Thursday, February 24, 2011

Thankful Thursday - This one is pretty obvious

Know what time it is? It's thankful Thursday time! We checked into the Hole one week ago and it's time to celebrate a little thankful Thursday! 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. as I mentioned last week, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm SO thankful that my God is one that is faithful and answers prayers. We have been praying that He would guide us through our IVF process, and man did He come through big time. A smooth diagnostic period, Ronnie having swimmers, and good little swimmers to boot, just the right number of embryos, and pregnant the first cycle. I am so thankful that this process isn't in my control (holy smokes, did you just hear this type A actually say that?!) and that I have a God who is so good, who's guiding this! I am so thankful to be blessed with this baby/these babies!!

I'm thankful for butt rubs. Any lady that has ever done progesterone shots (or anyone who has had oil-based shots before) knows what I'm talking about. Those suckers start to leave a lasting impressions after a few weeks worth. My butt has bit lumps and bumps of oil trapped (and some gnarly bruises) and it feels like heaven to have my loving hubby rub my sore spots to get some of the oil broken down and out of there.

I'm thankful for coffee. Gasp. "You're drinking coffee?!" you're thinking. No. I am not. And that is why I'm thankful for it. I miss it like mad right about now. As many of you know, weekend mornings while Ronnie is in the hospital are Dunkin Donuts mornings. And the smell of coffee in the morning makes my heart happy. Unfortunately I can't partake, but you better believe I'm going to pound the coffee in approximately 9 months. I am so thankful for this tasty drink. Have an extra cup for me this morning!!

I'm thankful for hospital stays. The hospital is always a nice time for Ronnie and I to relax together and hang out with his family. Sure we still work, and we can get a little cabin fever, but I always enjoy the quality time that hospital stays bring. I'm thankful for hospital traditions and fun experiences. We always leave with many, many good memories and some funny stories. I'm thankful that we can enjoy each other, and life, anywhere.

Ronnie's List:

I guess my first one's a little obvious, but I'm really thankful that were pregnant! We're approaching this cautiously optimistic as we know nothing is for sure until were holding our baby (or babies) in our arms, but for now we're just in the celebrate this miracle. We heard all along that this would be quite the journey and I'm just so thankful that our road was pretty smooth. I don't think it could have gone any better and we're just praying that in nine months or so the Sharpe clan gets a bit bigger! We can't thank you enough for your thoughts and prayers, we literally felt every single one of them.

I'm so thankful for the research teams out there working their butt off to make the lives of my friends so much better. As I'm sure you've heard, the pharmaceutical company Vertex just announced very positive results from their phase 3 drug study of the compound VX770. This little blue pill did very well and we're all excited for the future. It is shown to increase lung function, decrease exacerbations, increase weight and a host of other positive things simply by opening up the chloride channel on our cells. Now, I must point out that this drug is for a specific mutation that effects about 4% of our population, but they're very optimistic that this is the start to something great for the entire community! I'm super excited for my friends with the G551D mutation and I can't wait until this drug is released in 2012. Let's keep our fingers crossed that the FDA gets on the ball and approves this thing.

I'm thankful that after a week in the Hole I've turned the corner and improving bit by bit everyday. You never quite know how things are going here, but I'm confident I have nowhere but up! I'm going to start testing my lungs pretty soon here by running laps from a hospital and sprinting up the staircase. I'm hoping not spring a leak aka hemoptysis aka my lungs bleeding, but I figure there's no better place to do it than in here. I'll be taking PFTs on Monday and I'm very hopeful that they'll be up from a week ago. I checked in here with an FEV1 of about 60% and I'm hoping that by the time I'm out it will be in the lower 70s. Maybe I'll even shoot for 75%! Sure wouldn't hurt to try.

Comments (10)

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Where is your linky thing?? I wanted to link my THANKFUL THURSDAY!
1 reply · active 736 weeks ago
My subscription expired and I think it's something I would have to pay for. I'm trying to track down a free one :)
Nicole Frame's avatar

Nicole Frame · 736 weeks ago

I just wanted to say CONGRATULATIONS to you both!!!! I was away on vacation and came straight on here when I got home to see your results!! Gets me thinking maybe IVF is the way to go ..
I am so happy for you and will continue to pray that everything goes smoothly for the next 9 months!!
Ali Martin's avatar

Ali Martin · 736 weeks ago

So happy for you two! Congrats....such an amazing experience (both pregnancy AND parenthood!) You guys will be the most amazing parents!
Frances Johnson's avatar

Frances Johnson · 736 weeks ago

First congrats to both of you! I am so excited for both of you.
Now for my thankful Thursday....First I'm thankful for doctors that listen to parents. Matthew's lung function has been a roller coaster for the last few months and he has felt bad more often than good. SOOO I tomorrow at 6:00 am we go in for a bronch and another tune-up.
I am thankful for friends and family that jump in and help when we are going through though times.The ones that do little things like remind me to smile, give me a hug or hold my hand and even the prayers that I know they will say. All of it means so much to me.
I am so happy for you both. When do you have your next Beta test? Isn't the higher number a good indication that there could possibly be more than one, or even two? I can just feel the happiness through the computer. Often times when reading posts or comments you are not always sure that you are truly reading into the message correctly but there was no doubt what you wanted to say, and what you did say, and what I got out of the last few posts. I am thrilled. You two are very lucky to not only have each other but to be beginning to have your family. I have a few questions that I hope you don't mind me asking? Please forgive me if they come across rude, that is not my intention. And if you don't want to answer them, don't (not like I have to tell you that). LOL! Part 1 of 2
3 replies · active 736 weeks ago
Comment was too long so here is Part 2 of 2

1. How about decaf coffee, Mandi? I can tell the difference; well I take that back, my body can tell the difference. I had someone try to pass of "leaded" coffee to me one day and within 30 minutes I was vomiting and rolling on the floor because I had such a bad migraine. The person who gave it too me knew from what I had said that it was a trigger but I guess didn't believe me until she had to call 911, and watch me be transported and admitted to "The Hole (LOL)!" I think the hardest part was having to call me father and telling him what she had done.

2. What are the chances of having a baby with CF? Or by doing the IVF do you eliminate that possibility?

3. Do you two tele-commute for work? It seems like you have a lot of flexibility when Ronnie is in the hold?

I will continue to pray for you!
I'll try my best to answer these questions :)

Decaf coffee still has a little bit of caffeine in it and Mandi is a trying to avoid caffeine as much as she can. She's already gotten through the withdrawal phase and she is trying to stick it out!

We have a very very very very small chance of having a kid with CF. Mandi got tested for the CF gene by Ambry genetics which tests for the 1600 known mutations. If Mandi was a carrier of the gene we would've gone a completely different route.

Mandi is able to telecommute for work and actually has an office near the hospital that I stay at. We've definitely been blessed with our work situations.

Thanks for the prayers.
To answer your question about our beta test - our doctor just does one if the first number is solid. A really high number can be an indication that there may be two babies, but you never can really tell. The HCG range for week 4 (the one we had) is 5-430. As you can see, by that range, our number is actually on the lower side. Twins can give beta numbers in that range as well. So you can't tell too much by a beta.

We don't have another beta test (our doctor said we didn't need one, if we wanted one we could, but he didn't think it was necessary). We just scheduled an ultrasound for March 14th. I guess our doctor feels like if you can't tell that much from betas, why continue to make your patient pay for them? Doesn't change anything if you know those numbers and you have a better idea of the viability and health of the pregnancy from the first ultrasound.
AAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHH! Congrats!!!!!!!!!!!!! Positive pregnancy tests are the BEST!!!!!!!!!!!!!!!! Especially after years of wondering, dreaming, hoping. Can I possibly use more exclamation points!?!?!?!? I don't think so!!!!!!!!!!!!
Ok, so ridiculously excited for you both. I know it's super early on and so many things can happen, but what a joy to share with each other on this journey. And slightly ironic that you are reading the test on the edge of the sink at UMC (I know those doors and sinks!). I look forward to reading 9 more months of updates, followed by an abrupt decline in blog posts as you face sleepness nights filled with the perfect cries of your mini-Mandi or mini-Ronnie (or BOTH!).
Hugs to you both and wishes for a strong tune-up.
Love, Liz M.
fellow CF wife and mother to a 2 year old CF-free daughter

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