Simple Savings

It's a little known joke around the Blount household that I would make an awesome stay at home.... wife.  It is definitely a joke and I won't be leaving my job anytime soon!  But because of this joke, and well, for other obvious reasons, I love to save any dime I can and use it as "supportive evidence" for why I should stay at home :)

Anyways, since Tyler had to work late the other night (tax extension's are due soon!) I had the chance to do some research I had been wanting to do.  For those of you who are learning about CF as you read my blog then you may not know that people with CF have to have A LOT of medicines. Because of this, many people with CF are a part of government programs that help with the hefty costs of these absolutely mandatory medicines.  Like all government programs, to receive this type of help, you must meet certain eligibility requirements.  If you don't meet these requirements, there are other options out there that might be of help! We just learned about these options and definitely wanted to share just in case anyone else out there had no clue about these programs (as was the case for us!).

Tyler has to take these three medicines which can be rather costly: Pulmozyme, TOBI, and Cayston.  Turns out, that each of these medicines have a co-pay program where the manufacturer helps pay for a portion of your co-pay costs, if your co-pay is above a a certain amount and if you are not on government funded insurance or assistance.  Here are the websites I found that helped me through the process:

Pulmozyme 
Website: 
http://www.pulmozyme.com/insurance/copay-card.jsp

Phone Number: 1-877-794-8723

New Co-payment: ONLY $30.00

TOBI 

Website: 

http://www.tobitime.com/info/co-pay-card-tobi.jsp

Phone Number: 1-877-999-TOBI

New Co-payment: ONLY $10.00

Cayston

Website: https://www.cayston.com/assets/media/pdfs/Patient_Reimbursement__CC4389_ENG_10_27_10.pdf

Phone Number: 1-877-7CAYSTON

New Co-payment: ONLY $25.00

All I did was call the numbers I have listed and ask for more information about their co-pay programs.  Each person I spoke with was very helpful!  The Pulmozyme representative gave me all of my card information over the phone and said he would mail the card to me immediately. But in order to start using it today all I had to do was go to our pharmacy give them the information (ID Number, BIN Number, etc.) and they put it in the system for next time we pick up Pulmozyme.  The TOBI representative did almost all of the work for me.  She faxed a copy of the card over to the pharmacy and so when I arrived there today to take care of the Pulmozyme, the TOBI information was already up to date and ready to use.  Then the pharmacist gave me the faxed copy of the card.  Cayston has an additional approval process, they contact your insurance to make sure that you are not receiving any government funding, but after we hear back from them I am sure the process will be much the same as the other two.

If you have any questions, I would be glad to help! Happy Savings!

We're Breathing Easy!

It has been a LONG three weeks!  Much more so for Tyler than for me, but we made it!  We headed back to Birmingham last night (our third trip in about 8 weeks) to be there for our 8:00 a.m. appointment this morning.  Our hope was the Tyler's lung function would have increased and that all of the craziness of the last three weeks would be worth it.  But what would be the fun in telling you the end of the story, without telling you the whole story!

Like I mentioned before, this is the first time in eight years since Tyler has been on IVs.  He is so blessed with great health and this was definitely a reminder that we need to be doing everything we can do to keeping his lungs in tip top shape (which means sometimes I am going to have to be the mean one who pulls him out of bed long before the sun rises so that we can get in a nice run before work.... he hates to run!) Tyler was put on three different antibiotic IV treatments for two weeks and it sure seemed like the poor guy could not catch a break.  As soon as we made it home, after the PICC line had been put in, Tyler began to feel a tight pressure in his chest.  At first doctors thought maybe the PICC line was in wrong and so they sent us on a late night trip to the ER. Turns out, Tyler was just having an allergic reaction to the meds.  Rather than stopping the IVs though, the pharmacist just diluted his dosages which meant the IVs ran for 4 hours, two times a day.  Not fun. Luckily, I do not think he was aware of much of what was going on since the doctors put him on Benadryl to help with the reaction. I am pretty sure I have been married to a zombie for the past three weeks.  Amidst all that, he had fever and several other not so fun reactions.  All that said, when we went into the doctor's office today, I just wasn't so sure Tyler could handle it if the doctor said the PICC line was staying.

Luckily, it was taken out!  And it was like sunshine on a rainy day!  Tyler is back to his normal self and I am so, so glad.  His lung function went up 10% and it is exactly where we want it to be.  For all of you who have prayed for us and put up with our constantly change plans, we so appreciate you and really couldn't make it through times like these without you.  Let's hear it for at least eight more years of no IVs!

Gotchya!

With all the craziness around here, I thought the surprise get together I had planned for Tyler was going to have to be canceled. What a bummer!  But actually, with a few small changes, we made it happen!  We had a really great time and always love a chance to hang out with the McGehees and the Mays! They are such sweet friends!

Check out these pictures! And I thought I couldn't keep a surprise from him...

This is Tyler with one of his birthday balloons from LAST year.  The balloon stayed alive for the whole year and even made the move to the new house with us.  I thought I had "secretly" thrown it away, turns out Tyler has "secretly" rescued it so it made it's surprise reappearance the day before his birthday.  This was so funny I just knew I had to put up a few decorations....

I also  really wanted to make Tyler's birthday cake.  I had helped with a few other cakes before, but I had never done one all by myself.  But I think his electric guitar cake turned out pretty cute!

Tyler LOVED it!

I think 26 is going to be a great year for Tyler!

When life doesn't go as planned...

I wonder if any of you can relate... Sometimes, in certain moments of life, I wonder why things just wouldn't work out a little easier. And while I definitely feel this for myself, I have also found that I feel so burdened when life seems to throw a curve ball in Tyler's direction.  I can be what some may call a "perfectionist"  and I just wish I could make everything work out.  At times I think if life would just work out logically, then Tyler and I would have everything lined up.  Together with my organizational skills and his mad reasoning skills we would have all of life added up and then put into neat little boxes. Oh that life would be that easy!

But sometimes it just isn't and like my Dad reminded me when he had his recent surgery, when things don't go as planned or our body fails, it is just a reminder that this earth is not our home, that things here are not perfect, nor are they permanent. So with that truth in mind, I want to trust the Lord in these times and be refined by the moments I don't understand, can't reason, can't organize, can't control. And even more than that, I want to overflow with a deep sense of hope and joy in these circumstances. I love the way this is explained in Jeremiah...

 “But blessed is the one who trusts in the Lord, whose confidence is in Him.  They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit."

Jeremiah 17:7-8

Well, our trip to Birmingham didn't go exactly as planned.  After being on a high from the results of the VX-770/ VX-809 trial, it was hard to hear the "doctor's orders."  We had been to Birmingham two weeks before this trip and he had told us that Tyler's lung function had dropped due to a lung infection.  We had hopes that his lungs would react to an oral antibiotic, which is normally the case in these situations.  Unfortunately, when we arrived two weeks later for our check up there was no measured improvement.  We take a pretty proactive approach to Tyler's health and so when the Doctor said he needed to get on IVs, we gave him the thumbs up.  Luckily, we are able to do them at home. It means  quite the change in our routine for sure, but Tyler is definitely more comfortable and can maintain a far more normal schedule than he could if he was put into the hospital.

In all this, we can't help but be grateful...

We are so grateful for the staff at UAB.  They are awesome, like always, and organized everything so Tyler could have a PICC line put in that same day of our appointment so we could return to Mississippi that evening. Long day!  But we made it!

Since I can remember, I knew I was not cut out to be a nurse!  I can't handle blood or pain; it's just not my thing.  But it is so true that the Lord's strength can shine through our weakness, because believe me, I couldn't do it otherwise! On top of this, Tyler has been blessed with an incredible pharmacist and for that we are more than grateful! She walked me through all the steps of administering the IVs, more than once, and called to check in on us several times the first day.  We couldn't have made it without her!

We are also overwhelmingly thankful for our jobs and feel so lucky that both of our bosses are flexible and understanding.  Whereas most business jobs only give their employees 10 days off a year, taking time off has never once been an issue for us which has allowed Tyler and I to go at this together. What a blessing!

We are also so thankful for our sweet friends and family.  The constant prayers and encouragement are overwhelming and we feel honored that you would take our burden on as your own and present it as a request before the Lord.

We are so thankful for Tyler's health.  This is the first time in 8 years he has been on IVs, which is really rare for CF patients (many find themselves on IVs annually). It's a blessing he is so healthy on a regular basis.

And all of these things are provisions from the Lord and that is the thing we are most thankful for.  We are thankful for His presence, His patience with us, the lessons He is teaching us, and for His constancy.

Thanks again for all your prayers! We head back to Birmingham in two weeks and I will keep you updated!

"The Lord is my strength and my shield. My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him" 

Psalms 28:7

Happy Birthday Tyler!

Birthday's are a big deal around here! And I for one could not be more excited to celebrate Tyler's!  Today is his 26th birthday and since he has been telling everyone he was 26 since December, I doubt he will mind me "revealing his age."

When it comes to birthdays, it seems only necessary to pull out those cute, little, embarrassing baby pictures.  But since I am putting together this post, sitting in a hotel in Birmingham, it seemed like I was not going to be able to find just the picture I was looking for.  Luckily, Tyler's dad was able to pull through and provide this little number for your viewing pleasure....

.... I should probably confess that I did not get permission to use this picture. But come on, seriously?? 

SO cute.  

Since we hadn't really planned on having a doctor's appointment in Birmingham on his birthday (I know, terrible scheduling!), we decided we should just celebrate all week. So far here is what we have been up to...

 For those of you who don't know Tyler, you should know that it is completely impossible to surprise him and for those of you who don't know me you should known that I find it absolutely impossible to keep secrets about surprises from Tyler... probably a bad combination.  Anyways, I was really pumped when I picked out his gift until at the check out line the little guy at Best Buy started overwhelming me with questions about system support and insurance, blah, blah, blah!  I hated to make a mistake with what I thought would be the perfect gift, so like any good wife, I called Tyler and asked ever so subtly if he would purchase any of the above if he was ever in a situation where he might be buying a Nintendo 3DS.  Well turns out, he would.  Surprise spoiled?  Yes, probably.  But nevertheless, he seemed pretty excited and since at this point he already knew what he was getting... I just had to give it to him early! 

Next we got the chance to celebrate with his parents!  Family birthday parties are the best and we had a great time.  We ate a great Italian meal and Tyler got some awesome gifts!  His mom also made him his favorite vanilla cake with vanilla frosting. I think he liked it...

There is still more birthday fun to be had around here, but that's all for now!  Tyler, I hope your birthday is super fun and I can't wait to share many, many more!  If your that cute when you were a baby, I can only imagine how cute you will be as an old guy! 

A little Diners, Drive Ins, and Dives Inspiration

Tyler and I rarely have much time to watch TV. We pretty much rely on DVR for the shows we love, but when we do watch miscellaneous TV, we more often times then not find ourselves turning on Food Network at about 10:30 where we end up watching Diners, Drive Ins, and Dives. By this time of night our dinner has settled and the glorious description of fattening, All-American cusine is like a trap. It's like we know what we are getting ourselves into and so we only have ourselves to blame, but we can't resist. So by eleven o'clock we seem to be having an unquenchable craving for deep dish pizza or fried chicken.

Well a few night ago, Tyler and I found ourselves in this very scenario. The diner was making "grilled cheese" with pulled pork and macaroni and cheese... Hello, yummy goodness!! Unfortunately the only thing our pantry provided in a similar flavor scheme was hotdogs and Kraft mac and cheese. But that didn't stop us! The very next night, Tyler whipped up his very first "home cooked" meal. Hats off to the chef for creativity, spontaneity, and taste!

The final product

I was maybe just a little skeptical...

But Tyler was, of course, ecstatic!

Life around here has been pretty relaxed as your can see :)  But this guy finds a way to keep life interesting somehow or another! More pictures of the house to come and definitely more updates on CF stuff soon!

Decorating and Babysitting

Tyler and I have been busy at work on our new home.  So much so that we laughed at ourselves when on a Friday night we were actually choosing to do yard work! I know, who would have thought? But it has been so much fun and the house is really beginning to feel like ours!  As for the inside of the house, new paint is up on almost every wall (okay, maybe a few more to go!) and it seems like the furniture has finally found its place (for awhile there, you had to be careful where you sat around here...because I might have just moved that chair you were planning on relaxing in!)

We have made a lot of progress since I last posted pictures of the newly painted walls, but we still have a ways to go, so I will just show you a few of the spaces that are more settled.

This piece is our newest addition and is in our foyer, which opens up to our....

Living Room. Okay, so this is just the couch. But Tyler's Aunt just finished these adorable pillows and I am in love! So thats why the picture is...well, all couch!

As you can see, our living room opens up to our kitchen, and here is a picture of the kitchen eat-in area:

In the midst of settling into the house, we had the privilege of watching my sweet nephew for the weekend while my sister and brother-in-law were on a mission trip to Guatemala.  We quickly realized that our decorating sense is not quite kid friendly.  But that didn't stop us from having a blast with the little guy!

This one if my absolute favorite!  They really bonded....a big step for Tyler!

So maybe we broke few rules about the pacifier?  But he was so cute!!!

Typically I would expect this look of Tyler mid an intense video game.... not mid Sesame Street episode... but hey, maybe it was an exciting segment on the letter of the day.

We feel so blessed to have our new home and love sharing it with family and friends! In fact, come on over, Tyler just told me tonight that he is going to start cooking! So I am sure he will be glad to whip you up one of his specialities...once he figures out what those will be of course.