Clarity

 Clarity

4 days before Christmas and Nick has another transplant appointment tomorrow.We have been going to Gainesville every 6 months for what seems like forever. Tomorrow's appointment is A little different as we Should get to  know weather or they think its time to start the actual evaluation process. I know this is wrong but I am just ready for this part to be over. Deep inside I hope they tell us that he should start the process.

Deep inside I have these horrible thoughts of "what if"

I keep telling myself that if he is at least finished with this step then we are one step closer to the next.

I keep thinking we are going to miss out on something and it is going to be too late.

 I wish that I had someone tell me that these jumbled most random thoughts were normal.....

Anyways..Better thoughts tomorrow as I must put on my "Positive Pants" Ha :)

Photo love

Several months ago I came across this photographers face book page and fell in love, This lady has got some  mad talent yall. Then about A month ago while Nick was in the hospital I was checking her face book page to drool over her pictures when I came across her photo album called heart gallery. What's A heart gallery?  It is A gallery of pictures of children who need me,you or anyone who would take them into their home and love them as yours. It is A gallery of photos of all the children who need to be adopted in Florida. 

I have blogged several times about the longing to become A mother,parents and what direction Nick and I will take to get there. When I came across her heart gallery album and came across these beautiful faces my heart melted when I came to A certain photo of A young man. I commented on the photo and Jamie ( The photographer) began to correspond and I sent her the link to my blog. Jamie read my bucket list and how I wanted to take A photography class. She then wrote me and said she would love to have me at one of her photography classes and would love to do A session for Nick and I.As if that wasn't amazing enough she said that when Nick and I do adopt she would do A session for our family. 

How crazy is that? Just another random act of kindness...Cant wait to pay it forward.

Here are some of the amazing shots please be sure to head over to J.Halstead photography

Random Acts Of Kindness

I am so excited to talk about this because it is something I am so passionate about.Lately Nick and I have been blessed in so many ways by random acts of kindness. It is something so small that makes such A big difference.With the holidays coming up I am challenging everyone to think about someone else. I think as A culture we have become so consumed in ourselves that we forget what doing something nice can do for another person. 

The other night Nick and I were at olive garden and we went to pay for our meal when the waiter told us that someone had already paid for our dinner.It was so crazy that someone else would do that for us.It was so much fun to pay it forward and send several couples and families dessert that night. Its A win win situation people for them,for you,for the world.

With that being said here are some random acts of kindness you can give A try...

• Taping candy canes to ATM machines around town
• Bring your child's teacher or coach something sweet...Randomly not for A holiday 
• Taping quarters to vending and toy machines around town
• Grocery shopping for the sole purpose of putting it in the “Food for Families” box in the entryway of the store
• Plugging meters around town 
• Pay for the persons coffee behind you in the drivethrough line
• Handing out Starbucks gift cards {$5.00 value each}

Follow Up

Hey beautiful people, I hope everyone is ready to get the eat on and enjoy all the festivities. I have been meaning to play catch up and let everyone know what has been going down since Nick got out of the hospital.So here goes....

When Nick was in they found out he was growing some nasty mold called aspergillus ( spelling?). It was some pretty nasty stuff and is what we think got Nick feeling so bad. While he was in there they put him on A REALLY strong antibiotic.Now that he is out of the hospital he will have to continue on this antibiotic for up to 6 months. It is so strong that he has to go and get regular blood work done,Poor thing. On A good note he is feeling so much better and seems to have way more energy.

The Dr. did tell Nick that they pretty much wanted him to use oxygen full time now.When he is relaxing at the house it is not needed but while out and about its A must. This is where things get ugly, See Nick is pretty stubborn just like any man really. He is having A hard time getting use to carrying the oxygen around with him (rightfully so) but I think he is also realizing its A must and it is just hurting him not to use it. He had his follow up Dr.appointment today and his weight was up A little but lung functions were the same.

On another note Nick and I will be heading down to Destin Florida for my cousins wedding this weekend. We are so excited to be able to make it and celebrate with them. It is going to be great because this is the first time in A couple of years that all of our family will be together.We also just celebrated our 4 year wedding anniversary and I am more in love with this handsome hunk of A man than ever before. He completely balances me out and I am beyond thankful to have him as my forever.

Day 12 in the hole

Happy Friday everyone!!! Here we are on day 12 in the hospital with only 3 more days to go. Nick was suppose to go home this past Wednesday  but it didn't seem to happen that way. Monday morning Nicks Dr. came in and told us that his big green loogie  sputum culture was growing aspergillus which is A type of mold and MRSA in his lungs. It kind of explained why Nicks lung function went down so fast,So they have been treating him with more iv antibiotics.

The medicine that they put him on to treat the crazy stuff growing in his lung is pretty strong stuff. Once in A blue moon Nick will have A panic attack at night,He woke up the other night having what I thought was A panic attack. He said he kept seeing bright lights and could see himself (pretty freaky stuff) which he has NEVER had in A panic attack before. After he spoke to his Dr. the next morning she told him that it is very rare but one of the meds he is on causes A side effect of hallucinations. As if he does not have enough going on already,Thankfully he has not had another episode again.

They still gave him the opportunity to go home Wednesday but he decided that he wanted to just finish out his ivs here at the hospital.I couldn't have agreed anymore,As much as I would rather be at home in my bed it just works out better. He can get the rest he needs because he is forced to just relax. So his run with ivs will be up on Monday and hopefully we will get to head home.Nick is feeling a lot better and seems to be able to walk A little further,Take A shower and get dressed without getting so out of breath.

Be thankful

Day one in the hole

Yesterday at around 3:00 Nick got checked in and to our new home away from home.When they came to the room to check his vitals his oxygen was at 86 and he had lost 10 pounds.Lets just say Nick was A little upset about that and was pretty discouraged.I had to be to work this morning at 10:00 this morning and was so sad,I just wanted to stay up there with Nick.When I got up to the hospital this evening he was singing to A different tune.The Dr.some blood drawn to check his nutrition levels due to the weight loss and was surprised to see that everything was good.

The Dr. told him that he is such a perfect candidate for A double lung transplant because he does not have any other CF related issues....Its just his lungs. We are taking it one day at A time and besides me showing up to work looking like A zombie today we are doing good.

Thankful for another day!!!! 

P.S. If you would like Nicks room number,Phone number or the address just send me A e-mail or A face book message

I want to go into the hospital

Happy Thursday yall!!! I hope everyone is having A great week and enjoying this beautiful weather.Nick and I have been laying low lately and just delaying the inevitable.Last week Nick and I were relaxing catching up our dvr when he said "I'm ready to go into the hospital" ..Nick does not like going into the hospital and avoids it at all cost. When I heard him say that I knew he was really not feeling well.

On Tuesday Nick had A Dr.s appointment where they decided that it would be best that Nick goes into the hospital for some good ol' Iv antibiotics. Usually when Nick goes on IVs he does them at home where he has to get up every so many hours to change IVS and just does not get the rest he needs. From now on he will be going into the hospital so that he can rest,They come in and hook up for him,makes sure he gets the air clearance that he needs and brings everything to him. I like it too because I still have to go to work and I don't worry about him as much.

Nicks birthday is Sunday night he is going to be 26!!! WOW how amazing is that considering he was not suppose to see his 15th birthday. I am so proud of him and where he is today the unfortunate thing about CF is you can do everything right and still this nasty disease shows its face and things progress. I cant help but think to myself "Could this be his last birthday before the big transplant". We still have no plans for Nicks birthday he is kind of indecisive on what he would like to do,So we will see.

The other day I had A little meltdown,This has been one of the hardest things I have ever had to do. There are days that it is just unbearable to know that he cant breathe and the simplest things seem impossible for him.Then I found out that A co worker was just diagnosed with stage four colon cancer and today found out it has spread to her lungs.There is also another co worker that I talk with often and her husband has been battling cancer for years and is in the middle of aggressive therapy. So just when I think that everything is falling apart God gives me A little dose of reality that it could always be worse and to be thankful for today.

As you guys finish up your work week and head into the weekend keep that in mind. It could always be worse no matter what the situation you are in and to be thankful for today. Have A great weekend yall!! Below are pictures from when we went to the fair last week,This is my favorite time of the year .

Happy Fall Yall

HAPPY FALL YALL!!!!

I hope everyone is kicking off the fall season with lots of fun,football and of course decorating. I have had so  much fun decorating the house. I'm most defiantly one of those decorate for EVERY holiday kinda girls.In the last post I mentioned that Nick and I would be leasing out A spot in A antique store to sell stuff. We are so blessed yall, Knock on wood it has been going really well and we are having A blast doing it.

On another note things have been kinda difficult for Nick. Cystic Fibrosis is defiantly showing its ugly face and reminding us that CF is A progressive disease. On the 23rd of this month Nick will be 26 and I wish I could say that things were just AMAZING. Nick has gotten to A point where everyday things like taking the trash out,going grocery shopping and making the bed are breathtaking. Nick has been getting winded doing just about everything lately. Its hard because he does not feel "sick" just wore out from the simplest things.

It is so hard to sit back and watch Nick get frustrated with himself because he cant do the simplest things.This is A such a life changer for him considering how active he has always been and has taken some Major adjusting .I have also had to remind myself to slow down and not always be on the go.It is also frustrating for us when the ones we are close to just don't get it. They don't understand how cf effects our everyday lifestyle.

As much as I don't want to say it I do believe this is the "calm before the storm". Nicks transplant Dr. told him he had 3 months to get his lung function up or Nick would have to start the evaluation process for his double lung transplant.Since his appointment in September he has started pulmonary rehab,He is now 2 weeks in and finding himself facing A hospital visit for a exacerbation. He is frustrated at the fact that he cant get a routine going with the gym to get better before getting sick and needing IVS again. What the heck are you suppose to do ?

So with that being said Nick is calling tomorrow to make A appointment with his Dr. knowing good and well it is time for IVS again. Last Dr. visit his Dr told him that he will no longer be doing home IVS and that  he will be admitted from now on. Please keep Nick in your prayers as he is physically and mentally drained and frustrated.

Be thankful for the ability to breathe and remember not to take it for granted.....Just saying

Pulmonary Rehab

Hey everyone, I hope yall are having A great week!! This morning Nick had A transplant appointment,So we headed to Gainesville bright and early. Usually I am very confident about Nicks transplant visits and just know that it is not time to be listed. This time was A little different Nick and I have been out of the gym for 3 months. For Nick that is just not A good thing, His lung function is always higher when he is more active. 

With that being said since he has not been going it was no surprise to get there this morning only to find out that his lung function had dropped. We saw the Dr. and he was slightly concerned but had confidence in Nick,Just as everyone else does that he can do better and bring these numbers up. Nick starts pulmonary rehab at the end of this month and will be going 4 times A week. He is really excited about this because he know what the outcome can be. 

Nick was in this same predicament 2 years ago and kicked butt and was on top of the world. I have NO DOUBT that he can and WILL do this Again. The Dr said that he wants to see him when he is done with pulmonary rehab in three months.If then he does not see that Nicks lung function has improved he will then know that its time. Nick will then go through the whole process and testing of being evaluated. After that he will then decide weather or not he would like to be active on the list and waiting for lungs.

So that is where we stand and I thank everyone so much for all of your thoughts,positive vibes and prayers that were sent our way today. There is nothing better for Nick to get up in the morning sit down to do his treatments and check his stuff the morning of his transplant appointment only to find everyone who loves him sending him all that love. THANK YOU once again it means more to us than any of you will know.

Last week I took some pictures of Nicks little sister for her senior pictures. I borrowed A friends camera because I didn't think my lil' ol' point and shoot would have done the job. She has A Nikon d3000 which took some really amazing pictures,I fell in love. We have been talking about getting A new camera for sometime now and after using this camera I could not wait much longer. So Nick bought me the Nikon D3100 and I am telling yall I am in LOVE with this camera. Cant wait to show you some of the pictures...Hope everyone is having A great week. 

Dear Blog

Dear Blog,
Oh how I have missed your blank page for me to ramble on about my oh so simple life but crazy life.I had to take A break from you for A while,I even contemplated getting rid of you! Crazy I know!!! Nick and I went to CF camp and then people told me that they actually missed reading about my crazy life. It made me so happy to think that people across the country actually read you and knew who we were and loved reading about our lives
I know it has been A while and I hope you missed me as much as I missed you ,But no worries because I'M BACK. Here is what we have been up to.....

We had a GREAT turnout at the 2nd annual bowling for breath....And raised money for SSSC

My Grandma Rello from California finally got to see our new home....We were so excited to have her over

Nick and I adopted A new puppy, She is A chocolate lab and her name is Bristol

I learned how to sew....A few pillow case dresses

We went to Cf camp and once again had the most amazing time

We are now obsessed with planking

 And we finally got to meet some amazing people who we got to know through this blog....Pretty great people

Bowling for breath with slideshow

Woooohooooo, What A weekend we had last weekend! Last weekend was our 2nd annual bowling for breath and I am so grateful and happy with how it turned out. Let me start off by saying Nick and I COULD NOT have done it without the amazing help we had from some friends of ours.With their help we made a lot of progress from last year to this year.

Last year our event raised money for the cystic fibrosis foundation,This year we changed it up.The money raised at bowling for breath was donated to sunny shores sea camp. Sunny shores sea camp is A place that Nick and I hold very near to our heart.This is our little piece of heaven on earth. Sunny shores is A place where people with cf and their families go for A week. It is held at the Disney Vero beach resort and is A all expense paid trip/life changing week for the attendees. While our stay there we have get together's where we learn the new and up coming breakthroughs with cf.

With all that good being said it only seemed right to donate to SSSC. The bowling for breath event raised 2,087.00 for Sunny shores sea camp this year. It is so nice to see that we had so many more people come out and support our event. Thanks to everyone for your help and making this event as successful as it was. Enjoy the pictures.

30 before thirty

1. Go sky diving
2. Sew A blanket
3. Start A small buisness
4. Host an AMAZING girls night in
5. Go to the top of Mt.Solidad with Nick
6. Get A little certain something removed from my face
7. Go on A cruise
8. Adopt A child
9. Do 20 random acts of kindness
10. Take A cooking class with Nick
11. Stay at A bed and breakfast
12. Go to the keys with Nick
13. Go deep sea fishing (And actually catch something)
14. Take a sewing class
15. Go skinny dipping
16. Be apart of A flash mob
17. Milk A cow
18. Take A picture of myself everyday for a year, Then put it in video
19. Make 10 people cry tears of joy
20. Swim with the dolphins
21. Send flowers to 5 people on A random day
22. Mail 8 hand written letters
23. Complete A half marathon
24. Pay off some debt
25. Make and pass out goodie bags to the homeless
26. Go vegan for A month
27. Send A care package to the men and woman who serve our country
28. Learn to play the guitar
29. Go to the superbowl with Nick
30. Be an extra on A tv show or movie

Things I shouldnt say

If you don't have anything nice to say than don't say anything at all 
MOM

OOPS!! 

• The lady at Walmart should NEVER EVER EVER yell at me again because we are out of peeps,Yellow peeps for that matter because if we are being honest here she her son needed not one single more peep

• People should really quit complaining about who killed Osama Bid Laden and be thankful for the men who put their lives on the line to get it done. We have been looking for this dude for 10 years to do just what we did yall....Now you wanna complain geeshhh people

• After watching my nephew this weekend I realized that it is now or never...START putting money into our baby fund or consider myself like Oprah 50 something and no children= Not the life I wanted...Oh and to never wear white/khaki while in the presence of A 1 1/2 year old

• Is done with one sided friendships,Waste of my time.

formspring.me

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Whatcha wanna know? Just ask! http://formspring.me/mrsbrown1110

formspring.me

Whatcha wanna know? Just ask! http://formspring.me/mrsbrown1110

Best Day!!

I hope that every ones Easter was as amazing and beautiful as ours was. Nick and I decided to do something different and have Easter with just the two of us. I know normally the ideal Easter is to be surrounded by family and spending the day enjoying each others company. Nick and I have had so much going on lately with family,health,work and fundraising that we just wanted to get away.

Sunday morning Nick and I decided to wake up and go to St. Augustine. I had planned on cooking A small Easter dinner for just the two of us but last minute we decided not to. We got down there walked around for A bit it was a beautiful day there were families picnicking everywhere. We had A bite to eat at this adorable little place called the white lion. The prices were GREAT and the food was simply delicious

After lunch we headed out in front of the fort to find a spot to sit during the Easter parade they were having.Then I ran into A friend from work,The parade was so much fun. We ate so much sweets I am not even going to say how much I am ashamed yall. They have all these specialty shops that make it so darn tempting,It was worth it though. We walked around and shopped some more they have some of the neatest stuff down there that is all hand made.

Later on Nick and I along with our friends Krista and Steve went and had dinner at the conch house. This place was so beautiful and the end to a perfect day. The atmosphere was perfect the view was good and the food was even better.I HIGHLY recommend this to yall, i don't even care for seafood and I loved it. Check it our next time you are down in St.Augustine. Here are some pictures from the day ENJOY