Life as a Leach

My presentation went really well, and we got some great feedback.  It just about killed me and I think I put in a total of 18 extra hours (in addition to work hours) in the last week, but it was worth it! Sadly, my computer crashed Tuesday night (AFTER I finished my work on my presentation, thankfully!)  and I haven't had anything to use but my phone.  It's kinda hard to write a blog post on your phone! My laptop is still in the process of being fixed, but Matt is hauling his work laptop back and forth so that we have something to use. I did manage to take a break from my work long enough to get in on a little of this action, though!  :)

The little ole blog is going to be a bit quiet over the next week or so.  Why, you ask?  Well, my coworker and I have a tremendous opportunity to do a SIOP (Sheltered Instruction Observation Protocol) presentation for a whole bunch of teachers in our county...and it's next week...and we just found out yesterday.  Because it's a big deal for us to get to do this and has the potential to get the word out about the program we are presenting (and love, and believe in!), we need to do it right.  Which means that I will eat, sleep, and breathe SIOP for the next week.  But it will all be worth it if we can spread the word about the awesomeness of the program. So here's an update to catch you up and tide you over: Abby loves school.  She isn't telling us too much about it, but I consistently get that she plays with Anna and gets a stamp from Ms. Susan.  Her Friday Mom's Morning Out program is awesome too, and I love that she has the same teachers and can...

Our local strawberry patch is open!!!! Once you eat these organic, fresh-picked strawberries, you'll never buy them from the grocery store again.  Ever.

This girl gets very kissy whenever I blow dry her hair after a bath.  She loves to watch herself in our big bathroom mirror and smother me with kisses.  I'm glad I captured the moment!

Sorry I have been MIA a bit this week, but it has been for a lot of very good reasons!  Matt is home this week, so we try to spend as much family time together as possible during his "home weeks."  They are hard to come by in the summer.  (In addition to the trips, there are an additional 2 weeks during the summer when he is technically home, but gone all day and night.  He sleeps at our house, but nobody sees him!) This week, we: 1.   Celebrated Matt's birthday a little early with a dinner at Outback , but it was sadly disappointing when the power went out shortly after we placed our order.  Turns out, Verizon cut a line while working on theirs and it would be hours before the power came back on.  The only person who ate dinner that night was Abby!  Of course, it was nearing 8:00 by then (lots of waiting as they tried to process our drink check), and we had a disappointed boy on your hands...so what did we do?  Have ice cream for dinner ...

We got a CSA this year.  If you're not familiar with it, a CSA stands for Community Share Agriculture.  There are different kinds, but the most common is for people to get some of what is grown on the farm. I didn't like that kind because I don't like the idea of getting stuff I've never heard of and wasting money because we're not going to eat it, so I decided to go with a CSA where I choose the veggies.  More or less, we're paying someone to garden for us.  I get the veggies without having to do any of the work!!  :) So far, we've enjoyed a ton of mixed lettuce, some broccoli, and carrots.  We'll be getting food all the way through the fall, so I look forward to lots of yummyness! So why do you need a CSA if you have kids??  Caleb absolutely LOVES picking the vegetables in our garden and has learned so much about where our food comes from.  As a result, he is choosing to eat many more vegetables too--all the while proclaiming, "We grew thi...

I have SO much to blog about.  Life has taken over, and I just haven't had any time.  It seems like every aspect of my life is VERY busy...work, family, medical, education, etc.  Woooooooo!  Summer is so close I can almost taste it, and then life will slow down and I'll float in the pool with my laptop and blog the day away.  Riiiiiiiiight... Stay with me.  I've got lots to share, with very little time to share it!  I promise, I will though!!!

It's slightly complicated to go overnight with Abby.  We pretty much have to take the same amount of stuff, whether we go somewhere for one night or seven.  (The things we would need more of for a longer stay are small!)   Here's what our foyer looked like before I packed the car.  This isn't even all of it! The view of the car from the back.  We packed three plastic bins full of Abby's supplies, batteries, chargers, power cords, etc.  I may or may not have raised my arms and shouted VICTORY!  when I finally shut the back hatch...until I realized I forgot the bike.  There was NO way it was going in the back, so Caleb had to rest his feet on it.  Once Abby is off of her vent completely, the amount of space her equipment will take up will decrease dramatically.  This pole with wheels is the vent stand that we have to bring with us on overnight trips because it holds the water chamber that she has to have for humidity...

I read this article the other day after it was reposted by Moms of Miracles, a group I belong to.  I found myself nodding and uh-huh-ing a lot, so I shared it on Facebook.  Several people commented on it, and a few others shared it themselves, so I figured it might be blog-worthy. In addition to sharing the article, I wrote a few of my own comments.  They are in red so as not to confuse anyone! ---- About 6 million kids in America  receive special education , according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness. My 3 year-old son Jacob is one of them. He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 4...

I'm a wear-your-shoes-until-they-fall-apart kind of a girl.  My sister, the shoe queen, hates that about me.  She also feels like I take the comfort over style idea to the extreme and has banned me from buying anymore Crocs or Sketchers for work.  :)  So when my trusty Crocs finally died on Monday morning when I put them on to go to work, I put on my brown loafers only to find that walking in the snow we had that day wasn't so wonderful because the holes in the soles caused my socks to be soaked!  Since both of my go-to shoes were now in shoe heaven,  I caved and decided it was time for some new ones.  I think my sister cheered. So we all drove the hour and 15 minutes to the "big mall" (yes, we live that far away from one!) and I actually found two very cute pairs in one store.  They would have been Amy-approved, too!  :)  Despite the fact that they weren't cheap, Matt convinced me that it would be worth it since I wear them out anyway...

I ran some errands on Friday after I got off of work because I had a little time before I had to pick Caleb up from  MMO.  We needed some things at the grocery store and I had to pick up four more of the never-ending prescriptions from two different pharmacies.  (Why, yes, it is  that complicated!) While I was driving, I saw a little yellow helicopter lift off from the hospital, rise above into the sky above me, and take off toward Baltimore. My little yellow helicopter. Just like that, a flood of emotions came pouring back into my head.  I remembered that night so vividly:  the painful contractions that wouldn't stop, despite the heavy medications; the roar of the helicopter engine as it sputtered to life; the naive, excited squeals of a three year old boy who had no idea how much his life was about to change; the fear that gripped me during that 20 minute ride that seemed to take 20 hours; the calmness of the very capable flight nurse; the song "I ...

Caleb has wanted footy pajamas so that he can slide down the stairs really fast, because Matt told him that's what he used to use as a kid.  There's only one problem...Caleb hates footy pajamas!   Unfortunately, thankfully, these new pajamas are a little long and cover his feet just like footy pjs would.  OH good! I have to admit that I do love the squeals of laughter. :) Here are a few more pictures of his silliness. And yes, those are bright orange pumpkin socks he is wearing.  I think they match well with the Batman pajamas, don't you?

I haven't blogged about the drama we're currently dealing with, because I just haven't had time.  But to avoid keeping you completely in the dark (especially if we aren't FB friends), here goes nothing! I got a call on Tuesday afternoon from our insurance case manager (if you are a challenging case, they give you a case manager.  That's how you know you're a red flag!) and she told me that our nursing is going to be cut off at the end of February.  When I asked why, she told me that she was told that since Abby had a chronic condition and wouldn't get any better , they couldn't just keep paying for nursing indefinitely.  There are a whole lot of things that frustrate me about the situation, but especially that the medical director at the insurance company is off-handedly labeling my child as one who won't get any better...as if she is comatose in her home hospital bed.  No one from the insurance agency has ever met or even seen a picture of Abby....

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 have realized in the last week that my life is anything but boring.  While most people are lounging around in their pjs this week between Christmas and New Year's, snacking on cookies and eating leftovers, I have been making trips to the hospital, calling case managers, nursing agencies, and specialists, packing and repacking my emergency bag, washing tons and tons of clothes with bodily fluids on them, and trying to make it up to a boy who was without his parents for several days over Christmas break.  On Thursday, I went out to the freezer in the garage to get something for dinner.  I opened it and noticed that the frost collected on the side was gone.  Hmmmmmm...I felt the chicken on the top...soft!!!  OH NO.  Yes, my friends.  Sometime between Christmas Day and the 29th, the circuit that our freezer is on had tripped.  We're not really sure how it happened because we have a whole-house generator and this has never occurred before....

"You look tired," says the unassuming clerk at the grocery store to the mom with two kids.  One, a bouncy little girl with golden curls, rides in the car in front of the cart while the other, a boy of maybe two, stares blankly into space in the front basket, supported by the blankets on either side of him.  His tongue escapes his mouth a bit and there is a little drip of drool on his chin.  A plastic tube protrudes from his neck, and he makes a noisy sound each time he breathes. "Tired?" the young mom shakes her head and chuckles.  "Yes, I suppose I am tired.  I'm tired of my son's life having to be so hard.  I'm tired of every achievement finally coming only after months of therapy and exercise.  I'm tired of the looks that other people give the son that I love so much.  I'm tired of the stares I can feel even when I'm not looking.  I'm tired of the rude and insensitve comments people make.  I'm tired of...

I was recently asked, "What do you do all day now that you're only working part time?"  Yes, it was a serious question. Lest you think I sit at home lying on the couch watching soap operas and eating bon bons, let me fill you in.  I work, during a typical 5-day work week, 17.5 hours.  My schedule changes every week, but just for kicks, let's say I'm working Monday, Wednesday, and half-day Friday. Monday:  Relieve nurse at 7.  Work 8-3.  Come home, get report from nurse, make dinner.  Feed Abby, do therapy, play with Caleb, bedtime routine, trach-tie change, make milk, empty or run the dishwasher (it has to be run at least once a day!) wait up for nurse until 11. Tuesday:  Relieve nurse at 7.  Matt is gone early for a Bible study.  Nurse comes at 8.  Take Caleb to school at 8:45. Run errands.  Clean. Watch my niece (which I love!) while my sister volunteers at her kids' school.  Pick Caleb up at 12:40....

...hearing people's own stories of learning to choose joy in tough situations ...beautiful transparency in a friend's September 11th blog ...listening to Caleb greet Abby with a sweet, "Why, helloooooo there, little lady!" every morning when she wakes up ...the color of Abby's room ...feeling the cool, crisp September mornings when I walk out the door ...hearing some of the happy endings of September 11th ...the movie Grown Ups (very funny, and not overly vulgar!) What are you lovin'?

*  Abby's first birthday and all it stands for *  September 11th and the harsh memories it will bring back for so many people on this 10th anniversary *  The opportunities we've been given recently to share publically Abby's story and the miracles performed in her life (more on that to come!) *  Sadness for friends who have had major damage to their houses as a result of the hurricane and flooding *  The fact that this is Caleb's last year "home" before he starts kindergarten.  UGH! *  Nursing drama, as usual... *  How much our lives have changed in the last year There was a time when the most important thing on my brain was the outfit I would wear to the school dance....

Recently, I've had several different people ask me why we need nursing and what it is, exactly, that I do all day. This wasn't meant to be condescending or accusatory; these people truly didn't know.  I realized then that my day-to-day may not be as obvious as I thought it was.  I don't really blog about that kind of thing too much...honestly, because I can't expect people to understand.  So, I figured I would share what a typical day is around here.  (Of course, this is on a day when we're not going to the doctor!) The short reason for why we need nursing is that Abby needs 24 hour observation.  Without nurses, I wouldn't be able to do anything but take care of Abby (as you'll be able to see below!)  We wouldn't be able to sleep at night and I wouldn't be able to go to work....or have insurance. I also realized that not many people know that I can't drive alone with Abby.  A trained person needs to sit in the back seat next to Abby to ...