3 Pieces of Advice

What are the three best pieces of advice you would give to a parent of a child with CF?

Only 3 huh? my 1st piece of advice would be to make every decision based on what's best for your child, not what's best for your CF child. Often times, I see parents parent their CF child differently than they do their non-CF children. Very rarely should the parenting be any different for a child with CF as compared to a child without CF. I also think it's important to model the behavior you want to see from your child. If you don't want them to be a victim of this CF life then don't be a victim yourself. If you want them to live a healthy lifestyle then maybe you should think about getting into exercise and showing them how important it is to be the healthiest version of yourself each and every day. And finally, don't ever let your child interchange the phrases “I'm not able to” and “I'm not willing to”. We're able to do almost anything that we make a priority, just often times were not willing to make the “not fun” stuff a priority in our lives.

Thankful Thursday: Nose Spray & Hubby

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for my hubby. He is just so good to me. I was gone for the day in Tucson for work, and when I got home he had done all the laundry (washed and folded), emptied the dish washer, sorted the mail, and picked up. On top of that, he has been full of endless compliments telling me how beautiful I look. Nothing like being built up AND taken care of. Man I love him!

I'm thankful for good family and friends. Are you maybe saw via pictures, we had our baby shower on Sunday. It was a great celebration made special by GREAT family and friends. They showered us with love and Peanut with gifts. I can't wait to get Peanut home to have her enjoy all the goodies.

I'm thankful for my little nugget. She is my favorite little wiggle worm that keeps me company day and night. I will miss her kicks, punches, squirms, and wiggles when she's finally here, but I cannot wait to see her face. I am so thankful that God has blessed us with this baby and I am so thankful that we are so close to meeting her.

Ronnie's List:

I'm thankful for a great weekend with friends and family. I can't say enough what an awesome job my mom, aunts and cousins did in putting together our baby shower. It was monkey/jungle themed and they found so many awesome toys, clothes, books, etc with monkeys and other animals on them. The totally cool part is that we of course got to keep all of the decorations! We ended up with about 7 stuffed animals, 6 outfits and 10 books. Thanks again guys, it was awesome. (If you're interested in seeing pics from the baby shower, click here)

I'm so thankful for winter grass. I'm not sure how it works in other parts of the country, but here in the desert, we have to plant different grass for the cold months. We laid down the winter rye about 2 weeks ago and it's really starting to grow and green up. We have a couple problem areas like last winter, but as soon as we patch those up, we're going to have some pretty turf. Never been a huge grass guy, but when it's my yard, I kind of have to be!

I'm thankful for my nose spray. This last hospital stay I started doing a nose spray (Fluticasone) each morning and night. Now, I'm told that my sinuses are chalk full and that at some point they'll need to bring in the roto-rooter, but as of right now, they don't think it's causing too many problems. I have the occasional sinus headache, but my biggest problem is my sniffing. I get in these crazy cycles to where I just can't stop. It's part habit and part making my nose feel better. Anyway, since starting the nose spray, my sniffing has gone down and overall my sinuses feel clearer. I'm certainly thankful for that...as I'm sure Mandi is as well :)

So, what are you thankful for today?

Question from Reader: Family Support

What did your family or friends do to help you through your most difficult times with CF?

I think the most important thing my family and friends did to help me through my most difficult times of CF was to not only show me empathy (not sympathy), but more important than that, was to hold me accountable. We all know that we can do everything right and still become sick from CF. We also know that there are some of us who don't do everything right and become sick from CF. There were times in my life that I was that guy. What I loved about my friends and family is they would always remind me that I was not taking enough responsibility for my own health. They would always encourage me to do my treatments and to exercise so I could be the best possible version of myself.

Did your family ever stop you from participating in anything because of your CF? In what ways did they push you to do things to help you?

After that frank talk with my doctor when I was about 5 years old my family never stopped me from participating in anything. In fact, they did just the opposite. I played sports pretty much year-round from the age of about 6 years old and on. My mom and stepdad supported this by taking me to each and every practice and encouraging me to be my best. They were also very good at reminding me in a loving way that the only way to be the best possible version of myself on the playing field was to be the best possible version of myself in regards to my CF life.

Pictures from Baby Shower

We had a great time this weekend with friends and family celebrating the fast approaching arrival of Peanut. My sis-in-law Chrissy was on picture duty and did a great job capturing some special moments. If you have any questions about a particular picture, let me know :)

My "Declaration of Compliance"

Guest post by Devon D

With Cystic Fibrosis comes an endless list of responsibilities and things to do. One of the most crucial things on this list is treatments. Doing my treatments has always been a struggle.

For me, it was fun and friends first, then health.

At a much younger age, my parents literally forced me to do them. They sat on the couch next to me and had to watch me to make sure I was doing them right. But even then, I sped up the timer, and poured out my medicines. As time moved on, and I got older, things got worse. I began getting into arguments with my parents. I literally refused to do my treatments and eventually my parents 'gave up'. I did what I want, and I was okay with that. In a week, I should be doing 14 treatments. Out of those 14, I ended up doing 5 at most.

I went to my CF clinic for a normal appointment, I wasn't too concerned. My PFTs were down from my baseline, which is around 100% for my FEV1, my FEV1 was approximately 90%. For me that's a huge difference. I, thankfully, wasn't put in the hospital. But still, it was scary! I was honest with my doctor, I told him I wasn't doing good with my treatments. The social worker that has been part of my CF care team said to him, “She always goes through these phases and she always pulls herself back through.”

With that in mind, I went home immediately decided to do my treatments the right way. Unfortunately for me, that lasted for about a week. I quickly slipped back into my old 5 treatments a week routine, sometimes less. I had no motivation to do my treatments. I didn't care. I didn't want to be bothered with my treatments. All I wanted to do was go on the computer, go out with friends, do fun things. Anyone who has ever done treatments would know they don't exactly fit into the 'fun' category. I went on with my normal routine, happy as could be, doing what I wanted. Before I knew it, my next clinic appointment was just around the corner. I went in a little nervous. I knew I wasn't doing what I was supposed to be doing. I felt as if I let my whole care team down. I did my PFTs to the very best of my ability hoping for some miraculous pull through. I lucked out, my PFTs were not only good, they were better then they had been the last time. They were around 98%. I don't know why they were so good. I didn't deserve for them to be that good. I knew I didn't. I felt like it wasn't fair to the people who really try hard and always do what they are supposed and still don't have good results. I felt as if I had cheated my way through my PFTs. I should have been in the hospital right then and there. But my PFTs didn't show it, and my lungs didn't feel it. I felt good, physically. Luck is the only explanation I could offer myself. My doctor was so pleased, if only he knew how horribly I had been doing. On the outside I was smiling, proud of how well I was. But on the inside, well, that's a different story. I was breaking down. The whole way home, I silently cried while listening to my ipod. But it was then that I decided that I couldn't do that anymore. Surely, the next time I wouldn't be so lucky. I would be in the hospital without a doubt if I didn't pull myself together.

That very next day, I began with confidence. I woke up early and immediately got on my my vest. It was summer, so I knew if I got up later I wouldn't even bother to do it. For the first time in a long time I did my whole treatment the rightway. And you know what? I felt great. Of course it was only my first treatment, so I didn't feel a whole lot physically. But mentally, I felt so proud of myself. Everyday, that was my routine: get up early do my morning treatment, do whatever it is had to be done throughout the day, do my night treatment and go to bed. A little bit into my 'declaration of compliance', I missed two treatments. I was a little disappointed in myself, but I was far from discouraged. That next day I got right back into my routine. And do you know what? I haven't missed since. As of September 19, I have completed 30 days of treatments with out skip. That's 60 treatments. Now, not only am I feeling the physical results. Mentally, I feel on top of the world. I made it. I got off course for a long time, but I gained control of myself and now I'm back on track. I'm ahead of CF in this racetrack I call life.

Now that I've been 100% compliant for 30 full days, I feel absolutely and completely wonderful. I'm sick with a cold right now, but regardless I feel amazing. My lungs are feeling stronger than they have in years. I can breathe so easily. I can run. Running has always been my weakness in athletics. But I'm able to do it without stopping every minute. Now, I can run for 5 minutes without stopping. And because I can breathe more easily, I exercise more. And you know what? That has helped my appetite. My appetite has improved so much. That means my weight is stable, and my feeds go from 3 nights to 2 nights a week. My appetite, and better eating habits has affected my energy level.. I want to get out and do things. I look forward to going to school, rather than sleeping all day. I don't want to sleep until 12 on the weekends; I don't even want to sleep until 11...I want to be up by 10. I don't want to sit on the computer all day. This time last year, when I wasn't compliant, I was lazy, worn out, and unmotivated to do anything. It's a chain reaction.

Oh how treatments make a huge difference. I feel better than I ever have.

I can't honestly say doing treatments the right way is easy, nor can I say it's fun. But what I will tell anyone (at least anyone with CF) is that it is worth it. It's a struggle at first, and chances are some treatments are going to be skipped at first. And that's okay. It's no reason to be discouraged. Just never give up. Giving up the first time was the worst thing I ever did. Not only did I feel like I let my whole CF care team down, I let myself down. And that bothered me. I lucked out, when my PFTs were better. They shouldn't have. They should have been worse. And getting back into the habit was the best thing I have ever done.

If I can feel this amazing in 30 days of treatments the right way, I can only imagine how I'll feel a year from now, with this same routine. But not only is this going to help me a year from now, it's going to have a huge impact on my health years down the road.

If I can do this, believe me, anyone can. But do it for the right reasons. Don't do treatments for the sake of getting them done, because doing half a treatment isn't really doing it. Do treatments because you want to stay healthy. Do it because you want a bright future.

And although I've already said this, it is worth it. I promise. What's worse: spending an hour a day (or however long it takes for you to do treatments..I only do two half hour treatments a day) on treatments or spending a few weeks in the hospital/on IV antibiotics? Think about it.

Author's bio: I'm Devon. I'm fourteen, fifteen on November 6th. And I'm a freshman in high school. I live in New Jersey. I was diagnosed with Cystic Fibrosis at age 1, and with CF- Related Diabetes at age 12. I'm a straight A student with all honors classes, an athlete, and part of Animal Lover's Club, French Club, and SADD (Students Against Destructive Decisions) in school. And I volunteer and help people in every way I can.

Note from Ronnie: I can't thank Devon enough for contributing this blog. It's always great to hear stories of cysters (or fibros)that finally 'get it'. They get that they would rather make a "painful" short-term investment each and every day for the possibility of a long-term reward. My wish is of course that everyone would see the light as quickly as Devon has, but the great news is, it's never too late! It's never to late to give it all you have to be the best version of yourself!! Let's all get started today! Thanks again Devon :)

Sweet Belly Shot

35 weeks

Thankful Thursday: Baby Showers & Preggo Classes

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for hospital pregnancy classes. Our hospital has classes that they offer for pregnant moms. This week we went to two different classes. Monday was a class all about caring for your new baby and last night we took a breastfeeding class. I am sooo thankful for these types of classes as they help a clueless first-time mom feel a little less clueless.

I'm thankful for my big brother. My big brother turns 27 on Saturday and when his birthday comes each year I always feel so thankful to have such a great big brother and am so thankful that he's another year older. There is not another man like my brother, and I feel so blessed that I got to grow up with him for the last (almost) 25 years. He's a fun, smart, unique, loving guy and I am so blessed to have him in my life. He has always taken such great care of me (even when I didn't think I wanted/needed him to) and for that I am thankful.

I'm thankful for being 36 weeks pregnant. As of Tuesday, we were 36 weeks pregnant. 36 weeks is a bit of a magical number, it's not quite full term (1 week shy) but it's a time when if Peanut came, everything would most likely be a-ok. I am soooo thankful to have made it to 36 weeks, and that it's been a healthy, easy pregnancy! I am so thankful for Peanut and just can't wait to finally see her face at this point.

Ronnie's List:

I'm so thankful for loving and supportive grandparents-to-be! We are both blessed to have parents that are SUPER excited for the arrival of Peanut. This will be the first grandchild for both sets, and I can tell by every word out of their mouth and every action they take, that they are uber pumped to welcome her into this world. I've always felt that I had the best family in the world, it's just really nice to be married to a woman who can say the same about her's :)

I'm thankful to be back into the groove. As many of you know, after a stint in the Hole, it can be difficult to "find your rhythm" again. I mean, it eventually comes back, but sometimes it takes longer than others. Thankfully, the adjustment period didn't last very long this time and I'm already fully engaged in my gym, sleep and treatment schedule.

I'm thankful for "Auntie Showers". Anytime a woman in the family is getting married or having a baby, all of the aunts in the family get together and throw a shower. This weekend, we will have the pleasure of having an "Auntie Baby Shower" and are very excited to have the clan over to the house for a day full of hanging out and gift giving. Well, I guess we'll be gift taking, but I know that's exactly what they want us to be doing :)

So, what are you thankful for today?

How Did Your Parents Positively Impact Your CF Life?

Here are some good questions and answers about the impact of parenting on this CF life and how my parents made CF treatment time fun!

Question: How did your parents positively influence your life and living with CF? How did they negatively influence your life as a CF’er?

The biggest thing that my parents did to positively influence my life and living with CF was to they themselves have the attitude that we were going to kick CF butt each and every day. Treatments were never negotiable growing up but after I “did what I had to do” I was free to do anything and everything that I wanted. I never ever saw my mom discouraged, scared, or angry because I had CF. I later found out that she spent many nights crying herself to sleep, but I never saw that. I think it was very important for me to see her confident about facing this CF life. The only negative thing I can think of was my mom's initial reaction to the CF diagnosis. As most moms do she went into hyper protect mode. She threw me into a bubble and had no intention of letting me out. This lasted for about 4 years or so until a Dr. finally said, “Chris, Ronnie is going to be somewhat physically disabled his entire life, but if you continue doing what you're doing he'll be mentally disabled as well.” That changed my mom's entire perspective on CF.

Question: What unique memories do you have of your parents and how they took care of you living with CF? {For example: my parents use to sing to me certain songs during percussion time, which I sing to my daughter now. My parents would purchase new PJ’s for each hospital stay. My mom would stop at a place for breakfast before a CF doctor’s appointment.}

I have fond memories of treatment time because I always got hand-pounded by either my mom or stepdad. I just remember it being such a time of bonding between us and frankly gave us time to catch up on each other's day. When I was a child my mom would put on a song and "beat" to the beat of the song. We would also play a game in which I would try to get away and she would grab my legs and pull me back I often laughed so hard it put me into a coughing attack. Treatment accomplished!

This is for all parents, fibros and cysters to chime in on! What about you guys, how would you answer the question?

Parents, how do you feel that you both positively and negatively impact your child's CF life? How do you make treatments fun?

Baby Your Baby

We had a class last night called "Baby Your Baby" and it was all about what to expect for the first couple of months after bringing the baby home. The class was taught by a woman with many years of OB experience who now does community education full-time. There were 4 other couple in attendance for the 3 hour class and one of the couples was actually in our birthing class as well. The teacher had all of the standard props there including a fake baby, diapers, swaddling blanket, etc. It was a good opportunity to freshen up on some stuff that we may have forgotten after a long lay-off of taking care of youngsters - me with my little brothers and Mandi as a babysitter.

Like Mandi has said from the beginning, "Whenever it was someone else's baby, I never worried too much about doing things 'just right' cause I knew at the end of the day, the mom would clean up my mistakes. Well, now we'll only have each other to clean up the mistakes, so it's a lot different". I actually shared that sentiment with the entire class and they all seemed to have a good laugh at it and I saw a few nodding heads.

I can't even recall what was covered first in the class, but I do have a few points that were made that are sticking with me:

- Don't allow your infant to sleep with stuffed animals, bumpers or blankets in the crib

- Don't under any circumstance leave them alone around any amount of water

- When babies have outstretched arms and are moving around quite a bit, that usually means they're done playing and are overstimulated

- Don't let your newborn sleep for over 4 hours at a time

- When they are infants, there is no such thing as spoiling them with attention

So those were the things that kind of stood out to me during the course of the class. I'm sure there would be others if I really racked my brain a bit, but at this late hour, that's all that I've got. My question is this however, are there any things that you may have never known or just kind of missed prior to taking your baby home that you wish you would have known sooner or just paid better attention to? Anything that caught you completely off guard? Any and all tips, insights, etc are always welcome around here!

4 Weeks and Counting

AHHH that's right, only 4 weeks until D day!! As of Saturday, my due date was exactly 1 month away. I could not be more excited to be getting so close to meet this little love. I will miss having her inside me, with me all the time, feeling her every move, but I will LOVE being able to look at her sweet little face and hear her little cry!!

I have decided that the thing I will miss most about being pregnant, is feeling Peanut's every move. Somehow I feel like I am sharing special little moments with her that no one else knows about - like we have a little secret every time she nudges me, kicks my bladder, wiggles around to get comfy. But I will say, as Peanut gets bigger in my compact 5'2" torso, she is starting to impede upon my ribs a bit. For some reason, she LOOOOVES to snuggle both feet or her booty right up under my ribs on the right side. It's funny, never my left, always my right. The other day she was snuggling her booty up into my ribs like usual and I looked at Ronnie and said, "She must have my booty...I think she's 50% booty!" So in honor of Peanut, and her booty wiggle into my ribs, here's a little music video we made a couple years ago. Bring on that booty, Peanut, momma's ready to be snuggled for another 4 weeks, as long as you don't break my ribs :)

Friday Firsts: Maternity Photo

Shot by our good friend Karen at Elan Photographie

Thankful Thursday - Sleep & Outrun CF

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for generous and talented friends. As I mentioned in my Mandi Monday, we did maternity photos on Sunday. Thankfully, we have very talented friends, so I had a friend do my hair and another friend of ours took the pictures. Let me tell you, these ladies are VERY good at what they do, and they were sweet enough to "donate" their time for us and peanut!! I couldn't be more thankful for these ladies. They do great work, and our maternity photos will be awesome thanks to them.

I'm thankful for sleep. Lately I have been more sleepy. I generally fall asleep around 9:30 on the couch, get up to get into bed, and want to die when my alarm goes off at 6:30. Nothing feels as good as curling up in bed when you're super sleepy, so I am VERY thankful for sleep. Many people said that I'd have trouble sleeping towards the end, and besides the 3-4 bathroom trips during the night, I sleep like a rock...and for that I am THANKFUL!

I'm thankful for my hubby. My back has been a little sore the last week or so. It's not sore all the time, and not sore, sore, just more "tired feeling" if that makes any sense - it probably doesn't help that we've started lifted again since Ronnie's been out, and we lifted on back...buuut oh well :) Anyways, I'm thankful for my hubby who rubbed my back for a good 30 minutes the other night. He spoils me rotten!

Ronnie's List:

I'm so thankful for the response to the Fall edition of the Outrun CF Virtual Race. It's so awesome to see the community come together for a simple fundraising and awareness event such as this. Every time someone posts a picture of themselves in the new Outrun CF t-shirt, it puts a smile on my face. If you have no clue what I'm talking about, or are interested in hearing more and possibly registering, click here.

I'm thankful that I was able to get back to the gym this week. I'm even more thankful that I've been able to return at pretty close to the strength that I left. I think a lot of it has to do with just feeling better and having better oxygen saturation, but it always nice to not have a huge drop-off. Consistent hospital stays can start to get discouraging if it feels like it's two steps forward and three steps back in terms of exercise every time I go into the Hole. That definitely wasn't the case this time and I'm looking forward to seeing the progress until next stay.

I'm thankful for the opportunity to shoot maternity pics this last weekend. It makes it feel like Peanut is that much closer to coming and the thought of having her here gets me really excited. The photos were done by a good friend of ours, and judging by the previews she has given us, they are going to be fantastic. We'll be sure to post a couple here for all of you who are following this stage in our lives.

So, what are you thankful for today?

First Time Smoking Cayston

Just ran across this video as I was cleaning up my computer files and I thought I'd share. I find it funny how excited I was to try this med. I guess I'm just a CF med nerd. I still will say. that thing is shockingly quite!

Top Ten Tuesday: Home over the Hole

It is great to be back in the saddle again! My first weekend back was awesome and I got to do some of my favorite things - family over for dinner, lounged on the couch to watch a movie, college football Saturday, church and exercising. It couldn't have been a better "welcome home" weekend.

I thought I would just list the top ten reasons why I love being at home as opposed to the Hole. I'm going to do the first ten that come to mind, so I'm sure there will be some I miss.

Coffee from my own coffee maker - We lucked out and got a pretty spiffy coffee maker from a yard sale that had never been used. It's the kind that has the water tank on it plus grinds the beans right before the coffee is brewed. The coffee tastes super good and if I'm feeling frisky, I can even make myself a latte.

Walking around in my underwear - Ahhh, the simple joys in life. Maybe because it's hot or maybe because I'm just weird, but I love hanging out in my boxer briefs. I mean, isn't that a reason us guys buy our own place? No? I guess it's just me. Anyway, ask my wife, pants are optional in this household.

No late night vitals - It's never awesome to be woken up at 3 in the morning to get your blood pressure checked and your temperature taken. No such madness around here!

A comfortable bed - The bed at the hospital isn't terrible, but it's also not my own bed. On my own bed I have about 67 pillows and a pillow top - basically the closest I could come to recreating a cloud. The mattresses in the Hole are closer laying on the ground than they are laying on a cloud.

A shower bigger than a linen closet - I like big showers and I cannot lie, you other brothers can't deny. Can anyone guess what song that almost is? Anyway, my shower is big and powerful and I love it. Plus, I can always count on hot water and high water pressure.

My yard - While I get outside when I'm in the Hole, I still don't see much of nature. The hospital campus is made up of a bunch of buildings surrounded by a bunch of cement. Grass and trees aren't plentiful and there isn't a fruit tree in sight. What I love about being home, is finding all of that just a few feet out my back door.

My couch experience - There is no kicking back on a sectional with my feet propped up watching a big screen in the Hole. Instead, it's literally impossible to tell what the score is to any football game because the picture is no bad.

The gym - I do what I can in the Hole in terms of exercise, but it doesn't come close to what I can do at the gym. I got back to Spin class yesterday and loved every minute of it. I actually "took it slow" my first day back and still was sweating like crazy. Love it!

Cooking my own meals - There is only so much on the hospital menu. Plus, I really like to cook and the closest thing I do in the Hole to cooking is reheating left-overs. We've already made a couple of meals since I've been back and every bite seems to be better than the last.

Having my Jezzabel around - JBell really is man's best friend. She is so loyal and loving that it's crazy. When I'm in the Hole, I miss walking in the door and having my four-legged friend SUPER excited that I'm back. Plus, she goes on a hunger strike while I'm gone, so I'm always wanting to get back to her quickly :)

Well there you have it! So what about you? What are those things you love about being home that you simply can't get in the Hole?

A Weekend Out of the Hole

As you maybe saw (see last post) Ronnie busted out of the joint on Friday. We got home int the late afternoon and preceded to do nothing...it was glorious! We lounged around on our couch and watched TV, made smoothies for dinner (which I had been dreaming about for a week), and just enjoyed being back home together. We then, of course, enjoyed a good night's sleep in our own bed - such an awesome feeling. I'm sure anyone can related. You go on vacation, you sleep at a friend's house, you visit your in-laws, regardless of where you're sleeping, there is nothing like coming home and sleeping in your own bed. Well after 3 weeks in a cot and hospital bed, we were excited to be back in our own bed.

Saturday was an errand running day. We made a grocery store run. Obviously 3 weeks not home leaves you with a very empty fridge. Then we ran to some clothing stores to find me an outfit for me to wear in our maternity photos (more on that in a second). As a result of this chore, I have now realized when you don't shop for clothes - when you're 8 months preggo and nothing fits. Needless to say, I bought only what was necessary and felt wayyyy better about the world when trying on shoes. Ever notice how that works? If you're not feeling sexy, you just buy shoes...you're feet can still look good, right?! Unfortunately not totally true during pregnancy, as my feet often look more like paws than feet, but anything was better than trying to figure out what size and style shirt would fit my belly tight enough to see a bump, but loose enough to not look awkward. Anywhoo, I found a couple shirts that worked, so I was happy in the end. Ronnie even found some steals on sale that I convinced him to buy. So it was a success. Errands were followed by a relaxed night with Josh and Chrissy. We watched a movie and vegged out. It was fun getting to hang out again (it had been too long, since we were in Tucson).

So that brings me to Sunday...maternity photo day. I decided to treat myself to a little pampering for the photos. So I had a friend of mine (who also did my hair for our wedding) do my hair. Nothing crazy, she just blow dried it and added some casual curls. AND I had my makeup done (figured I can go all out since this may be the only time I do maternity photos). The photo session was a blast, as it was a friend of ours that took the photos, so it was casual and fun. She took photos of me, my belly, and of us together. I'm excited to see how they turn out...and we'll share some of them here when we have them.

So that's it..that was our first weekend out of the hole. And a crazy side note, we're 35 weeks, tomorrow, so it may be one of six weekends we have left (give or take depending on when Peanut decides she's done cooking). CRAZY!!!!

Update from the Hole: Day 24

Thankful Thursday - Little Brother & Little Brother-in-Law

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for a thoughtful hubby and a wonderful brother-in-law. Yesterday morning I got word that the next batch of Outrun CF Virtual Race t-shirts were finished and ready for pick up. Only trouble is that we're in Tucson, and I had to be at an all day leadership training program. However, we have to get the shirts in the mail today (Thursday) or Friday in order to be on the safe side that people would receive their shirts by race day (Oct. 1). This meant I was going to have to leave my training at 4pm when it ended, drive the 4 hours round trip to get the shirts, go to my office to print the shipping labels, and stuff envelops. Needless to say I felt a little stressed by the thought of it. Well much to my delight and surprise, when I got out of my training I received a picture of my wonderful brother-in-law, Andrew, standing in Ronnie's hospital room, holding the box of shirts in his hands. They had orchestrated (and tricked me with a lot of lies) a plan to have Andrew get the shirts (he's living in Phoenix now, YIPPEE) and drive them down to Tucson to drop them off. When I got the picture text message, I actually got teared up (thank you pregnancy hormones). It was the best surprise EVER! ANNNNNND I'm thankful that all the shirts have been packaged and will be mailed TODAY! Who's excited?!

I'm thankful for leg-rests. As I mentioned, I've had a leadership training program this week. The first day, sitting with my feet on the floor while sitting in a chair, I learned that my feet get SWOLLEN that way. My thighs went straight to my toes. Tuesday and Wednesday I got wise. I grabbed a chair and put my legs up on them. Best idea ever!! I leave each day with calves AND ankles...can't beat that.

I'm thankful for this hospital stay. As Ronnie mentioned in a few of his videos, he's starting to feel better each day and we're thinking we MAY get out on Friday if things keep going the way they're going. While this hospital stay was a bit longer than we anticipated, based on his numbers heading into he stay, I am SO thankful for the opportunity he's had to come in and get tuned up. I'm so thankful that there are IV meds that work. I'm SO thankful that we have the insurance to pay for the stay. I'm so thankful that the timing of the stay is now, and not 6 weeks from now (I am always good with him being in the hospital...but the one exception would be if he was in the hospital when Peanut was born or in the first couple of weeks of Peanut's life. If it happened I could deal, but I'm fairly certain I would not have as positive of an attitude about the stay!!) I'm thankful that he's feeling better and ready to get out to kick butt on his own. I'm thankful that we have the opportunity to get out of here Friday and work together to get his PFTs up. I'm thankful for our weekend morning traditions of Dunkin' and Johnjay and Rich. I'm thankful for the wonderful home-cooked meals Chris, Ronnie's mom, brought us several times a week. I'm just flat out thankful for all that this hospital stay has entailed. We are truly blessed!!

Ronnie's List:

I'm so thankful for my baby brother having my back. It's a pretty long story so I'll try to give you the short version. In order to get the Outrun CF shirts to people by race day, we knew we would have to send them out in the next couple of days. Problem is, we're still in Tucson, and the shirts were in Phoenix. Mandi was at a conference until 5 PM and our only option was for her to leave after the conference and drive up to Phoenix to get the shirts. That would get her back to the hospital around 9 but she would still have to pack them all to get them shipped out. It was obviously something she wasn't looking forward to, and be honest, it was the last thing that I really wanted her to do as well. As soon as Mandi went out the door this morning on her way to the conference I texted my brother Andrew to see if he could help out. He didn't even think twice and said that he would gladly pick up the shirts in Phoenix and run him down to Tucson in order to save Mandi the trip! We're talking a solid 4 hours in the car. I didn't tell Mandi this was happening and it all almost blew up in my face when her phone died as she left the conference. I was panicking at the thought of her hitting the highway before her phone would be charged enough to make a call. Fortunately, she called me before she left town and I gave her the good news. She shed a few tears and said that she couldn't be any happier! So again, I would just like to give a big thank you to my little brother for bailing us out :)

I'm thankful for my entire hospital experience. I'll be honest, I generally don't hate the hospital because I can see the forest through the trees, but this stay has been better than usual. And maybe not better than usual per se, but better than the last day. During my last hospital stay the entire adult CF population in Tucson was transferred to adult pulmonologists instead of being seen by our pediatric CF team. Transition of course is never easy as each party needs to learn each other, but this one was particularly hard since the new adult team was basically forced into the position. Fortunately, they're not the only ones responsible for our care while in the hospital. We are seen daily by hospitalists that focus on overall care and can handle pretty much any issue. Before actually doing anything, as in writing the orders, they have to confer with the adult team, but they're the ones that you can count on to get stuff done. This stay the hospitalists seem to have taken even more interest in cystic fibrosis. They are asking more questions about it and whether it's true or not, it just seems like they care more. They are taking more pride in their job and I truly feel like they felt a little bit invested in me this day. In fact, the 3 weeks I have been here I've only seen an adult pulmonologist 3 to 4 times and I'd say that I'm doing just fine! So a big thank you to all the hospitalists that have been in and out of my room :)

I'm thankful for my most recent PFT results. They still aren't up to that magic “baseline”, but I don't expect my lung function to get there during hospital stays as I get older. Since I rely so much an exercise to keep me healthy, it's not a shocker that my lung function often drops a bit in here the first couple of weeks. There is a big difference between exercising somewhere around 2 hours a day to being regulated to walking around hospital grounds and riding an exercise bike. So all in all I'm very happy with my latest PFT numbers being around 5 to 7% below baseline. There is no doubt in my mind they will be back up to baseline or beyond in about a month or so!

So, what are you thankful for today?

Update from the Hole: Day 22

Ever wonder where Mandi sleeps while we're here? Answer within!!

Update from the Hole: Day 21

Outrun CF registration - http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-fall-edition-2011

CFit: Cystic Fibrosis Exercise Program - http://www.cysticlife.org/CFit.php

Why Do You Go Into The Hospital For So Long??

I've been meaning to write a blog about this because it's a question I get often and I just so happened to answer it this weekend, so I thought I would share.

I have a question? Why do you always do such long hospital stays? If it helps you great, I was just always told that after ten days if antibiotics don't work, they aren't going to, they always kept me 14 days so that the drugs would be in my system a bit longer, but after 2 weeks if I wasnt better they would start me on new Meds or add to the brew. So I was just wondering?

I guess the short answer to your question is that I come into the hospital for more reasons than just IV antibiotics - focused care, hand pounds, rest, etc. If I thought IV antibiotics (and IV antibiotics alone) did the trick, I would just do them at home. For me, I've improved in here after 5 days at times and after 25 days at other times.

Like most things, I just think it's important to figure out what works for us, truly works best for us, and go with that. It takes a lot of trial and error, but eventually we can get it figured out.

And about the 10 day antibiotic thing... that is still disputed in the medical community and I've been told off the record that some doctors use it as a tool to just get us out of the hospital. Many people don't think about this, but hospitals start to lose money on CF patients after a certain amount of days. Could pressure from the hospital or from the insurance company play a role? I of course don't know, but when it comes to money, nothing is out of the question.

Also, how antibiotics actually work in the lungs of a CF patient is not only not clear but hardly an exact science. A study just came out stating that there was no difference in clinical outcomes when it came to selecting drugs based on a sensitivity study and just cycling the most common antibiotics. It is my belief (as well as the belief of many others) that antibiotics are still one of the most misunderstood parts of our care.

The only way to truly know if the antibiotics were taking are working, is to focus on the quality of life and the improvement we see in how we feel. It's also important to remember that there is also a victory in not getting worse. My numbers often don't change for the better while I'm in the Hole, as my exercise is greatly reduced and I don't do well lung wise laying around all day. My number 1 goal for coming to the hospital is to get me back to a place that I can leave here and confidently say, "I'm ready to kick some major booty!"

Hope that answers your question, it was a good one!

**It's also important to note that I have in fact tried at home IV's more than a couple times and I neither felt better, nor saw an increase in lung function, any of those times. That doesn't mean that I won't try again, but it does mean that I am skeptical. Things can change however, and I'll never pigeon hole something forever :)