Thursday, April 22, 2010

First Blood Transfusion...

Today was my first blood was an interesting experience to say the least.  I had to drive into the city for my first one in case I had any negative reactions.  I was feeling pretty horrible on my way there, I am having problems with my thyroid again :-(.  When I arrived, I realized I was being sent to the Cancer Center...I was thankful that I don't have cancer.  I was seated in a recliner that was lined up with several others in front of a large window facing the sky-scape of the city.  All the recliners were full with patients thirty to fifty years my senior.  I was given a blanket and pillow's and set up for my transfusion.  It took about an hour and a half and I was feeling pretty good, especially since I had gotten my high score on Yahtzee on my phone!  I was feeling great when they had me leave...however, driving home, I realized I was quite dizzy and my ears were ringing.  I had to pull over but the symptoms were only getting worse.  Finally, I got myself home, safe and sound, where it took me a couple hours to recover.  Unfortunately, I don't know if it was the infusion or my thyroid...sigh...luckily, from now on I will be getting the infusions at home with a nurse on a weekly basis, so I can just rest following the procedure.  I am very blessed as many insurances don't allow home visits, there are many people that have to go to the clinic on a daily or weekly basis and it isn't somewhere I'd be comfortable being at regularly.

Friday, April 16, 2010

Websites that MUST be shared!


I just have to share with you two of my favorite finds...EVER!

The first is called Family Mint.  It is FREE and it is a website where you set up each of your kids's ALL virtual and there is NO real money involved.  No more running to the bank for one dollar bills!!!  It allows the kids to set up as many goals as they want and you can upload pictures.  As you make deposits into your child's account, they disperse it how they see fit and then it requests your final approval.  This has become a HUGE motivator for Dakota.  We set up three accounts for Dakota (you get to pick or upload a picture for each one)...he has his Tithe of 10%, his Retirement of 40%, and his Spending of 50%.  Remember when I told you if your child put $2,000 in retirement at age 16 and again at age 17, they would have a TON of money at retirement with no additional deposits?  Well, with Family Mint, you can match your child's savings or set an interest rate of return, etc.  So for Dakota's Tithe money, we left it as is, no special return or matching.  For his Retirement, however, we set up a goal of $2,000 with a 100% match by us!  For his Spending account, I set up a 6% return on his money.

Does this sound complicated?  It's NOT!  There is a quick five min tutorial on how to do it and I had all five kids set up in less than 20 minutes.  It's so user friendly, Dakota was transferring money and making decisions in less than three minutes.  Best part is that Dakota is doing a TON of math.  Every time he get's money, he has to figure out the percentages...then there is a "progress bar" underneath the account so he can see exactly how he's doing.  We even uploaded the game he is saving for as the picture for his Spending account. 

Anyway, I could go on all day.  Visit this site, again it's FREE, so awesome!!!

OK, my second favorite web find...actually, I love them both equally, is:

This is a place where people actually swap books!  For real!  For FREE!  So the curriculum I'm using for homeschooling is based out of classic literature, not text books...meaning I need to buy 75-100 books of all sorts each year for each kid...yes, we are talking $1,000 at least, if I find them used...sigh.  So, I put every book I need...yes, that was a chore and a half, onto Paperback Swap.  Every time another member posts that book, I get notified.  How does it work?  It's so simple really, it's absolute genius!  You post any books that you are done with and if another member wants them, you ship it to them via media mail for a measly $2 and some change.  Then you get a "credit" towards getting a book from another member.  Do you hear spring cleaning bells?  I did!  I sent out over 30 books, cleaned off my shelves, and now I have a bunch of credits sitting in my account to get new curriculum, which have been arriving almost daily!  Woo hoo!  What's more, you don't even have to swap any books.  You can buy credits, seriously, for like $3...that includes the shipping.  When was the last time you got a book for $3.  Anyway, one of my fav's, check it out and ENJOY!!!

Amazing Week!

We have had the most amazing week...I have had so many "Aha" moments that I don't know if I can even remember them all!  It started with me giving the kids a "vacation" day on Monday..."just because".  It was so fun...we all slept school work...and we played all day, including major water fights with the hose.  It was a fabulous day and a much needed break for all of us!

On Tuesday, I took a Homeschooling Seminar on "Managing the Multi-level Family" and "Teaching the "Difficult" Child"...during the seminar I kept thinking, this is common sense.  However, the following days, I found some of the ideas presented have really stuck with me...deeply.  One, in particular, was when she said, "I love you more!"  This was meaningful because my little Abbey, who has a speech delay, quite often says..."I uv ou mer!"  However, the speaker wasn't referring to "I love you more than you love me..."  She was actually referring to..."I love you more than an uninterrupted cup of coffee...I love you more than a full nights sleep...I love you more than going to the bathroom with the door closed"...OK, I added that last one.  But you get the idea.  Everytime the kids are interrupting your phone conversation, your favorite TV show, you moment of peace and quiet, she said remember..."I love you more!"  Then she teared up as she explained when she was getting up all night with one of her many babies that a friend of hers lost her five year old to cancer.  And she had no doubt that her friend would stay up each and every night and do anything else to have her baby back again.  So choose to say, "I love you more!"  My patience has increased by 300% with this internal dialogue.  Give it a try and let me know how it goes!!!

On Wednesday when the ice cream truck came (even though it was five minutes before dinner, grrr) I got all the kids ice cream in their favorite action hero shapes :-).  This was their favorite gift for the week!  On Thursday, Tim and I went on our date and we searched high and low for a video game Dakota had been saving up for.  We found it used and by saving him shipping, he was thrilled!


Friday, April 9, 2010

Getting Back on the Horse!

Hey Everyone!

I'm so sorry for not posting...I can't believe it's been a month!  My health has been so good that I've been going 100% trying to make up for all the household things that got behind while I was bedridden!  I have so much to write and I've been tearing myself up about not posting, then I'd get anxious about how behind I am, so I decided that I'm just going to start from here and try and fill you in on the past month in small, manageable chunks.

I hope you will accept my apology.  I have been gift giving like crazy, sometimes big, sometimes very small, but I'm having fun.  I have so many things to tell you.  I went to Boston and learned all about Alpha 1 and it was fabulous!  Tim and I helped earn over $20,000 in one night which was matched by a pharmaceutical company making it over $40,000!  We learned all about how to throw our own fund-raising events and met the most amazing people.  What's more, is I got excellent medical advice and was hooked up with THE Alpha 1 doctor in Arizona.  He confirmed everything that I learned and I will be starting weekly blood transfusions to help keep my lungs functioning at their best.  This treatment does not help the liver, but the liver is less likely than the lungs to have major problems.

I am so deeply blessed as I learned that the infusions (the cheapest ones) are over $12,000 per month and I will need them for the rest of my life.  I had to work the numbers, my first co-pay is $2,400 but thank the Lord for His guidance, as Tim and I had invested in the best insurance plan and there is an annual cap of $2,000 out of pocket!!! My doctors were shocked with how much my insurance was going to cover.  We also had to worry about my lifetime max as I will be going through the money quick, we were thrilled to find my policy covers 5 million dollars just for me!!!  That's 50 years of transfusions!  We are so grateful.  I start these in about two weeks and I'm very excited as I know they will help me feel much better.  There is a likely cure going through the FDA process currently, it should be available in 10-15 years.  The transfusions will keep me healthy long enough to see the cure!

My health has been better than in a long time.  I've gained some weight and struggling with that, but I'm exercising and eating great.  I'm can't wait to start sharing with you my gifts as they come.  Thanks for all of your support and prayers!!!