Life as a Leach

I have been working, working, working on my house these last few weeks.  Yesterday, I took down, washed, dried, ironed, and hung back up all of the curtains in my house...and I will never  do it again!!  It was such a pain! I've also been cleaning out lots of cabinets, organizing lots of closets, hiding lots of toys to take to the thrift store, and cleaning the things that don't usually get cleaned! I just read some good organizing tips that I thought I would share with you.  It's from one of my favorite blogs, www.lovethatmax.com , and I thought some of them were pretty good!  I wrote a few comments in red. Her top three time-organizing tips • Stick with one kind of planner. "If you have things in multiple places—the wall calendar in kitchen, the app on iPhone, your to-do list—it's a recipe for confusion, doubt and inefficiency."   I completely agree with this.  I do have two, because I have a work and a home calendar.  However, every...

June 16th was our local Relay for Life, and our church's team got together once again to raise money and celebrate LIFE! A very sweaty, dirty Abby We have "The hoola hooping lady" on our team, who demonstrates hoola hooping for exercise and sells exercise hoops for Relay.  She's quite a novelty!  Anna is trying out a hoop. My dad and Al, both cancer survivors The Murphys, also cancer survivors and awesome fundraisers! Caleb with his Aunt Rosemary My cute parents :)  My dad is a kidney cancer survivor.

Isn't this awesome???   Did you know that 9 out of 10 prenatal Down Syndrome diagnoses end in medical termination? Whether it's Down Syndrome, Cerebral Palsy, or Cerebrocostomandibular Syndrome, you can't judge the quality of a person's life by a diagnosis.  Doctors might try to scare you by describing a life full of doctors, medical equipment, and sacrifices. Well, yes, we do have a lot of that.  But we also have laughter, hugs, wrestling, dolls, smiles, kisses, sassiness, and cuddling.   And that definitely outweighs the medical stuff! So please don't judge the quality of a person's life by a diagnosis.   I'm so glad we didn't!

I drove 2 hours and 15 minutes, paid $6 in tolls, and got lost going to the pediatric dentist today.  This is the one that we were going to in order to get her cavities fixed under general anesthesia at JHH.  Things did not  go as planned. Once I finally got there and we were seen by the dentist, we realized that while she does technically have visiting rights at JHH, her credentials an't in order for her to do any procedures there.  She just  graduated ( didn't know that!!) and hasn't gotten her paperwork together yet.  This was the entire  reason we were going to her.  She suggested that she could see Abby at a different hospital similar to our local hospital, completely missing my reason for going to JHH.  She also suggested sedating her at the office, but I was very reluctant to do that being that there wouldn't be emergency equipment if something were to happen. Then she suggested going to the dental school to have them work on Abby....

...You notice a soda can in the trash and consider reaching in and pulling the tab off...and sometimes do! ...It seems like complete strangers "get" you more than people you've known for years. ...You wear your red and yellow bracelet with pride. ...Your children have a deeper understanding of what it means to love others unconditionally. ...Checking the resident mailboxes is the highlight of your kid's day. ...Your five year old has ever stood in the middle of a McDonalds telling customers how important it is to put change in the donation container. ...Your family is a whole lot bigger these days! ...You have ever wished for "Activity Hour" when you're at home and have run out of things to keep your kids busy until bedtime! ...Tears are shed for families going through a particularly tough time. ...You get used to taking an elevator up two stories to get to your bedroom. ...You have no problem striking up conversations with people you...

So, we've been home for several days now and I can't get several faces out of my head.  Their stories just break my heart, and I wish there was something I could do. The first is a little boy who was SO incredibly friendly.  He had a contagious laugh and called everyone Momma when you came to see him...except his real Momma. She didn't even talk to him when she came to pick him up at discharge (and it kind of seemed like that might have been the first time she had seen him since admittance), and he didn't give her the time of day either.  It was like he knew that his caregivers thought more of him than his mother.  I'm well aware that I am only seeing one snapshot of a very big picture, but it hurt my heart to see such a lovable little boy treated so nonchalantly. The other is a little girl Abby's age who has been here since she was released from the NICU.  She has never been home.  Doesn't that just break your heart right there?  She had...

I don't know about you, but my kids HATE, H-A-T-E putting sunscreen on.  You would think I was torturing Caleb by the way he was screaming, instead of helping him to have an enjoyable time outside.  I keep telling him that someday he'll thank me, but he hasn't gotten there yet. I have gotten Caleb the UV shirts since he was a baby because it's that much less sunscreen I have to rub in, but it's harder to find UV shirts for little girls--especial UV shirts with swim trunks to go with them! So I was super excited to be able to try out the GrUVy Wear  brand of swim attire!  They have some super cute surfer-style patterns in every size from infant all the way up to adults.  There are even adorable swim skirts for the fashionable girls! They have a whole line of rhinestone and decal shirts too with everything from LOVE to skull and crossbones printed on them...if you're into skulls and crossbones! The swimshirts are all UPF (Ultraviolet Protection Factor) 50+, ...

A friend of mine passed away very suddenly on early Tuesday morning after his apartment caught on fire.  You can read about the details here , but he went back in to get something after he got his girlfriend out safely.  I guess we'll never know what it was that was so important. I've known Joey practically my entire life.  His family went to our church, my mom taught Joey, we sang in the same choir and were part of the same youth group.  He was an extremely intelligent guy who could memorize entire chapters of the Bible.  He'd just graduated from law school and was working as a law clerk for a judge--no doubt with hopes to be sitting with a gavel in his hand one day! Today is the funeral, and I can't imagine what is going through their heads.  It must be a horribly surreal feeling to sit and listen to people talk about your child in past tense. My heart is broken for his family.  Please pray for the Goulart family as they go through this horribl...

I'm a planner.  Have I mentioned that before? I like to have a plan.  So imagine my discomfort in not really having a plan for getting Abby's trach out.  To avoid false hopes, we would answer, "Ohhh, after she goes to school" if someone asked when she might be able to get it out.  It was just easier that way. Well, noooooooooow, we have a plan . And I. LOVE. IT. After Abby has been successfully off of the vent for a month, we'll start capping her trach.  This is when we put a little plug in it so that it's not being used at all and she has to do everything through her nose and mouth.  It's awfully nice to know you can just pull the plug out if she struggles though!  I have strategically scheduled her ENT appointment for almost exactly a month from today so that we don't waste any time! Once she caps successfully while she is awake (which depends on Abby, but our ENT thinks this will be a quick process), she will go for another sleep study whe...

Abby had her first crush while she was at MW.  In fact, it was on one of her roommates.  Yes, the rooms are co-ed up until a certain age.  I'm thinking I need to request an all-female room next time or we will be in some major trouble!! The two of them would "talk" to each other from their sides of the room, wave, and blow kisses.  Abby would head right over to see him when she was out of her crib, and he would laugh and get so excited.  When they went with a few other friends to the playroom, the two of them sat in the cart together and Abby kept trying to hold his hand.  They gave each other lots of hugs too.  It was absolutely hysterical and a little frightening to see her all googly eyed over a boy at such a young age. Sadly, the boyfriend ditched her for discharge...and left during Abby's nap without even so much as a goodbye!  Abby woke up and immediately noticed he was gone.  She was bitter the rest of the day.  Look out, lad...

Sorry for not posting while we were in the hospital.  Turns out, MW does have wifi (thanks Gila!), but it took a day for someone in IT to come approve my laptop, and when Abby went to sleep and I had time to post, I discovered that Blogger is not an "approved" site.  Scandalous! If we're Facebook friends, you already know most of the story.  Here's the condensed version.  :) We get there and it turns out that "they" (still not sure who "they" are) forgot to schedule the sleep study, which is the entire reason we are there.  She's on the waiting list, but we may have to wait until the following Monday to do the study...which means being in the hospital until Monday...which means exposing Abby to unnecessary germs.  Ugh.  Not too happy!  We found out Tuesday afternoon that she would have it that night, which was perfectly fine with me!  We actually ended up getting out a day early.  Woo hoo!  Abby did great the first night off the...

Happy Father's Day to an amazing father and husband!  We love you, Daddy-o! We're off tonight to do some Father's Day crafts with some pretty brave kids at The Ronald McDonald House.  I'm so thankful for an organization that allows families to celebrate holidays like this together! I'll post when I can over the next few days. MWPH doesn't have WIFI, and I'm not sure how much I'll be able to do from my phone.  One thing is for sure--there will definitely be VENT-FREE sleeping pictures!!  :)

My little doll baby loooooooooves  her doll babies!! The other night, she went to the stairs to go up to bed with her beloved Beth (the one with the brown hair who looks an awful lot like Abby!) in her arms.  As she got to the gate, she let out a loud, OH!  and ran back on a mission.  She found her little soft, pink, no-named baby and came running back to me with the cutest little grin I've ever seen!  I had to help her up the stairs because her arms were so full of babies!! I made sure that Beth got packed after Abby fell asleep, because it would be so sad to leave her here!  She literally goes everywhere with Abby.  We "feed" Beth when Abby eats (which definitely helps with the feeding!!), Beth comes in the bathroom when Abby takes a bath, we have tea parties with Beth...so it's only natural for Beth to be there for the vent weaning!!

Here's a really quick weaning update: We are officially going in on Monday!!  We've got a whole lot to do between now and then, and we'll actually be staying at RMH on Sunday (we were already volunteering, and we have to be back the next morning anyway!)  I've got a box full of toys packed for Abby to play with in the hospital, and I've started gathering up the medical supplies I need to take with me. We're really excited about this.  It's been a looooooong time coming, and I know Abby is ready!  I may not post too much between now and then because we'll be at Relay tomorrow, furiously packing and cleaning on Saturday, and celebrating Father's Day on Sunday.  My laptop will be going with me to Baltimore, so I'll try to update when I can. Thanks for all of your prayers!  My prayer warriors were working overtime last night, because the insurance company approved our vent weaning a whole lot quicker than anyone thought they would!  Keep it up!...

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!  ;)

The answer:   I don't know. The hospital where she is going to do the weaning just  told me today that they will have a bed for her.  I thought all of my worries were over and I could finally say that we were definitely going on Monday. Wrong. Turns out, they didn't put in the pre-authorization request to our insurance company until today.   This process usually takes three days before you get an answer.  Hmmm...today is Wednesday...uh, yeah, that would be FRIDAY afternoon  before I'm going to get an answer about whether or not Abby will be inpatient on MONDAY morning ....with Relay for Life, Father's Day activities, and volunteering at RMH in between. I have no idea why they waited this long when they were contacted a week ago about Abby coming in.  It seems to me that ball could have started rolling quite a bit sooner!! I called my insurance case manager (yep, they have case managers for the "special" policy holders who cost them a lot of m...

I spy a little girl who loves the water table! I love that she can play, get wet, and enjoy herself in the water without the danger of being submerged. She loved  it!!!!  I see lots of afternoons on the back deck in our future...

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...

...And One for All!

My sister gave me a bracelet right after Abby was born to remind me "For with God, all things are possible."  I have worn it ever since as a constant reminder not to lose faith.  God can  perform miracles! This was taken in the NICU in November, 2010 when Abby was just two weeks old. This was taken in May, 2012 when Abby was 18 months old! See everybody?  For with God, all things are possible!

Abby had her pulmonology appointment today, and it was full of nothing but good news and praise for how well she is doing!!  Our doctor feels like she is definitely ready to go into MWPH for a few days to be taken off of the vent once and for all!! The way it will work is that she will come in, sleep at MWPH for two days off of the vent while being monitored, then do a sleep study off of the vent on the third day.  The reasoning behind this is that sometimes kids get worn out by the third day and start having issues.  If her sleep study is good, we'll be going home, SANS VENT!!! (Well, we will still have the vent for a while, just in case.  But it will sit in the closet and will not be used!!) Since we are a "voluntary admission," (don't quite get that, since we have to go, but whatever) Abby could get bumped if a more serious case comes up.  That's perfectly understandable.  If everything works out, we'll be going on/around June 18th...as in, a week ...

I love these pictures because they're not perfectly posed.  They capture exactly how Caleb and Abby are every second they're together.  They really love  being together, and I hope that never changes!