Life as a Leach

We headed home this afternoon!  We are all thrilled to be back under one roof for a few weeks.  We have added a few more treatments and I have lots of medical phone calls to make tomorrow.  But tonight, we are together!

I've been threatening to make my own laundry detergent for quite sometime now.  Matt has been less than thrilled, picturing stained clothes coming out of the dryer, never to be clean again!  My friend Stacy (the same Stacy who is doing the Thirty One fundraiser!) posted the recipe she has been using and shared how much she loves it, so I decided to just go for it. But then my local stores didn't have any of the ingredients I needed. Dagger. My equally frugal sister also decided to make her own laundry detergent, without us even talking!  She went to the Super Walmart and found everything we needed.  Score! This is SO easy.  I don't know why I waited so long to make it! Materials:  4 bars of Fels-Naptha soap, Arm and Hammer Washing Soda, Borax, and Lavender oil. Some people put a little baking soda in too, and some use the baking soda in place of the washing soda.  I didn't put any in mine...just the washing soda.  I think it's kind of ...

With all of these beautiful family pictures, I have been very inspired to do a little decorating around the house.  Here's a glimpse at our recent mini-projects: 3 frame in main hallway I love this Family Rules canvas that I found at Kohls! This is a wall art decal in our kitchen This is in our playroom Two pictures of Abby with my bracelet that I've had since she was born.  The verse below is the verse on my bracelet. This is on the wall in our living room.  The three lower pictures are Abby's hand with each one of ours, and the top picture is all of us together. Our living room with some 8x10s of the kids and a wall art decal. I'm really excited about the new decorations on our walls!  It's easy to be inspired when you have such cute kids!  ;)

Since most of you won't be seeing Abby or where she's living for a while until we're out of cold and flu season, I thought I would give you a tour of her room with a brief explanation of her equipment.  I had to keep it short because I can only post 90 second videos on here, but it should give you a little glimpse into our world!

Remember our great night as a family?  Here are a few pictures of our very normal, very average, very incredible family dinner.  Please ignore the mess.  We've been slightly preoccupied.

Way back when, they were supposed to do a chest x-ray on Matt and you to see if you had the same rib anomoly Abby has.  Did they do this?  Quick answer:  no.  They never followed up and I never pushed it because I think we'd know if either one of us had pieces of rib connected with fibrous tissue.  With all of the genetic testing you've done, has anything given you answers as to why this happened? Nope.  We just got the results of the last set (I think that was the 5th set of tests) and everything was normal .  I guess that is good, but I'd really like to know what caused this.  It's kind of disconcerting not knowing how this happened.  Not that I'd feel better knowing that it was the kind of make-up I used or the amount of ranch dressing Matt ate, but still!  We will be joining a study at Boston Children's to help them research this syndrome.  While it won't necessarily help Abby, it will certainly shed some light on this cra...

I'm sorry I've been MIA the last few days.  We've been without internet, but a person from Comcast came out today and we're back in business!  No time to post now, but maybe tonight!  :)

Tonight was our first night on our own .  I have to say that while this was a little intimidating, Matt and I were both really looking forward to it.  We were ready to take back a little of the family privacy we've missed! The evening didn't disappoint!  With minimal effort, we brought Abby into the kitchen with us while we cooked and ate dinner.  It was wonderful!!  I didn't even want to get up from the table because I was just enjoying having our entire family there (with a few extra machines!)  Later on, Matt brought down The Lion, the Witch, and the Wardrobe , which Caleb and he have been reading together.  (He LOVES it, by the way!)  I held Abby in the rocking chair while Matt and Caleb sat next to us and we all listened to Matt read a chapter.  Do you ever take mental snapshots of something you really don't want to forget?  I took one of that moment.  It was so simple...so nondescript...and so what we have been yearning fo...

Anybody have any burning questions now that we are home?  Ask away, and I'll answer them on Sunday night!  Email or leave a comment if you have something you'd like to know.  If I'm not ready to answer it publically, I'll let you know directly.  Otherwise, we're open books! :)

We are adjusting!  It's slow, but we're getting there. We're adjusting to the idea that we need someone to help us care for Abby. We're adjusting to the amount of stuff we have to take with us wherever we go. We're adjusting to having one attention-seeking four year old and one attention-requiring three month old. We're adjusting to having ridiculous electric bills because that's just how it's going to be. We're adjusting to medicine and feeding schedules. We're adjusting to having non-family members in our house, which is a very big adjustment. We're adjusting to our new normal. Easy?  Nope!  But we're getting there!

All ready to go! Daddy and his girl She kept looking at us like she had no idea why we were so excited! I've been waiting a long time for her to wear this dress! Heading home!!  She slept the entire way! She opened her eyes as soon as we got home to see her new home. All settled in her new bed!

Today was much, much better than yesterday!  I actually got all 4 things checked off on today's to-do list, and we made it to the doctor with only minor issues.  Caleb had school today (I took him for the first time!!) and Amy kept him afterwards so that we could go to the appointment, so I didn't have to try to keep him quiet all day.  It was a day of getting to know our day nurse and learning how to work together, and I liked it! We were only 9 minutes late to our doctor's appointment, which I find quite an accomplishment considering the amount of stuff we have to bring with us.  Never mind that we started getting ready an hour and a half before we needed to be there... And in case you're wondering what we brought with us to the doctor:  the pulse oximeter, apnea monitor, oxygen tank, ambu bag, ventilator, suction machine, the to-go bag (it's like a diaper bag times 10!) Abby's binder, my calendar, the nursing binder...oh yeah, and Abby!  Thank...

I'm up early this morning because our night nurse needed to leave at 6:00 and our day nurse isn't coming until 8:00.  That leaves...me!  It's actually alright though because Abby is sleeping soundly (she's not a morning person and is a real bear if you wake her up!), her continuous feeds are done, and she doesn't get fed again until 9:00.  I'm sitting right next to her, but I can actually be on the computer for a minute while things are calm.  (I can use the word calm because Matt has Caleb upstairs with him while he is getting ready--then we'll switch!)  :) So, the last 40 hours have been crazy...SO much harder than I thought they would be.  I knew it would be insane, but I didn't count on all of the peripheral issues...like nurses wanting complete quiet in the room at all times.  That's been a bit of a challenge with Caleb, so we're trying to find a happy medium that will keep the nurse happy and allow Caleb to be a four year old!  I think...

We're home and feeling absolutely overwhelmed.  We had a ridiculously long "admission" meeting yesterday with our nursing agency (yes, we hate the term admission ....this is our house!) and never really stopped until we went to bed.  Sadly, it wasn't the emotional homecoming we were hoping for because of all of the business we had to attend to.  We weren't really pleased by this, but it's hard to "enjoy the moment" when a bunch of people are there waiting for you to sign papers and answer questions. *sigh* Today has been spent doing laundry, making phone calls, organizing things, moving her room around again and again and again, and trying to keep Caleb occupied.  That last one has proven to be quite a challenge!  So that's about it.  I'll post more when things slow down a little and I have more time.  I have lots of pictures that haven't even been loaded on my  computer yet with no time to do it! 

Abby is a miracle, and she is being used by God to remind people that He is bigger than statistics!!!  It wasn't the doctors who saved Abby, it was God.  Plain and simple.  This is an amazing day for us, but it is of no surprise to God.  He knew exactly what was going to happen and that Abby would be coming home.  He had January 18th marked in His planner for a long time and we are so thankful that He chose to spare Abby and use her here on Earth.  We love our little world-changer! Right about the time this post will show up on the blog (remember, time delay is my friend!), we will be driving home with one of the two best gifts God has given us.  And we'll be singing this song LOUDLY!  Feel free to sing along!  :) Our God is greater, our God is stronger.  God, you are higher than any other.  Our God is healer, awesome in power.  Our God, our God!

The day is finally here.  I am in utter disbelief. As I type this, I am feeling so many emotions:  thankfulness, awe, disbelief, fear, amazement, anxiety, happiness, nervousness...but especially JOY! Today, we will actually be checking OUT of the Ronald McDonald House, the place that has housed us, fed us, cried with us, and loved on us for the last three months. Today, we will drive to Mount Washington for the LAST time (at least for a while!) Today, we will sign a bunch of papers and get a bunch of information about Abby's final orders. Today, Abby will wear a beautiful blue dress with a little white bow in her hair. Today, we will walk out the doors with Abby in a carrier and put her in the car. Today, we will drive away with our daughter and make the long two hour drive home (with me in the backseat, anxiously examining every movement and facial expression). Today, we will listen to "Our God" on repeat the entire way home, singing at the top of our lun...

I have two sides--did you know that?  They're the crazy side and the practical side. And sometimes the crazy side sort of takes over.  I'm going to share with you my biggest fear in regards to Abby, which is something I've been working through recently.  I ask you to pray for me as we face this head-on. Because of the severity of Abby's condition, there is a lot to do regarding her medical care.  There are trach changes, stoma cleanings, suctioning, flushes, etc., all of the time.  Some of her care is directly related to her airway.  And there's no room for errors. So my biggest fear is that I will make a mistake that could cost Abby her life.  And I won't be able to handle that.  The guilt will kill me. I know, I know.  The practical side reminds me that I have worked hard at learning everything there is to know about Abby's care.  I'm a dedicated mother who pays attention to the details.  There will be nurses and Matt ...

That is my life right now.  And it will probably describe my life for the next 50 years as well. Our delivery came yesterday, and I have to admit that it wasn't quite as many boxes as I'd thought.  That was a pleasant surprise!  I did have a few shocks though:  the base for our in-house oxygen tank is HUMONGOUS and the entire thing is quite an eyesore.  I did my best to hide it behind the chair in the living room, but it's still ugly.  Thankfully, it's okay to be back there because Abby doesn't use oxygen on a regular basis. It would only be in case of an emergency and it is still very accessible from her spot.  Another shock was how looooooooong the suction catheter packaging is.  We get three boxes a month (300 catheters total), and one box of 100 filled an entire drawer.  Those suckers are 2 feet long!  The worst part is that the actual catheter is about 1/2 the size, so I have no idea why the packaging is so big.  I only k...