Great Strides Pictures

Here are pictures from today's walk. The weather was beautiful and there was $94,000 raised for CF at the Grand Rapids walk. Thanks to everyone who walked with me and to those who supported this cause with their financial donations!

A Beautiful Tribute

A week or so ago I mentioned Sarah's blog and her son, Connor. Here is a beautiful video that she made to honor Connor's life and to raise awareness about CF.

Make an on-line slide show at www.OneTrueMedia.com

Whose Face Do You See?

Cystic Fibrosis -- I lived in ignorance for most of my life about this awful disease. I didn't know what cystic fibrosis was before 2001, I don't know that I had even heard of it before then. I had no idea that:

"Approximately 30,000 children and adults in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races."

If you had asked me what the symptoms of CF were, I could not have told you that the most common are:

• Very salty-tasting skin
• Persistent coughing, at times with phlegm
• Frequent lung infections, like pneumonia or bronchitis
• Wheezing or shortness of breath
• Poor growth/weight gain in spite of a good appetite
• Frequent greasy, bulky stools or difficulty in bowel movements
• Small, fleshy growths in the nose called nasal polyps

I had no idea that my life and the lives of my children would forever be changed by this disease...

Yet, when I think of cystic fibrosis I don't see a disease, I see a face, a person. I see the face of my husband. I see the face of Lily and Wyatt's daddy. I see the face of the person that I miss each an every day because this disease does not have a cure. I see Ryan.

I hear stories and read blogs about people with cystic fibrosis. Some stories are sad, difficult, and depressing. Some stories are happy, heartfelt, and exciting. Almost all stories have something positive to share. You see the thing about cystic fibrosis is that it seems to bring out the best in people. All of the people I have know with CF are positive about life. They see the glass as half-full. They are determined. They are fighters. They are unwilling to give up until the last option has been tried. They don't want you to feel sorry for them, they want you to see them as a person who has an illness, but is not defined by the illness.


Whose face do I see when I think about cystic fibrosis? I see my husband, who fought until the very end against this disease. Whose face do you see when you think about cystic fibrosis?

Please join me in fighting this terrible disease. Please join my team, Sweeney Striders, in taking a stand against this disease that takes lives every day, but not before those lives can make a difference. My personal goal for Great Strides is $1,000. I need 10 more people who are willing to partner with me at $10 a piece to help me reach my goal.

Facts about CF listed in the post can be found here.

Please pray for this family

Please pray for Sarah and her almost 7 year old son, Connor, and the rest of her family. Connor has CF. Tomorrow is his 7th birthday. It will be his last. Please go to Sarah's blog to read their story and give her some encouragement.

Update: T-Shirts for CF

**Updated: I have seen the blue color that was an option and I don't care for it. I am going to go with a LIME GREEN COLOR for the shirts. **

I am having t-shirts made for my Great Strides team to wear on the day of our walk. I am also going to offer the opportunity for any one else to purchase a t-shirt with the proceeds going to support the Cystic Fibrosis Foundation.

"The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease."

---------------------------------

The t-shirt will be a **LIME green color and the design will be:

Front (small print to the upper left):

Sweeney Striders

Back (centered):

In Memory of
Ryan Sweeney
March 2, 1981- June 6, 2008
I have fought the good fight,
I have finished the race,
I have kept the faith.
2 Timoty 4:7

The cost of the shirts will be $10 for those who are looking to purchase one, $2 will be given to CFF. There will be a shipping cost if you do not live near me. Please let me know as soon as possible if you would like a shirt and the size you want. You can leave a comment on this post or you can find my email under my profile on the blog.

what's going on

So many things are going on right now, I just never take the time to sit down and blog anymore. Most of my spare time was being wasted on Facebook, so I have decided to give it up for Lent (if you are reading this on FB it is because my blog is automatically uploaded there). It was distracting me from much more important things in my life. I decided that I needed to stop wasting my time and refocus on the areas of my life God wants me to be working on -- mainly my relationship with Him and my relationships with Lily and Wyatt.

Winter has been difficult for me both mentally and emotionally. I have been stuck in a pit of sadness, loneliness, and self-pity. I need a change of pace! I have been looking for an opportunity to get away, to find some sunshine, and to create some new memories with Lily and Wyatt. So, we are getting ready for another vacation to Disney in just a couple of weeks. Our friend (and awesome babysitter), Erin, will be joining us because there was no way I was going to tackle flying and vacationing at Disney World with two three year olds by myself! We will spend three full days in the parks and I am super excited to be able to do even more with the kids than we did last year.

I am also really excited about the opportunity to raise awareness and funds for Cystic Fibrosis through Great Strides. I have officially restarted the "Sweeney Striders" team for this year's walk in Grand Rapids. I have been overwhelmed by the amount of support that I have already received from people joining me in the walk and from the donations given (if you are interested in joining me on the walk or in sponsoring me click here). I have plans in the works (well, just in my head right now) for t-shirts for the Sweeney Striders that will set us apart from other teams as well as honor Ryan's life!

Lily and Wyatt are doing fairly well, other than the colds, coughs, and fevers (Lily) they have been fighting. It is so hard to believe that in a few weeks they will be turning 4! I am ready to be done with "3" and all of its challenges, but I am not ready for them to be heading to school. If only there was a slow motion button on life!

And lastly, here is a video of one of my favorite songs right now, "Unredeemed" by Selah. I love the message that it sends, a message of hope in the promises God has made to redeem the things of this world that hurt so much. It is a great reminder to me that God sees and knows the pain in my heart, especially as Ryan's birthday approaches.

Great Strides

I just wanted to let you know that I am thinking about participating in the 2010 Great Strides for cystic fibrosis. I would be doing the walk on Saturday, May 15 in downtown Grand Rapids if anyone is interested in joining me (you can check the link below for walk locations near you).

Great Strides is a huge fundraising event for the Cystic Fibrosis Foundation. They are making great progress in finding a cure for CF and I would love to be able to support them as they support other families battling this terrible disease.

Several years ago (2005 I think), I started the team "Sweeney's Striders." The next year the kids were here and life has been crazy ever since! I want to make time to walk this year. Please let me know if you are interested in joining me this year.

http://www.cff.org/great_strides/

Looking Back

Since I wrote my post reviewing 2009, I have also been thinking about the past decade. So much has changed in the last 10 years and I thought it might be interesting to highlight some of the major events that have occurred in that time.

• 2000: Finished my junior year of college and began my senior year at Trinity Christian College in Palos Heights, IL. I worked at Steelcase for the last time as summer help. I had knee surgery in December.
• 2001: I did my student teaching at Southwest Chicago Christian School -- Tinley Park (6th grade) and Chicago Ridge Public School (4th grade). I graduated college with a B.A. in elementary education. I spent the summer back in Michigan working at Gap and babysitting before moving to Illinois. I began working at Westminster Christian School (WCS) teaching 7th and 8th grade math, 8th grade bible, and a computer elective. I also met Ryan.
• 2002: Ryan and I began dating on February 14. We were engaged in June. Ryan went into the hospital for the first time while we were together. We began wedding planning. I continued teaching at WCS.
• 2003: Ryan and I bought a townhouse in Lake In The Hills, IL. We got married on July 5 and went to Hawaii on our honeymoon. I continued working at WCS and Ryan worked at Precision Twist Drill.
• 2004: Ryan began working at Ameriprise as a financial planner. We flew to Connecticut for his best friend's wedding. We had a puppy for 6 weeks. :)
• 2005: Ryan had a major CF crash in April that lead to us beginning transplant evaluation at University of Wisconsin -- Madison. We began pursuing IVF. We found out that we were pregnant with twins in September -- YAY!
• 2006: I went on maternity leave and Ryan lost his job at the end of March. Lily and Wyatt were born on April 3 (33 6/7 wks). Ryan worked part time through the summer in Illinois. He found a job in Grand Rapids, MI. We moved to Michigan in September and lived with my parents. We sold our townhouse the last week of December.
• 2007: We started renting a townhouse. We enjoyed watching Lily and Wyatt grow. Ryan's health began to take a turn for the worse at the end of the year. We again began pursuing a lung transplant, this time at U of M.
• 2008: Ryan finished his lung transplant evaluation and was listed on March 17. He went into the ICU on March 23 and was never able to return home. Ryan went to heaven on June 6 after 10 1/2 weeks in the ICU. God became my source of strength during the most difficult time of my life.
• 2009: I bought a home for Lily, Wyatt, and myself. We took a trip to Disney with my parents. I continued to rely on God...

It is so great to reflect on where I have come from. When the last decade started I was far from being the person that I am today. I made choices based on what I wanted for myself and not on what God wanted for me. He has used the events of the past 10 years to draw me closer and to transform me into who I am today. Some of the things He has used have been fun, happy, joyful things. Some of the things He has used have been difficult, trying, sad things. Through them all I can see God's faithfulness. I can see how He orchestrated situations in my life to show me who He is. I am so thankful for a God who loves me and provides for me. I am thankful that even with an uncertain future, I can KNOW that God will provide for all of my needs and that I am loved!

CF Awareness

Our Story (The Condensed Version)

I have realized that there may be a lot of readers out there who do not know our whole story, so I thought that I would give the condensed version here in case you didn't have hours to spend reading the blog.

The first time I met Ryan was on September 11, 2001. I was a first year teacher, fresh from college. It was only my 6th day teaching. I had no idea what to think about the attacks of that day, and I was unable to answer my students' questions about the World Trade Centers.

I worked with Ryan's mom and Ryan came to visit her because he wanted to be near family that day. The P.E. teacher, Mr. Funkhouser, ask Ryan if he would go answer student questions in the new teacher's classroom. Ryan told me that he had it all planned out what he was going to say to the students, but then forgot once he got into my room and saw me for the first time (evidently it was love at first sight for him :) ).

To be honest, I don't "really" remember Ryan from that day, I was a little overwhelmed. I do remember him leaving the room and the students asking me, "what did he just say?" My response was somewhere along the lines of, "I have no clue!"

I did not know about Ryan's "instant love," but we did get to know one another little by little over the next few months at Amanda's (his sister) basketball games and a Super Bowl party at his parent's house.


Our first date was on Valentine's Day, just as friends. We both wore black because we were both a little bitter about the day. Ryan had a rose for me and told me that ever girl needed to get flowers on Valentine's day. We enjoyed a nice dinner together and got to know one another a little better. I left excited, but did not know if it would go anywhere.


It did not take long for me to find out how Ryan felt. Within a week or two we were spending a lot of time together -- almost everyday. Ryan was a hopeless romantic and was always coming up with different ways to make me feel special. On Father's Day of 2002, 4 short months after our first date, Ryan asked me to marry him and I said yes!


The very next day, Ryan went into Northwestern Memorial Hospital in Chicago for a scheduled "tune-up". This was the first time that his cystic fibrosis really impacted our relationship. He had not been in the hospital at all while we were dating and he had only gone to one or two clinic appointments during that time. I think I was still oblivious to the reality of CF, but we enjoyed spending hours together in the hospital talking about our wedding and our future. I was tested to see if I was a carrier for CF so that we could start discussing the possibility of children in our future. I was not a carrier -- yeah!


We were engaged for just over 1 year. We spent a lot of time together during that year. We bought our first house on February 28, 2003. We repainted every room and put down new flooring too. I moved into the townhouse in April of that year and could not wait to be joined there by Ryan in July!

We had a beautiful wedding on July 5, 2003 and we spent 1 week in Maui, Hawaii on our honeymoon. We enjoyed being newlyweds and we enjoyed our first home together. Ryan continued working for Precision Twist Drill and I continued teaching at Westminster Christian School. Ryan would go in to the hospital for "tune-ups" every 4 to 6 months, but most of them were scheduled around my school vacations, so I would go and stay with him in the hospital (romantic, I know).

In March of 2004, Ryan started a job as a financial advisor at Ameriprise Financial. He loved what he did, but the long hours and excessive commute were difficult for him. He would push himself to keep up with office expectations and it ended up taking a toll on his health. In April 2005, Ryan had a major "crash". Dr. Boas, his CF doctor, first brought up the idea of transplant to us and it was devastating. We knew that a transplant would be necessary in our future, but we had always talked about it being years away. We had just started to think about seriously pursuing the idea of children using IVF treatments (a necessary means due to CF) and we were left wondering whether or not we should even consider having kids. Dr. Boas was fantastic and answered all of our questions about transplant and we realized it wasn't the end of the world.


We decided that we were going to go ahead and pursue IVF starting in June 2005. It was an emotional time for both Ryan and I, but we knew that it would be worth it in the end if we were able to get pregnant. While doing this, we were also looking in to the transplant program at the University of Wisconsin -- Madison Hospital. In early August we headed up there for 2 1/2 days of intense testing for Ryan and a lot of emotional stress for both of us. We came home on Thursday night and we found out on Friday morning that our first round of IVF treatments were unsuccessful. We did not give up our hopes and we decided to do another treatment the next month.


While waiting to see if our second cycle was a success, we were making trips back and forth to U of W to see where Ryan would fall in terms of transplant. At that point, he was considered borderline for transplant and it was recommended to us that we wait to get listed, but Ryan would continue to be monitored every three months. Within two weeks of that news, we found out that I was pregnant -- praise God! Two weeks later, we went in for our first ultrasound and we saw our double blessing -- TWINS! We were so excited, we were actually hoping that it would be twins.



My pregnancy went well, other than having morning sickness 24/7 for the entire time. Ryan was now doing "tune-ups" every three months to avoid another crash. We were anxiously preparing for our two little ones, which we found out in January 2006 would be a girl and a boy. I stopped teaching at the end of March, so that I would be able to carry the babies as long as possible. Unfortunately, while Ryan was in the hospital doing his last tune-up before the babies were born, he was given the news that he had lost his job with Ameriprise. Now we were both unemployed and expecting twins. The stress of everything put me into early labor on Saturday, April 1, 2006 (the twins were due May 17) -- Ryan was actually at a job interview when I called my doctor and he said "come in, I want to see you".


Off we went to Good Shepherd Hospital. They started me on magnesium right away and they were able to stop my contractions, but I had developed toxemia. My doctor decided that it would be in my best interest, as well as the best interest of the twins to induce me. On April 3, 2006, Lily Grace Sweeney was born at 9:20 pm weighing 4 lbs. 3 0z. She was followed by her big, younger brother Wyatt Ryan Sweeney at 9:37 pm weighing 4 lbs. 13 oz. Both kids were breathing on their own and were only kept in the NICU to learn how to breath. Wyatt came home with us on April 19 and Lily followed one week later on April 26.

The kids were healthy and doing well, but we were still unemployed. Ryan began looking for jobs not only in Illinois, but also in Michigan near my family. God was totally at work here. He provided a GREAT job for Ryan at 5/3rd Bank in Grand Rapids. It was basically his dream job -- analyzing stocks. He did two more tune-ups with Dr. Boas in Chicago, but it was too difficult emotionally and so he switched to a doctor here in Grand Rapids in the spring of 2007. That was another "God-thing". We found out that Michigan has a special insurance for CF adults that would cover all costs of CF treatment not covered by primary insurance -- HUGE blessing!

By the end of 2007, we were well aware that Ryan's health was failing. We had not been good with the transplant evaluations every 3 months (it wasn't a concern of doctors), so we didn't know exactly how far Ryan had deteriorated. We were able to schedule a visit to see Dr. Ojo at the University Hospital at U of M on December 20, 2007. Our follow up visit with her was on February 21, 2008. It was a day of a lot of tests, but we left feeling like we knew where we were headed.

Februray 22, 2008, just one day after seeing Dr. Ojo, I brought Ryan to the ER here in Grand Rapids. He was struggling to breath and they discovered that he had Influenza A (which Lily, Wyatt and I all proceeded to get) which led to pneumonia. Ryan spent two weeks in the hospital, but he was able to finish up almost all of his necessary transplant tests. Ryan came home from the hospital feeling a little better, but still not great. A few days later, March 12, Ryan was scheduled for a procedure at U of M. It was his final test for transplant evaluation, but the doctors decided that he was too sick and he was immediately admitted to the hospital.

I left Ryan at the hospital in Ann Arbor because we were scheduled to move that weekend. So while Ryan was sitting in a hospital, I was packing like a crazy woman. Thanks to the help of 15 people from my family and our church, we were moved and mostly unpacked within 4 hours!

On March 17, 2008, Ryan had his final test done and found out a few hours later that he was listed for lung transplant at #1. His scores did not indicated that he was "that sick", he was just the sickest in his category for blood-type and body size. I went and picked him up from the hospital the next day.

By Saturday (March 22) Ryan was really not feeling well and I thought about taking him back to U of M. He told me he would be fine, but in the middle of the night, he woke me up and asked me to call an ambulance. I was unable to go with him because I had the stomach flu, but my parents came over to help out -- my dad sitting in the ER with Ryan for hours while doctors tired to figure out what was going on.

I received a call from Ryan's doctor telling me they were going need to put Ryan on a ventilator. I was able to get up to the hospital and see him before they did, but he did not remember me being there. I called his parents and they were soon on their way to join me at Ryan's bedside, along with Amanda and his Grandma. I was also able to talk with someone from U of M who told me it was important that Ryan get flown there as soon as possible, unfortunately all of their ICU beds were full.

Two days of anxious waiting in GR led to an ambulance trip (a high wind advisory stopped the helicopter) to University Hospital where Ryan spent the last 10 1/2 weeks of his life. Those 10 1/2 weeks were filled with many ups and downs. Ryan was on and off the transplant list a few times during those weeks, but EVERYONE believed that he would get his new lungs. Ryan continually impressed the staff of the CCMU with his determination.

In the end, Ryan's lungs gave out. There was nothing more that the doctors could do for Ryan. Lungs did not become available. Ryan went to be with our heavenly Father on June 6, 2008. At the time, those 10 1/2 weeks in Ann Arbor were hard, but I would not do it any different if I had to do it again. Ryan and I spent 12 hours a day together for those weeks. We were able to laugh together and cry together. We were able to tell each other our hopes and dreams for our future and for Lily and Wyatt. We were able to say I love you to each other every day.

God has blessed me with my two children. Lily and Wyatt are a constant reminder of their Daddy. God provided for Ryan for our entire marriage, helping us through both good times and bad. He continues to sustain me

Great Strides -- Sweeney Striders

This post is coming about 9 months early, but I want to get the word out. Next May I am hoping to walk in the Great Strides walk. I have walked two other times in a Great Strides walk, but then we had Lily and Wyatt and life got busy. (GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation's largest national fund-raising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. In 2007, more than $34 million was raised to support vital CF programs.)

Even though I no longer fight CF daily, I want to make sure that others have the best resources to fight CF and hopefully research can continue to find a cure. Cystic Fibrosis is a horrible disease and I pray that God will give doctors wisdom to find cure -- SOON!

Please consider joining me in a Great Strides walk in spring of 2009. I haven't decided if I am going to walk in a local Great Strides walk or if I will participate in one in either Chicago or Ann Arbor. You can also think about walking at a site close to your home if you aren't near here. Sweeney Striders are going to be back to honor Ryan's memory!

Hope for CF

Even though Ryan lost his battle against CF, it is still very real in the lives of so many. As Scott said at Ryan's Celebration of Life service, "Ryan might not have beat CF, but he gave it one of the worst beatings it has every seen."

You can watch the following video to try and better understand what life for a CFer is all about. Many of the things that these people describe is what Ryan dealt with every day.



Siobhan Ryan - the lady in the video talking about being near the end passed away on June 24. You can read about her here: http://www.legacy.com/FRESNOBEE/Obituaries.asp?Page=LifeStory&PersonID=112565526


More information can also be found at www.cff.org. Please also consider organ donation if you have not already done so; there are so many people waiting.

Mixture Monday

Lily Grace Story:
Lily has been learning how to get herself dressed. She is great at getting her shorts on. Her favorite place to take her shorts off is in her crib, so I am used to going into their room at night and finding her pj bottoms on the floor. Last night was no different, except for one small thing: she took her diaper off too. I was sitting downstairs shortly after I put the kids and bed and suddenly heard a scream followed by lots of crying. I ran upstairs because I could tell something was wrong. I opened the door and saw her shorts on the floor. Lily was standing in her crib, holding her diaper, and crying her little eyes out and saying "ut-oh". She told me that she would not be doing it again. We will see...

Parks, Picnics, and Playdates:
The kids and I headed to a local park today with the families from our small group at church. It was so much fun. Every family was able to make it at least for a little while. The kids did really well playing and listening -- we are hoping to make it a weekly thing! There were up to 17 kids with us at one point, all between the ages of 1 and 8. It took Lily and Wyatt a little while to warm up to playing by themselves, but at the end of the 3 hours they were climbing all over the play structure without me! As you will see in the first picture, they were not big fans of the group shot :)

Parks, Picnics, and Playdates

In Memory of Ryan:
Michigan Pulmonary Disease Community, Inc. (MPDCI) is a CF group that Ryan and I were recently introduced to. They give CFers the opportunity to interact in safe ways. We had been invited to a "Transplant" Dinner where pre- and post-transplant CFers get together and share what transplant is like and ask whatever questions there may be. MPDCI is also a great source for transplant because they offer grants to cover many of the expenses not covered by insurance companies (i.e. food, gas, lodging, etc. for caregivers). MPDCI has honored Ryan by publishing their July newsletter in his memory. Their September issue will again be in his memory but with his picture included.

Read the newsletter here: http://www.mpdci.org/beaver_bulletin/BB-2008-07.pdf

Sad

I don't even quite know what to write today. My heart is broken. The past 24 hours have been a downward spiral. We were so hopeful for new lungs even last night. Ryan has struggled so much and fought so hard over the last 10 weeks. This morning Ryan told me that he just wants to sleep and he can't fight anymore right now.

Dr. Ojo and the team have decided that it is in Ryan's best interest to allow his body to rest. They have sedated him and that means he is currently on hold for a transplant. Their hope and our prayer is that with the sedation they will be able to make Ryan comfortable while doing aggressive treatments, with the goal of getting him back on the list. We should know in 3 or 4 days if these new treatments are working.

I was called to the hospital at 1:30 this morning because Ryan was having trouble with his oxygen saturation. They were able to get it back into the 80's and 90's, but his carbon dioxide level is just too high and causing him too much discomfort.

I must acknowledge that even in my pain I know I am so blessed and loved. Ryan and I are surrounded by family (both sets of parents and an aunt). We are also surrounded by a staff who loves us and is saddened right along with us. I was told that Dr. Ojo had to have a pep talk with the staff this morning because they were all so disappointed (rumor has it there is also someone available for the staff to talk too). I have received many hugs from these people I now proudly call our family.

We will continue to have hope in the Lord. I know that God is a God of miracles and he has given us many in the past 2 months. Please continue to lift Ryan up in prayer before the throne of God. Pray that God's will is revealed. Pray that we can feel his new mercies each morning!

Pleading

I have been pleading with God for our miracle to come. I do not understand his timing and I wish that I could see his big picture. My heart breaks each time I walk into Ryan's room and see him lying there sleeping. I know that the window of opportunity for Ryan to get his new lungs in closing, but our God is bigger than that little window. I have to hope and believe that God will provide Ryan's lungs at just the right moment.

Ryan's oxygen levels have been between 95 and 100% since last night. He seems to be resting comfortably this morning, but I know that his night was difficult. There is not a whole lot of wiggle room with the ventilator anymore, but I know, and must believe, that God can do more than I could ever ask or imagine.

Please continue to storm the throne of God on Ryan's behalf.

In Need of a Miracle

I know I have said it before, and God has always answered, but we are in need of another miracle. Ryan's lungs are giving out a little more each day. He has been between 90 and 100% oxygen since midnight. He is very tired and has spent the majority of the day sleeping.

Cathy, from transplant, came in to see us today and told us that she would tell us if she didn't think it would happen, but she fully believes that Ryan will get his lungs. Lungs have come up in other states, but the number one person from those states has taken the lungs each time (who can blame them?). Dr. Ojo was encouraging when she came in too. She said that the walk that he did yesterday would buy him a day or two of rest -- that's good, no walking is going to happen today.

God has blessed us richly in this experience. There are so many staff members here that are fighting for Ryan almost as much as we are. There are doctors that have moved on in their rotations, yet they continue to check on Ryan. The staff has become our family here and they make the pain of the hard days a little easier. The hugs and encouragement from them is what helps us both get through the day.

We also appreciate our families and friends for their support. We had a good visit with Ryan's mom, sister and sister's boyfriend as well as his grandma, aunt and uncle. It is all the visits, emails, and phone calls that lift us up and let us know that we are supported even though there are many days we are here by ourselves.

Sunday Update

Today has been another day of ups and downs. Ryan is now requiring 100% oxygen almost any time he exerts extra energy. If they are able to give him the 100% before he begins different tasks, he is able to recover somewhat quickly; if they wait until after the task is completed, he really struggles to recover. His lungs are just really tired and really sick and just seem to be giving out. We need new lungs!

I also wanted to give an explanation about the ability to get lungs from other states. Ryan is #1 in the entire Midwest for his blood type and body size. In order for him to receive lungs from another state, the person that is #1 in that state would have to turn the lungs down (that person would most likely be too sick or on hold to receive lungs at that time). If the #1 person in that state would turn them down, they would automatically be offered to Ryan. Sometimes lungs are turned down because they are not "healthy" enough, in that case we would not want them either.

Our time with Lily and Wyatt (and my parents) was great! The kids are the best medicine for both Ryan and I right now. I let the kids come up to his ICU room again. They played on his lap and in his bed for almost an hour! We can't wait until we are home to be with them full time.

Ups and Downs

Today has been filled with lots of ups and downs. Ryan's oxygen levels have fluctuated between 75% and 100%. He actually reached 100% twice, but is now back down to 75% as I am leaving tonight. We are praying and praying that the lungs will come sooner rather than later!

I have spent a little time with the kids -- they are the best medicine for me and I am hoping that they will be able to be medicine for Ryan tomorrow. I enjoyed a nice dinner out with my parents and the kids tonight as well as a nice lunch out with friends!

Ryan has been having a difficult morning. He woke up with a start around 5:00 am and things have spiraled downward since then. At one point he was on pressure control with his oxygen at 90%, but they have returned him to assist control (regular) with his oxygen at 85%. They were able to get a mucus plug out of his lung and he is sleeping now, so hopefully he will be feeling better soon.

We are looking forward to a visit from some of the wives of our Pointe Group this morning and then my parents and the kids coming in this afternoon. They will be staying until tomorrow and then Ryan's mom, sister and sister's boyfriend will be coming to visit on Monday on their way home from Ohio.

An Even Better Day

Shortly after I posted my last update, Dr. Ojo came in and told us that they have taken Ryan off the restriction to "Michigan Only" lungs. She mentioned that he would be able to get lungs all the way from the Carolinas so I think that means he is able to get lungs within 1500 miles. This is another example of God's faithfulness as Ryan was supposed to remain "Michigan Only" for the next month (due to the blood transfusion he had at the end of May).

We know that Ryan basically has the highest LAS (80.45) in that entire area -- Dr. Ojo had told us yesterday that he was starting to show up on the radar of other states.

This brings us one step closer to new lungs and being home again.

PRAISE GOD!!!!