Wednesday, October 10, 2012

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!!!

Monday, October 1, 2012

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!

Sunday, September 30, 2012

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!


Tuesday, September 25, 2012

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! 

Saturday, September 22, 2012

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!!

Saturday, September 15, 2012

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 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!

Saturday, September 8, 2012

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.

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 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, 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!!