Updates on Lana's Progress
In 2011 a few friends and I walked the Cooper River Bridge Run 10k, for fun. So, while in therapy I decided that was going to be one of my recovery goals, to complete the Cooper River 10k again. I wasn't sure which year that goal would be accomplished, but with the support of my physical therapist, I am training to walk the Cooper River Bridge Run 10k in Charleston, SC this year...2013. (Hence the *gulp* above.) Considering the doctors weren't sure I would ever walk again, this will be a huge accomplishment, and I want to prove to myself that I can do something hard again. I am inviting any family, friends or anyone who wants to join us to come. You can find more information about my team for the race (including where I am in my training schedule) on Facebook - Faith Hope Lana. For those who are worried about running 10k, don't worry. I didn't run before I got sick and I sure am not running now...we will be walking. :-D
In the meantime, I have completed most of my "official" therapies, and only go once or twice a week now. My physical therapist has had me transition to doing "unofficial" therapy at a gym now. Additionally the doctor appointments have slowed down. Yay! This means that we don't have to be gone every day of the week, finally! I am enjoying getting to spend some time with Darren and the twins. I am slowly getting back into some of the many household responsibilities. (Darren has been a HUGE help in this area, doing most of the work around the house for months!). I am also trying to start doing some cooking again.
As for my continued recovery, most days I have some amount of pain. A HUGE prayer request of mine is that the pain would go away, all away at some point. The pain is probably the hardest thing to endure, day after day, after day. My stamina is much less than it used to be (before I became ill) and I am hopeful that I can keep increasing that. Many days I have to take at least one nap, in order to make it through the day. My walking continues to improve. I now have a flexible knee brace for my left knee and a rigid ankle brace for my right ankle which help a lot when I am doing extended amount of walking or walking outdoors. Walking also is helping to improve my stamina/endurance (I think). One huge praise, that I can't remember if I have mentioned before, is that my hands are doing MUCH better. The hand specialist was able to determine that the numbness and pain in my left hand was a result of Carpal Tunnel Syndrome, most likely caused by the excessive swelling when I was so sick in ICU. The good news about that is that he was able to perform surgery in the hopes that the nerve damage would not be permanent and my symptoms could be at least partially resolved. So, I had that surgery at the end of October. In the meantime the discomfort in my hand has decreased significantly, a HUGE answer to prayer, which I know many of you joined me in. Nerve damage can take months to resolve so by summer I will know the full extent of that recovery, but even if it doesn't get any better than it is, it is so much better than it was and for that I am very grateful!
I want to say thank you again to each of you who have prayed for us, encouraged us and helped us (financial, childcare, meals, milk, baby supplies and so many more ways). I will never be able to personally thank each of you, but please know that I appreciate your love for me and my family from the bottom of my heart and wish I could repay each of you in a small way.
Well, for Thanksgiving this year, we decided that we needed to keep things simple and low key. I usually am one to go all out, cooking a turkey, making all the "traditional" sides and of course a pie or two for dessert. Well this year we decided not to do that, instead we cooked a few frozen lasagnas that we had in the freezer and ate them. It was nice and relaxing. A few extended family members came over and we enjoyed visiting with them.
Our tree is now up and decorated and I have a few decorations put out. I am trying to balance my LOVE for the Christmas season and all the festivities with the fact that I barely have enough energy and stamina to make it through a regular day most of the time. So, while I did some decorating, I tried to be mindful of the fact that I will have to take it all down. :-p
Therapy and doctor visits continue on an almost daily basis. We are hopeful that if I continue to do well and “new” problems/complications stop arising that I will be able to cut back on some of my medical visits in the new year! Please pray with us and for me in this manner.
The children continue to do well. If they are not crawling by Christmas, they will be soon after. I am sure that will bring a whole new set of challenges for us. It is a good thing I am working on balance and stepping over obstacles in my therapy!
Well, it is a new week and we will be BUSY as usual. I hope you each are enjoying your holiday traditions and holding family closer to your heart this year. The severity of my illness and the possibility of a different outcome is not something I choose to dwell on a lot, or even bring up to people very much…but remember…family is so important. Make time for them, love them unconditionally, and let them know that they are important to you. You never know when your last hug or “I love you” may take place.
Well a lot has transpired since I was released from Roger C. Peace Rehabilitation Hospital (RCP). I am sorry that I have not been able to update this site as much as we had originally hoped, but as you can imagine, I have been tremendously busy with trying to get my out of hospital life back together. I am hopeful that this update will get everyone back up to speed on my life and that I have finally (hopefully) reached a point in my recovery where I have time to update on occasion.
Rehab: I have been very busy in rehab. Within a week of being discharged from RCP I began outpatient rehab through RCP. I had Occupational and Physical Therapy 3-4 times a week. My other 2 weekdays usually had doctor’s appointments. I know it sounds crazy, trust me…it was crazy…but I literally had some sort of medical appointment every day! At the end of October I was able to be discharged from Occupational Therapy. I had met most of my goals for that, including being medically cleared to drive again. Wow, that was freeing! I have just been able to “cut back” on my Physical Therapy and only have that 2-3 days/week. I have regained some strength in my hands/upper body and the babies are great at challenging me to keep up with their growth. I have better use of both of my hands; though fine motor skills still present a bigger challenge. The numbness in my hands persists, but I remain hopeful it will go away. I am able to walk so much better than when I went home! I have progressed so much that I usually can walk without any assistive device, though I have to use a cane on occasion with various setbacks that occur. I am able to climb stairs, carefully, but still, I can do it! One of my next “big” goals is to take a small “hiking” trip. Hopefully in time I will be back out doing all the things I used to do. Please continue to pray for me in rehab. I work very hard and am grateful that God has blessed my efforts thus far. Rehab is very tiring for me and there is still all the normal wife/mommy stuff for me to do at home. I often get exhausted long before everything is done. Darren is such a tremendous help, doing lots of “home” things and “waiting” on me during rough times…making sure I can elevate my legs and bringing whatever I need to me. Numerous family and friends have stepped in to help with so many things from transportation to child care to meals…I could never have made the progress I have made without the incredible support from people I love.
Surgery: I have been “privileged” to have numerous surgical procedures since being discharged from RCP. Unfortunately I have had some sort of hospitalization or surgery, ranging from overnight to several days every month. I developed an abscess that had to be drained, I had carpal tunnel surgery in hopes that would help the nerve damage to my hands and just tonight I had to get fluid drained from my knee. When I left RCP I thought I was done with hospitals, but I have learned that rehab is not a straight uphill path. There are dips along the way, but as long as the trend is upward, things are going well. There are still more surgeries in my future, but we are hopeful that it will be a while before we need to have them.
Children: The children are doing tremendously well! They are growing and are healthy. We feel so blessed. They are a constant source of joy to us and we delight to interact with them. It is so fun to see them develop and become their own individual self. Ian is all boy…grunting and huffing, bouncing and constantly moving. He is constantly happy, smiling and laughing at everything! Abigail is our thinker. She watches and observes everything carefully before deciding how to react to it. She loves to play peekaboo, often anticipating where you will appear next. She too is a happy, content baby.
Thank you: I want to say thank you to all who have done anything for us. So many people have contributed to my recovery and there will never be a way for me to thank everyone “properly”. I am so thankful for your prayers. I know God answers prayer, even if it is not “exactly” how we wanted them answered. I am thankful for those who have visited, called, sent cards/notes. I am thankful for those who have provided meals, I never could survive making meals every day when I got from therapy and/or doctor’s appointments. I am thankful for those who donated PTO, it was such a blessing. I am thankful for those who provided rides for me, when I couldn’t drive myself to my many appointments. I am thankful for those who watch our children, whether it is a planned event or a middle of the night urgent call. I am thankful for those who have donated financially. The bills and day-to-day living expenses have been significant and I will be out of work for a while yet. I am sure there are other things that I may have forgotten or may not even be aware of that people have done to care for us. Thank you! I am humbled by how many people have cared for us and we are so grateful for your support!
Some of you may have seen that I cut my hair rather short. After coming home I had significant hair loss. Based on my research, Post partum hormone changes, long hospitalizations (especially with little physical activity) and anesthesia can all cause hair loss. So…considering I was subjected to all 3…at the same time…apparently my poor hair didn’t have a chance. After trying to work with and mask this hair loss, I gave in and decided to cut it short to the length of the healthy regrowth. Yes, I am very grateful that it is coming back! To be honest…my hair loss bothered me more than all the scarring on my legs! Maybe that is vain…but I liked my hair. On the “try to find something positive to be grateful for” side…I am grateful that this gives me a chance to try something I never would have had the guts to try before. I like my hair better than I thought I might and I am grateful for that as well.
I hope this can give you a glimpse of where we are now. I am new to updating this site…so hopefully I can get myself up to speed on it quickly. I apologize for the delayed update. I was hospitalized right after I posted the “teaser” in September, so that is why it wasn’t updated sooner. It is 2 AM and this seems to be the only time I can get a chunk of time to write. I will also try to figure out how to add photos…but that may take a while as my brother set that up and I haven’t been instructed in accessing that yet.
Specific ways you can pray:
Our spiritual encouragement and growth
Our family dynamics/interactions and relationships
Strength and endurance for therapy and home responsibilities
No more setbacks
Healing of my current wounds
Healing of some abdominal complications
Restoration of all damaged nerves, but specifically my hands
Thank you all once again!
Lana for Darren, Abigail and Ian
I have tried to add some recent photos, I hope you can see them!
This is Lana posting. As you can imagine, since coming home I have been swamped with learning to live at home, taking care of infant twins and juggling therapy & doctors appointments. I apologize for not updating sooner. I have now figured out how to log in to this site and plan to update more regularly. I am not sure how regular that will be...but it won't be months in between updates. :-)
Lana took the opportunity today to talk to the media about her experiences with Necrotizing Fasciitis. Her day started early this morning with an interview on the Today Show followed by a joint press conference with several of her attending physicians from Greenville Memorial Hospital. She then conducted several one-on-one interviews with various news outlets. After all that she returned to the Roger C. Peace rehab center for her daily rehab sessions. Here are some links to several of the news stories from today's events for those who would like to see them.
For those of you who are following Lana's story, Lana and Darren are scheduled to be interviewed on NBC's Today Show tomorrow (7/16/12) at 7:30am.
EDITED: We have been informed that the time for the interview will now be 8:09 a.m. Obviously with the nature of a live show, times are subject to change.
Lana underwent a minor unexpected procedure yesterday. She had developed a painful area in her abdomen which required a CT scan to determine its cause. During surgery, doctors made a small incision to drain the lump that they believe developed as a result of some shots she had been receiving. It was a very short operation and Lana is recovering well. So far, it does not appear to have affected her NF recovery. Please continue to pray for the swelling in Lana's legs and feet to go down and for the feeling to return to her hands.
Lana continues to improve ahead of schedule. She was able to pass her swallow test and is able to eat normal foods again. Her stoma from her trach has completely closed. She continues to receive occupational and physical therapies. She is able to walk with a walker and walks a little more with each attempt. She has also been able to walk without her knee immobilizers. Lana was able to take a shower for the first time since being admitted and said it was very refreshing and helped to relieve some of her pain. Her wounds are healing well where the skin grafts were done. 92% of her grafts "took" which is incredibly high and another evidence of God's healing hand on her body. She has started wearing compression stockings to help reduce the affects of edema in her legs.
Lana is able to spend time with the twins on an almost daily basis. She is able to hold and help feed them. She recently created a mobile to entertain them while they are visiting her which was a hit with them both. :) Abigail and Ian are both growing and doing well. They are interacting more and more with others including their mother.
We want to thank all those who participated in the fundraisers over the last week. There were a number of individuals and organizations that came together to make these events happen. Thanks to all who came out to the hotdog sale and showed your support. Also thanks to the brave souls who attended the benefit concert despite the extremely hot temperature! Thank you as well to the vendors who came out to show your support at the concert.
This was Lana's fb post from early (3AM) this morning :)
"All glory and praise be unto God! I know I have much to update on.....and hope too get a schedule started for that, as many of you know, I have started rehab at Roger C. Peace, which is equivalent to a full time job. I would covet your prayers for that. Additionally I am on requesting some specific miraculous prayers for my trach removal and some swallow studies that will be happening in the next week or so. Thank you!" She also posted these pictures of the twins. :)
Lana has started extensive therapy to strengthen her legs and to get back to doing normal functions. She will have a very busy schedule each day with very little down time. Continue to pray for her rehab as she is starting a whole new chapter in recovery. As Darren recently shared with family and friends, "Thanks to all that [have] prayed and please give GOD THE GLORY for her progress."
Lana was able to have her trach removed today. The hole should close soon which should help with the swallow studies that Lana has requested prayer for. She is ready for a good meal but needs to pass these "tests" for the doctors to clear her for normal food. Lana was able to walk about 16 feet on Friday which is the furthest she has walked since undergoing the debridement operations on her legs. Her graft sites continue to improve and are looking "better and better" according to Darren.
A special thanks to all who came out for the Ride for Lana this past Saturday. There was a great turnout and your support is overwhelming.