Life as a Leach

I was recently asked, "What do you do all day now that you're only working part time?"  Yes, it was a serious question. Lest you think I sit at home lying on the couch watching soap operas and eating bon bons, let me fill you in.  I work, during a typical 5-day work week, 17.5 hours.  My schedule changes every week, but just for kicks, let's say I'm working Monday, Wednesday, and half-day Friday. Monday:  Relieve nurse at 7.  Work 8-3.  Come home, get report from nurse, make dinner.  Feed Abby, do therapy, play with Caleb, bedtime routine, trach-tie change, make milk, empty or run the dishwasher (it has to be run at least once a day!) wait up for nurse until 11. Tuesday:  Relieve nurse at 7.  Matt is gone early for a Bible study.  Nurse comes at 8.  Take Caleb to school at 8:45. Run errands.  Clean. Watch my niece (which I love!) while my sister volunteers at her kids' school.  Pick Caleb up at 12:40....

Abby is standing very well now.  She can play and hold onto something at the same time, which took a while for her to get the hang of.  Now I put the play table up like this so that she has to reach up higher for it.  Love those cheeks! We're now trying to get her to take steps while holding onto something (like the coffee table) to get to a toy.  There's always a "next step" in her therapy, but we try to make it as fun as we can!

Caleb has not one, but TWO bunnies that play music.  Aren't we lucky?!  :)  This reminds me of a tennis match as Abby goes back and forth between the two.

Here are a few of the pictures I took of my sister's family.  We went to a local park and tried to monopolize on the twilight awesomeness, but I forgot about daylight savings (these were taken the day it switched).  SOOOOOO, they're a bit shadowy at times.  But I think there are still some good ones!

There's a whole lot going on in my head right now, but I wanted to share with you an article that was written by the sister of a trach mom.  Her nephew has CHARGE Syndrome, which is pretty rough as far as syndromes go.  She shares her perspective on the way people respond to her nephew. I could go into so much about this, but I'm simply going to ask you to think about your staring, your questions, your facial expressions, your misconceptions.  Remember that the special needs child you're gawking at is a person and the family with him or her has unconditional love for that child.  Remember that the way you treat that special needs child can either make the child and his or her family feel accepted or isolated.  Remember that everyone just wants to feel loved.  Remember that God made everyone perfect in His eyes.  Remember that your harsh comments and attitudes are hurtful.  Remember that somewhere, a mother is crying late at night because she j...

Caleb's laundry basket has been falling part for a while now...like, a couple of years.  I just haven't gotten around to replacing it.  Enter Lock and Lock!  I got this as a supporter gift! It's a lot bigger than it looks, and it holds quite a bit of little boy laundry! These are also stackable, if you have more than one.  I don't right now, but I might have to order some more!

I feel bad for Thanksgiving.  It often gets skipped over because people go right from Halloween to Christmas.  It's always been a favorite holiday of mine because it isn't over-commercialized...just lots of good food and family!  Plus, I love to watch the Macy's Day Parade!  :) Here are a few of the many things I am thankful for this year: *  We're home celebrating rather than in Baltimore.  As much as I love RMH, there's no place like home!  We celebrated 4 holidays there last year, and it's just really hard to be away during this time of year. *  My kids.  They are both so great!  Caleb is absolutely the best big brother for Abby.  I also love that I'm getting glimpses of some of his strengths as he heads into school.  He loves to build things and solve problems as he builds, and he is also really good at math.  Maybe he'll be an architect!  Abby has overcome so many obstacles and is really developing wel...

This will just about melt your heart! :) Since Abby hasn't said any words yet, this is one of her first signs of affection (besides the big smiles and clapping she does when we walk in the room!).  I just can't get enough!!

You know that vent weaning we were so excited about?  Well, that's on hold for a little while.  :0/ Abby has an infection and has been on an antibiotic for a week.  It's a 10 day supply, so things should be pretty back to normal by now...but they're not.  So they're going to start her on another antibiotic for 14 days that is put in through a nebulizer directly to the trach.  Our doctor wanted us to start it as soon as possible so that we could start to see some improvement.  If only she were able to just give us the medicine herself... I found out tonight that it is incredibly expensive (read:  $4,500!!!) and there is no generic. I have a feeling my insurance is going to balk at that one, so I hope Medicaid will pick it up.  Of course, that will require a pre-authorization, and the state offices are apparently closed for the rest of the week...awesome.  We're talking Monday before the request even goes across the desk, and then a few mor...

I was asked to write this list for the MOPS group I'm a part of.  It was included in a packet about manners and etiquette for children in various situations.  I'm all about taking the fear out of interactions with my child, so I whole-heartedly agreed! I didn't want the list to just be based on our personal opinions, though.  I checked around on the internet and got a few ideas, but most of my research came as a result of a poll of a special needs group I have joined.  I asked them what they would like to tell people to do or not do when dealing with their special needs child and his or her family.  Let me tell you, the response was overwhelming!  50+ people responded with multiple suggestions.  This is obviously a hot topic for special needs families and one that definitely needs to be addressed. Therefore, I decided to also post the Top 10 list on here.  I hope that it helps you know how to teach your children how to interact with ...

I worked all day today and am going to MOPS (Mothers of Pre-Schoolers) tonight, but I know my friend Linda gets worried when I don't post!  :) Abby has learned how to give hugs this weekend, and it is incredibly cute!  I'll say, "Give me a hug!" and she, of course, first shakes her head and smiles.  Then she leans forward and lays her head in my lap with her arms holding my knees.  If I lay my head on her back, she always giggles.  It is sooooo cute!  I am going to try to get a video of it sometime soon, but I was on my own this weekend! The next few days will be chocked full of blanket-making for the Welcome Project with the youth group on Wednesday, two Thanksgiving dinners on Thursday, Christmas decorating on Friday (Matt will be doing stuff with the youth group all afternoon/evening), and serving dinner and doing the activity hour with MOPS at RMH on Saturday!  Sunday, I'm hoping to finish up the inside Christmas decorations and maybe get Matt...

Well, Matt is gone this weekend, so naturally that is the perfect time for Abby to start acting up...and by acting up, I mean worry me to death with low saturation levels.  She obviously missed her daddy and would do just about anything to bring him back home quicker.  Abby is taking a nap right now and Caleb is at church with my sister and her family, so I have a few minutes to recount the events of Friday evening. Abby had two episodes of intense coughing where she turned purple.  I suctioned her both times.  The second time, she also started sort of foaming at the mouth (not like a seizure...just a ton of saliva) and then it all shot out at once.  Her saturation levels (how much oxygen she is able to get--it's a percentage with 100% being the best) were also not as high as they usually are.  It was really weird and she wasn't acting right, so I called the pediatric pulminologist on call at JHH.  She suggested giving a nebulizer treatment (Albute...

Abby LOVES to wear my necklaces!  She gets really excited when I give one to her.  Of course, I can't let her wear or play with one that is breakable, but lucky for her, I wear a lot of Mommy Necklaces .  They are made with non-toxic acrylic beads with a break-away clasp, so they're more or less indestructable. They are marketed as nursing necklaces, but I wear them all of the time just because they're pretty and Abby likes to play with them.  :) If you "like" them on Facebook, you'll get notifications of sales and bargain sites that are selling them.  That is how I have gotten all of mine.  She would giggle whenever I put it on her, then immediately pull it off. She seems to especially like this one out of all of mine (I have 4).  I think it may be the pinks. I think her shirt suits her, don't you?

Abby has a room full of toys, and what does she want to play with?  The box my L&L supporter gifts came in! She liked playing peekaboo with the flaps cheering for herself Yes, she is standing here!  :)

In case you're wondering what kind of stuff I get for being a Lock and Lock supporter, this is just one of six or seven items that came in a huge box last week.  It is well worth the blogging time when you get such awesome products to use and review!  This is a Speed Cook pot. One of those most fun things about it is that it has holes in the top of the yellow handle on the lid for your chopsticks!!  (Lock and Lock is an Asian company, so many of their products support Asian customs and traditions!)  PLUS, you can flip the lid over and it is a bowl!!  After using this pot for rice, it does seem to boil the water faster.  I was surprised at how quickly the water boiled--and on my "slow" burner at that!  But it's also a really nice, lightweight sauce pan at a good price.  Plus, L&L is always having some kind of deal, so keep an eye out if you like this pot!   I am not ashamed to say that most of my pots and pan...

I have recently been reading all about the Duggar family in their two books: and   I can't say that I agree with all of their practices (I really hate skirts and would pretty much die if I had to wear one every single day!), but I do feel like I can connect with them on some level about their reasons for going public with their family.  We're certainly not on a TV show or anything crazy like that, but making yourself vulnerable to others can be nervewracking.  They don't water down their faith on the show or in their books, and I like that.  I also like some of the family structure they have and the responsibilities they give their children.   Enter:  Chore Packs!   The Duggars give each child a Chore Pack, which are cards with one chore on each one.  (There are pictures for the younger ones).  They are held together by a ring and the kids flip through each one to make sure they get their chores done.    Well,...

There is a huge sale from now until November 20th at http://www.lockandlockplace.com/ .  EVERYTHING is 50% off with the promo code PREBLK2011   I just got some gifts to stash away, as well as some containers to help me organize my hall closet.  Good deals, good deals!!  :)

We have been using a communication book with Abby where I printed small iPad icon-sized pictures of various toys she has and put them in little pockets.  If Abby wants to play with a toy, she has to tell us first by pointing to the picture.  She's doing a great job at this, although she sometimes gets frustrated when she can see the real toy and we make her point to the picture!  All of this is getting her ready to use an iPad communication app where she will touch a picture and the iPad will speak for her.  She's been working with one during speech sessions, and if she touches the picture of the blocks, it will say, "I want to play with blocks."  It's pretty cool! The only problem we've hit is that it's sometimes hard to find the toy that she points to once she's told us she wants it...her toys were pretty much just thrown into 6 or 7 different baskets.  There was no rhyme or reason to it, so I often would only give her picture choices of the toy...

Last Saturday, we changed Abby's trach just like we do every Saturday.  This time, she just kept coughing after we finished and couldn't stop.  Her face turned a dark shade of purple and we quickly suctioned her to get whatever was in there out.  That didn't seem to help, but then I noticed that her trach ties were really loose.  For whatever reason, now that the tube that goes inside is longer, it really bothers her if the trach ties are loose and the trach can shift a bit.  We tightened the ties and she finally settled down.  Just to be safe, I hooked up a nebulizer treatment to give her some Albuterol (the equivalent of a fast-acting inhaler).  Once things calmed down a bit and Abby started breathing normally again, Matt and I did our typical post-semi-emergency ritual and collapsed in a heap on the floor.  This kind of thing hadn't happened in a while and it started without warning, so it certainly got our heart pumping.  The ...

In the ESOL (English as a Second Language) world I'm now living in, we have what we call Can Do statements, or Can Do's.  These are written as what the ELL (English Language Learner--Special Education and ESOL are battling for the biggest number of acronyms!) is able to do instead of focusing on everything he or she is unable to do.  It just puts a more positive spin on things. I like 'em...a lot...and even more so when I think about them in relation to Abby.  So much of her life focuses on what she can't do (because, face it, that is what the doctors need to know!) that it is sometimes rather discouraging...especially when they bring in that dreaded n-word* that I hate oh-so-much. *normal So, I figured I would make a list of some of Abby's Can Do's! Abby can... *  stand while holding onto a table or other sturdy piece of furniture without help. *  take a few steps while holding onto furniture with a bit of assistance. *  roll around the floor ...

The Lock and Lock obsession starts young!  I was filling out this little survey that we did for our Secret Santa at work, and it asked what we collect.  I thought for a while, and I don't really "collect" anything...except Lock and Lock!  So I wrote that!  Hey, anybody who bought me L&L would be the best Secret Santa ever!  :) I may or may not have a stash in my garage of brand new L&L containers that are waiting to be used to organize a cabinet or closet!  Hey, when the urge hits me, I have to be ready!!

...or the carpet! Abby is a rollin' fool these days.  She can pretty stop, drop, and roll to get wherever she wants to go--especially if it is something she isn't supposed to have, like my camera (eek!) or Caleb's Magnetix creation.  This video wasn't the best example of her rolling superstardom, but you get the idea.  Abby is also doing really well standing now.  She loves to stand at the coffee table and bang her toys on it.  (Good thing I let go of the don't-ding-up-the-coffee-table idea  few years ago!)  The other night, she was standing there holding on and I was trying to get her to clap.  She didn't want to let go of the table, but she reallllllly wanted to clap.  The smartiepants leaned down on her elbows and clapped her hands so that her arms never left the table.  She is such a mess!

She's getting there!

In the past few months, I have really been trying to make the change to using glass in the microwave instead of plastic.  I'm almost there...I am to the point where I notice when I stick a plastic container in there!  To help with this, I've been trying to put our leftovers in glass containers whenever possible.  This makes it much easier to heat them up without having to pour them from the plastic container to a glass one.  (Plus, it cuts down on the amount of dishes in the dishwasher that we already run every day!) I got some more glass containers in my last L&L supporter shipment, which made me extremely happy!  I have been running out of glass containers if I have too many leftovers, so this should help. I do have some Pyrex containers that I will bake in, but honestly, I try to avoid putting leftovers in them.  I'm not just saying this...the Lock and Lock containers keep the food fresh for a whole lot longer!!  Since I'm the only one in my...

 Abby's weapon of choice against Caleb But they really do love each other!  I find that I catch those moments the best when they don't think I'm taking pictures So I just snap away while they play and I capture all kinds of true love And I even got one posed picture!

Abby had her pulminology appointment today, and it was decided that she is ready to be completely weaned off of her ventilator!!!!!!!!!!!!!! WAHOOOOOOOOOOOOOOOOOOOO!!!!!! There are a lot of steps to this process.  First, we will schedule for Abby to be in-patient at MWPH (where she discharged originally) for a few days.  Between now and then, we will be slowly turning down her breath rate (which is currently at 6 breaths per minute--bpm) until she is not receiving any breaths from the vent.  (In case you're wondering, all that is left when she isn't getting breaths is what is called pressure support, which basically gives her lungs a little extra push so that they can inflate a little easier with air.)  Once she's down to zero bpm, she'll be as ready as she can be to go officially "off." Then the fun part starts!  She'll go into MW (this time by car, not be ambulance, and by one of us carrying her, not by stretcher!) and will basically just hang out...

Lock and Lock is having a $1 sale right now and there are some really good buys in there!  My favorite is this half and half container .  I use this one all of the time in Caleb's lunches (broccoli and dip, chips and salsa, two different snack items, etc.)  $1 is a really good buy for this, so snatch it up now!  :)  There are a few other fun $1 buys too, like this big container  or this water bottle .  We have several of the water bottles in various sizes and really like them.  PLUS, right now if you spend $100 in one transaction, you get a $25 gift card for L&L!  Christmas shopping, perhaps?! Let me know if you score any good deals!

We had 4 crafts the kids could do to go with our four seasons theme. pumpkin playdough (fall) and they each got their own little pumpkin ball to take home Planting flowers (spring) Bubbles (summer) and painting ornaments (winter) We also had a moon bounce, just because it's fun and it lets them get some energy out! The crafts seemed to be a hit and kept the kiddos busy!  :) This little one was just completely worn out!

For several months now, we have had the pleasure of talking about our story with a young journalist.  She heard about it through a friend of ours she worked with and got our contact information.  "A" is in a journalism master's program and originally interviewed us for an article she wrote for a class.  Now, she is doing an internship at CNS  and called us for permission to write our story again...this time with a different focus.  After lots of emails and phone calls, the final article was sent "out on the wire" (that's newspaper-speak for ready for publication...aren't I fancy?!) and to our surprise, it was picked up by Fox news!  Here is the link: http://www.foxnews.com/health/2011/11/04/after-grim-diagnosis-parents-turn-to-internet-social-networks/ Our sole reason for agreeing to the article was that we would be able to share the miracles God has performed in Abby's life and point others to Christ.  We hope that if you have found the blog a...