Life as a Leach

Testing out the new blogger app I just downloaded.  I think this could really come in handy in the hospital this summer!!!

Given the most recent "storm" we are in, I Will Praise You in the Storm was a very timely book for me to read.  I found myself really identifying with the author, Danny Deaube.  He is the father of two children who had rare liver diseases, and this book is all about his experience with raising two medically fragile children. It speaks a bit of the frustration and stress that is a part of the daily life a special needs family, but most of the book is a recount of the medical experiences and surgeries his children had.  Both children underwent liver transplants at young ages, and while Deaube's son survived the transplant and lived to be in his thirties, his daughter died from complications. As I said, I really could relate to a lot of what the author said.  Like him, we live a life full of hospitals and doctors, while trying to keep our daily routines as normal as possible.  But what I feel was lacking in the book was the raw emotion that comes along wit...

I'm not sure if any of you have heard the story of Teresa Bartlinski.  A friend of mine shared her blog with me a year or so ago, and I've been following her story ever since.  Her mom also has a Facebook page for more immediate updates.  Teresa was adopted from China and was in need of a new heart.  Her time was running out when a donor call came.  They left their Baltimore home and headed up to CHOP, which is their cardiac hospital.  Sweet Teresa got her hero's heart, but there have been a lot of complications--including going into full cardiac arrest.  She has been on ECMO for almost a week now, which is basically life support for your heart.  The longer she is on ECMO, the bigger the chance of brain damage or stroke.  Her surgeons operated again yesterday to try to enlarge the left atrium pulmonary veins.  It was successful, but she is having a lot of bleeding and the doctors still haven't been able to get her off of ECMO.  ...

For Mother's Day, I was given the ultimate gift--the chance to go to bed early (and not have to wait up for the nurses) for a WHOLE WEEK!  Woo hoooooooo!  I also have the next FIVE Saturdays to sleep in....oh, yeah, and I get to go see Jekyll and Hyde when it comes here in November....but sleep is what is currently on my mind!  :) Since I try not to blog when the kids are awake and I won't be staying up late waiting for the nurse, you might not hear too much from me this week.  Never fear, I will be back...with tales of our Imagination Movers concert, an account of all of Abby's spoken words, and a few other fun things.  Stay tuned!!

I was introduced to this blog the other day.  It's written from the perspective of Avery, a baby with Spinal Muscular Atrophy, Type 1.  This is a degenerative disease that is incurable and lethal, and type 1 is the worst.  It's one of the more "common" primary diagnoses of CCMS, so I'm pretty familiar with it. This family could be devastated and heartbroken, and I'm certain they have their moments.  But instead of dwelling on their daughter's disease, they are choosing to focus on her life.  They are trying to fill a lifetime into the short time she has and have created a bucket list.  One by one, they are crossing things off of the list, taking lots of pictures, and having lots of fun making memories. Read it, cry, and smile at the bravery of this family.

I didn't write this post, but I wish I did!  It was written by a brave young woman named Sara who battled disease for a long time and passed away in September.  Her writing spoke to me so much, and I hope it touches you as well. ------ Joy is a big part of life... no matter how you define it or what brings it to you. I'm sure there are as many things that instill joy in people as there are people to describe it. Maybe for you it's the smile on your child's face in the early morning hours when you walk in the room to lift them from their crib. Maybe it's walking along the beach as the waves crash on the shore and seagulls make a choir in the distance. Maybe it's pulling into a gas station where the price is below $3/gallon. To each their own. But here's a question: have you stopped long enough to figure out what brings you joy, define what that joy feels like to you and realize that, like everything in life, it can be a choice? I made ...

We've hit 200,000!  You know what that means????  Another giveaway!  Stay tuned for details! We actually hit 200,000 last night, I think.  I'm not sure.  I was much too busy holding down a screaming, thrashing little boy so that Matt could get the blasted eye drops in while Abby smacked poor, defenseless Caleb on the head to notice the exact time.  I can't wait until we're done with these drops.  Come on, Wednesday night!!

If you look on the right side of the blog, you'll see little icons with pictures of some of the people who follow my blog....or at least the ones who linked up using Google Friend Connect!  Of those 71 people who are currently following, I don't know over half of them.  We're about to approach 200,000 hits...before I went into the hospital with Abby, I had a little over 5,000 hits total in almost 4 years.  I now get about 1,000 hits a day, and I know they're not all from my mother!  ;) Does that freak me out? Nope! I'm not naive.  I know that putting our life out on the internet has dangers.  I try to be very careful not to give anything more than our general Maryland location and do a lot of initials for places we go.  I don't link to local places and only include the names of friends' kids with their permission--especially now that more than 6 people read it on a regular basis! But the reason that I choose not to worry about the danger...

This is true.  I haven't been able to come up with interesting things to share recently!  I have some pictures I have taken, but haven't quite gotten them loaded and edited on here.  I'm not sure what has caused the blogger's block, because I'm not insanely busy (just the regular kind of busy that is my life).  I just can't think of anything particularly clever. Stay with me!  I'll be back...as soon as I get rid of the blogger's block!  :)

You may not be hearing from me too much over the next week or so.  Here's why... 1.  Caleb's birthday party is tomorrow (Lego Mania!!) 2.  Caleb's actually birthday is on Monday, the 9th. 3.  Matt will be gone for a conference Monday the 9th -Wednesday the 11th. 4.  I work Wednesday, Thursday, and Friday (11th-13th). 5.  Matt leaves for a youth ski retreat Friday the 13th and will be gone until Monday the 16th. 6.  I take my ESOL Praxis exam on Saturday the 14th (any free time between now and Saturday will be spent continuing my studying crusade!) 7.  I am speaking at an interdisciplinary conference at UMMC on Tuesday the 17th. Yep, just a few things keeping me busy!!  So, please don't think anything is wrong....if there is, I will blog!!  I might have a few things over the next week, but probably not too much.  Otherwise, just assume that I am going crazy trying to hold down the fort around here while stu...

I was contacted today by a  med student who found my blog while researching CCMS.  She is doing a presentation on it because one of the babies at her hospital was just diagnosed!!!!!  Welcome, #8!!!! I think I might have whooped when I first read her email at the idea that there is "another one" out there!  She was writing to ask if I had any resources or contacts, so I sent her a bunch of links and the contact information of a few different people that are somehow connected to CCMS.  Not specialists, but at least knowledgeable.  Guys, this is exactly why I blog about our journey.  I love when our story reaches others and am amazed that God has now used the blog to support medical professionals dealing with a diagnosis.  Thank you, Lord, for using our journey for good!  Please pray that the medical professionals hearing the presentation will become more knowledgeable about CCMS and will be encouraged by our story.  Even more, pray t...

Thanks to the help search engine, I was able to find a series of posts explaining how to format pictures.  I'm slightly embarrassed to say that it was literally a click of a button, but oh well.  I'm a writer, not an IT girl! Now, does anyone know how to change the font and color of the second line of the blog title?  I can't figure out how to do that.  Ahhhh, technology...

I've been having trouble with formatting the last few days.  Can anyone tell me in a non-technical way how to make my picture at the top of the blog smaller so that it doesn't require people to scroll over?  I want it to be small like the other one.  I don't know what I did, but something went wrong.  Help!  Thanks!

People who enjoy statistics may find this interesting.  Blogger has a great stats page that gives you all kinds of information about your blog traffic. Blog hits yesterday:  572 Blog hits in the last month:  11,939 Blog hits history:  64,773 People who viewed my blog with Internet Explorer in the last week:  1,090 People who viewed my blog on their iPad yesterday:  7 People viewing my blog in France in the last month:  19 Comments made on my blog:  494 Posts I've written:  812 Number of years I've been blogging:  6 (not all on the same blog)

Just a quick post to let you know that I am loving the comments that everybody is leaving on my blog--especially the ones regarding the recent post about how to talk to your child about a special needs child.  It took me a while to figure out how I feel about all of that (with lots of questions to other parents with special needs children!) and I'm glad that others are getting something from my thoughts.  I can't speak for other parents, but I would much prefer to hear a parent discussing Abby openly and compassionately than shushing him/her and turning away.  Anyway, thanks for all of the blog love!  :)  Muuuuuaaaaaaaahhhhh!

The winner of the recent caption contest post is Sandy! "Oh no- not another trach change--do you guys think you could just let it go--just this once!!" (I'm pretty sure she'd be saying that not just about trach changes, but about trach care in genereral!  She HATES it!) I also liked "future orchestra conductor" by Marjorie and "Gee Mom, thanks for a clean nose" by Christine. 1,000 bonus points to you, Sandy!  :)  Thanks for all of the great captions people sent in through email, Facebook, and commenting!

For some reason, a couple of my blog posts didn't post at the time I had set them, so you got a whole bunch at once.  Then, I put in the wrong date for my New Year's post (it should have been 1/1/11 at 12:00 a.m., not 12/31/10 at 12:00 a.m.!)  That's just a tad bit anticlimatic, now isn't it? Oopsie!  Please ignore these technical difficulties and still try to like me.

...isn't it just like God to give you a day filled with encouragement and good news after having a rotten day? Yesterday was pretty rough.  We'll just leave it at that, because that's not what this post is about.  This is about today being a pretty fabulous day. *  Abby was awake for most of my visit and interacted with me quite a bit.  While her test results aren't back yet, she's feeling much better and they don't think that she has the virus they tested.  (Yes, we're still on contact precautions--but I'm determined to go in with street clothes on Christmas!!) *  Caleb was well-behaved and really enjoyed his medical play time with Megan.  She gave him an entire bag full of medical supplies to keep! *  Old friends of ours from high school, Keba and Aaron, came to visit us today while they're here from Seattle.  It was great catching up with them! *  I was able to find a baby doll for Caleb and gave her a trach and g-tube just ...

10 things running through my head right now... 1.  I made it through two consecutive days at school with only a few gray hairs and one massive paper cut. 2.  What do you say when someone new to RMH asks if your child (as in Caleb) has sensory issues (as in autism)?  Um, no, he's just really good at throwing tantrums. 3.  We have been blessed beyond measure by the generosity of so many people.  HUGS! 4.  I'm convinced that anything Mrs. Cain makes is bound to be good.  :) 5.  Not too many people get a glimpse of what their house would look like if they died.  I did.  It's not pretty. 6.  Caleb just renamed his favorite blanket "Peace and Quiet."  I need one of those too. 7.  While I usually love snow, the prospect of my family being split on Christmas (with Matt being at home, Caleb and me being here, and Abby being at MW) has me very upset.  I want us all to be together, in the same room, without gowns, ...

I enjoy when people hear our story and ask how in the world I stay so calm through it all.  God has given us so many opportunities to share with others!!  I'm still floating on cloud 9 over being accepted into Model Waiver.  I really didn't think we'd get it and it's a HUGE weight off of our shoulders.  If no one else has insurance, at least Abby will!  (just kidding...we will have insurance...just maybe not a house...)  :) Tonight will be the first night I've stayed "away" from Abby since her birth.  I'll be going home (you know, that tan house with the black shutters where I used to live?) tonight so that I can go to work tomorrow.  I'm pretty certain I'll call the hospital about 15 times while I'm gone.  Yes, their number is programmed into my cell phone. Saturday night is far enough behind me for me to admit that I had a major meltdown.  It wasn't pretty.  I'm better now.  It had all just built up way too much a...