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Why do I have RunSickboyRun.com?
Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.
Material on this site is produced byRonnieandMandi Sharpe
But before I do, I'll start by saying that we can't thank you enough for all the prayers. They are really felt, and it is so evident that God's hand is all over this process!
Our embryologist, Drew, called yesterday afternoon with our day 3 update. Right now we are sitting at 14 that are 6-8 cell embryos like he likes to see on day 3. The other 7 are sitting at 2-4 cells. This means 14 look really good, and 7 are behind (they could catch up, but likely won't). This is exactly what is expected on day 3, and we could not be more thrilled. It's actually the best we've looked on day 3...and Drew said this is the best he's seen from us at this stage in the game. Praise God!
Ronnie and I are both feeling good. Ronnie's little incident Wednesday night was nothing a little GoLytely couldn't cure, and he's back up to par after a long night and morning on the throne. I am feeling really good for what I usually feel on day 3. Still a little discomfort when I bend/move or have pressure on my stomach, but all of the constant sharp cramping is gone. I still look about 4 months pregnant, but hey, that's what yoga pants and baggy shirts are for, right?
As of now, we are game on for Sunday at 11am! Come on babies, mommy's tummy is ready for you!
Prayer Requests:
- Pray for embryos that they continue to do well and that we have a handful of good ones on day 5.
- Pray for my body to continue to heal, so I feel 100% in the next couple days
- Pray that my body is ready to have two babies implant and stick around
- Pray that the 2 embryos that will implant and hang around grow in a way that Drew (our embryologist) instantly knows they're the two he should pick to put back Sunday. Make it clear as day in his heart and mind.
Thanks again for all the prayers. It means the world to have your loving support and to know that our awesome God is hearing from so many on our behalf.
I was very impressed (that would be an understatement) when I saw the new One Republic music video "I Lived" for the first time. It may be the best awareness video that has ever been put out in the cystic fibrosis community. It is rare to find an awareness piece that does such a great job in striking the perfect balance between education and inspiration.
"I Lived" by One Republic
The music video below features real-life CFer Bryan Warnecke talking about what CF is, how it's treated, what his expectations are, his fears, his blessings and everything in between. What I took note of however, which may ultimately be most important for CF patients and their families, may not be what others noticed. Before I get into that, please watch the video below:
Be Who You Want To See
So what struck me most about that video? His parents. I wish I could give them a hug and a high-five and say "job well done". They put their son in the best position to live out the title of the song. That video was much more about life than it was about CF. And when our parents allow us to live, in spite of CF, we can often look back and credit their approach for our successes as CFers.
Did you see how they raised Bryan? And in return, Bryan's attitude toward a life with CF?
"It's just one of those things that really makes you appreciate life. Makes you appreciate where you are as a person." - BW
That would not be his attitude if he was raised to fear a life with CF. If he was made to think that life gave him the short-end of the stick.
I do not know them personally, but I guarantee they modeled that mentality through action and words.
Judging by the clips, the last thing on their mind was that CF was a life-altering or life-shortening disease. Judging by those clips, they parented their son Bryan, and not the disease cystic fibrosis.
A Life In Spite of CF
So what did living life in spite of CF look like to them?
Falling into a pit of foam, in a public play place (eeeeeeek!!!) at 1:17
Riding a bike and falling over without a parents fear that their son is somehow "more fragile" at 1:47
Riding in a tractor down a dusty road (oh no!!!!!!) at 1:56
Water skiing in a lake (please make it stop!!!!) at 2:07 and 2:11 (with mom cheering in the background)
Tumbling over in an electric ATV then being "put back on the saddle" and encouraged to try again at 2:19
Boogie boarding in the ocean at 2:26
Jumping head first into a pool, maybe public (ahhhhhh!!!), at 2:35
Snow skiing at a presumably high altitude at 2:58
Back to the dusty tractor ride at 3:00
Playing hockey, which I assume means he's in a public locker room with his team at some point (I can't take it anymore!!!), at 3:24
A Life Ruled by CF
Now, I didn't randomly pick those scenes out of thin air. I picked them because they are all things my mom would have prevented me from doing 34 years ago. When I was diagnosed with CF, my mom forgot that she had a son and instead only remembered that I had a disease.
Does that make her a bad mother? Absolutely not! She did the only thing she instinctually knew how to do as a mom - protect me. Her protection came in the form of shielding me from the outside world in fear that I would become "more sick".
If she would have continued parenting me like that, there is no doubt that I'd be dead.
My Life Changed
By the grace of God, at the age of 5 or so, my very imperfect mom with the very imperfect kid made the most perfect decision, tolet me live. In fact, it was this quote by my doctor that started it all...
"If you continue doing what you are doing, not only will Ronnie be somewhat physically disabled his entire life, but he'll become mentally disabled as well...and that's far worse"
That's when my life changed.
She no longer parented the disease, she just started to parent Ronnie, her rambunctious son.
Mind you, this was still tough sledding for my mom. Not allowing the disease to make every decision for her didn't feel natural. There were many times where her heart and her head didn't agree. She had to practice parenting me apart from the disease. It was a decision that she chose to make every single day. That doesn't mean it was easy.
The fear was still there. The agony still hovered over her at times. The doubt crept into her mind from time to time. You know what though? She never let me see that. She would cry herself to sleep almost every night, something I didn't know until about 6 years ago. I never saw that.
After she popped the bubble she formed around me, the only mom I remember was the mom that told me to live, and live well. The mom who sacrificed her afternoons and weekends by having me in sports year round. The mom who made my health our families number one priority, while still be a fantastic mother to my two younger brothers. The mom who would come home physically and mentally exhausted from work, yet made sure to hand pound my chest, back and sides for 45 minutes like she had done before leaving for work in the morning. The mom who took a job that she was overqualified for, and not all that interested in, because it had the best medical insurance in the state. The mom who made me believe that if I put my health first, I was capable of anything. The mom who talked about when I would go to college/get married/make her a grandma, and never "if". The mom who made cystic fibrosis feel like such a small part of our lives, even though most of her energy went to managing it. The mom who raised a boy who was proud of having CF, because she made it clear that she was proud of me - the boy with brown hair, buck teeth, a loud voice, fast feet, quick wit, and oh yeah, cystic fibrosis.
I'm asked all of the time, "where does your attitude come from?". That's easy. My mom.
My Mom, The Perfect Mirror
My mom made me into the man I am today by using CF, and it's inevitable challenges, as another tool in her tool belt. She had me convinced that CF helped mold me into the boy that was the "apple of her eye". She always talked about what a blessing CF was to our family. She was quick to point out the opportunities that came along because of cystic fibrosis. She often reminded me of all of the great people I met and friends I had that would have never been a part of my life without CF.
I loved my life with CF, because my mom loved our life with CF.
Frankly, if she would have shown me that she hated CF, I would have thought that she hated me, too. If she would of shouted "CF sucks", I would have heard "our life sucks".
I never once got that feeling from my mom. I haven't heard her speak a bad word about CF to this day.
She perfectly modeled everything she wanted to see in her son and for that I am forever grateful. Like Bryan's parents, she made sure that a life with CF was a life full of living.
The only reason I'm able to write this blog 34 years after I was diagnosed with cystic fibrosis - with her granddaughter tucked safely in bed and my wife nestled up on the couch - is because I had a mom who believed, from the bottom of her heart, that I would.
I'm here and ready to update, but I'll keep it (semi) brief. Monday Ronnie had his aspiration. Monday night Ronnie rewarded himself with a feast from Long John Silvers. Welllll, that was a bad idea. Ronnie's body was so confused by that junk that he's been sick ever since. Monday night he was up "enjoying" his chicken planks and hush puppies a second time. And his stomach has continued to be really painful since. We aren't sure if it's related to the aspiration, the Long John Silvers, or something else coincidently happening at the same time. He's actually at the Emergency Room as I write this, to rule out that it's nothing else....because he's been really miserable. We are wondering if it's a partial bowel blockage, something with some organ in there, OR just the fact that he feels like he's being kicked in the boxers repeatedly. We will keep you posted, but my guess it's not cause for major concern.
Tuesday morning was my retrieval. The procedure was smooth and successful. They collected 40 eggs, 27 of which were mature. I felt pretty good yesterday aside from the typical cramping and discomfort that everyone gets after a retrieval. My stomach has continued to get more distended, but it's actually a lot better than it has been the last 3, and I don't have any other symptoms of OHSS (rapid weight gain, shortness of breath, low urine output, etc). So I'm pretty pleased. I think I would be feeling a little better than I am now if I was able to just sit in bed, but because Ronnie and I are quite the pathetic duo, I have been taking on most the duties for Mckenna. Poor Mckenna has been forced to watch more movies in the last day than she has in the last year, but I'm pretty sure we didn't kill too many brain cells yet! Our dear friend was sweet enough to take her for a couple hours this morning while we met with our foster care agency worker (not ideal timing, but we gotta do what we gotta do), so at least she got to play with friends then. And then tonight I took her to Chick-Fil-A while Ronnie was at the Emergency Room, so she could run off some energy while I sat and rested. But pretty much we have laid on the couch all day, getting up only to use the potty or feed ourselves or Mckenna, and napped when she's slept.
We got the much anticipated call from our clinic this evening that 21 of the 27 mature eggs fertilized normally. We are really excited about those numbers. Our prayer is that God provides us with exactly the number of embryos He wants us to have, so we are trusting that today he wants us to have 21. We will get another update Friday.
I started the oh-so-wonderful twice-a-day Progesterone injections this morning. Thankfully the first week of them are never too bad because the soreness doesn't start until there's some oil build up. They also have me on progesterone lozenges 3 times a day. Currently, I'm also on all the dailies they want me taking (about 7 supplements, I'll do a blog all on it's own of all my meds), and heparin and prednisone for recurrent miscarriages. One quick note about the prednisone...I don't think I'm having noticeable side effects from it...so PRAISE JESUS.
We will keep you posted on how we are feeling tomorrow and what we find out about Ronnie's tummy troubles. I told him he can have a free pass on taking care of me while I recover from the retrieval as long as he's better by the transfer day, so I can lay low after it! Priorities!! Ha!
Thanks so much for being in this with us and covering us in prayers. So far, God has provided all that we've asked for!!
UPDATE FROM RONNIE: So it ended up only being severe constipation. I was in so much pain because my colon was full of BM from the entrance to the exit. It was also very enflamed and rubbing up on my other internal organs. I was actually having issues taking deep breaths, which is ultimately what led me to the ER. All of my other labs looked good, so they released me with a script for GoLytely. I was up until 4am letting the drink work it's magic and it continues to do the job well into today. I'm feeling much better with minimal pain when compared to yesterday. Still feeling a little backed up, so I'll take it easy with mostly liquids.
Thank you for your thoughts, prayers and concerns!
Prayer Requests:
- Thank God for how well our procedures went, how good we are feeling relative to what we could be feeling, and the great numbers so far.
- Our 21 little lives as they grow and develop that God works with them according to His will.
- Continued recovery that is quick!
- God starts revealing to Drew (our embryologist) which embryos he should choose to put back on day 5. He checks them again Friday and Sunday...have God guide his eyes, mind and heart to the two that should be used!
- Mckenna feels content and is understanding as stuff looks different around the house and the routine is different for the next few days.
Things are moving along swimmingly. Sunday night we did my trigger shot. Yesterday I had an ultrasound to double check that all looked good. My lining is perfect and my ovaries look about as full as can be! I then had a blood draw to check my Estradiol levels. We got a call that they are in the 3000s, which is high, but similar to what they were with Mckenna, and lower than they were for the pregnancy we miscarried. I was nervous they'd be too high, but they are exactly where they'd expect for the number of follicles I have, so we are all systems a go.
Ronnie, poor guy, had his TESA last night (Monday). I think this one hurt a little more than the previous two, and unfortunately seems to continue to hurt more than the other two. But he, of course, is a champ...and currently devouring several pounds of Long John Silvers (his post-TESA reward after each one...he hasn't had it any other time in our married life! Ha!) Some ice, rest, and good food should have him back up to snuff in no time.
I go in today (Tuesday morning) for my retrieval. I am a little nervous, but mainly just excited. The recovery after our first retrieval wasn't awesome, but the second two weren't bad at all. So I'm hopeful that the recovery will be like the last two and not the first one. Time will tell, and whatever the recovery looks like is so well worth it in the long run!
After that, we get updates on day 1, 3 and 5 to hear how we are looking in terms of embryos. And as the plan stands now, the transfer will be Sunday, day 5.
Prayer Requests:
- They find great sperm from Ronnie's fresh sample and the frozen sample from his last one they are also using.
- Ronnie's recovery is quick, and he's back to the gym in the next couple days.
- My retrieval goes well, and they retrieval a ton of great quality eggs.
- My recovery is easy and smooth, with little to no signs of OHSS.
- God guides the embryologist's hands in creating the embryos.
- Great updates on Day 1, 3 and 5
Thank you so, so much for the prayers. Our God is awesome in power!
As I'm sure many of you saw, last week, FOX premiered a new show called Red Band Society. It's a show described by the network as, "a provocative, unconventional and unique coming-of-age dramedy about a group of rule-bending friends and the adults who mentor them through the ups and downs of adolescence in Los Angeles' Ocean Park Hospital. Exploring everything from strong friendships and first loves, to humorous mishaps and heartbreaks, the series is a story of life, with an edgy comedic tone all its own." ...And one of the characters has CF. There has been mixed reviews about the show from people in the CF community (and I'm sure the other communities whose ailments are featured). I get the negative feedback. It's not totally realistic (come on, what TV shows are?!). Hospital rooms don't look like dorm rooms. That said, they could come close if you wanted them to. Ronnie has an entire snack table complete with a coffee maker and microwave; brings his own comforter, pillows and pillow cases, bath mat and towels; and usually brings a TV and game system. Patients maybe don't smoke pot in closets and have parties on the roof top. That said, Ronnie and I have date nights where we find hidden, secluded spots on the hospital grounds and have take out under the stars. We also "escape" and "sneak" over to the university campus to catch a glimpse at tailgaters, watch parts of football games, and eat lunch. And there may not be several inpatient friends to run wild with while in house (although in the old days they did), but the friendships depicted are based on something very real. It's a phenomenon that I think speaks to the beauty of mankind.
When you have something in common with someone, there's an immediate bond. I first noticed this when I lived in Asia as a tween. Surrounded by Asians, two caucasians always smile at each other. You know that that person is likely also an ex-pat; living abroad; in a foreign land. There's a familiarity, even though they could be nothing like you, and they are a total stranger. Fellow Christians, we do this all the time. As soon as we know someone else is a Christian, there's a common ground; an understanding. And when I started dating Ronnie and joined the CF community, I realized this is very much true in a "disease community"...especially in a rare disease community.
Fellow members of the CF community understand something about Ronnie and I that no one else can. You can watch a CF life from the outside, but you'll never grasp it like when you live it. Other friends or extended family can watch our life and know what it looks like. But they don't feel the same feelings. They've never had the same thoughts. They don't know the depths of our souls and the emotions that come with every day, and typical lifetime, decisions. That's the bond shown in the show. It's immediate. And very much real.
We have some dear friends, Mike and Sara...who we were blessed to spend yesterday with. Spending the day with them actually sparked this blog post. They are the type of friends we see a couple times a year, yet when we are together, we reveal parts of ourselves we don't share with others. We can sit down at a table and look up to realize it has been 6 hours. Mike and Sara understand parts of our life that other friends will never, ever grasp. Sara has CF. Sara and Ronnie understand each other in a way that I will never understand Ronnie. Mike and I understand each other in a way Ronnie will never understand me. We understand each other as a couple, and the dynamics that come along with being a CF couple, that will always make us "different" from other couples...yet eerily similar to each other. We are now all parents. We are raising children with CF parents. We understand decisions and possibilities in each others' lives that others don't even consider. Our kids, though they don't know it yet, will have a bond that will serve them well one day. They will understand each other in a way their peers will never get them. It's a powerful connection that we, as humans, desire, and need.
The show may not be accurate, but the principals it encourages me to embrace and remember, are awesome. First, to make the best of where we are in life. When Ronnie is inpatient, it is crucial to his survival (mentally) to make the best of it. And second, to cherish the bonds we have the opportunity to make as a result of illness. It really can be beautiful.
And just to end things on an adorable note: here are our two kiddos...they have no idea how dear their friendship will be to them in years to come!
Today was my last and final follicle check. There are tons of follicles (which we expected) growing nicely:
We are looking at around 15+ a side (the picture above shows just one view of one of the ovaries). Right now we are sitting at an average size of about 16mm, and he wants me to trigger around 20 vs 18mm (I guess they like to do it a little later to let any smaller ones catch up). With the most recent measurements, we got our official plan...YIPPEE!
I will trigger with 10,000 units of HCG on Sunday night at 9:45pm. This is to mature my eggs and tell my body it's time to ovulate. Then on Tuesday morning at 9:45am, they will take the eggs...exactly 36 hours after triggering. The body ovulates naturally 37-38 hours after it's told to, so they sneak in there and take them right before that time. This means Ronnie will get to dread his "contribution" another couple days, as they had him scheduled for today thinking I may have my retrieval Sunday or Monday, but they don't want his "contribution" sitting that many days. So his sperm aspiration will be Monday evening at 5:30pm instead of today.
With my egg retrieval being Tuesday morning at 9:45am, that makes our transfer Sunday at 11:00am. YIPPEE!!
One little catch in all of this is a blood draw I will have done Monday morning. They will look at my Estrogen (E2) levels. E2 levels that are high can be reflective of a body that is overstimulated. My E2 levels before retrieval are typically pretty high, but as long as they aren't much higher than they have been in the past, and as long as I am looking and feeling ok, we will be cleared to do a fresh transfer. If my E2 levels are WAY higher than normal, and I am experiencing many symptoms of OHSS, we will be forced to do a frozen transfer (which is not my preference at all).
....Let the games begin :)
Pray Requests:
- My body is stimulated just the right amount to get good quality eggs/embryos, but not enough that I'm overstimulated and our fresh cycle canceled.
- My Monday blood draw shows numbers that our doctor is comfortable with.
- Ronnie's procedure Monday is as painless as possible and that we get a ton of great sperm.
- That my retrieval is smooth, and we get the perfect number of great eggs!
- That my body continues to handle the meds well and that I continue to feel good leading up to and after retrieval.
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 the opportunity to do IVF again. I feel so blessed that we are able to do another fresh IVF cycle. We know that not everyone is fortunate enough to even do it once, and are just so thankful for the chance to try again to grow our family. I’m thankful for long naps. Mckenna isn’t a long napper. She naps, but has always been on the shorter side of normal for her age. Well the last two days she has taken 2 hour afternoon naps, and it’s glorious. It may just be 30 minutes longer than usual…but it’s AWESOME! I’m thankful for helpful parents. We have had to have my parents watch Mckenna in the evenings (having her sleep there all or part of the night) one night last week and one night this week, and it has been SOOO helpful! I always feel bad requesting help, but they are always so willing and go WAY above and beyond even what we need or ask.
Ronnie's List:
I'm thankful for a girl who is proud of her Daddy. This is probably very small to most peeps out there, but today at the gym, we were told to go and run a lap around the building to get our heart rate up. As I was running past the window to the children's play area, I saw Mckenna and two older girls cheering on all of the runners. When Mckenna saw me she started jumping up and down with a huge smile on her face and was cheering me on with every fiber of her being. I don't remember anything else from that lap, I was trying to figure out how to keep my melting heart inside of my body.
I'm thankful for a pin cushion for a wife. It's amazing the amount of injectable meds they put a woman on for an IVF cycle. It seems that every time I turn around Mandi is jabbing another needle into her stomach, thigh or booty. I so appreciate the sacarfice she is will to make for our family and I am so blessed to have married such a strong woman.
I'm thankful for candy corn...and now my stomach hurts.
This morning we had our follicles checked again to see how we were looking. We are sitting at most follicles at 10mm and 11mm, which means we will start our Antigon (to keep from ovulating) tomorrow morning. He is estimating around 25 eggs, but we will see when we get in there. They always seem to say lower than they come out with. But I'm hopeful they come out with "just" 25 as it would mean my chances from being way overstimulated would be less than if they had 40.
With the current growth trend, it looks like we will likely trigger Saturday or Sunday for a Monday or Tuesday retrieval - and most likely Sunday for Tuesday. I am eager for the retrieval, so I'm hoping we will get there earlier rather than later, but I am trying to tell myself perfection takes time ;-)
So far I am feeling really good on the meds. I've had some headaches and nausea off and on all day since we started the human growth hormone, but both are pretty mild and just make me feel a little off. I only started Progesterone yesterday morning, but I don't feel like I'm insane yet, so that's a plus! Ha!
We have another follicle check on Friday morning, so we will see how we are looking then.
Thanks so much for the prayers so far!! God is so good.
Prayer Requests
- My eggs continue to grow (quickly) and are great quality!
- Ronnie can gear up for his sperm aspiration happening FRIDAY (ouch)
- God is preparing my lining in a way that will hold a little baby(ies) for 9 months.
Yesterday was our first egg check after starting meds last week. It was cycle day 7, and I have scans Monday, Wednesday, and Friday. They do a scan to see where my follicles (which hold the eggs) are in terms of growth, how many follicles (and therefore eggs) they can expect, and how my lining looks.
They started with the lining. I have trouble getting lining that's thick enough when using a frozen protocol, but my lining is thick and plump on stim meds. It was measuring 8-9mm already! Holy moly. I'm a little nervous it will end up too thick, but she reassured me it was fine.
Then she went to the first ovary. As they rotate the wand, different follicles can be seen, each view they count what they see and measure some of them to get an idea of my average follicle size. And then they measure the biggest follicles because I need to start a med to keep me from ovulating when my biggest follicle reaches 12mm. It looked like this:
The picture isn't of a great shot, but I only have it because Mckenna requested a picture of the "peanuts I just ate"...so we happen to have the picture from the scan. Yes - I do tell her that we are looking at the snack I last ate. I usually am sure to eat peanuts, blueberries or grapes before a scan so she can help look for my snack.
Anyways, so then they go to the next ovary and do the same thing they did on the first side. I make so many eggs that they usually just measure a sampling and stop around 10 follicles a side.
It was a good visit. I'm excited to see how things are looking on Wednesday! Another little update is that I started taking the meds I need to take that helps prevent miscarriage. This means I have to add Heparin and 10mg of Prednisone to my current meds. I'm a little nervous about starting Prednisone as I know how it makes Ronnie feel and act, but they have reassured me that on that dose I should be ok. If anyone has any thoughts or experience on 10mg, please share them with me, so I can know what to expect. I will be on both the meds until 12 weeks, if we get pregnant. So potentially (and hopefully) 2.5 months-ish.
Prayer Requests
- Our follicles continue to grow as projected and that the eggs inside are GOOD quality.
- I have little to no symptoms from the Prednisone - AKA I don't become a crazy lady.
- My body doesn't get too overstimulated (I'm high risk for OHSS), so that we can do a fresh transfer.
- My lining is growing in a way that a little love (or two) will implant and stick around for 9 months.
It feels like I'm playing catch up a lot lately. Being on vacation for over a week can make for some interesting catching up when you get home...but it's always totally worth it, isn't it?!
Right now, I'm playing catch up on the blog...since we haven't posted since Wednesday. Ronnie was in California and North Carolina for work. He left Wednesday and got back yesterday afternoon. So, the blog didn't happen - although I assure you my Thankful Thursday post is sitting in his inbox, somewhere!
Last week was spent trying to play catch up at work, while trying to enjoy some "girl time" (as we chant) with my girl while Ronnie was gone. Mckenna and I had a lot of fun together, just the two of us. We didn't do much of anything special, but it was nice to be at home again, playing in her playroom and hitting up all of our normal spots.
The one addition to our routine last week, well, an old favorite that was recycled, was morning trips to the coffee shop. You may or may not recall, but Mckenna and I used to go get coffee EVERY morning at Paradise Bakery. We knew the ladies there. We know the other regulars. We stopped doing it because we were spending WAY too much money on a drink I could make at home, and they were giving Mckenna a tiny cookie every day, which is fine by me, except when she starts acting entitled to that cookie and being a bit rude/shy, but still expects a cookie. So we axed the trips. But with Ronnie gone and me limiting caffeine, we hit up the coffee shop. Side-bar: I know "me limiting caffeine" and starting to frequent a coffee shop seems backwards. But at home we have caffeinated beans in the coffee maker (pre-loaded). At the coffee shop, the coffee is out, and I can load my cup with almost all decaf, and add about a quarter cup of regular hazelnut coffee. Anyways, every morning Mckenna would get herself dressed, grab her babies, and push her babies in the stroller in the shop. Here she is sporting her "twins":
Mckenna seemed to really miss Ronnie at bedtime this trip...now, whether that's convenient because it gets some extra time and drags out bedtime or 100% genuine, I'll never know. But a lot of tears were shed at bedtime. This led to her sleeping with 2 of daddy's shirts by the end of the trip...because they smelled like him, so she could "cuddle him". It also led to a new phrase she comforts herself with, "daddy is always close to my heart." One night as she cried into his two dirty t-shirts, I told her that she didn't need to cry because since she loves daddy so much, and daddy loves her so much, no matter how far away his is, he is always close because he is always in her heart. The most precious thing is walking out of her room and hearing her audibly reassure herself that, "daddy is close to my heart."
.....I can't wait for the day she truly realizes this applies not only to her earthly daddy, but her heavenly Father as well. If knowing daddy is close makes her feel safe and happy, hopefully knowing DADDY is in her heart will make her feel that much more safe and happy. Here she is with daddy's stinky shirt:
All in all it was a good time just the two of us...oh, except Ronnie wasn't around help me out with shots, so I was on my own for three of these bad boys (see below) a day...I may break out in a cold sweat as I sit counting down to stick myself in the tush with that needle, but I get the job done.
We promised updates, so updates you'll get. Welcome to baby makin' world for the next 3 weeks ;-)
We met with our doctor yesterday to finalize the plan. We knew big topic of discussion and the decision to be made would be if we were doing a fresh transfer (take the eggs, fertilize them, and put them back 5 days later) or if we would freeze them all and do a frozen embryo transfer after 9 weeks of meds. I was anxious. Our clinic does almost ALL frozen cycles now and has great success with them. But in my heart of hearts, I feel my body does best with a fresh cycle. I was nervous the doctor wouldn't agree and that we would be forced to do a frozen - something that takes more time and isn't in my heart what I feel is best. He started the conversation, "what do I need to say to convince you not to do a fresh?" I gulped. I explained my position - even conceded that frozen transfers at his clinic have higher success rates. But I told him I just felt for me, based on our past successes and failures, a fresh was what my body needed. The conversation went on for a long while. But in the end, he said, "you know, this isn't actually a terrible plan. It's not the craziest thing you've brought me." Ha! I love our doctor. He will give you his opinion, but usually lets it fall back onto the patient. He also knows that Ronnie and I are informed, rational (well Ronnie is) people. So he allows us to help make decisions. In the end it was decided that we would do a fresh transfer as long as I am not showing any serious warning signs of severe OHSS being possible. OHSS is really the only (scary) side effect of IVF where you are so overstimulated that your ovaries leak fluids into your abdomen and chest cavity. The fluids settle all over in your body. It's uncomfortable and can (in really rare cases) lead to hospitalization and in even rarer cases death. I have had mild-moderate OHSS with each retrieval. It's not ideal, but there are worst things. I am not really worried about OHSS, but he, of course, needs to be. So as long as I am looking good, we are a go for a fresh transfer.
What does that mean? It means this could be a short process!!! YIPPEE!
I started meds around lunchtime yesterday. We had to wait for Aunt Flo to visit, she showed up, and we were off to the races. We started our first dose of Human Growth Hormone (no, I'm not 'roiding up for a body building competition! Ha!). We will stay on HGH for a first several days of the cycle. On cycle day 3, I start my two stim medications to grow tons of eggs - 4 amps of HMG in the morning and 4 amps of FSH in the evening. When my biggest follicle reaches 12mm, we will start Antigon (to keep me from ovulating on my own). Somewhere between cycle day 9 and 13, we will trigger with HCG to make me ovulate, and 36 hours later, they will take all my eggs.
The day before my egg retrieval, Ronnie will go in for a sperm aspiration...OUCH. We have frozen sperm left, but they feel fresh is always better, and my loving, dear, willing husband is happy to go in and have them take a fresh sample.
They will combine our baby batter the day they take my eggs and 5 days later we will put 2 back.
Because we have had 2 miscarriages at this point, in addition to being on progesterone post retrieval through 8-10 weeks (like most women are with IVF), I will also be on Heparin and low dose prednisone, in the hopes to preventing another miscarriage.
So there you have it. The full scoop up to this point. Our first scan will be Monday to see how my eggs are developing. We will keep you posted.
Prayer Requests
- Thank God for a perfect appointment with our doctor and a good ultrasound to make sure I was ready to start meds.
- Ask that my body responds well to the meds - making healthy, high-quality eggs, that will make healthy, high-quality embryos.
- Ask that God provides exactly the number of embryos that He wants our family to have.
We cannot thank everyone enough for the support we have received after yesterday's blog. We are so thankful for this community and the love and support you show our family. God is always good and He will provide!!
We haven't blogged about our journey to grow our family in awhile, so it's about time. As I said in our last post regarding our most recent miscarriage, we would keep you up to date, and well, I have slacked a little because there wasn't much going on to report. But now I write and with prayer requests!
I always said once we used through the frozen embryos we had, that would be it, we'd move on to something else. But our last two embryos didn't "stick" and the night we found that out, God presented an option to use two donated embryos. The door was open and so were our hearts, so we did the 9 weeks of medications, and did the transfer. Throughout that cycle I reverted back to my old thought process that if this one didn't work, I was done. I couldn't do it anymore. It was a lot on my body. It was a lot on our family...in every sense, mentally, physically, emotionally, and financially. We found out we were pregnant and within a week found out we had lost the pregnancy. It was hard. God revealed to us that we needed a bit of a break and that it was time to stop saying "we will do foster care once our family was complete." It became clear that we needed to follow His will in that area, even if it wasn't at a time we thought was "perfect", maybe especially because it wasn't a time that was our version of perfect. So we started the process to get licensed to foster, something that has always been on our hearts. We are currently in the throws of that process (currently taking the 10 weeks of required classes and almost have the house all ready for inspection).
...but we are also in the process of trying for another biological child. As we moved forward with the foster licensing, I just felt in my heart I wasn't ready to give up on carrying another child. I felt like us not trying again was me quitting because I was frustrated and tired, but not because that was what was right for our family. We met with our IVF doctor and he said something that hit me, "the easy part of my job is getting someone pregnant; the hard part is keeping a patient in the game long enough." He wasn't actually saying that getting me pregnant would be easy, but he was saying you have to play the odds sometimes. Sometimes it isn't easy, but if you stay in it long enough, you will get there. We have decided to go all the way back to the beginning. To take eggs and sperm and make more embryos. It seems a bit daunting, but we know in our hearts this is what is best for our family.
The last several cycles we have gone through "alone," in that, we haven't blogged them. We told a couple friends and a few family members, but we didn't want to burden others with the saga of it all, and honestly, we wanted to be able to surprise friends and family. But failed cycle after failed cycle, God began to reveal something to me. I have racked my brain reflecting on what was different with Mckenna verses our other cycles. I have tried to model that cycle when possible. But God kept putting it on my heart that the biggest difference, and maybe the only difference that matters, was prayer. With Mckenna, we blogged everything and everyone praying with us. The other cycles, our prayers went up alone. We believe whole-heartedly in the power of prayer, and so we will be blogging this cycle, and asking (read: begging) for you to join us in prayer.
We are doing two weeks of meds (which is the shortest protocol we've ever done..HUGE BLESSING!!!) before they go in and retrieve eggs. We start the meds cycle day one (men: cover your ears...that means whenever my period starts), which will be any day now. We meet with our doctor this morning to finalize the plan. Then it's showtime. We will post specific prayer requests over the next couple weeks, please join us in raising this process up...after all, doctors don't make babies, God makes babies!
Prayer Requests
- Today's appointment goes well, and we make the right decisions about the cycle
- My body responds well to the meds, and we get a lot of high quality eggs, sperm and embryos
- We are pregnant by the end of the year...sometimes you just gotta make the ask ;-)
- God blesses our family abundantly with lots and lots of babies through IVF and foster care!
Believe it or not, Team Sharpe is alive and well. We went on a little family getaway, and well, we left the blog behind.
My parents, Uncle Brad, my brother and sister-in-law, Ronnie, Mckenna and I all went to Maui for a fun-filled family trip. I have to say, I think it was one of my favorite family trips of all time. It was full of quality time together, amazing sunsets, ocean views, and massive amounts of food.
Mornings included a run with amazing views, but lots of hills; time by the pool or at the beach; and some kind of adventure. Afternoons were spent napping; time by the pool or at the beach; and dinner together. We did some fun half day trips to a blow hole, zip lining, fishing, and paddle boarding.
The thing I like best about family vacations is that it gives us the opportunity to spend time with my family that is uninterrupted by real life. We all live in the same town and see each other every week, but a few hours here and there just isn't the same as living under the same roof for a week. I am so thankful for a family who actually enjoys time together and for the opportunity to reconnect on a different level a couple times a year.
My favorite things from this trip were time spent with Ronnie and Mckenna in the pool and on the beach, running in the mornings with my mom or dad, and snuggling with Mckenna in bed at night (something we don't do at home, but on vacation can explain away to keep it from becoming a habit). And most of all, my favorite memory above all others was sitting on the porch in the mornings, watching the dawn turn into day, listening to the ocean, and one by one having family members wake up and join Mckenna and I on the porch.
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 motivation. This weekend and the first half of the week I’ve been in a get ‘er done mood. It was a bit of a “if you give a mouse a cookie” situation happening, but I got so much rearranging, organization, and to dos checked off the to do list. I’m thankful for heart rate monitors. It is so fun to see what your heart is doing when you really push yourself…but probably just because I’m a nerd. I’m thankful for our foster classes (PS Mapp) instructors. They are great teachers, good people, and knowledgeable. We couldn’t ask for much more!
Ronnie's List:
I'm thankful for Mckenna's "coffee". Mckenna sees me drinking coffee almost all day long. So lately, she's been asking if she can have coffee. I've been telling her that only daddies and mommies can have coffee, and that has usually squelched the ask. Yesterday, she asked for coffee in about the sweetest way possible, "because I want to snuggle you and drink coffee like Daddy". I had to figure out a solution. So, I put hot water in an espresso mug, put a drop of Nestle chocolate syrup and a splash of milk. It looks almost exactly like my coffee and it's hot, so she's all about it! I think she had 3 cups yesterday :)
I'm thankful for bunk beds. We recently set up a bunk bed in Mckenna's room and it is possibly one of the cutest things of all time. We have some exciting things planned for it, but for now, it's an unpainted bunk bed from IKEA. Mckenna loves it and has "slept like a big girl" since using it!
I'm thankful for snuggles. Yesterday, when Mckenna got up for her nap, I went into her room and asked her if she wanted to snuggle. She said yes so I climbed into her bunk bed and she wrapped her arms around my neck and fell back asleep. Besides her dragon breath blowing in my face, it was wonderful :)
Today at the gym, we did something that I've never done before, that I hope to do again, but will hate as much as I hated it the first time!
It's simple, yet a butt kicker.
The key to this workout is that you have to push yourself. If it's a casual stroll in the park, you won't get nearly as much cardio and lung benefit as you would if you give it your all.
We had 10 minutes to complete the following on a treadmill:
Run .5 miles at a 1% incline Get off the treadmill and do 10 jump-squats Run .25 miles at a 3% incline Get off the treadmill and do 10 jump-squats Run .25 miles at a 6% incline Get off the treadmill and do 10 jump-squats Run .25 miles at a 9% incline Get off the treadmill and do 10 jump-squats
My 10 minutes ran out right after I completed the .25 miles at 6%. I actually like the fact that I did not complete the task today as that gives me a goal and motivation for next time.
For the most part, I try to eat clean. There are some deviations here and there, but when I'm trying to put myself in the best position to succeed with either my health, muscle building, fat loss or performance, I've found that eating as clean as possible really helps. With that said, I love to eat! I'm pretty disciplined by nature, but overeating and eating stuff that may be good for weight gain but not for the rest of my body systems in general, has been something engrained in me since birth. (The idea of calories at all costs is another blog for another day!) Many of the things that I like to eat are far from clean (think candy, birthday cake, sugary cereals, taquitos from Costco, pizza pockets, and the list could go on and on) and the only way to keep myself on the up and up with a "clean lifestyle" is to find clean foods that satiate me in the same ways as stuff on the not-to-eat list. 1. Eggs 5 fun facts about eggs (www.incredibleegg.org):
The incredible edible egg™ has a high nutrient density because it provides a wide range of nutrients in proportion to its calorie count (about 70 calories per Large egg). Nutrient-dense foods help you get the nutrients you need without excess calories.
A Large-sized egg supplies 12.6% of the Daily Reference Value (DRV) for protein. A little over half of the egg’s protein is in the white and the rest is in the yolk. The egg’s protein is the highest quality protein of any food. One egg of any size equals one ounce of lean meat, poultry, fish or seafood in the food groups.
Egg protein is both high in quality and low in cost. It’s easy to compare the price of eggs to the price of other protein foods. A dozen Large eggs weigh 1 1/2 pounds, so the price per pound of Large eggs is two-thirds of the price per dozen. For example, if Large eggs cost 90¢ per dozen, they cost 60¢ per pound. At $1.20 per dozen, Large eggs are only 80¢ per pound.
To tell if an egg is raw or hard-boiled, spin it. Because the liquids have set into a solid, a hard-boiled egg will easily spin. The moving liquids in a raw egg will cause it to wobble.
Each of the roughly 280 million laying birds in the U.S. produces from 250 to 300 eggs a year. In total, the U.S. produces about 75 billion eggs a year, about 10% of the world supply.
How much I eat:
At a minimum, I eat 2 eggs over-easy or over-medium with 1 cup of egg whites to start off every day. Then, it's not uncommon for me to eat 2 hard-boiled eggs for a snack at some point during the day and I often have a 1-cup egg white omelet or scramble for dinner. Thank goodness that Costco sells all of the above in bulk! Why I like them:
I love how versatile eggs are! You can prepare them a variety of ways and they seem to be a great base for so many different meals. I also like the fact that they are mostly made up of a slow-release protein that fuels muscle repair throughout the day or night. 2. Roasted Vegetables Fun facts about vegetables:
Asparagus - Everyone makes "asparagus pee," but not everyone can smell it. (http://modernfarmer.com)
Cauliflower - Cauliflower contains a wealth of anti-inflammatory nutrients to help keep inflammation in check, including indole-3-carbinol or I3C, an anti-inflammatory compound that may operate at the genetic level to help prevent the inflammatory responses at its foundational level. (http://www.whfoods.com)
Bell Peppers - Traditional Chinise Medicine(TCM) uses bell peppers as a natural treatment for certain medical conditionsrelating to digestive issues and blood circulation such as indigestion, loss of appetite, swelling frostbite(Injury or destruction of skin and underlying tissue) and stagnation. (http://durablehealth.net)
Broccoli - Broccoli is high in fiber. Not only in soluble fiber but insoluble as well. Since your body needs both types, it's great to know that broccoli is can fulfill both your needs. (http://www.mindbodygreen.com)
Corn - An ear or cob of corn is actually part of the flower and an individual kernel is a seed.
How much I eat: I highlighted the five vegetables (well, bell peppers are actually fruits) above because those are what I eat most often. In fact, they are listed in probably the quantity in which I consume them. It's common for me to have at least 10 stalks of asparagus and 1 cup of cauliflower with both lunch and dinner. Lately, I've been adding a cup of bell peppers to lunch and dinner as well. I used to eat more broccoli, but I've been on a cauliflower kick lately and I buy a 8-pack of corn every two weeks or so. Why I like them: I like that I can load up on vegetables to feel full, but not over do it on calories. I also like the texture of most roasted vegetables and love experimenting with different hebs, marinades, etc to roast them with. 3. Cholula
Fun facts about Cholula (www.cholula.com):
It is named after "Cholula", the oldest inhabited city in Central America. It is a 2,500 year old city in Mexico and famous for its 365 churches. The term Cholula is derived from the pre-Hispanic word "Chollollan" meaning "the place of retreat".
Cholula delivers a palatable 1,000 Scoville units
Cholula Hot Sauce is made in Chapala, which is a one hour drive from the city of Guadalajara, a five hour drive from Mexico City, a four hour flight from Los Angeles, 1,000 miles from Dallas, TX and a long way from New York City.
Cholula has been in existence for at least three generations; it has been commercially available in the United States for over 20 years.
How much I eat: I am very generous with my Cholula because I like "heat" and it is zero calories. I add it to my eggs most mornings, cauliflower or broccoli, chicken or turkey and sometimes, my salads.
Why I like them: I like spicy food, but not spicy to the point that it's not enjoyable to eat. Cholula for me is the perfect balance of heat and flavor. It makes bland things better and flavorful things even more flavorful.
4. Frozen Fruit
Fun facts about (frozen) fruit(http://www.lifehack.org/articles/lifestyle/20-incredible-facts-about-eating-fruits-and-vegetables-that-you-probably-didnt-know.html):
Pineapples can destroy your taste buds.
Apples can give you more energy than coffee.
Grapefruits are a horrible idea if you take certain medications (list here).
Bananas are technically herbs.
Studies by the FDA have confirmed that any decrease in nutrition from freezing fruits is negligible at best.
How much I eat: How much eat depends on whether it's a high carb day or a low carb day. I've been doing more and more low carb days lately, so my fruit intake has been less. With that said, when I do eat fruit, I do it right! For dessert on my high carb days I make "ice cream" out of only frozen fruit in my Vitamix. I have a concoction, made of frozen pineapple, mango and cherries, that tastes a lot like my favorite ice cream, Rainbow Sherbet!! I also drizzle (or pour) some honey on it to bring out the sweetness.
Why I like it: I have a sweet tooth and this not only helps with that, but it does wonders for my post-dinner before bed snacking habit. I use a small spoon to eat it so I can enjoy for as long as possible, and I'm positive that eating it on some nights has kept me away from snacking on dry sugary cereal (another favorite of mine!).
5. Honey
Fun facts about honey(http://honeything.com http://honey.glorybee.com):
Honey stored in air tight containers never spoils. Sealed honey vats found in King Tut's tomb still contained edible honey, despite over 2,000 years beneath the sands.
Two tablespoons of honey would fuel a honey bee flying once around the world.
German peasants were required to give their feudal lords a payment of honey and beeswax
Honey is the ONLY food source produced by an insect that humans eat
Honey is much more than just a simple sugar. Rich in minerals and nutrients, honey also has some antibiotic properties that may aid in the healing process.
How much I eat: As mentioned above, I often (and by often I mean always) put honey all over my frozen fruit ice cream. This could be anywhere from 2 tablespoons to a 1/4 cup! I get raw honey from my mom (who works at a farm) or the purest form of honey at stores. I probably shouldn't eat as much as I do, but it keeps my away from refined sugars.
Why I like it:
I love how the honey gets hardened by the frozen fruit ice cream and as mentioned above, I love its sweetness!! I could actually eat spoonfuls of just honey and I have been known to stick a spoon full of peanut butter into a raw honey jar and eat it as a snack. Honorable mention
Any kind of dehydrated meat!! Such a great source of protein that is easy to grab and go! I know, I know, to come clean eating enthusiasts out there this list may not fall under 100% clean eating, but I decided that if I was going to eat healthy, it would have to be a lifestyle and not a fad. I show myself grace daily by choosing to eat healthy food that is satisfying, but not necessarily "by-the-book clean". I also show myself grace on special occasions like camping (s'mores!) and occasionally, birthdays or other events (cake!). NOTE: I realize that for some who read this blog, every calorie counts. If you'd like ideas on some high calorie, "clean eating" foods or recipes, please let me know!
We are those people who have a "living room" that doesn't get lived in. It was a furniture and dust collector. It looked nice as you walked by, but our dog is the only one who used it! So we decided it was time to put the room to use...even though it means guests potentially walk by a pigsty as they enter our home. We have talked about moving the playroom from the bedroom where it currently is to the living room for months...in fact, every IVF cycle we would be sure we would get pregnant and need that bedroom for a nursery. Well, 1.5 years later, and we decided that baby or no baby, we were using the room. I should mention, that we are in the process of getting our foster care license, so we will need that room at some point semi-soon-ish, but not today.
Well yesterday I got the itch. I decided to just go for it and started moving furniture out of the room while Ronnie did his morning treatments. Mckenna carried the decorative items (you haven't lived til you watch a 2.5 year old carry a glass vase...it's like a game of russian roulette...and I'm certain really safe! Ha!) And I moved the furniture. I figure I workout for a reason, I was determined to do it by myself. Thankfully, the couch was staying in there, or it would have been a feat I couldn't conquer.
We went to Ikea and got a couple of shelves and baskets after church. And the I spent Mckenna's nap hurriedly moving toys, books, etc from the old playroom to the new. I used the switch as an opportunity to reorganize the bins and pitch the broken toys. I knew I better pitch during nap to keep from being argued with over every discard...and I was right on, Mckenna did dig a "needed" toy out of the trash.
After a long day of moving, we have made the switch, and Mckenna is in heaven.
...and that is probably the last time we will see the floor ;-)
I am thrilled it's finally done. I am not so thrilled that the rest of our house now looks like a furniture store because I just moved out the living room, but have yet to absorb the stuff elsewhere...eh, that's for another time!
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 the ALS Ice Bucket Challenge. What a delightful way to raise funds for a cause. I know some people love it and some people hate it, but I say, if you’re raising funds and awareness through something fun, you’re doing something right. I also know there’s been talk of starting one (in some form) within the CF community, but I think us rare disease communities need to stick together. It’s their time to shine!! I’m thankful for the generosity and fun-spirit being shown through the campaign and the millions raised! I’m thankful that “our disease” is CF. Go with me on this one for a minute. We often see our challenges as huge. CF is a gnarly disease. There is a lot of headaches and heartbreaks that it causes. But when I read about ALS and watch videos of people with ALS my heart breaks, and I can’t help but feel blessed that our family’s disease is just CF. It really puts our daily struggles in perspective! I’m thankful for a kind and loving daughter. Tuesday when we picked Mckenna up from school we got the report that she wasn’t a good listener while there. We did all the typical parent things: talked to her about her behavior, coached her up before school today, I even created a good listening sticker chart for some good old positive reinforcement. Well when we went to pick her up today, I stopped at the front desk (where the timeout chair is located) and asked if Mckenna had visited today. I found out she had not, but that the receptionist actually secretly loves when she does because she’s “a doll” and “so sweet". On the way out the door, we happened to see the school’s owner and director and chatted a minute. She proceeded to tell us how loving and friendly Mckenna is to everyone…not a bad reputation for being a month in. As a mom, my heart broke to hear she was naughty earlier in the week by not listening (and even requesting timeout…that little control monger)…something the teacher had mentioned another time or two in the past. Of course my mommy-side kicks in. I worry about how she will do in school. I picture what it would be like if she was the dreaded kid in a class. I understand that that’s all a little premature, but I’m a mom, so I worry! Ha! But man am I thankful for the feedback we received today. If Mckenna is strong-willed and not a great listener from time to time, but is ultimately known for being loving, kind and friendly to everyone, I will feel pretty good about the human she’s become :)
Ronnie's List:
I'm thankful for beef jerky. I've been focused on eating more protein lately and you can pack quite a bit of protein without an absurd amount of calories with dried meat. I like that I can pick at it and also let it set in my mouth to really taste the flavor. Actually, when I eat it, it kind of looks like I'm chewing tobacco because I often store it in my lower lip!
I'm thankful for YouTube. Mckenna has something called "Wee Worship" at her school that she absolutely loves. They direct the school through interactive worship songs and most of the kid seem to really enjoy it. She enjoys it so much, that she requests to sing the same songs at home and do all of the hand motions. Mommy and Daddy do not know the lyrics, music or the hand movements. YouTube has us covered!! Mckenna has enjoyed "practicing" her singing voice in the comfort of her own home lately.
I'm thankful for Pocket. I'm not a big book reader, but I do like reading articles. I often come across articles that look very interesting, but don't have the time to read them when I see them. Pocket allows me to push a button that saves the article to one central place and even lets me access it without internet or phone service available! I generally hammer through as many articles as I can when I'm trying to wind down for bed. Pocket makes it easy.