Donation information....

As promised, here is the information for those that wish to make a donation in Robyn's memory.

In lieu of flowers, contributions may be made to a college fund in honor of Lola Bennett. Checks may be made payable to CollegeAmerica and addressed to:

Lola Bennett College Fund
P.O. Box 1776
Ann Arbor, MI 48106-1776

and/or

The Cystic Fibrosis Foundation (www.cff.org)

Thank you all so much for your beautiful notes and memories of our dear Robyn.

xo

A celebration of Robyn's life....

A celebration of Robyn's life will take place on Friday, December 12, 2008 at 1 p.m. at West Side United Methodist Church, 900 S. 7th Street, Ann Arbor, MI 48103.

In lieu of flowers, contributions may be made to a trust fund in honor of Robyn's daughter Lola and/or to the Cystic Fibrosis Foundation. Details on both the trust fund and CFF will be posted shortly.

Thank you to everyone for your beautiful tributes to Robyn. We find peace in learning how many lives she had touched over the years.

Love from Robyn's family....

My little Robyn....

Dear family and friends,

I am so sad to share the news that after some bumps in the road, Robyn lost her battle with cystic fibrosis today. My apologies for those of you that are learning of this tragedy via her blog. She had so many friends (many of whom she knew from the CF community) and I would have no clue how to reach them all to personally share this update.

Her lung infection was so much for her little body that it began to lead to additional problems that she was unable to recover from.

We are deeply saddened by this loss that seems all too sudden given Robyn's good health the majority of her lifetime. We're not sure where to pick-up the pieces and all seem in a bit of shock.

All that knew her are truly blessed to have had her in their lives. She was an incredible wife, daughter, sister, grandaughter, aunt, cousin, and friend. But, most importantly, she was a WONDERFUL mother to her daughter Lola. Of all things in her life, Lola was her biggest accomplishment and the person she cherished the most. In addition, Robyn was fortunate to have found the love of her life in Aaron and we thank him again for his courage over the last month while supporting her during a roller coaster of a stay in the hospital.

We thank you all for your well wishes and notes of support. I truly wish I was writing to let you know that Robyn's infection cleared and a donor had been found. I wanted her to know here on earth what it was like to live a day free of CF...now she will experience that as an angel in heaven....

God Bless,

Laura & Family

Friday

Hello,

While Robyn had made baby steps Thanksgiving morning, her afternoon was not as good.

Robyn has some neurological problems that came about in the afternoon yesterday. The doctors are not quite sure why, but figure it is probably because her body is so sick. They are doing additional tests today and we won't know results for 24 to 72 hours. As soon as we know more, we will update the blog.

Please keep your thoughts and prayers focused on a miracle for our Robyn!!

Laura
xo

Thanksgiving Update

Baby steps are good!

Robyn had a stable day yesterday which was nice. She had some small steps, but the best thing is she didn't get any worse.

She did very well overnight - lower heart rate, better blood pressure, and her kidney's seem to be functioning. All good stuff!

This morning they were able to take her off 2 of her 4 blood pressure meds. White blood count is down and her blood gases were stable.

We are hopeful for a productive day and additional steps in the right direction.

I'll be reading the entries from the blog to Robyn today. Not sure how much she can hear us, but we are keeping positive vibes in the room and your well wishes will help.

Today we are thankful for Robyn...a wonderful wife, mother, daughter, sister, grandaughter, niece, cousin, and friend.

Laura

Wednesday Update

Hello,

Robyn experienced another setback over the night. Her blood pressure is extremely low, her kidney's are having difficulties, and the infection is getting worse not better.

As of right now, Robyn can not get her transplant until she stabilizes. We are praying that happens and FAST! The doctors are doing everything they can to bring her back to a proper level to get her back to the top of the transplant list.

We remain positive, especially in the room with Robyn. She is heavily sedated, but one never knows what she can hear. So, we continue to talk to her, pray with her, and cheer her on.

Please continue your prayers and positive thoughts - Robyn needs them!!!

Laura

Tuesday Update

Hello Friends and Family,

Today was another tough day in the road to Robyn's transplant. This morning she was placed on a ventilator as her CO2 was sky high and her O2 was too low. In an effort to keep her rested and healthy, she needs the extra assistance of the machine and a rest from the struggle to breathe on her own.

We are hopeful that a donor will be found soon. Robyn's transplant evaluation score keeps rising with each turn and that makes it much more of a confirmation that the next set of lungs that match her blood type will be hers for the taking.

I had just gone home on Sunday, but returned today to be with Robyn, Aaron, and our parents. When I left, she was alert and seeming to turn the bend. However, this infection has the best of her and those lungs that have worked remarkably well for the last 35 years are tired and failing.

While she can't talk due to the ventilator, she can open her eyes, wink, and shake her head yes. She knows we're here and pulling for her and that she has an extended team of cheerleaders - YOU! She is one TOUGH cookie and full of determination. The transplant team is optimistic that a donor may come through in the near future. They are encouraged by the fact that Robyn had been so healthy and active up until a month ago, which makes her a very good candidate for a successful transplant.

We thank all of our friends and family for reaching out to us during this difficult time. Since we are unable to answer the large amount of personal calls and messages, please check the blog frequently for updates. We will update the blog as we learn more on Robyn's status.

XO

Laura

Monday Update

Today Robyn was moved to ICU because she was having a difficult time breathing and her O2 saturation level was in the low 80's. The transplant team visited her and they are actively looking for a donor. Since she is now in ICU her evaluation score has increased and the search will become more focused for a transplant sooner-than-later.

Thank you for keeping Robyn and our family in your prayers.

Laura

Sunday Update

Robyn was able to get out of her bed last night for a walk. I'm sure it was nice to stretch her legs since she hadn't walked further than her bedside in over a week. Obviously, she is weak, but determined to gain some of her strength and muscles back. Her weight is down to 110 from 116 and it seems most of that weight was from her muscles.

Mornings are difficult for Robyn as she can't seem to get comfortable. Afternoons and evenings tend to be alright, but the mornings can be aggravating. Today the doctors gave her something that she can take so the morning hours are more comfortable for her.

On another note, I'd like to take this time to thank Robyn's loving husband, Aaron. He is a fabulous advocate for her and such a wonderful person to have by her side. Robyn is truly blessed to have found the "right one" and we are all grateful for him in her life. Thank you Aaron for all you do - especially right now balancing your time between the hospital with Robyn and home with Lola. XO

Laura

Relaxing Saturday....

Robyn had a full room last night - me, our Mom, and Dad. We know we aren't suppose to have that many stay overnight, but since yesterday was somewhat of a roller coaster, she welcomed us and we weren't leaving!

This morning we helped give her a bath (she hasn't been able to move to the other floor with a shower yet!) and washed her hair. We joke that everyone is going to want her new hairdo...it's drying with the BiPap strap attached. ;-)

Her doctor changed one of her medications in hopes that it will open up her airways. It seems each doctor has their "go to" drugs and we welcome any alternative suggestions that they have in order to try and knock out this infection.

Robyn's spirits seem a bit higher today as the realization of a pending transplant sinks in. Obviously, she has her concerns, but she is trying to remain positive. It's difficult though since she has so many thoughts and isn't quite sure how to channel them all. Hopefully, some of that will come in time.

Laura

She did eat cake!

On a lighter note, we were able to celebrate Robyn's 35th birthday today. After 3 weeks apart, she and Lola got to spend some quality time together. Lola enjoyed bringing her a birthday balloon, singing happy birthday, and eating cake that she personally picked out herself due to the red rose on top! We figure the rose was in her mind after a conversation with Grandpa about "65 Roses." ;-) Pictures will come soon....

A rough birthday....

I tell Robyn that she is a trooper and one of the strongest persons I know, but today and preceding days have really worn her out.

As of today, Robyn is officially on the transplant list and the first candidate for her blood type. Unfortunately, after many different attempts by her doctors, the infection is not improving as they would like. As scary as it sounds, Robyn now knows that transplant is her next treatment option. She will now begin the wait for the perfect match and will not accept anything marginal. The doctors have let her know that she is in good enough health to wait for that perfect donor.

The thing that is so shocking is that this rapid decline in her lungs is not typical of CF. It happens every once in a while, but we never thought it would happen to our otherwise healthy Robyn!

The waiting game now begins. We don't know if it will be hours, days, weeks, or months. But, we remain confident that she is in good hands and are optimistic that she will be up-and-about running with Lola soon....

P.S. Don't worry...Robyn's already inquired if this will interfere with her bikini body and it won't!

Laura

Update

The last few days have been a bit of an emotional roller coaster. Robyn is now listed on the transplant list but the doctors are still trying everything to get her lungs back to where they were or close to it. This was still quite shocking to hear even though we have accepted that a transplant will most likely happen in the future.

Yesterday she spent 5 hours off the BiPap and today another 6. This means she sustained sitting with the oxygen cannula on at 6 liters and her saturation didn't fall too low. We're hoping tonight they can lower the oxygen on her BiPap as this is her last hurdle to get out of the ICU Step Down unit. The goal is to get her upstairs to the normal pulmonary floor tomorrow morning so we can have a birthday party for her and Lola can come visit.

As always thank you for all the prayers and messages. Robyn has her laptop in her room so she is able to check messages when she feels up to it. More updates to follow.

Bye, Bye BiPap!

Today was a better day for Robyn. After 7 days of being on the BiPap machine for 24-hours a day, she is slowly being weaned to 6 liters of oxygen via cannula. Today she went off the machine for an hour in the early afternoon and 2 hours during the evening. She seems to be tolerating it well and is anxious knowing getting off the machine will get her out of the step-down unit and back to the regular floor. She is hopeful that will happen by this Friday which happens to be her birthday.

Her doctors remain hopeful that the latest antibiotics are working their course and that she is coming around the bend. Transplant evaluation is still in process, but we hope transplant will not be something she needs in the near future. The doctors are trying their best to get her lung function back to where she was when she was first hospitalized.

Robyn is thankful for the messages you are sending and is able to keep up-to-date via her laptop. Please keep the thoughts, prayers, and positive vibes coming!!!

Stay tuned for further updates....

Health Update

Hello, I’m Robyn’s mom and I am blogging for her while she is in the hospital. I thought this would be a good way to keep friends/family updated on Robyn’s condition so we don’t miss anyone.

Robyn was admitted about October 18th for an exacerbation resulting from an ordinary cold. She was discharged a few days later after having a PICC line started. She was home on IV and oxygen for just a few days when she noticed her heart racing. She went to a local hospital ER and was diagnosed with supraventricular tachycardia (SVT). The ER gave her a drug called Adenosine which basically stopped/started her heart in a normal rhythm.

Although she left the hospital feeling better she continued to feel worse, more short of breath, fevers, etc. Finally, a week later she went to her CF Clinic for her follow-up and was readmitted. The docs put her on a Bipap (http://www.wisegeek.com/what-is-bipap.htm)at night and a little during the day. Things continued to progress and they found she has a huge plug in her right upper lobe and air trapping in her left so she is now on Bipap most of the day and night (she initially did not like it but has adapted). Because she needed more oxygen than what the parameters on the regular floor would allow and because of the problem with SVT, they moved her to a step-down unit last week. She has been on Ceftazadine and Tobramycin and they finally added Zosyn (which she had been allergic to many years ago).

On Friday, they started a derivative of penicillin when they discovered that she had thousands of anaerobes growing in her lungs (they had done a different type of sputum culture to check it out).

Her doctor wants her to stay on bipap for a while to help her lungs recover (she is also on 8L O2) and finally has her O2 sat around 96%...with the bipap. We are hoping she will be discharged in the next week or so.

She is finally starting to get better but it’s been a long haul. In the interim, her doctor felt it was best to start the evaluation procedure for a double lung transplant. This was quite a shock to all of us and terrified Robyn. We are still trying to digest all of this. But at least now that Robyn is improving, we have hope that it will be in the distant future.

One of the hardest parts of this for Robyn is she hasn’t seen Lola in over two weeks but is able to talk to her everyday. Lola misses her but is getting along great with family and friends that are arriving every few days to help out with either Lola or staying with Robyn. Lola’s loving spending time with her grandparents, aunts and friends and this makes Robyn much more comfortable knowing she’s staying active and getting spoiled!

We have had a lot of prayers from family and friends…and ask that you keep her in your prayers and thoughts. Will update soon when I have more news.

Cleaning the nebulizers

Can you guess which batch I took out of the boiling water and which one my husband did?

Hint, hint--remember my husband is a Marine!

Fighting a cold...and winning!!

I had my first clinic appointment with my new cf doctor since I moved back here to NC. I saw him for three years when we were stationed here before so it wasn't really that "new"--just an update. Everything went well. My oxygen sat is back up to normal, where it was before my last exacerbation in June. My FEV1 is taking a little longer than I would like, it is still quite low. I'm a little worried I won't get it back up, I'm always afraid to lose any lung function. I'm feeling quite well so I need to stop worrying about the numbers.


In the evening after we returned home from my appointment my throat started hurting and I could feel drainage down the back of my throat...oh no, another cold! I started taking Elderberry syrup and extra vitamin C and the next morning I felt much better. I continued to fight the cold symptoms all weekend and then last night Lola came down with it. So, I've been wearing a mask on and off, pumping myself with vitamins and Elderberry and hoping I won't develop any other symptoms. I hate these little virus' that decide to attack my lungs, if they could just find the cure for the common cold my cf would be much easier to handle lately! Or of course better yet, a cure for CF would be even better!

What a good sport...

Sully puts up with a lot!

Lola likes to cover him with blankets, bounce on his back, dress him up.

He's such a tolerant dog. They are best friends.

Check out what he looks like with Lola's boas on!

Lola's Funnies

Just had to share a few funny things Lola has said the last few days....

First we were walking into a restaurant tonight and Lola said, "mommy, daddy says they have fresh puppies here" and then my husband, Aaron, said actually she just told me they have "snuggle puppies" here...she was talking about Hush Puppies!

Last week we were out and Lola told me she was cold and then asked "what are these bumps on my arm", I told her they were goose bumps. A little bit later I said it is cold in here, and Lola preceded to tell me "mommy you have mommy bumps!" Our nickname for her is Goose...get it? She's so cute!

We love the beach!!

It is so great to be back near the beach. We took a quick trip out to see the water, no time for "a day at the beach" yet, too busy getting the house in order.

Lola loves the sand but is still a little hesitant with the ocean, who wouldn't be at her age! We'll have to work on that. Have a fun Sunday!

No hitting...

I have to share this quick story, a few days ago my daughter decided to hit me for no apparent reason? I proceeded to say "we do not hit" and put her in a time-out. Lola started to cry, which she does a lot when she's put in a time-out. Finally I asked her why she was crying, "I was just doing your percussion" she said. Nice try! Smart little cookie! How do you punish her after she's just told you she was helping with your treatment. HA! So, she received a long heart to heart about how hitting and percussion are not the same thing. Quick thinking on her part because I know the hitting was not about percussion. Kids are so funny!

Moving day

Wow, it's been awhile. I was having a hard time getting this blog started and then had an unexpected hospital stay so needless to say the blog was put on hold. Since we're in the middle of moving this week I still won't be posting much but wanted to get something out there in case anyone had checked in. I've been following several other cf blogs and have been so inspired by so many stories from cystics that are doing very well healthwise to pre-transplants to post-transplants. I can't believe how many cf blogs are out there! Just when you feel like you're alone...



Happy moving to us!! If moving couldn't be harder I had to come down with a crazy cold virus that sent my lungs into over-drive. I had so much inflammation I spent 8 days in the hospital and 4 weeks--the most time I've ever--spent on iv antibiotics. I've never really been on oxygen so it was a bit scary being in the hospital and hardly being able to get out of bed without O2 on. I didn't want my daughter to see me like this but finally realized after they weren't going to discharge me after my normal 2 days I couldn't go another minute without seeing her. She was so excited to see me she didn't mind the oxygen and even relished visiting the hospital because all the nurses doted on her. I think she had more popsicles and chocolate she's ever had in her life!



We are on the road this week to our new home. We're really excited for the change. The weather is a bit nicer than Virginia and we'll be close to the beach which is never a bad thing. Wish us luck that all our household goods make it and nothing is lost ;-)

A little about me

I am a 34 year old woman with Cystic Fibrosis, I have decided to start a blog about my life as a mother and a family in the military. Here is a brief description of my life up until now:

I was diagnosed with CF at 10 months old. I had a pretty normal childhood aside from the medications and breathing treatments I took everyday. The first time I went into the hospital for a lung infection wasn't until I was out on my own in college at 19 years old, I wonder why ;-). For the next few years I would go into the hospital for a tune-up a few times a year until I met my husband. I'm not sure what changed ;-), but I didn't need a tune-up for several years!

I met my husband, a Marine Officer, 12 years ago. We've been married now for 5 years and moved 4 times in the last 7 years and now we are gearing up for the next move this summer. Moves are always a bit stressful for anyone but when you have to change doctors every few years it adds to the stress a little more.

Three years ago I fulfilled a dream when I gave birth to my daughter, Lola. Having CF I never knew if I would be able to have children so when we found out I was pregnant it was exciting but also scary not knowing what was in store for us. I had an easy pregnancy and easy delivery (well, if 21 hours of labor and 3 hours of pushing is easy!) and a healthy baby girl was born!

Here we are three years later and everyday I fall even more in love with my husband and our beautiful daughter. I can't imagine life without them, here I will write about our life as a CF military family.