Rounds Inspirational Journeys

Hello! I wanted to let you know about my new blog. Many of you have been interested in the recipes I am trying, so I decided I would create a blog specifically to document my new cooking hobby. I will try to post pictures of what I have made as well as the recipes there. You can check it out at: http://cookingforfunwithnancy.blogspot.com/ Hope you will visit. All my love! Nancy

I just wanted to share the wonderful news that Cammi will be moving out of ICU and onto the main transplant floor as soon as a bed becomes available. Her diaghram test has been moved to tomorrow, so keep those prayers flowing. Thank you all! Nancy

Dear friends, I received a youtube video over the weekend that I had to share. I try to stay out of politics and certainly don't choose to talk politics here, but this goes beyond politics and way beyond any political party. We have a crisis going on in our country. People are being denied health care every day because they have no insurance coverage. What a sad state of affairs that in a country like ours, people would not have the option of affordable health care. Do you have any idea how many people have died because they couldn't afford a life saving transplant? Had I not had insurance, I too, would have lost my battle with CF because we never could have raised the million plus dollars my transplant cost. I was recently speaking with another transplant patient who, at the time of his need for transplant, was told he would need to put down a $25,000 deposit before he would even be seen at the transplant center. Who has that kind of money? When I became too ill to work any l...

I wanted to share with you video from Hannah's performance today in Allegany . She did two new dances, the first one she only just learned on Wednesday. She was very proud of herself for getting through it, as was I! (Be sure to pause the music player while you watch the videos. Hannah is the tallest girl, in case you have trouble telling them apart.) The Ending The Four Hand This weekend has felt like a homecoming weekend for me. Last night we attended a concert at St. Bonaventure. It was my first time back on campus since my transplant and I was greeted with so much love and happiness. It felt so good to be back and even better to see some of my dear University friends. Today we went to Bonagany which takes place in downtown Allegany and is jointly hosted by SBU and the community. Again, I ran into many familiar faces, all so genuinely pleased to see me doing so well. What a wonderful feeling to be embraced by your community the way that I have been, thank you to you all! All...

Dear friends, I want to ask of you a very special favor. My friend Cammi needs your prayers desperately. Instead of trying to explain it myself, I will use the words from her husband Lance's recent post: "You may recall that in a prior blog post I mentioned that Cammi's diaphragm hasn't been fully functioning. We learned tonight that this coming Monday Cammi is scheduled to have a study done on her diaphragm to determine how well it is functioning. The results of that study could greatly influence the future prognosis for Cammi's lungs and the future strategy for Cammi's recovery from her lung transplant. Based on tests that have previously been conducted on Cammi, it appears that her right diaphragm is not functioning and her left diaphragm has limited function. It's still unclear to what extent the left diaphragm will be able to strengthen and give her more breathing support. Because the diaphragm is an important muscle in the breathing process, its dimin...

Hello friends! The last few days I have been really rejoicing and appreciating how far I have come in the last year. Things were getting tough at this time last year, I had really deteriorated and was fighting for my life. This year I am overjoyed with all that I am able to do. We went to Hannah's Meet the Teacher last week. For those of you who have been following my blog since last year, you might remember what a struggle it was for me to get there. I was in my wheelchair with my oxygen and the 30 minutes we spent at the school wore me out for days after. This year was a breeze and so many people were amazed to see how far I had come. My favorite comment came from one of Scott's childhood friends who said, "Wow, you're twice the woman you were last year!" What a fun compliment. As my 35 th Birthday approaches, I have so much to celebrate. I am hoping to have a party this year, I think I deserve it. I have so much to be excited about and thankful for! I...

I don't know if you followed this year's America's Got Talent, but I have been rooting for one particular contestant from the start. His name is Kevin Skinner and last night he won. He may not have been the most talented act, Barbara Padilla was incredible and Recycled Percussion were exciting, but he was, BY FAR, the most genuine. If you have not seen his first performance on the show, please take the time to watch the video above, pause my music player first. I saw it live and will never forget it. Kevin walked onto that stage and the crowd reacted by mocking and laughing at him. It was obvious no one expected him to be able to perform well, but when he started singing, the room grew silent and the audiences' hearts were moved. How often do we judge others by their "covers"? How sad that we might miss out on a gem because of its rough external edges. I am thrilled that America voted for Kevin. I am thrilled that a chicken farmer from Kentucky with poor math...

Please read this article, I had no idea showering was putting me at risk and you may not either. Nancy Study: Showerheads May Deliver Blast of Bacteria By Denise Mann If the shower scene in Alfred Hitchcock's Psycho scared you, here's another reason to scream: A new study says that potentially disease-causing germs can get trapped in showerheads and grow into biofilm, or coats of slime that deliver a bacteria blast along with your hot water. Although the classic horror film gave legions of moviegoers a fear of showering, the new study shouldn't do the same, experts say. The bacteria probably don't pose a threat to most people, although they could be problematic for those with weakened immune systems. Showerheads are dark, wet, and warm -- the ideal environment for bacteria that cause lung diseases to thrive. As we turn on the faucet to get clean, the showerhead may spray our bodies and the air around us with such opportunistic bugs as Mycobacterium avium and other germ...

Hello! Some of you were wondering about the bandage that has been on my hand and I realized I hadn't shared my burn story. Hannah was blessed with Scott's and my eyebrows (lucky girl!) Irish, English, and Italian... not a great mix for body hair. As early as the first grade kids teased her about her mono-brow, so, being a compassionate mother who is also cursed with a mono-brow, I began waxing her eyebrows for her. The day before school started, we were getting her ready, painting her nails, washing her hair extra well, picking out school clothes, and, of course, we needed to tame the brow. I use microwave wax and have never had a problem with it. I went to get the hot wax out of the microwave and it EXPLODED!!! Hot wax flew everywhere! Luckily, I only got a little on my face, but the hand that was holding the jar REALLY got it (as well as the kitchen floor, counter, cabinets, and sink). I received a nasty burn and required the assistance of my PA brother-in-law to painfully re...

Cammi got up and walked around her room several times yesterday, was off the ventilator for SEVEN hours, and got her hair washed for the first time since transplant. PRAISE THE LORD!!!! Keep sending those prayers her way!

Before my lungs entered the end stages of CF, I was a working woman. I loved my job, I got great satisfaction out of it, and I felt it defined who I was. When people asked what I did for a living I would proudly reply, "I am a disability counselor." I got my sense of self-worth from what I did at my job. I can remember wondering how women could stay at home. Wouldn't they be bored? Wouldn't they feel unfulfilled? Where would they get their sense of accomplishment? I believed I could never do that, certainly I would be bored. Boy was I wrong. It is not what you do, but how you do it. I took pride in being a counselor and gave it my all, that is what made it special. Homemakers are no different, they take pride in their home, in caring for their family, in making the home environment be as wonderful as it can be. What an awesome and important responsibility! I don't think I was a very good homemaker in the days that I worked. I took no pleasure from the...

Hello friends! It is hard to believe we are already midway through September. The days are feeling more like fall and the trees are starting to turn. I love the fall, everything about it! I am trying to get the house straightened up so I can bring out the fall decorations. I love them almost as much as my Christmas decorations! There is a large pumpkin patch in the field in front of our house and Hannah has already picked several beautiful pumpkins. My life is so filled with blessings and joy! We survived our first trip to Buffalo for Hannah's Irish dance lessons. The class she went to Sunday was not advanced enough, so this week she will be attending a more advanced class. It was quite overwhelming reading the packet on the way home in the car, but this is what she loves and we are prepared to commit and support her passion. I took Hannah for her flu shot last week and learned that for 6 th grade she will need two more Chicken Pox vaccines. Of course these are live virus...

Hello! Sorry I haven't written in a few days. I have been struggling with fatigue and have been sleeping a lot. I am hopeful it is just because I overdid last weekend, but it has been a bit disconcerting. I haven't felt like this since before my transplant, not wanting to wake up and staying in bed much of the day. I am trying not to fight it and to give my body what it seems to need, hopefully I will be back to my energetic self soon. My dear friend, Cammi, has had a few rough days. Her ventilator was finally removed, but she has been struggling breathing on her own, so yesterday they inserted a tracheotomy. So far, that has seemed to bring her some peace and comfort from the anxiety of breathing on her own. Please pray for her continuing recovery. She is doing such a great job and is fighting like a pro, I am so proud of her! All my love! Nancy

As of this morning, Cammi continues to do well.  She is fully alert now and is able to communicate using a whiteboard.  They have been turning off the ventilator for test runs and hopefully, she will have the vent removed soon.  Yesterday she was put in a chair for several hours and I can tell you from experience, that was uncomfortable and very tiring.  Her pain seems to be well controlled which I am extremely thankful for, it took them several days to get my pain controlled.  Cammi is a fighter and she's strong, I am betting she will be out of ICU by the weekend. Keep those prayers coming!  Thank you!  Nancy

Hello! Scott and I had a wonderful weekend adventure. We left Olean around 12:00 on Thursday and headed to a State Park outside of Pittsburgh where we camped for the night. We were right on a lake and enjoyed a lovely evening with the full moon reflecting on the water. Friday morning we had my research appointment at UPMC, so we headed out early. All went well at the appointment. My pulmonary functions were down a little to 86%, but I don't think that is anything to worry about. After the appointment, we headed back to the state park, packed up, and headed to Steel City Race Track. This was my first time at a pro motocross race, so I wasn't sure what to expect. We were instructed to find a place to camp on the hill, so we tried to get as close to the track as we could and set up the camper. We were told there were different sections, a family section, a controlled party section, and an anything goes section. We thought we set up in the family section, but the tents next to us p...

I have been dying to share this wonderful news with all of you. Friday morning after my appointments at UPMC I realized I had a voicemail on my cell. It was Cammi's mom, Judy. She called to tell me that Cammi was in surgery getting her new lungs, PRAISE THE LORD!!! This has been such a long time in coming and Cammi deserves those new lungs so much. I have never met a more devoted wife, mother, and daughter. She has become such a close and dear friend and I was a wreck all day Friday waiting for the news that the surgery had gone well. As of last night, she had still not regained full consciousness, but her vitals are good and things are moving forward successfully. When she does wake up, it will be hellish for a couple of days, those first couple of days in ICU were the worst of my life, so she needs your prayers for strength, courage, and peace. Thank you to all of you who were praying with me for the miracle of new lungs for Cammi. Prayers work! Never lose faith, even when things...

Hannah started 5th Grade on Tuesday and so far she seems to really be liking it. She got a really fun homeroom teacher, Mr. Rogers, who I think will be very encouraging during the year. Her schedule is going to be hectic this year. She is taking Irish Dance in Olean on Wednesdays and in Buffalo on Sundays (she is hoping to compete this year), she has a Theatre class on Tuesday evenings, and piano lessons on Thursdays. She then needs to fit in homework, and practice the flute, piano, and her dance steps. It seems like a lot for a 9 year old, but hopefully she can handle it. Today was school picture day, here is what she wore. My mom left yesterday. It was hard to see her go, but we had such a great visit. We are hoping they will be able to return for Christmas and, depending on the flu situation this winter, our family would like to visit there in February. Scott and I are headed to Pittsburgh today. I have a research appointment tomorrow morning, then we will be attending a professi...