Life as a Leach

I turn my back for ONE minute.... ...and she's reorganizing the supply cabinet!  It gave me a good excuse to go through it though, so we now have a much neater more organized cabinet.  Thanks Abby! In other news:  I found a flavored tongue depressor while I was cleaning out, so I opened it and gave it to her.  To my surprise, she sucked on it!!  (This being the girl who doesn't put ANYTHING in her mouth!)  So then, I got one of the cold teethers from their freezer container, and low and behold, she sucked on that too!  Dare I say we have turned an oral aversion corner???

Aren't they the cutest, STANDING and playing side by side?! I feel like Abby is now developmentally able to keep up with Anna, and it's fun to watch the two of them interact.  They loved playing in the beans together. Anna can't just take the toy and run away anymore, because Abby will go after her! These two chased each other around the kitchen, living room, and playroom with their respective walkers and baby doll strollers while Caleb kept a running commentary.  He decided they were racing and was determined to help Abby win!  The whole scenario was hilarious!   I wish I could have filmed it, but I was too busy making sure little girls didn't knock each other down!

Congratulations to Jill W. for being the winner of our caption contest.  Matt loved her quote, "I don't always wear hats, but when I do, I'm sure to wear Hats for Hannah" for the pop culture and blog references.  (If you don't know the reference, it's a Dos Equis slogan.) There were a lot of good ones though!  Here are a few honorable mentions: I didnt want to put you in the backpack Caleb but you left me no choice! That will teach you to mess with me.........now where are those legos!!!!! ~Barbara O. And just why do you think I should be excited about us going for a hike? ~Darryl S. (not rigged, I promise!) I’m going to school with Caleb today whether you like it or not! ~Linda S. Thanks to all who entered!  I promise I won't let as much time go by this time before the next caption contest.  :)

I'm way behind on posting this, but I have some fabulous news to share, in case you didn't hear it on Facebook...WE WON OUR APPEAL!!!  I was shocked that we found out as quickly as we did, considering they said it would be closer to a month and we found out in a week.  Apparently, the third party arbitrators deemed it so obviously in our favor that there was no need for them to mull over it any longer!  We're approved through May, which is when we would be up for reevaluation anyway.  We're hoping that they will move onto someone else and leave our family alone, but we'll see.  For now, we're covered!! Abby is pulling up on stuff like a champ now and has officially met all of her physical therapy goals that had been set for her...which were meant to be met by April!!  Go Abs!  We're going to meet to write new goals, since there's no rest for the weary around here. :)  Next up:  walking on her own! My parents are fostering a new Boxer nam...

Abby got an adorable custom-made hat the other day, thanks to Andrea, the owner of Hats for Hannah.   You can also find Hats for Hannah on Facebook and Etsy .  If you aren't interested in a hat, you need to at least go there and read the story.  This sweet girl is so genuine and kind.  I love how she is taking an extremely difficult situation and turning it into something beautiful.  For the record, this is the first hat Abby has kept on for more than 27 seconds.  I think she likes it! By the way, Abby isn't off to school or anything, although it looks like it in this picture!  The backpack holds her feeding pump and bag.  We've started having her wear it during feeds instead of just sitting or hanging it somewhere.  She's way too mobile now to have to sit in one place for 30 minutes, so the best way to let her keep on movin' is for her to wear the backpack.  She's not in love with the idea, but she's becoming resigned to it  mo...

My niece's kindergarten class discussed Martin Luther King right around his birthday and they wrote our their own "dreams."  Most kids dream that they will grow up and be firefighters, or that they will get the bike they've been wanting.  This little girl's dream was so kind and thoughtful--and she is so wise beyond her years!  She is so gentle and loving with Abby. My sweet Sara's dream: And the close up version, just in case you couldn't see it... She dreams that her cousin Abby will walk.  Don't we all, Sara Bear!  Wipe your eyes, now!  It's gonna happen!! Abby and I had a discussion about this tonight and we both agreed that it will be happening very soon.  In fact, she has already started practicing letting go of me in an attempt to stand on her own.  It's not working quite yet, but it's progress!  :)

For a long time, the kids just loved to play with the Legos!  I think they would have been perfectly happy if they had just played with the the entire time. We played "Pin the Spot on the Lego." Not everybody played this, but the ones who did loved it!  They had to pick up as many Legos as they could using only chopsticks (any way they could) in a minute.  Happy birthday, Caleb! The kids seemed to enjoy their cupcakes and other treats. Caleb got a ton of Lego and Star Wars stuff, so he was one happy boy! Caleb deemed this the best birthday ever.  I'm glad he had a good time, but I think maybe I should quit while I'm ahead!  :) He's already planning his next birthday party...an art party where kids paint different wooden and ceramic things with a painter's palate as the cake.  Yes, ladies and gentlemen, this was all his idea.  He does have a few of my planner genes...

Remember the zebra Abby got for Christmas that she was terrified of? Well, she's decided that it's pretty fun after all.  :)

I have some great Lock and Lock products to give away, so I decided to do the first of several caption contests.  The rules:  Come up with a caption for this photo. Then submit it either on Facebook (underneath of the Networked Blogs post), by leaving a comment on the blog under this post, or by emailing me at juliebleach@yahoo.com .  You can enter as many captions as you like!  The winner will be chosen anonymously by a non-biased third party.  Translation:  I'll read all of the entries to Matt and he'll choose one without knowing who it is.  Since you know Matt has the final choice, remember that he loves stupid humor and when the caption is tied to other things that I've talked about in the past on the blog.  So be creative!  :) The winner will receive their choice of either a Hot Tank Vacuum Bottle  or a cosmetics holder .   Both are brand new! The winner will be chosen at 9:00 p.m. on ...

Caleb's favorite character from The Chronicles of Narnia   :) Oh, and by the way, that's not Darth Vader breathing in the background...just Abby!

... I very nearly lost my girl.  It was at this time exactly.  And I'm very, very thankful that I didn't!  A few things have changed since that post... ...I'm much more confident in myself as Abby's caregiver now than I was when that happened, just a week after we first brought her home!  I'm such a different person now than I was a year ago. ...The nurse who was a "keeper" turned out to be a "fire-er."  She was the first of 11. :o/ ...We haven't gone back to our local hospital since that day, choosing instead to drive straight to JHH whenever we've needed to go to the ER.  Unless an ambulance is necessary (like it was a year ago), this is what we will continue to do.  JHH knows Abby, knows trachs and vents, and knows complex medical conditions.  Amen. ...We've gotten to know the nurses in the IMC pretty well!  I don't know if that is a good thing or not... I've mentioned it before, but it's hard to describe the...

Roe v. Wade is certainly a court case that stands out in the minds of most.  It's the one that ultimately legalized abortions in the United States.  This is my anti-abortion post.  You've been warned. I have always been Pro Life, but I never understood the sacrifice involved in that proclamation until July 22, 2010.  That was the day (3 months to the day before her birthday!) that Abby was diagnosed with Pierre Robin's Sequence in utero.   It was also the day that we were first faced with the question of medical termination.  We very quickly said that we would take Abby any way that God would give her to us, and that we didn't want to discuss it anymore.  The doctor respected our wishes and never brought it up again.  At the time, I couldn't believe that he would suggest such a thing over something as minor as PRS.  It can seriously be nothing more than a small jaw, and there are often no other medical complications.  A child might h...

Unfortunately, the MD Insurance Commission isn't able to help us because it doesn't have jurisdiction over our policy.  It's a private policy owned by the school system.  We're now working with the MD state attorney's office and have filed a complaint with them.  The woman I've been in contact with seems to really know her stuff.  I hope she'll be able to help. Right now, we are in a bit of a holding pattern because our appeal was sent to third party arbitration.  While I wish the appeal had just been met with a quick of course we'll approve your nursing, you sweet, hardworking people! kind of an answer, at least it wasn't a big red DENIED stamped on our file.  The state attorney's office has collected all of our information, but is waiting until we hear back from arbitration before they officially "begin" the case.  Arbitration could last up to a month....which will take us almost to our deadline.  Here's hoping it's done q...

She has a few more signs, but this gives a good taste of how well Abby is learning to communicate.  She's pretty remarkable!! Please note:  Abby's signs may not be exactly what the "real" sign is.  We model the correct way, but take whatever she does consistently for a certain word.  We figure we'll fine tune it later.  :)

For the plates, I got yellow square ones off of Oriental Trading with a Black Friday free shipping deal.  Woo hoo!  :) I then made little Lego bumps (like on the Lego heads) for each one by cutting up a yellow plate and gluing the small square on the back of the plate. I finished up by drawing different faces on each plate, which entertained the kids to no end!  These are the finished goody bags hanging up in the party room (which cost me only $25 and it was worth EVERY penny not to have it at my house!!) I should have taken step-by-step pictures of the marshmallow pops, but I didn't.  I bought the extra large marshmallows and the pop sticks.  Then I dipped each marshmallow in yellow Wilton's chocolate drops.  I needed something for the little nub at the top that wouldn't bleed onto the rest of the head (like M&Ms do), so I cut off the top of a candy corn (the yellow part) and stuck it on top of the pop immediately af...

Abby decided today that she didn't need our help walking with her walker anymore.  She stood up at it and just took off!  We were both shocked that she just decided she could do it by herself after she'd been so timid. I have to say, I got kind of emotional seeing Abby do this for the first time.  Although I know she will walk eventually, this is the first time that she has proven she can be independent.  Even if she never walks, she can at least move with a walker.  This is HUGE for her! This 14th month (yes, tomorrow my girl will be 15 months old!!) has been really great for Abby's development.  In the last month, she has gone from knowing only one sign consistently to knowing 12.  She really studies our hands when we sign and tries to mimic what we do.  Abby has learned how to crawl this last month and is successfully getting into everything now!  And now, right at the back end of the 14th month, she can officially walk w...

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use.  At any rate, I wanted to share what I did for the party!  It will take a few posts, so stay with me.  I'll start with how I did the favors. These are the goody bags I made.  I just bought solid colored gift bags and matched scrapbook paper to each bag.  Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks.  I put a round magnet on the back and...voila!  A magnet!  (note:  hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons.  Yes, I know this guy has lost half of his leg.  The others were already packaged and I didn't want to open one up just to get a picture.  I used a Lego mold  to make the cray...

Just so you know...we're still waiting for the decision regarding our appeal.  Our case manager said we should find something out by the end of this week, so I'm really hoping we do.  I've pretty much stopped being worried about it, because worrying won't help anything.  I'm just trusting that God is in control of this.  I know He won't abandon us and I really don't think that he wants us to be exhausted all of the time, so I think that something will work out.  Remind me of this at the end of February if we still haven't won our appeal!  :) So that's it...no news is good news, for now!

Yesterday, I had the incredible opportunity to speak at a medical conference that focused on pediatric palliative care. In case that's a new term for you (it was for me too, until we needed it!), palliative care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. One thing I think that is important to note is that palliative care does not equal Hospice care or end-of-life care!  I think, too often, people think you need palliative care when the child is terminal.  Not true.  Exhibit A  :)  : My role at the conference was to be part of a parent panel where we shared our stories, experiences with doctors and medical staff, and the meaning we discovered as a result of our experience.  There was a lot of discussion throughout the day about...