! We have LOTS of great baskets and bigger items to raffle including an new I-Pad, a flat screen t.v., two Keurig Coffee machines, a Nook and a home alarm system from Amherst Alarm!!! Email me if you need more information!!

Happy 6 Month Birthday Cordelia!!

All is good in Cordelia's world this week!  And, today is her 6 month birthday!!!

Happy 6 month Birthday Cordelia!!!

We continue to count our blessings and praise God for the miraculous ways He works. She is happy and growing and thriving. She is smiling and playful and curious. It leaves me shaking my head at the miracle that has occurred for her to be in this place right now.

Life is crazy and complex and for all of the wonderful stories we've heard from other families with children in similar situations who are also doing well (a beautiful and wonderful thing!), we have also heard our share of sad stories...hard stories. We continue to pray for those families and none of us has answers to why those things happen...the hard things,the things we may never understand until we find ourselves in heaven someday....maybe then (maybe?) we'll understand with a little bit more clarity.

But for now I am incredibly grateful for our little miracle...and her mom, the hero, who got to be an integral and forever part of her miracle (The doctor called Dani a hero after both surgeries were complete!)!

The three of them (Cliff, Danielle and Cordelia) had a great week. They drove all the way to Kentucky for ice cream from Dairy Queen on Monday (it's actually only a 10 minute drive from Cincinnati to Ky!), and went to the aquarium on Tuesday. Cliff and Dani hoped Cordelia would like the aquarium a bit more, but Cliff said she was bored pretty quickly...I guess fish don't compare to all the high-tech hospital equipment and demonstrations she is used to!

Cliff's training team at the "gym" (in the Ronald McDonald House). That little Cordelia looks like one tough coach if you ask me! 

Cordelia's "numbers" (I'm not exactly sure what this means, but the nurses stop in to take "labs" once or twice a week and they are looking for certain tests to come back within certain ranges) have all been normal and good. There was a little glitch in her glucose numbers, but they think they have that figured out and aren't immediately worried about it.

The home health care/nursing staff is still working to maximize her nourishment and therefore have her on her feeding tube 16 hours a day, but Cliff and Dani are hoping to get her off of the feeding tube sooner rather than later so that she can start to figure out her own instinctual need for food, hunger, etc. They actually picked up some rice cereal this week, which Cordelia did not care for!

The most important medication that continues to be monitored is her anti-rejection medication. I asked Cliff if they would ever lower the dose, but he explained that as she grows in size/weight the amount of the medication actually is lessening (or becoming more diluted) as far as amount/percentage per. lb. Therefore, they just continue to give her the same amount and hope to not have to increase the dose too much as she grows...As I mentioned before, the higher the dose of anti-rejection medication the more her immune system is suppressed.

On a very exciting note, Cliff and Dani are hoping to be released to come home by very early October (possibly the first week)!!! WooHoo!! They are super excited about the possibility and can't wait to re-start their life back here. Their nurses are working on a "transition plan" right now where they are trying to set up the proper health care relationships in Buffalo, etc. They will need in-home health care to visit regularly and will likely also begin making trips to Strong Memorial Hospital in Rochester for any major imaging (MRI's, etc.) or other big appointments.

On that note, while they are really excited to come home they will be very limited in how much they'll be able to take Cordelia out and how many people they'll be able to have visit in the next few months. Cliff explained for example, that they shouldn't be around kids (or even parents of kids) who have recently been given a live vaccine because of the possibility of the illness being passed to Cordelia. In some ways this will all be a huge learning curve and we all just need to be super supportive, ask lots of questions and help them out as much as we can (sometimes by staying away if they need us too!).

That's all for now! We're getting really exciting for the benefit...we have received (and are still collecting!) lots of fun baskets and raffle items and looking forward to meeting many of you whom we have only heard about from Cliff and Dani or through email communications.

My daughter was with me at my moms tonight when we were working on the baskets and she has a heavy eye on one that includes some kids puzzles and silly string...you might want to stay out of her way, she went to bed asking how she could up her chances of winning it!! (:

Pre-sale tickets are $20...Track one of us down and let us know if you need them! They are $25 at the door and kids 12 and under are free.

Blessings to you all!

New Sights and Sounds for Baby Cordelia!

Cordelia got to see a bit of the world this week!!

Cordelia going for a walk in her stroller. Her feeding tube is on 16 hours a day and off 8hours, so during those 8 hours Cliff and Dani can take walks or run errands if they want. 

...well, when she wasn't sleeping that is! 

It's funny the things you can take for granted, like the fact that most children (mine included) had seen the sites and sounds of dozens of stores and public places and had met countless people at church, through work and in our everyday comings and going before they were three or four months old.

Little Miss Cordelia...she's met LOTS of doctors and nurses, but for the most part has spent a significant part of her life cooped up within the four walls of a hospital room. So, new places and faces and spaces...this is BIG stuff for her.

They have taken a walk or two, drove to the bank this week and even ventured to Target on one occasion!

It's nice to hear Cliff talk about some more normal day to day things like how nutty it can feel to pack a diaper bag and a baby and all the stuff that follows along, get down to the car, get the stroller in the trunk, put the car seat in the back and then finally venture to somewhere as simple as...the bank.

I teased him about the inevitable that you get all that stuff packed up and then realize you either forgot your wallet in the house or the baby suddenly has a stinky diaper!! That hasn't happened yet, but I'm sure it's coming (:

Cliff said that Cordelia is pretty happy these days and very curious. Curious about her feeding tub, his cell phone, anything her little hands can reach. Apparently, she is also trying to scoot across the bed (the only soft surface in their room) on her back. She hasn't been able to do the typical "tummy time" yet and as is typical for her age wants to MOVE.

From a medical standpoint she continues to do VERY well. As a matter of fact the doctor's reiterated to Cliff and Dani yesterday just how pleasantly surprised that are at HOW well she is doing.

The doctor's prompted Cliff, Dani and Cordelia to visit the hospital wing/floor where she had been pre-surgery to visit with the staff who took SUCH good care of them for the two months they were waiting for surgery. The nurses were thrilled to see Cordelia doing so well and grateful to have gotten a visit and to have been part of their journey!

In so many words...the whole thing truly is a miracle. The two successful surgeries (hers and Dani's), the recovery, the wisdom and skill of the amazing medical team in Cincinnati. There were some pretty significant risks and challenges going into those surgeries for both mom and baby, making us all that more grateful for the incredible outcome. As long and hard as this road has been, we are all so thankful to feel so covered in God's grace, wisdom and blessings. It has certainly strengthened my faith.  I posted some thoughts on miracles on my own personal blog shortly after the surgery...if you feel like reading a bit more feel free to click here.

Thanks again to those who joined in to purchase the I-Pad for Cliff and Dani...they have really enjoyed using it! Cliff told me last night they enjoy linking up with The Chapel (mine and Katie's home church) online to watch the music portion where he likes to show Cordelia the live video of Uncle Scott (my husband) playing the guitar on The Chapel's live feed Sunday mornings...Uncle Scott was feeling pretty proud!!

Also, Cliff's good friend George sent them some sort of NFL football hook-up app that will allow them to watch the Buffalo Bills game on their t.v. through the I-pad tomorrow!! Cliff said he was pretty excited about that because typical Sundays in the past included going to George's house to watch the Bills games. While that is not possible at the moment, he's excited to be sharing in the Bills game through George's ingenuity on sending the app along...thanks George!!

And thank you ALL for your incredible outpouring of prayer, generosity and support. There have been SOOOOO many small acts of kindness and generosity, things I have heard about and probably just as many things that have been done in humble and quiet ways to love on Cliff and Dani. It has truly restored some of my faith and belief in the kindness and goodness of humanity towards each other.


Fundraising
On that note, the Caring For Cordelia benefit is quickly approaching. The date is Sunday, September 30th from 4-8 p.m at Main & Transit Fire Hall. 

Even though we are on the other side of surgery, I'm sure you can imagine the many medical costs Cliff and Dani will still have, especially over the next couple of years as Cordelia continues to recover. For all of those reasons the Caring For Cordelia benefit is a VERY important piece in coming together to help relieve some of their burden. 

Here are things you can do to help us out now:

1. Buy a ticket! Feel free to email me at lisa.littlewood@gmail.com if you need tickets and aren't sure how to get them. They are $20 presale and $25 at the door.

2. Make a basket for the raffle! We have gotten many baskets in all sorts of shapes, sizes, and thematic ideas. Please keep them coming. The more baskets we have, the more fun the raffle will be. Again, email me if you'd like to make a basket for the raffle, but need some suggestions or ideas!!

We are trying to arrange pick ups/drop offs (at my moms) of the baskets by September 21st! 

We've had many creative folks just pick up items and put themed baskets together and others have been goods donated from business...so, if you are a business owner or know a business owner, please considering donating to the benefit!

3. Volunteers We will need some volunteers the day of. Please let me know if you are interested in helping and I will pass your email information along to our volunteer coordinator. We'll contact you the week before the event to let you know where we'll need you and when to show up.


Thank you all!!

The New "Normal"

   

      Cliff, Dani and Cordelia are all settling into their new "normal"-- a pace that is still "busy", but much nicer than the constant daily hustle of the hospital. While they do have a home health aid that comes to their room at the Ronald McDonald House 3 times a week and their own 3 times a week trips over to the hospital (which is right next door), they at least have sanctioned quiet at night (yay!) a much larger bed to sleep in (double yay!) and can do their laundry right across the hall. You really realize how much you appreciate the simple things after life has been anything but simple!

     AND, Cordelia has had several nights where she has slept 7-8 hours a night...I think that might get a hundred "yays!" Despite the fact that Cliff and Dani do have to change Cordelia's feed bag (she will be on a feeding tube to "catch up" on as much nutrition as possible until they come back to Buffalo- she's on it from 4 p.m. to 8 a.m. every day and Dani tries to feed her normally in between), and Dani gets up through the night to pump milk for Cordelia,  Cliff said if they were getting 3-4 hours of sleep while in the hospital, that they're getting 6-7 now.

   So their new normal includes nights with a baby that sometimes fusses for a binky or a sore tooth, and getting up for "feedings" (even though a bit untraditional right now!)..It's at least somewhat typical baby stuff...Not nights where they finally get the baby to sleep only to have a nurse come in to take a temperature or a blood draw!

    Of course their lives are anything but "normal" in many other regards, but again, they are so grateful for these simple things and these simple moments with their beautiful daughter who is returning to health.

    When my mother in law was visiting them last Friday she recalls Dani saying that "she couldn't wait to snuggle in bed with her daughter."

    They got to do that MANY times over this week...just hang out, side by side, sleepy and quiet.

   Cliff ran out to pick up a pizza a put gas in his car yesterday...and was hit up by a homeless man in Cincinnati for spare change! He said it was nice to be able to run out for food though, and then eat quietly with his wife.

   They are now allowed to eat their meals in their room together as well. Typically the Ronald McDonald House does not allow food in the room, but in certain situations (like theirs) where there are immune suppressant issues they make an exception.

   Another part of their new routine is the 9 medications they give to Cordelia every day. They include her anti rejection medication (which they are still trying to tweak to the lowest dose possible while being effective. They higher the dose, the more her immune system is suppressed), steroids (to help prevent rejection), a blood pressure medication (because one of the necessary meds causes high blood pressure), as well as a host of antibiotics and magnesium supplements.

    Apparently the first 60-90 days are the most crucial as far as fighting infection, so all of these are important right now in helping her to reach that benchmark infection free!

     As for prayer requests, Dani said to just continue to pray for Cordelia's protection because her immune system is compromised.

   On one final note, perhaps one of the best parts of the "new normal" is the regular smiles that Cordelia has for mom and dad!!!

   

Getting Discharged This Week!

If you haven't already heard, Cordelia is doing SO well that she will be discharged from the hospital either Monday or Tuesday!

As you can imagine, this is HUGE!!

Cliff and Dani were telling me this weekend that Cordelia's surgeon was incredibly worried about her pre-surgery. So worried that he thought if she would have gotten an infection her body might not have been strong enough to fight it off.

Now, he is so happy with her progress and how she is doing that they should be discharged early this week and will begin their next portion of the journey at the Ronald McDonald House full time for another 4-6 week. Their discharge date is 3-4 days earlier than the average for this kind of surgery. A huge praise to God for this incredible outcome!

What this means is that Cliff and Dani are learning the details about becoming Cordelia's primary caregiver-- everything from giving her her medications, to continuing some of her nutrition through the feeding and many other details that seem a little bit big and overwhelming right now, but will hopefully all fall into place once they begin to settle into this new phase of recovery.

Dani's recovery has been slow and steady. Please continue to pray for her healing. There has been some relatively normal pain associated with the surgery that she has been experiencing...The doctors have given her orders that she shouldn't be doing much of anything for a good month...hard for a new mom with a recovering baby, but she's trying! Pray for her healing and strength.

While all of this is VERY good news, Cordelia's next phase of life and recovery comes with new challenges. She has been started on her immune suppressant medications...she will likely need to take these throughout her lifetime so that her body does not reject the liver. This means that Cliff and Dani need to be very careful about where they go and who they see.

Cordelia will not be able to receive any of the normal baby vaccines because they would make her very sick...She actually cannot even be around a child who has just had a live vaccine because it poses a threat to her.  They are not allowed to take her into public places for 3-6 months and will always need to steer clear of things like public pools, etc. (Places where a child could easily pick up a virus).

Please continue to pray for protection over them all as a family-- over Cordelia especially as she will be prone to getting sick easily. And for wisdom, strength and energy for Cliff and Danielle as they continue to navigate this sometimes tricky road they are on.

Out of ICU!

Just wanted to let you all know that Cordelia was moved out of ICU today!

Not only that but Cliff and Dani said that she was smiling ALL DAY LONG! Way more smiles than they have EVER seen from her before.

I've gotta say, that's probably one of the most incredible things I've heard in a couple of months!!! I can only imagine how much better she must be feeling to be finally smiling spontaneously.

The doctors joked that a little girl who was smiling that much was not allowed to be in ICU.

So they are back on the 4th floor where they were before Cordelia's surgery and have had a lot of visits from the doctors and nurses who were caring for her before the surgery who are SO excited to see her doing so well now.

While not of huge concern at this point, her blood work today did show some slight "rejection" (when the body rejects the organ), but we were told that this is perfectly normal, that it helps the doctors to fine tune her medications and that it actually helps her body to build up strength/tolerance to the organ.

She was also showing a small amount of blockage in the bile ducts...also not out of the ordinary, but something we could pray that goes away and does not get worse.

Her pain also seems to be subsiding somewhat...in typical Cliff and Dani fashion they joked that their baby gets morphine for her teething pain! (She has been teething over the last couple of weeks!)

Cliff and Dani sounded good...tired, but good. Dani said she is starting to be able to eat more without feeling nauseous, so that is a very good thing.

All good things to be thankful and full of praises for!

Healing, Recovery and the Blessings of Others

Hi everyone, If you are already on Facebook you may have seen some of these posts, but for the benefit of those of you who are not I'm copying some of the updates that Dani posted on Facebook for you to all have the blessing of reading. 

Cliff and Dani received their I-Pad on Monday and Dani is typing beautiful posts on Facebook! Here is a picture they posted this morning!!!

(A facebook post from Dani)

I was thinking though and when we started this journey it could've been a dark scary road and trust me there are moments. But this has grown our faith and really cemented so much of the Bible and God's truths for us. I never wanted Cordelia to go through this but since she had to I see that there have been way more blessings than bad things.

(A second post from Dani)

At first we started trying to think of one thing we were grateful for. Like at least her lungs work well, she has a functioning brain, her heart beats wonderful. You get the idea.....today I was thinking of what we had to be grateful for and there was SO much I don't think there's a computer big enough to store it all. 

I know we're not "out of the woods" yet but I know with everything in me that God will make her well and we will get home to "regular" family life. At the beginning of this another patient family said everybody's normal is different. it really is true and what a relief that statement has been! There are so many things to give thanks for. 

I wanted to say......to our families, friends, church family (the one we attend and the many other churches that have heard of us or someone we know is a member and have been praying us through this. What a marvelous example of how the church body works as God's out stretched arms) coworkers, neigh

bors, nurses, doctors, pca's, the cleaning staff, basically the entire hospital staff and liver team, pediatricians, obgyn staff, the blood draw lady at the kaleida lab on sheridan, the wonderful case workers at bluecross, our employers, acquaintances, and even kind strangers....thank you!!!! 

I know this is terribly in adequate way to thank you all. I'm sure i've probably missed some people. You've blessed us more than I could ever put into words or even imagined was possible. There has been such an outpouring of love, We are awed and humbled. Through prayers(our largest need), cards, letters, baked goods, home cooked meals, thoughtful care packages, the way you've all loved on our daughter, conversations, texts, prayer warriors, visits, helping us make ends meet....we've been so blessed. I'm missing so much here. Thank you all! When we get home I have a hug for everyone of you! 

I really don't know how we will thank everyone. I can't wait to be able to start serving in the church again and volunteering so we can help others like we've been helped. God is so good! He's given us so much of His favor. Held us through this. The promises He makes like, "I will never leave nor forsake you. I know the plans I have for you plans for good and not evil" I know it may seem odd to some He doesn't want our children to suffer this is a fallen world, but He really has taken care of us through all of you and so much of His grace and mercy. Even just the peace He brought before surgery, such a big amazing loving God! Thank you all.

I was thinking though and when we started this journey it could've been a dark scary road and trust me there are moments. But this has grown our faith and really cemented so much of the Bible and God's truths for us. I never wanted Cordelia to go through this but since she had to I see that there have been way more blessings than bad things.

(Cliff and Dani's comment on the blog after receiving all of those wonderful food cards and then the I-Pad...which by the way, Cliff told me yesterday he and Dani picked up some I-tunes gift cards so that they can start downloading music and they were watching "Too Cute" (from Animal Planet) with Cordelia yesterday!!!)

Thank you to all those who contributed to the I-Pad. Your generosity is so humbling. We appreciate this so much! It will come in very handy. I believe I should be able to figure Skype out. Although I am a bit of a Luddite and generally speaking err toward the old fashioned way of doing things part of my job at Verizon was helping people set up their devices. I ve never really used much of the stuff myself though. If anyone who would like to Try skype with us and is quite patient, please contact one of our phones or Facebook and we'll give it a go.

I know Cliff misses watching football with George, it's a bit of a tradition. I think being able to watch the game and at least guy talk with him later will really make him happy!! Previously he's been trying to do that on a 3x5 screen at least when we're not trying to make sure our little ninja isn't trying to take tubes out. I was concerned for the potential eye damage it was causing. 

We really appreciate the outpouring of love with meal cards. You've all been more than generous. I'm still humbled by the generosity we've experienced. I lost a bit of weight in the surgery recovery process and really appreciate the meal cards. Thank you. I think Cliff was able to catch a picture of Cordelia smiling this morning and I will try to post it later. I know we're not totally out of the woods" yet and won't be for awhile. Up until now the best we hoped for is that she wouldn't get worse, that she would hold steady. God gave her a fighters spirit. This is the first time in 5 months I can look at her daily and see Cordelia getting better. It is a miracle! God is so good! 

Monday August 20th Update

Hi Everyone,

Just wanted to post a quick update because I know you all are praying for and thinking about Cliff, Dani and Cordelia.

It's been a bit of a tough day... all good progress, but tough for Cordelia. She underwent a very short surgery this morning (about 45 minutes) where the Doctors went in and stitched up all of the abdominal muscles that they had left unstitched after her surgery last week to leave room for inflammation and to allow for healing and in case they needed to go in and do more surgery on her liver, which they have not needed to do (a blessing!).

My dad said that Cordelia is actually in more pain after this surgery than after her liver transplant last Tuesday because everything around her organs and abdomen in now very tight and because of the surgery, very sore. Please pray for baby Cordelia tonight...that the pain would subside, that she would be calm and peaceful, that God's hand would be on her.

Dani is recovering slowly. She was discharged today and is going to sleep at the Ronald McDonald House with her mother tonight. It will be nice for her to have a nights sleep without nurses, etc. coming in to do stats and check on her.

She is still feeling pretty nauseous and moving slowly. My parents leave tomorrow and Dani's mom leaves on/around Wednesday at which point Cliff and Dani will be back at this on their own. They could use extra prayers and blessings this week for strength and energy--- For Dani to start to feel better in the midst of taking care of herself and Cordelia and for Cliff as he navigates trying to care for his wife and his daughter.

If all goes well, Cordelia will be in ICU for just a few more days. Cliff said that later this week the nurses will allow them to do a "trial run" up in ICU where they are standing by as Cliff and/or Dani administer Cordelia's medications and do everything else necessary to care for her right now.  After that she will be in a regular room for 2 weeks or so and then they will be discharged. Once they are discharged they will remain at the Ronald McDonald House for another 6-8 weeks for outpatient treatments.



P.S. Cliff and Dani received a new I-Pad from some of you today!! They are THRILLED. There are many things they are going to be able to do wit it...Thank you all for the very sweet gift and blessing! They have been checking all of their email, doing internet searches, etc. from their cell phones. The I-Pad will allow them to listen to their own music in their room, email much easier, do internet searches, etc. etc. If they are really ambitious maybe they'll even be willing to skype in a few weeks!

Cliff joked today that he has been checking Bills updates/coverage on his cell phone (when he actually has a free moment!) so now he'll be able to check updates more easily! (:

Also, a great big THANK YOU to the many of you who donated food cards to them. Cliff said they will be able to easily each eat 3 meals a day for the remainder of their time in the hospital without a worry!!! Food is, after all, on of the great medicines, right?!!

Momma and Baby

Wanted to share a picture of the "two angels" Cliff sent to me earlier today. 

Cordelia is finally unhooked from enough of the equipment that she can be held again! She spent a LOT of time in Grandma and Grandpa's arms today and of course in Moms and Dads as well! 

It was another good day for Cordelia. My parents said she was very alert and that she was even cooing and babbling as if she were trying to have a conversation with them. 

Dani is doing pretty well, though not feeling totally up to par today...She is in some pain and between the surgery and a couple of the medications she is on she has been battling some nausea throughout the day. Please be praying that she gets the rest that she needs and that her recovery would be swift and complete. 

Here is another picture of Dani and Cordelia from last night...Texted to me with a note that said, "Mother of the year." I couldn't agree more! 

A Few More Photos...

Just wanted to share a few more photos with you all! Cordelia is doing so, SO well. It is remarkable and amazing and a total blessing! God's hand is moving strongly in her life and she is growing stronger with each day.

She was put back on her feeding tube today, which means she is getting "real" (whatever that is in baby hospital language!) food again and my dad said she is off almost ALL of her pain medications.

One of the very sweet nurses brought this cute little pink robe/gown/dress in today so after they put it on her my dad sent this picture with a note that said, "All dressed up with no place to go."

And here are a few pictures of Cliff with Cordelia today...

Cliff has been moving back and forth as much as possible between Cordelia's room and Dani's room. He's sleeping in Cordelia's room while Dani's mom is in town and can stay with Dani at night. Dani is also recovering well...I've been bugging Cliff and my Dad for a picture of her and Cliff as soon as she's ready (:

Thanks for all of your thoughts and prayers! There is still a long journey towards health, but we seem to be off to a great start!