Tuesday, January 31, 2012

The Girl is a MESS!

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???

Monday, January 30, 2012

Abby and Anna

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!

Sunday, January 29, 2012

Caption Contest Results

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.  :)

This and That

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 named Bert who is such a sweet boy!  He's a real lover and Caleb is already head-over-heels for him.  Bert seems to feel the same, because he ran out the door and jumped in the car to leave with us last night! 






I'm on day 4 of a headache, and it is less than pleasant.  I've heard of this happening to people, but I've never had a multi-day headache myself.  Yuck!

The sibling rivalry has officially begun.  Abby loves Legos almost as much as Caleb does, which causes a lot of drama and time outs in our house.  I guess the honeymoon is over!

Finally, remember that the deadline for the caption contest is tonight, 1/29, at 9 p.m.  After that, our non-biased judge will select the winner anonymously!  We have had lots of funny captions so far on here and through emails.  Remember that you can post more than one!  Look for a post tomorrow announcing the winner!

Hats for Hannah

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 more tolerant of it! 

Saturday, January 28, 2012

I Have a Dream...

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!  :)

Friday, January 27, 2012

Lego Party: Games and Friends

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...

Thursday, January 26, 2012

Bouncin'

Remember the zebra Abby got for Christmas that she was terrified of?



Well, she's decided that it's pretty fun after all.  :)

Wednesday, January 25, 2012

Caption Contest!!

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 Sunday, January 29th.  Happy captioning!! :oP

Caleb's Ode to Reepeecheap

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!

One Year Ago Today...

...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 memory I have of that day.  The image of her lying there will be forever etched in my mind.  I have never been so scared in my life, and that includes the few days before Abby got her trach.  It was the most terrifying experience I've ever had because I thought I was watching my daughter die right in front of me.

But she didn't, and for that I am extremely grateful to God!  He gave us (my nurse and me) wisdom and quick-thinking on that day, and He got Abby safely to JHH where she was able to be treated by the experts. 

It's not something I ever want to experience again.  EVER.  The memories are still as fresh if they happened a day ago rather than a year ago.  But the same God who pulled Abby through that experience would be there if it happened again.

I'm soooo glad I can't see the future!  I would be a hand-wringing, comfort-rocking, nail-biting, nervous wreck!!!

Tuesday, January 24, 2012

Medical Termination

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 have a cleft palate, but that's about it.  Do people really consider abortion over such minor birth defects??  The answer, I found from some internet research, is yes.  Quite a few do. 

Now knowing what we know, I have a feeling that the doctor might have suspected that Abby's issues were more extensive than just a small jaw.  That may be why he brought it up, but I probably will never know. 

Would I have chosen medical termination if we'd known that Abby had CCMS? 

NO. 

I have always been Pro Life, but now I'm a Pro Lifer who has been face to face with a terrifying decision and has chosen LIFE for my daughter.  You can't truly be Pro Life until you've been there.

If I'd chosen medical termination, there would be no clapping when I come home, no cuddly hugs, no sweet kisses, no toothy grins, no Wild Thing headbanging into my stomach, no crazy hair in the mornings, no I Love You signs, no brother-and-sister-lovin', no hysterically funny temper tantrums, no bee-boppin' to music...and a million other things that I would be missing out on.

Maybe you're reading this and you have also faced that terrifying decision...and maybe you chose differently.  I'm not condemning you in the slightest bit.  I'm sure that it was a very tearful and difficult decision, and I'm sending you cyber-hugs right now!

Or, perhaps your reading this as a fellow Pro lifer...who has never had to face that terrifying decision.  I pray you never will. 

This post is for those of you who may have stumbled across my little blog because you're facing that same terrifying decision...and you're not sure what to do.  I won't lie; life with Abby isn't easy!  But it isn't boring either!!!  :)  You can do this.  God will give you the strength to face whatever it is He has given you. 

Choose life. 

Monday, January 23, 2012

Insurance Update

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 quickly and in our favor!

We're not going to give up.  The insurance company needs to realize how much danger Abby would be put in without a nighttime nurse.  I don't want to get a lawyer, but we will if we have to.  Here's hoping we don't have to.

Signing Time With Abby and Caleb

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.  :)

Sunday, January 22, 2012

Lego Party: Decorations and Food

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 after I dipped it in the chocolate.  I then drizzled a bit more chocolate over top so that it was all yellow and covered.  To keep the chocolate from hardening in a weird way laying on the plate, I stood them up in holes I poked in a tissue box.  It worked great!  When they were completely hardened and cold, I decorated each one with a different face and wrapped it. 

This Lego I used to display some of them was made out of a tissue box, which Matt sprayed with green spray paint.  I then punched green circles and attached them the same way I did the goody bags.


I had every intention of making a Lego cake.  But somewhere between the two hospital visits and the freezer breaking, I let go of that and just went for the brightly-colored cupcakes with corresponding Lego candy bricks.  And you know what?  I don't think the party was ruined because of it!


I displayed the rest of the Minifigure Pops in this container with tissue paper in the bottom (to help the pops have a sturdy surface.)  Then I filled the remaining space with Lego candy bricks.  I used it as a centerpiece.


I stopped doing a full meal last year when I was planning Caleb's 4th birthday party in the midst of a very stressful situation.  I figured that people would understand and be satisfied with cake.  And they were!  So...I have fully embraced the 2pm-4pm party and have never looked back!!  Serve cake, have a few snacky foods, ice down some drinks, and call it a day!  Since I didn't have to focus on making a bunch of food, I could focus a lot more on the fun of the party!!



The runner was a strip of bubble wrap that was spray painted green. 


Matt spray painted a few large boxes as well.  After a couple of coats, Matt cut down some cups and I hot glued them onto the boxes.  It really wasn't hard and made for cute decorations outside of the party room!


Caleb REALLY loved these boxes!  He was really excited about all of the handmade things we did for this party.  It was a lot of work, but well-worth it to see that boy's smile! 

Saturday, January 21, 2012

Movin', Movin', Movin'!

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 with her walker!  I can't wait to see what she'll be doing at the end of 15 months!!

Friday, January 20, 2012

Lego Party: Favors

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 crayons.  Caleb put small pieces of crayon in each mold (you can do rainbow or solid colors), and then I put them in the oven at a low 175 degree setting until the crayons were totally melted (around 10 minutes).  I put the molds in the fridge to harden, but make sure they are completely hardened before you try pop them out.  THAT is by far the hardest part!!  I decapitated quite a few minifigures before I got the hang of it.  If you're making minifigure crayons, push from the middle and bottom first.   



I found Lego coloring books on Ebay, and figured that I could make them for a whole lot cheaper!


I believe I had 10 different coloring pages in it.  I just printed them off of http://www.lego.com/ in their printable downloads section.


These were my favorite favor!  I saw this idea on Etsy and knew that we could do this!  I got the key chain materials at an excellent Black Friday deal at Joanne's Fabric.  I paid about $2 total for 20 of these keychains, and they sell for $3 each on Etsy.  I think I need to start selling them!  :)  Matt drilled the holes--without any drama, I might add!--and I put a little loop in and then attached the keychain to it.  All it took was a drill and a pair of needle-nosed pliers.  EASY!


Last, but certainly not least, what's a Lego party without the Lego candy??






Thursday, January 19, 2012

Insurance Update

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!

Wednesday, January 18, 2012

Palliative Care Conference

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 the importance of family meetings, which are meetings with all of the child's involved medical providers where they present information...and at times, bad news. 

We also did scenarios at each table (I was assigned to a table whose scenario was similar to my own experience), and we had great discussions about what should and should not be done in a family meeting.  One of the biggest things was explaining medical terms in a clear (but not condescending) way; don't assume that everyone knows was DNR stands for, or what a "code" is.  (DNR is Do Not Resuscitate, and a "code" is when someone goes into cardiac and/or respiratory arrest.  If I said something wrong, my disclaimer is that I'm not a medical professional...I just play one on TV!) :)

The keynote speaker did a great job of sharing the urgency of palliative care.  While excellent medical care is certainly important, palliative care allows those with a serious medical condition to feel supported.  The key is great communication between the medical professionals and the families! 

Given the nature of the topic, a good amount of the day also focused on end-of-life care and Hospice.  Therefore, I faced topics I haven't had to deal with in a while....conversations about DNRs, pediatric Hospice, and coding had become a distant memory.  It was very emotionally-draining, but in a good way.  It's good to be raw once in a while.  As strange as this may sound, this was a good reminder that we don't know how long we will have Abby, so we'd better make every minute count. 

It was so refreshing to be at a conference that not only welcomed parent input, but centered around it.  While palliative care is still "catching on," we're hoping that the momentum will grow now that so many people have been to the conference.  It's a process, but I think that they are heading in the right direction! 

I am blessed to have been a part of it.  I certainly never considered that my life would have taken this turn, but I have really enjoyed this blessing in disguise.