Things We Take For Granted

Breathing. That's something I take for granted. My friend Jenn wrote this on her blog the other day. I decided to "cut and paste" so as not to screw up any information. Please read it, pass it on, donate, pray, whatever you feel compelled to do.

This post is all about my cousin, Ashley. I have been on facebook and left notes here and there in this blog about her, but now I want to take this opportunity to share some more.

Ashley is my 26 year old cousin who at the age of 9 months was diagnosed with Cystic Fibrosis (CF). It is a genetic disease that is basically the overproduction of mucus. Right now, Ashley is facing a huge hurdle in her life. She is at the point in this disease where she requires a lung transplant to be able to continue to breathe.

Ashley is an amazing woman and just like a sister to me. She has managed, despite having CF, to go to college and get her degree. She got a job as an ultra sound technician, bought a house, and is now married and the proud mama of 2 dogs. She has made something of her life when faced with much less than ideal of cirumstances.

We are all faced with challenges in life. While hers may be greater than some others, we all push through and we all survive. That is just what Ashley is trying to do. Because Ashley went to school and got a job, she lost the title of "disabled". Disability and Social Security benefits ended - which as long as you are able to work and be a productive member of society, I understand. But what I don't understand is why now, when being a productive member of society is what Ashley is struggling with - per her disease, she can no longer receive those benefits. It is a 2 year process to reclaim the Disability status. She does not have 2 years to wait for those lungs. Had she simply lived off of those benefits and not gotten a job or gone to school - there would be no problem and they would be available to her. Does that process make sense at all?

Ashley is in need of her lung transplant. They have insurance, but the costs of such a transplant (mainly care and medicinal after transplant) far exceed that which insurance covers. All would be completely paid for with Social Security and Disability had she not gotten a job - but she did.

Ashley went 2 weeks ago for an evaluation. There is a small window of opportunity to do a transplant on a CF patient (and I assume any transplant patient). You must be sick enough to take the risk of surgery and rejection, yet healthy enough to with stand the surgery and come off the ventilator. Last Thursday Ashley found out that she is, in fact, an ideal candidate for the transplant at this time in her health. However, due to insurance restrictions, they will not list her. Because of the extensive costs and the red tape involved in this transplant, Ashley is trying to do fundraisers to help in her cause and to get new lungs. She has a blog of her own now and also has a cause, Keep Ashley Kennen Breathing on Facebook. But niether of those things are going to get her new lungs.

In an effort to help as much we can, our family is going to have a giveaway. We saw this done by another family to help children in Kenya and we thought that we would also give it a shot. We will be purchasing a brand new IPAD. From May 1st-31st we will be running this giveaway. I will post details here and every day on Facebook. For every $10 donation that is made to Ashley's transplant fund, an entry will be made on your behalf to the IPAD giveaway. Please make sure that you click on the red "contribute now" button on the left side of the page above Ashley's picture. For multiple enteries to count, they must be done in $10 increments. If you make 2 $10 donations, you will have 2 enteries. If you make 10 $10 donations, you will have 10 enteries. The donations go directly to the National Transplant Assistance Fund and they are tax deductible. In addition to an IPAD entry for every $10 donation you make, our family will donate $1 for every person whom makes a donation. Ashley will randomly select a winner June 14th. This will allow for all of the donations to be posted and every entry counted. Ashley will have herself video taped as she randomly selects the winner. The video will be posted here and also on Facebook. I am hopeful that this great idea will work out as great for Ashley as it did for the children in Kenya. Please share this with friends, family, on your facebook or on your own blog. The more aware we can make people about the challenges that people face in getting the proper medical care, the more good we can do. Thank you in advance for your support and thank you for taking the time to read about Ashley and her newest adventure.

$10 can make a world of difference and give someone the GIFT OF BREATHING! To make your TAX DEDUCTIBLE contribution today, go to http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/8709F3F5-F91C-86EB-6D967F9A587472CE and click on the red "contribute now" button.

Neither Apple nor the National Transplant Assistance Fund are a part of this fund raiser. Neither have supplied any material or endorsement All proceeds are to benefit the National Transplant Assistance Fund in honor of Ashley Kennen.

ENT Time

Nathan had his follow-up appointment with the ENT today. During our 5 minute appointment, which will probably cost upwards of $300, we were told that Nate's ears look just fine. The tubes are open and his ears were clear. We go back in 6 months and will get a hearing test at that time. Speaking of ears...I think I mentioned that Ella was having some hearing problems again. I took her into the pediatrician, and it turns out she had a double ear infection. She just finished her round of antibiotics today. What is it with my kids and their ears???

Nathan has regressed in the sleeping department, as I wrote about previously. His most recent trick is to wake up screaming around 10:00pm and want to go downstairs to have a snack. I gave in to this request for a few nights, then realized what a bad habit I was creating. So last night we said "No." And boy did that cause a melt-down. I mean a full-blown, screaming, possessed-like, tantrum, that lasted for over an hour, and left Joe with a nice bite mark on his arm. Bruise and all. I am smacking myself in the forehead, clueless as to what to do. I can't let him "cry it out." It's just too hard on me, and probably him at this age. A friend of mine is letting me borrow her book called, "Good Night, Sleep Tight: The Sleep Lady's Gentle Guide to Helping Your Child Go To Sleep, Stay Asleep, and Wake Up Happy." Sounds good to me! My parents are having Ella over for a sleep-over tonight so we can start trying some new techniques with Nathan. How much do you want to bet that he sleeps through the night tonight, no problem? I just want everyone to be able to get a full night of sleep, no interuptions. Some day, right?

Website Review

CouponChief.com invited me to peruse their vast supply of coupons in April. As a new "couponer," I was excited to find out about this site. CouponChief is a free service that offers hundreds upon hundreds of coupon codes for online purchases. For example, if you make a purchase online at Target, at the end when you put in your credit card number, there's usually a space labeled, "coupon code" or "promotion code." This is where you would put in the codes that you can find on CouponChief. Target coupons are just one of the many available coupons on the site! There is also an option for people to upload their own coupons, and when someone else accesses that particular coupon, you get 2%, which can be paid out by check or through PayPal on a monthly basis. Another feature is the "Coupon-4-Causes" option which lets you earn money for a particular church, school, or charity when you shop online. You shop, they donate! Raise your hand if you love shoe shopping...I do, I do! Have you tried shopping for shoes online? CouponChief has shoe coupon codes to save you money on your next shoe purchase. So if you make an online purchase in the near future, CouponChief may have special codes that could you money on your purchase! Happy shopping!

Nate's Stats

Well, this little boy is 18 months old today! Doesn't he look handsome in his Easter outfit? We went in for his 18 month check-up today. He weighs 24 pounds, 12 ounces, which is the 30th percentile, length is 33 inches, which is the 70th percentile, and head circumference is 49cm, which is the 80-85th percentile. So basically, Nate is tall and skinny, with a big head. Nate's ear tubes are working. One of his ears started draining last night, and after the doctor looked in his ears, it was determined that the one side is infected. But this time, all we need to do is put in ear drops...no oral antibiotics. The doctor said Nathan is developmentally right on track, and ahead of the game in social development. He got one shot, cried for about 5 seconds, and was done. He had a little fever this evening from the vaccine, but went to bed just fine, and should be back to normal tomorrow.

Ella can't hear again. I'm hoping it's just the cold that is affecting her ears and that it will clear up on it's own. Otherwise, we're going to have to take her in and get her hearing tested again. Hey, at least since we're going to have to pay $6,000 out of pocket, our deductible will be met, so everything will be covered 100% after that! Hmmm...what else could we get done?

My prayers go out to my high school friend Jenn, who 12 years ago today, lost her mother, father, and sister in a horrible car accident. Thankfully, Jenn and my other friend Kelly survived. I am so grateful that they are in my life today.

Long Time, No Blog

Let's just say the past week and a half has been challenging. I don't even know really where to begin, because I'm not entirely sure why things have been so challenging.

Nate has recovered completely from the ear tube placement. Just this morning his eyes were super gunky, so I'm wondering if we'll start to see his ears drain as well. He has his 18 month appointment on Monday, so I'll post his stats next week. In the last week, Nathan has been having trouble with sleeping...and I'm tired. Normally, we can put him in his crib, following looking at a few books and singing a few songs, and then we can leave. He falls asleep on his own. We worked so hard since about 6 months old to get to this point. However, he has never consistently slept through the night. A few nights ago, we put him down and he just wouldn't stop crying. He would stand up in his crib and scream. At this age, I have a big problem letting him "cry it out." It's just too hard to listen to. And then a few days later, he woke up at 4:00am and he was up for the day. And yesterday, he screamed and screamed when I tried to put him down for a nap. I met my breaking point yesterday and had to call my parents to come over to rescue me. I was crying, Ella was crying, Nathan was crying. I felt like I was losing it. Once they arrived, I crawled into bed and got under the covers. I ended up falling asleep and took a nap. I felt much better when I woke up. But I've really noticed that my patience is lacking and my fuse is short. I need to work on it. Badly.

I notice the short temper mostly with Ella. At three and a half, she is very independent, and extremely stubborn. She's sassy and doesn't listen to a word I say. She's started having night terrors again. She constantly tests me to see what she can get away with. It is so frustrating. I'm currently waiting on a book from the library called, "Love and Logic." A friend of mine is an instructor for the "Love and Logic" technique and I'm waiting to see when the next class is going to be offered. SIGN ME UP!

I love my kids so much, and it makes me feel so guilty when I yell or get frustrated. I fear I'm causing their negative behaviors, not helping it. I'm just so tired.

On to more positive things...my friend Christine gave birth to twins on April 7th. Twin A was 8 pounds and twin B was 6 pounds, 6 ounces. Can you believe it? They're huge! I'm going to visit in July and I can't wait to hold those little boys!

We had a nice Easter with my parents. It was so nice to be able to spend a holiday with them without having to travel 6 or more hours. They hid eggs for the kids and gave them nice Easter baskets. They love going over to "Gigi and Papa's" house. I do too!

Well, I'm hoping for a better week ahead. And hopefully a more positive blog post.