Saturday, May 22, 2010

Why Is Great for Parents

I am not receiving any compensation from for this post, although I did just add their "refer-a-friend" button to my blog and I will receive $10 off  for each person who signs up and purchases using that button.  But, really, I don't care if you do it through the button on the blog or not, I just think is awesome and thought I would share.  For those of you unfamiliar, is an online retail option.  They carry all the same things that your local Rite Aid, Walgreen's, etc. would carry.  But, they offer free shipping and great prices and even the ability to use online coupons for your purchases.  I signed up for it a while ago and have used it a few times to purchase formula and paper towels in bulk.  The prices for formula were competitive with our local chains - only one place actually beat their price - and with the free shipping, there was no reason for me to go packing around 10 cans of formula rather than get it delivered straight to my door! 

I personally like because I can get on, pick what I want to purchase without having to load the Bean into the car, put her in a "who-knows-what-has-touched-this" shopping cart and tote her around a store!  I will still need to go to the store for more grocery-type items, but as I plan for my six weeks of "single parenting" (my husband will be working in Michigan for six weeks starting the end of June), I definitely will utilize this option much more frequently!  The delivery was not overnight, so it will require you to plan at least a couple of days ahead for what you need, but that isn't bad with free shipping! 

The other thing I love about is the origin of the name.  All of you probably remember Alice from the Brady Bunch?   The tag line for the website is "Everyone Needs an Alice!"  I think that's awesome.  In addition, their shopping layout is also really easy to use - they have symbols for all the major rooms in your house (toilet paper roll for the bathroom, pacifier for nursery, bed for bedroom, etc.) and then all things that would be needed in that room - supplies, cleaners, etc. are under that link. If you don't like shopping by room, you can shop by manufacturer/brand, green/organic, premium selections, best deals, or recently added.  Its really genius!

Finally, your orders arrive in a cool box with a free gift inside (usually a pen for me), and your items.  Right there at your door!  No loading/unloading the car.  No loading/unloading the kids.  No fighting with the heavy bags or awkwardly packed bags.  No getting to the store only to find out that what you wanted to get is sold out or that you forgot your coupons (coupons available for products will automatically pop up in for you) or that you can't remember what it was you were going to the store for in the first place.  Okay, maybe that last one is just me.

So, I encourage you to check out - parent or not.  Its a pretty cool online shopping site and if you use the button on my blog you can get $10 off of a $50 purchase - and remember - no shipping! 

Saturday, May 8, 2010

Unexpected Motherhood

As I approach my first Mother's Day NOT spent in a hospital room, there is some time for reflection.  I don't think motherhood is ever what we EXPECT it to be.  After all, first-time mothers have NO IDEA what to expect.  We all watch other people parent.  We may even have taken care of other people's children or younger siblings, but when a child is actually yours, it changes everything.  In addition, each child is different - so even if you have had previous children, you aren't quite sure what is going to happen.  But, I think parenting a chronically ill child or a special needs child (or both, as the case may be), is really something for which no one can be prepared.  And when you combine the two - first-time parenting with chronically ill child - the unexpected aspects of motherhood really start to pile up.  Bean is doing wonderfully this Mother's Day eve...she is starting to do so much that a baby her age should be doing - chattering, cruising around our rooms both walking and crawling (walking still requires some furniture aids), clapping, entertaining herself with toys and household objects, and smiling a ton.  She is still wearing some 0-3 month clothes at almost 15 months old, but she is eating regular food, drinking formula like a champ and has no extraneous tubes to be cared for.  Amongst heart moms, I consider myself to be incredibly lucky...many have so much more to deal with then we do.  It seems strange to some to call myself "lucky" - but, I realize that I am just that - lucky.  But, I also realize there are things that are "typical" for me that other moms will never have to deal with.  Giving multiple medicines at 8 a.m. and 8 p.m. each day (with a few in between as well).  Getting blood drawn on a regular basis.  Visiting cardiologists and gastrointestinal specialists and being visited by physical therapists and developmental therapists.  Its all part of our lives now.  And that is why I loved the post, "a Mother's Day reflection" over at Our Transplant Journey.  It captures so much in just a few simple statements.  My favorites include:
I never thought I'd be in an emergency room watching a doctor and a group of med students smell my daughter's diaper.
I never knew how terrifying a simple stomach bug could be.
I never thought I'd know what an IEP is.
Those never knows become empowering "now I know"s soon enough.  And someone else out there who needs to know will seek out information and help from us and those unexpected nuggets of knowledge become small gifts of comfort and understanding that we can give to others.  Life may have been easier with a more typical child, but it would have been a life unaware - unaware of the gift a child is - whether she be well or not, the gift that knowledge is - whether it be sought out or forced upon us, and the gift that appreciation is - appreciation of milestones reached very late, of a birthday (or Mother's Day) spent outside of a hospital, of the amazing gift of life given to us by a total stranger who suffered a much worse fate than us.  I am truly thankful and appreciative this Mother's Day! 

Happy Mother's Day to ALL moms - may your motherhood journey, whether it was what you expected or not, be one of joy and love.  And to all those moms out there who have lost their children - to illness or to accident - including our donor's mom - my heart and thoughts and prayers are with you.  This must be a terribly difficult day, but your children are celebrating you somewhere and their love is still in your heart.  May you feel that love today and all your days.

Tuesday, May 4, 2010

A Year Ago...Yet So Very Far Away...

So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today.  Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".  Jason was at the hospital by himself for the third day in a row because I had some kind of laryngitis/cough thing going on (gee, think it might have been some stress?) and we just found out we had gotten into the Ronald McDonald House for the first time.  Here is that entry:

Mackenzie got promoted to the Third Floor today at Stanford! That means she is out of the PICU and into the "transitional" area. Jason tells me her new room is very nice and she is in a real crib now - her first crib! She is still handling the oral medications quite well and she got her first bottle feed today in over three weeks and Jason said she sucked the 10 ml down in about 30 seconds and they had to take the bottle away from her to make her stop drinking (they don't want to overdo it). So, I think we may be able to start bottle feeding every three hours again now. This is great timing because we also found out we got into the Ronald McDonald House, which is right by the hospital and will allow us to be there for most of the feedings, even in the middle of the night. Cara Cupp, my college debate partner and roommate has been incredibly gracious to let us stay at her place since we got here and its been great - only 20 minutes to the hospital and she even got us Ling Lings at Costco this weekend! :) But, now that Mackenzie is eating on a regular schedule, being closer will make things much easier. I just hope I can get over my illness as I can't move into the Ronald McDonald House until I am better since they have some of the outpatient kids staying there as well as families.
Stanford is going to go ahead and complete all the necessary tests/evaluations needed for a transplant. This way, if that becomes necessary, Mackenzie can be immediately listed instead of having to wait while the tests/evaluations are completed. We are all hoping that it never is necessary, but it is much better to be prepared if it does happen. So far, Mackenzie's heart is looking pretty stable - not good, because its still big and pretty weak, but as long as its strong enough to do the job its supposed to do, she can get by with the big, weak heart. One of the cardiologists last week said her heart was just "too filled with love" and needed to get a little smaller. Hopefully the big love continues even as the heart gets smaller and stronger.
I miss seeing Mackenzie! I am drinking lots of OJ-Mango juice trying to get fingers crossed I get a voice back and lose this occasional cough!

Obviously, Mackenzie's heart did not stay stable for too long...but, that is a story for another day.  A year ago...we had hope...and today, we have hope for a totally different reason!

Tomorrow the local newspaper is coming to do a story on Mackenzie.  I had written them during April hoping to get something in during Donate Life month, but the reporter wasn't available until tomorrow.  But, as the reporter said, "The need for donors will not go away in May."  Truer words were never spoken...I hope the story goes well and I can get my house looking decent tomorrow.  

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...