Rounds Inspirational Journeys

Dear friends, I hope you all had a relaxing holiday weekend. We got out our Christmas decorations which I have to admit was bitter sweet. It is very important to me that Hannah have a happy Christmas, even with all that is going on, so I was bound and determined to leave this house decorated for Christmas. Of course, we couldn't put out everything, that just wasn't practical and our 9 ft. tree was too overwhelming to think of putting together and decorating, so Scott found an inexpensive 6 ft. tree that my dad assembled and Hannah (with a little help from me) decorated. We were careful to only use non-breakable ornaments, keeping in mind we have a kitten who is fascinated by her first Christmas tree. We took out a few special ornaments to take to Pittsburgh for the little 3 ft. tree we will have in our apartment there that Hannah will help us decorate next weekend. It was a sad weekend for me. First, knowing I will not be home to celebrate Christmas was looming in my mind....

I would like to begin this post by saying my prayers go out to all of the people who are being affected by the recent terror attack in Mumbai. I will never understand why some people feel the need to harm others. May we all keep those who are being held hostage, those who have been killed, and the families who are grieving in our hearts and prayers. Miracles come in all shapes and sizes, from the raising of Lazarus to a beautiful sunrise. Sometimes we are too busy to notice the miracles that are happening all around us and that is truly unfortunate. Yesterday was a day of miracles for me. I so desperately wanted to have a good Thanksgiving. Last year I was so sick from my gall bladder that I couldn't eat at all and was pretty miserable the whole day. This year, I just wanted to be able to eat, even a little, and be able to enjoy my family. God came through with shining colors (as He always does). I was able to shower and get "dressed up" (my typical wardrobe lately consis...

There are times in our lives that we don't always see God's blessings right away. Sometimes, they are disguised, and the things we once thought of as bad, or scary, turn into a wonderful blessing. by: Janet Lynn Mitchell May you always be richly blessed by His never-ending goodness. Happy Thanksgiving! My love and prayers go out to all of you and I give great thanks for the love and support you have given to me. May you have a very happy and blessed Thanksgiving! All my love, Nancy

I got an e-mail yesterday from my dear friend Debbie, and she shared the most touching and wonderful story with me. I asked her if I could share it with you. Debbie and I grew up together in Jackson Hole and have been best friends for years. She has two beautiful children, Blake and Britney, who I love like a niece and nephew. Before I got too sick to travel to Jackson, we used to plan our summer trips home for the same time so we could spend lots of time together. Hannah loves Debbie and her family, and we have shared some wonderful times together. Blake is one of the most compassionate, sweet little boys I have ever met. He is a treasure and I love him very much, so you can imagine how moved I was to read Debbie's message: Dear Nancy, I wanted to share something very heart warming and special. In Blake's class at school, they are writing letters to Santa. In Blake's letter, he asked Santa his usual questions and then asked him for his one thing that he wants for Christmas...

I can't think of a more important, yet too often unappreciated, job as that of the home-maker. You know who I mean, don't you? The person in your family who keeps things running smoothly and makes sure everyone is cared for and has what they need. This is the person who keeps clean clothes in the closet, warm meals on the table, dirty dishes out of the sink, every one's social calendar organized, and makes your house a "home". When was the last time you truly appreciated all this person does for you? When was the last time you thanked him/her? Unlike other professions where a job well done is rewarded with promotions, bonuses, or raises, the more successful a home-maker is, the less likely anyone is to notice. When things are running smoothly in our homes, we tend to take for granted the person who is orchestrating that smoothness. It isn't until that person is unable to perform that all they do for us comes to light. Why do I bring this up today? Bec...

I had one goal for this week, and that was to see Hannah play basketball. This is her second season playing and I have yet to feel well enough to go to a game. Yesterday I was determined, no matter how lousy I may feel, that I was going to go to the game, and I DID! I may feel like I was hit by a bus today, but boy was it great to see my little girl play. She even made a basket! Hannah seemed very excited to see me there. She didn't know I was coming, having gone home after school with a friend for a sleepover party, so it was a big surprise. So, Hannah had Scott, me, and a cheering squad of girlfriends to support her at the game. This morning when Hannah got home from her sleepover, she brought me a special surprise. The girls had made pillowcases and all four decorated a special case for me. I was so touched and thrilled to receive such a special gift. So, today is a day to rest. The fire is burning in the fireplace and there is a beautiful snow cover outside. It is the perfect d...

Hello friends! Yesterday was a LONG day. Scott and I took a road trip to Pittsburgh to look at an apartment. We had to choose the day a blizzard was raging through PA to do this, we can never do things the easy way, but we did get there and home safely and were pleased with the apartment we looked at. We will be moving in two weeks to West Mifflin, PA. The place we will be living is called Southpointe Towers and is located in a very quite neighborhood in Pleasant Hills, about 25 minutes from UPMC. (Obviously, we will not be using the pool, much to Hannah's disappointment!) The manager of the building was extremely welcoming, as were all of the staff and tenants we met. It is a very quiet building that seems to have mainly older residents and I got the feeling it is very much a community. They are currently working on a bake sale to raise money for a wheelchair for one of the tenants and we were invited to the community Christmas party. (The lobby) The apartment we chose is a two be...

Sweet Pea was feeling left out, so she wanted to pop on and say hi! Sorry to those of you non-cat lovers out there, but she sure is CUTE! : )

Hello! I would like to begin by apologizing for my blog. I decided to try a new template today and basically wrecked everything, way to go, Nancy! I am trying to figure out how to restore what I somehow deleted and hopefully will have everything back to normal soon. We received word last night that one of our friends from Family House passed away yesterday. Her name was Tammy and she and her father had moved to Family House soon after we did in May. She had had a small bowel transplant, I am not sure how long ago, but her organs had gone into rejection in May when we first met. She waged a long battle with the rejection of her new organs, but just wasn't strong enough. My heart goes out to her family; she leaves behind two children (her youngest had graduated from High School in June) and a grandbaby . Tammy's father Ken and mother Judy have been very supportive of me and had visited me during my hospitalizations at UPMC . My prayers go out to all of them. I cannot be ...

My heart is aching today. It seems like each day I learn of a new sorrow that someone near to me is facing. So many of you have great challenges you are trying to deal with. They may not be physical, but they are tremendous emotional trials. You may be waking up each day with a spouse who no longer loves you or a marriage that just can't continue to work. You face the fear of life on your own, of telling your children, of filing for divorce. These are enormous burdens to be facing and my heart aches for you. With our failing economy, some of you are facing unemployment. The comfortable life you have known has been jerked out from under you and you are facing debt, a mortgage, and the need to change your entire life's direction. Your family who has depended on you to provide them what they need is suddenly looking to you to save them, yet you don't know if you have the strength to save yourself. My heart aches for you. I have too many friends who have faced or are fa...

It is amazing to me how in the last few months I have met so many new friends. I never realized how many people you can meet even when you're sick and housebound . This blog has become my connection to so many wonderful people and as difficult as it is some times for me to keep writing, it brings me great pleasure to hear from those of you who have chosen to walk with me on this difficult journey. I have never felt alone, as bad as things have gotten, I know your prayers, thoughts, friendship, and love are surrounding me; thank you all so much for that! Though I am still feeling pretty crummy, I am doing much better than I was earlier this week. Obviously the new antibiotic combination is helping and I am grateful. At least this weekend, if the call were to come, I could accept it because any infection seems to be under control and that brings me relief, I would hate to think of missing an opportunity for lungs because of an infection. We are starting to try to plan for what w...

Hello friends! I am sorry I have been out of touch. I have had a few really difficult days. I am now on Cipro and Fortaz IV antibiotics, they seem to be helping, but I am struggling to improve. I have been sleeping and coughing a lot! The fevers have improved, so I think that is a promising sign. I so appreciate your encouraging e-mails, please know that I read, enjoy, and appreciate every one, even if I don't often feel up to responding. Hannah spent Tuesday with her friend Haley and enjoyed some time at the barn with the horses. Rose took some great pictures for me to share. Hannah has been struggling with nightmares. Last night, as she stood by my bed with tears streaming down, I thought of my own fears and how hard it is to overcome your fears. I ended up sitting in her room with her until she went to sleep. As I sat there, I thanked God for always being willing to sit with me when I am scared. He doesn't force me to face these fears alone, He stays with me. Just as...

I have decided there should be a law against feeling this lousy first thing in the morning. I think I should at least get one hour of neutral time, don't you? I spoke with Dr. Pilewski yesterday and my sputum is now growing pseudomonas . This is another infection like the Cepacia that causes trouble for those of us with CF. ( Pseudomonas aeruginosa is the main cause of infection and lung damage in people with cystic fibrosis. Pseudomonas aeruginosa are bacteria that are common in the environment. Pseudomonas aeruginosa is especially important in people with cystic fibrosis since it is the bacterium responsible for most lung infections. Repeated lung infections from Pseudomonas aeruginosa are the leading cause of decreasing lung function in people with cystic fibrosis.) I should be starting a new IV antibiotic today and I started Levaquin yesterday. Please pray these will work! I woke up to a beautiful snowy ground cover, all the more reason to move back to Pittsburgh, I w...

It only took me a week to get these pictures posted, sorry for the delay. Here are some pictures from Hannah's family party. Thank you to Uncle Tom Delaney who grabbed our camera and got these shots! I continue to feel lousy. Hopefully tomorrow we can come up with a new treatment plan that may at least take away the fevers. We have decided, with my continued decline and the change in seasons, that we will need to move back to Pittsburgh at the end of the month. I am hopeful we can find a furnished apartment to rent. Family House is wonderful, but I am no longer well enough to get dressed and go down to a community dining room for meals. I will keep you posted on the apartment search. Love to you all! Nancy

It sure is good to be loved! I got a warm welcome home from my whole family. Jasper wanted to get as much love as he could, then Cracker and Sweet Pea kept me company while I napped. Hannah was thrilled to see me too, but I think she was more excited about the cell phone her dad gave her that she can use to call me while I am in Pittsburgh. Th ey headed off to Wal-Mart this morning to see if they could find a special case for it. I am feeling pretty horrible today and actually had to break down and take a pain pill first thing this morning, I usually try to wait until later in the day. That trip to Pittsburgh always takes so much out of me. I have lost 8 pounds since my last appointment, which was also discouraging. I will be running more food through my feeding tube to try to gain some of that weight back. It certainly is a constant battle! I got to see Julie and Mary. They are both well and were actually able to go home over Halloween weekend for a short visit. Julie lit up whe...

I am too tired to post, but wanted you to know we did get home safely, hopefully I will be up to posting more tomorrow. Love you all! Nancy

Hello! A quick update. We saw Dr. Pilewski this morning at 10:00. I am still really struggling, but there may not be much that can be done. At this point, we have thrown the top antibiotics at me and there still hasn't been an improvement, so this may just be my new baseline. I had kind of come this this realization on my own, but needed him to reinforce it so that I could totally wrap my head around it. And we fight on. We decided to stay here in Pittsburgh one more night since the trip down took so much out of me and I am glad we did, I was able to get a long nap in a bed (not the car) this afternoon while Scott enjoyed the beautiful Pittsburgh weather on a long walk. I also got to meet my teammate on this quest for lungs, Cammi. Scott and I drove by their rental home and we chatted from a safe distance, me in the car, her in her driveway. I will talk more about this in another post, but for me, this was by far the highlight of my Pittsburgh trip! Well, I am still exhaus...

Well, the weekend definitely took a toll. I was pretty sick yesterday, fever, racing heart, chest pain, and the need for increased oxygen. I spent the whole day in bed. The home health nurse did come to take blood, so I am waiting to hear if there are signs of a new infection. I just started on a brand new antibiotic last Thursday that we were hoping would work well for me, but it looks like we may need to start IVs again. Scott and I will be travelling to Pittsburgh tomorrow, I have an appointment with Dr. Pilewski Thursday morning. Dr. Pilewski was good enough to call to check on me last night, I think we all got a little scared with the severity of my symptoms. Though I still feel crummy today, the fever is gone and with the increase in oxygen my heart rate has settled down. I think I'll be doing a lot more sleeping today, however. Please say a few extra prayers for me. Thank you all so much! Nancy

I had to make a very difficult decision this year that I am still feeling guilty about. The day I was called for lungs, Hannah and I had been discussing the HUGE Fall themed party we were going to have for all of her friends on her Birthday, she was so excited. Then the call came and reality kicked in. Would we even be around for Hannah's Birthday and, if we were, would I be physically able to host a large party? The answer to both of these questions was a very probable no, so I had to change plans and try not to disappoint Hannah. Around this time adds promoting the new High School Musical movie appeared on TV and I realized that it would be playing in theaters on Hannah's Birthday weekend. If I could convince her to have a couple of friends and go to the movie, then, even if we weren't here, her Gramma Gail could still take them. Hannah thought that was great, but here is where I encountered my dilemma, I could only allow her to invite 3 friends. I have never wanted smal...