Life as a Leach

Read and Watched

2012-02-17T08:00:00.000-05:00

Read

I just recently finished a great book called that was absolutely amazing.

No spoiler alerts here, but it's about a former Olympic runner who was captured by the Japanese in WWII and became a POW. While it is terribly difficult to read at some parts, the theme of unwavering hope and courage is prevalent throughout the novel. He truly never gave up.

This book isn't a #1 best seller for nothing! It is definitely worth the read. I flew through its nearly 500 pages in a week...and I don't have a lot of time to read!!

Watched

Caleb earned a movie night by earning all of his magnets for three days on his daily chart, so we finally rented Mr. Popper's Penguins.

He had read the book with Matt (one of Matt's favorites as a kid) and had really been looking forward to the movie version. Warning: it is nothing like the book!!!

That's not a bad thing, but something you should know up front. The similarities end with the names of the dad and the kids...and the fact that there are penguins. It is a really cute movie with really nothing questionable, although it is rated PG. We felt very comfortable with Caleb watching it and never gave each other the uh-oh-maybe-this-was-a-bad-idea glances over his head! Caleb loved it and had quite a few laught-out-loud moments! It's a great family movie.

Vote for Caleb and Abby!

2012-02-16T20:00:00.000-05:00

I have entered a photo contest sponsored by MOPs (Mothers of Preschoolers). I included 3 different photos of Caleb and Abby, so please vote for them...you can vote up to 5 times a day! Thanks! :)

Emily

2012-02-16T08:00:00.002-05:00

Emily is a 17 year old who has been such an inspiration to me in the last two weeks or so that I have had the pleasure of knowing her! You see, Emily has CCMS...you know, Cerebrocostomandibular Syndrome.

And she is 17!!!

I have really enjoyed getting to know her story and emailing her mom. With Emily's permission, I wanted to share the blog she just started about her journey with CCMS. I hope that you will check it out and give her some blog love!! She is a lovely girl, and I hope that we will be able to meet face-to-face one day. Until then, I will happily read her blog with tears in my eyes. :)

Giveaway!

2012-02-15T20:30:00.000-05:00

Little Mozart has discovered the piano!

This girl LOVES music. She dances and claps to any kind of music, and really enjoys the piano. Her favorite song is "Little Red Wagon" by Raffi. She starts bumping up and down as soon as you start singing it!

As a fun giveaway to celebrate 200,000 hits, I want to hear about your favorite songs! Simply leave a comment here, on Facebook, or through email sharing your favorite song, the name of the writer/band, and a short little statement about why you love it! You can enter up to 3 songs! Just post each entry separately, because I'll be numbering all of the entries and having Caleb choose a number. Multiple songs in one comment will only be counted as one entry.

As a bonus, you get an extra entry if you link this giveaway to your own blog or Facebook page! Just write in a comment that you did so. (You can get an extra entry for each one if you put it on your blog and FB page!) :)

All entries must be in by Sunday night at 7 p.m. Caleb will choose a random number at that time, and I'll post the winner later that night!

The winner will receive several exciting Lock and Lock gifts, including a set of Hello Bebe food dishes, a set of EZ Lock round containers, a set of EZ Lock rectangular containers, and a cosmetic case. * Woo hoo!! :)

** Please note that I am a Lock & Lock supporter and get these gifts as a thank you for blogging about the products.

I can't wait to hear some of your favorite songs!!

Need a Little Inspiration?

2012-02-15T08:00:00.003-05:00

I love this picture. Look carefully at the wall! This is the photo I use for the Rare Love icon on Facebook.

I'm a big fan of this one too. :)

And some days, this is my mantra!

Conversation Hearts for Special Needs Parents

2012-02-14T20:00:00.000-05:00

I thought these were pretty funny...beware a tiny bit of language!

200,000!!!

2012-02-14T13:00:00.000-05:00

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!!

Stop the Word

2012-02-14T08:00:00.001-05:00

The "R-Word" (used to describe people with intellectual disabilities) is very offensive to me. Way before I was blessed to have Abby in my life, I hated the word. And I've said that before.

I came across this blog post, which is one of many I have enjoyed from Love That Max. Ellen's writing is real and from the heart. She also has a whole lot of courage to do the Twitter experiment she did! I am too worried about getting people mad at me, but she showed a lot of guts!

If you're an "R-Word" user, it would be an awesome Valentine's Day gift to the millions of children and adults with intellectual disabilities (and those who don't, but people assume they do because they're in a wheelchair, on a ventilator, etc.) if you'd consider a different word.

Thanks,
From a mom who hopes the term is never aimed at her daughter.

Does Blogging Creep You Out?

2012-02-13T08:00:00.002-05:00

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 dangers of the internet is because it is so utterly clear to me that God is using my blog to reach people. I love connecting with others and it puts a smile on my face when I get an email thanking me for encouraging them. It is reassuring to know that God has a reason for putting us in this place and is using our challenges for good.

No, nobody commented about me putting my life out there for all to read, or that public blogging is dangerous. If they're thinking it, they're not saying it! :) It's just been something I've been pondering recently, and I actually think it's kind of funny that a worrier like me is not worried about this!

So while I am aware of the dangers and could certainly make my blog private for-my-eyes-only, I prefer to allow God to lead this blog in the direction He chooses. After seeing where He has taken it in the last year (I certainly never thought I would be guest blogging on other special needs blogs, that's for sure!!), I know that He will continue to lead me. I'll save my worries for other things...like germs!!! :)

Calebisms

2012-02-12T08:00:00.002-05:00

Caleb is going to help me make chocolate pudding (for his writing practice!). He comes into the kitchen with his goggles on. When I ask why he's wearing them, he replies quite seriously, "Well, you never know when something might fly up and hit you in the eye. Safety first, Momma. Safety first."

-------
Caleb: (When Abby throws a toy at him because he won't let her play with the one she wants): Don't throw things in anger, Abby! (voice of experience)

-------
Caleb: (in a sing-song voice to Abby): Well, good morning, cutest little baby in the world!

-------

Me: Okay, Caleb, what do you want your next reward to be for getting all of your magnets for 3 days on your daily chart?

Caleb: Hmm...I know!!!! A trip to Disney World!!!!!! (his last reward was a movie night at home...)

Random Thoughts

2012-02-11T20:40:00.003-05:00

* The eye drops used for Pink Eye are pure torture for both the parents and the child! If that isn't motivation for constant handwashing, I don't know what is. I was positive I was going to get a visit from Child Services tonight based on the screaming I am sure the neighbors could hear coming from my house.

* I'm getting close to 200,000 hits! I'll do another giveaway when I do... :)

* We're going to the Melting Pot tomorrow for an early Valentine's Day dinner. Can you say food coma?! It takes a crazy amount of planning to get to go out by ourselves (and we had to change the date once!), so this is very exciting!

* I passed my English as a Second Language Praxis exam, which means I am now certified. Huge sigh of relief!!

* Whitney Houston died today. She had issues, but she was one heck of a singer!

* Matt was gone all day and all night today. Usually when this occurs, I try to plan a play date or have something to break up the day, since I'm homebound. That didn't happen today, so it was Operation How-Many-Creative-Activities-Can-I-Plan-in-One-Day! We built a space ship out of cardboard boxes (thank goodness we got a supply delivery yesterday!), had an indoor snowball fight, made Valentines, dug in the bean bin, and played with lots of Legos! We made it!! :)

Pudding Playtime

2012-02-11T08:00:00.003-05:00

Caleb has been working on his writing, but not with old fashioned pencil and paper!

We've been using Cool Whip and chocolate pudding,

which double as great textures and tastes for Abby to try.

I think it's safe to say that it was a hit!

And Caleb even did some great spelling practice, spelling and writing words like cat, bat, and bed.

He has officially declared himself The Master of Words.

I pray for his future kindergarten teacher! :)

What They Didn't Say

2012-02-10T08:00:00.002-05:00

Those first few terrifying weeks of Abby's life, the doctors told us an awful lot of information. They told us that Abby's chances of getting out of the NICU were very slim. They gave us lots of statistics that showed us the odds were stacked against her.

They pointed out every little physical imperfection on her body, from her ears, to the bridge of her nose, to her fingers. They discussed life expectancy, pediatric hospice, and DNR orders.

They told us that she would never sit up, much less walk, but offered assistive technology to make our day-to-day easier.

They were quick to set our expectations straight by informing us that she wouldn't be much more than a vegetable, if she lived.

But there was a whole lot the doctors didn't say.

They didn't say that Abby is so much more than a statistic.

They didn't describe the look of adoration that would glisten in Abby's eyes as she signed "I love you."

They forgot to mention that she would, in fact, sit up...and crawl...and walk. They never said that she would do all of this in her own time because she's just that stubborn!

They never once mentioned that the stubborn streak that she inherited from her momma has made her quite a fighter.

Nobody ever really told us how difficult home nursing could be--or how wonderful it would be once we got a team of nurses who genuinely love and care for Abby (and our family!) I don't remember anyone telling us that the therapists who would work with Abby would become friends whom we would trust and whom would be some of Abby's biggest cheerleaders.

They didn't say how she'd follow her brother around the house, tormenting him, or how fiercely he would love her.

They never said that we'd have such a supportive group of people following our little blog and celebrating Abby's every accomplishment. They didn't know that there would be times when the comments people left on the blog got me through a particularly emotionally draining day.

They didn't tell us that Abby's smile would light up a room, or that she could control the world with the simple "more" sign.

They didn't say that her beautiful, thick brown hair would curl in sweet little ringlets in the back.

They didn't tell us how our journey would expand our vocabularies until we both feel like we've been through a few years of medical school. They didn't say that words like decannulation, gastrostomy, and kyphosis would be every day terms. They didn't do much to assure us that there really is life after a trach and a vent, and that we really would become pros at all of the medical equipment.

They didn't realize she'd love to go through the cabinets and make a mess faster than I could clean up after her.

They didn't tell us how fast I would cry when singing You Are My Sunshine.

They just didn't know how much she would change our lives, or how she'd bring us closer to each other and God. They didn't know that our God is a God of miracles, and that He would be performing quite a few in Abby's little life.

They didn't know Abby.

Thankful Thursday

2012-02-09T08:00:00.000-05:00

I'm thankful for a husband who loves his kids and makes his family his priority. The end.

* I really would take pictures of Caleb...if he cooperated! Most of what I take is of him fussing about him getting his picture taken, so the photos turn out just lovely. I should post them anyway, as proof that I do photograph him.

2-for-1 Deal

2012-02-08T22:34:00.001-05:00

We took Abby to the doctor this afternoon for a goopy, draining ear. The other one started up while we were at the doctor's office! Yup, double ear infection!

In the elevator going to her appointment, I noticed redness in Caleb's eye. One look at it and the nurse offered to pull his chart too. Yup, pink eye!

No, I don't have a dirty kid!!! Pink eye runs wild and is extremely contagious. Who knows where he got it, but I hope his two preschools don't have an epidemic. :(

Our awesome pediatrician gave Abby an antibiotic that will cover both the ears and any eye infections, so hopefully, she won't get pink eye. She has the typical ear drops as well, so we're hoping to get rid of it quickly.

Side Note: Abby never had an ear infection until she got tubes. Since the end of September after her surgery, she's had 4 infections. I think we were better off without them!

3 prescriptions and 2 extra-needy kids who both just want their Momma later, they're both started on their medicines and hopefully on the mend.

By the way: who ever thought eye drops for a 5 year old was a good idea????? Oh. My. Goodness. Matt wasn't home to "enjoy" the medicine dispensing tonight, so I literally straddled Caleb, tucked his arms under my legs, and held his head between my knees to put the drops in. It was the only way. Seriously.

Pure torture.

Probably for him too.

:)

Wordless Wednesday

2012-02-08T08:00:00.002-05:00

It's Time!

2012-02-07T08:00:00.000-05:00

...to lower the crib!

We actually lowered it a few weeks ago, but I'm a little slow sharing these pictures.

She thinks she's pretty hot stuff jumping up and down, but she also kept trying to play with her vent (thereby nearly flipping out of her crib!)

So DOWN went the mattress!

Now the stinker can safely stand to her heart's content.

Cerebrocostomanidbular Syndrome...Number 9

2012-02-06T21:25:00.000-05:00

9.

That's how many kids there are with CCMS (that we know of) living in the world today.

One more was added to our little count today when a mom found me during a Google search. Her 6 (SIX!!!) year old daughter has CCMS, and she hadn't looked for new CCMS info in a while. Why should she? When you're living in Rare Disease World, you know everything there is to know about it...you're the expert.

But, she was led to do a little search, found me, and sent me an email! Hooray!!!!

I won't give away personal info about this little girl, but I will tell you one fabulous piece of info:

She plays soccer.

And she takes dance lessons.

Okay, that was two fabulous pieces of info. But I had to tell you both of them because they are HUGE to us!!!

Soccer! Can you imagine Abby running on the field, kicking the soccer ball with her curly brown pig tails bouncing? It's funny...I never could before, but now I can. (Okay, I really picture her sitting in the grass picking flowers in the field while the rest of her team kicks the ball around her, but maybe that's just my lack of athletic ability coming out!)

And dance!! I was a dancer! I had all but let go of that dream of taking my girl to her first dance class and teaching her how to tap. But maybe...

And SIX YEARS OLD!!!!! When you deal with a life-limiting illness, six years old suddenly becomes a long and fulfilling life. We're thankful for every minute.

So thank you, CCMS Momma, for giving me an extra glimmer of hope today!

Batman and Batgirl

2012-02-06T08:00:00.000-05:00

Caleb really wanted to have matching pajamas with Abby, so his Grammy (Matt's mom) made some for Christmas! Now Batman and Batgirl can fight the bad guys in their dreams. :)

PS: I don't know why my pictures look so distorted. This happens whenever I "save" them in my editing software, even if I don't actually edit them. If you have an idea how to help, I will take any suggestions!!

Snuggling

2012-02-05T21:47:00.000-05:00

Abby has claimed my old teddy bear as her own.

I tried, in vain, to capture the adorableness of this moment!

Little Bit of a Blogger's Block

2012-02-04T21:21:00.000-05:00

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! :)

This is Not a Political Post

2012-02-03T08:00:00.000-05:00

I am not saying that I am backing Santorum by posting this. I really don't know where he stands on most of the big issues, so I am not in a position to do that right now. Regardless of his politics, he seems like a very genuine man who is in love with all of his children! This article and video were emailed to me, and I LOVE the way his sweet daughter Bella is portrayed. You can watch the video below:

**I also just read that Bella is recovering in the hospital from double pnemonia. That's a difficult illness for an otherwise-healthy child, but especially grim for a child like Bella. Please pray for her!

Developmental Update

2012-02-02T08:00:00.000-05:00

I haven't written a post specifically about Abby's developmental updates recently, so I figured I would share all of the great things my girl is doing these days! Warning: this is lengthy! :)

Gross Motor
* Abby is crawling all over the place now, and is especially fast when she is heading toward something she shouldn't have. I have to practically run to head her off sometimes! She crawls with her head down, so she often runs into stuff and then looks up like, how did that get there? It's pretty funny.

* She is crawling up the stairs now, so the baby gate is officially CLOSED all of the time!! She can go up all by herself, although she hasn't done the whole flight of stairs yet. We're working on going down. She thinks it's really funny to pull up on the step and then trust fall backwards with her arms spread out. I guess she knows I'm going to catch her! I don't think I should let her learn that one the hard way...

* As you may have seen last week or so in a video, Abby walks really well using her walker or a baby stroller--but the baby has to be in it! She refuses to take a step if the baby isn't in the stroller. :)

* She's starting to get brave with letting go of our hands. We regularly encourage her to walk just holding one hand, and she has recently started letting go for a few seconds by doing what I call a "controlled fall." (She lets go and then falls into me, putting my hands on my shoulders.) It's slow, but it's progress.

* Abby cruises along the furniture now and can pull up/plop down on her own all of the time...much to Caleb's chagrine. It was amazing how well they got along with Abby was a sedentary baby...

Fine Motor
* Abby can take things out of a container and then put them back in. She cleans up really well!

* She has started to explore different textures more and likes to play in the dry bean bin and pop bubble wrap. I have been trying to expose her to lots of different textures because she has had some sensory issues (specifically with her hands), and she is slowly warming up to the idea. The bath foam is still her enemy, though!

* She is learning how to control her hands enough to scribble a bit with a crayon. While she doesn't do it for very long, she is more willing to try each time we give her one.

* Abby is becoming more agreeable to finger paints, although she still won't dip her fingers in it on her own. It's a work in progress!

* We've been using a brushing technique to help with some of the sensory issues, and it really does seem to be helping. I was skeptical at first, but she is much less against us holding her hands and feeling new textures.

Speech
* Abby's signing has exploded in the last month! She not only has 12-15 signs that she consistantly uses, but is also mimicing pretty much any sign we do. Naturally, her signs aren't exactly like they should be, but we can fine tune those as she gets more hand control. For now, we are ecstatic that she is communicating so well! She shakes her head yes or no quite emphatically when she has a strong opinion on something!

* She is becoming more tolerant of the Passy-Muir Valve and can wear it for as long as an hour. She doesn't like it because she has to work harder to breathe, so it's a fine line between pushing her and recognizing that she needs a break. It doesn't help that she starts signing off almost as soon as we put it on! Her voice is getting a lot stronger and she's pretty loud when she wears it.

* She is mimicing a lot more sounds now, too. While she hasn't figured out how to form her lips and open her mouth, she is definitely attempting sound a whole lot more. This is one of the frustrating parts about having a child who was trached (basically) from birth, because she never had the opportunity to learn how to speak the typical way. We do a whole lot of mimicing!!

* From her speech testing last week, we learned that Abby's receptive language is spot-on where it needs to be, which says a whole lot for her cognitive ability! She understands exactly what we are telling/asking her! Whether or not she does what we ask is a different story... :)

* Abby is definitely learning how to use her voice to get our attention! If we aren't paying enough attention to her, she'll let up a loud squeal as if to say, hey, I'm still here people! She also smacks our legs and arms to let us know she needs something, and she has even been known to grab your face and turn it toward her if she's really not getting her way!

* Just in the last week, we've really turned a corner in the oral aversion journey. She is eating a lot more now, and we give her as much as she is willing to take. I've been trying to give her tastes of lots of different things to increase her exposure to flavors. Of course, we're still doing only pureed foods, but we have been able to increase that recently. She has also decided that she loves lollipops--who doesn't?!--and will happily suck away at one during dinner. Of course, then it's bath time because her hair, face, and hands are all sticking to each other, but she's enjoying herself! :) This last week has also been the first time that she has willingly chewed on a cold teether. I was shocked when she not only took it (historically, it's been the cause of a hand-flapping meltdown!), but then chewed on it for over an hour! PROGRESS!!

I hope that this gives you a glimpse into the "real" Abby. I always smile when people say, wow, she does so much in real life! They're shocked that she does little things like wave goodbye or blow kisses, but she does so much more than that! I can't wait until the spring when we can emerge from our bubble and be amongst people again so that you can see how awesome she is! For now, videos, pictures, and lengthy updates like these will have to suffice. :)

Lock and Lock $1 Shop

2012-02-01T20:16:00.000-05:00

Lock and Lock's $1 shop is back and there are definitely a couple of things worth checking out!! They are already selling out of items, so go quickly! The sale is going on until February 6th.

One thing I noticed was this salad bowl, which is a nice lunch size (for a lot more than salad) or for storing leftovers.

Another good deal is this water bottle. I have gotten these before and they're really nice! I used them as part of Caleb's teachers' gifts (paired with a lunch bag and some treats.)

My mom uses this water bottle all of the time! It has a cover and then a screw cap, so it's not going to leak on you.

You may not be able to think of a use for this at first, but I love mine! It is the perfect size to hold a cupcake, onion, tomato, green pepper, or other roundish vegetable! I use it a lot, and $1 is a good price for it!

I use these little round containers all of the time!! I put salad dressing in them, pack some goldfish for Caleb, put earrings in it when I travel...the possibilities are endless!

Dinner

2012-02-01T08:00:00.000-05:00

I've got the shrimp sauteeing in my wok,

pasta boiling in the pot,

and chicken sauteeing in my ceramic pan. (yes, I scorched it once because I had the heat up too high...but it still works great!)

So what has become of all of my non-Lock & Lock cookware?

They are Abby's drums. :)