Life as a Leach

 There are many more to come, but here are a few of the Christmas pictures I took. Sooooo big! This isn't a great picture of Abby, but it was the best one that we got.  And given that we now know she wasn't feeling so hot, it's understandable why she'd have that face! 

It was a Lock and Lock Christmas at our house!!  My mom gave everyone in the family at least one piece. These pictures are a little on the silly side, but I will try to link the product so that you can see what each one is.  Matt actually got something we didn't have yet! I really like these square ones for leftovers. This one is good for pouring things (like coffee, if you drink it).  The one in the background is the perfect size for a cupcake, onion, or green pepper.  I actually use that one a lot. Sadly, I cannot find a link to these exact containers.  They were a special set, so I think they probably just discontinued it.  It's two large containers with a handle, with several smaller containers inside of each one.  These are the best kind of deal when they have a sale because you get a lot of different sizes.  The best part of this whole picture is the baby legs sticking out after a fresh diaper.  :) I did some reorgani...

So, if you're not friends with me on Facebook, you may not know about our little trip to the ER on Wednesday.  Yes, we were just discharged the day before...almost exactly 24 hours before we went back to JHH.  Abby tolerated her feeds all night (she is fed continuously at a slower rate) but couldn't handle her daytime feed--much more food in a small amount of time.  She got sick three times in 5 minutes and it was bubbling out of the trach.  After a call to our pediatrician, we were instructed to go back to the ER.  Unfortunately, the ER doctor just kept saying, kids throw up.  That's what they do!   Yes, but kids do not throw up from their trach!!!   She failed to see our (and our pediatrician's) concern.  They ran all of the tests again to see if anything was missed.  They attempted to start and IV, but couldn't get it.  They drew blood, but it clotted.  After an eight hour stay and a lot of arguing with the doctor, we...

‎1. Because they never thought that "doing it all" would mean doing this much. But they do it all, and then some. 2. Because they've discovered patience they never knew they had. 3. Because they are willing to do something 10 times, 1,000 times if that's what it takes for their kids to learn something new. 4. Because they have heard doctors tell them the worst, and they've refused to believe them. 5. Because they have bad days and breakdowns and bawl fests, then they pick ourselves up and keep right on going. 6. Because they manage to get themselves together and out the door looking pretty good. Heck, they even make sweatpants look attractive. 7. Because they are strong. Who knew they could be this strong? 8. Because they aren't just moms, wives, cleaners, chauffeurs, cooks and women who work. They are also physical therapists, speech therapists, respiratory therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerlead...

Last Christmas, we celebrated at Mount Washington. This Christmas, we were fortunate to spend most of it with family and enjoyed opening presents Christmas morning, but the last few hours were spent at the JHH ER. Abby’s secretions had increased on Christmas Eve, and we were keeping an eye on them. Nothing major, so we weren’t worried. Christmas morning, we had to suction her five times between 6:30 a.m. and 8:00 a.m. For Abby, that is a lot. We normally only suction three times a day! Although we had planned for the whole family to attend church (we had just one service, so we could drive together), I decided that it would be too hard to bring Abby in and out for suctioning. Matt dropped Abby and me off to hang out at my parents’ house (where we were going after church anyway). Abby continued to need frequent suctioning throughout the day, and it was obvious that she just wasn’t feeling well. I lost count at the number of times we suctioned somewhere around 16, which is more than ...

In the December issue of Parents Magazine, there is a great little article called, "It's Okay to Stare."   The writer and two of her children have a rare condition that causes them to be missing fingers and toes, so they have dealt with more than their share of rude comments and staring.  I loved the article because it is so similar to how I feel about the questions and comments.  This was my favorite part of the piece.  It is almost exactly what I have said multiple times when I speak about little kids staring:  "All young kids are curious when they see a person who looks different, whether it's a child with a disability or a grown-up who's obese. I've observed (even while being observed) that children blurt out what's on their mind not only to quench their thirst for knowledge but also because they're worried that the same strange condition could happen to them. Their poor parents usually don't know how to react, and so they stifle their...

I do not have a "pretty" Christmas tree.  There's no fancy ribbon on it, I don't have a theme, and my lights work sporatically in different sections, resulting in a weird blinking/no lights pattern.  I like to think of it as whimsical . Yeah, that's it! What my tree lacks in beauty, it makes up for in sentiment.  I'll never have a pretty tree, because I think my tree is pretty darn special.  We've got handmade ornaments not only from Caleb, but from Matt and me as kids as well.  There are photo ornaments from various years.  We have ornaments marking special occasions.  Decorating the tree every year is like a walk down memory lane, and I love it!  On the nights when Matt is gone and Caleb is asleep, Abby and I have been hanging out by the tree and spending time looking at the ornaments.  She really loves to examine each one, hold it in her hand, maybe shake it, and occasionally...throw it!  (This happened last night and resulted i...

You've been warned!  :) This time last year, I was trying to skillfully put toys out in our tiny little room at RMH without Caleb waking up.  This was no easy feat, considering he was in a bed about 4 feet away.  Thankfully, he's a pretty sound sleeper!  I'm pretty sure I was also teary-eyed because of our situation.  RMH does a fantastic job of creating memories for families and the toys that are donated are pretty amazing, but it does not replace the comfort of home.  It is not easy being away from home for the holidays, even when your home is only 2 hours away.  For us, home is truly where the heart is, and our hearts were firmly planted in Baltimore with our brave little girl in that hospital bed.  There was no way we were leaving her. This year, I went to church with my family, started a new tradition of going out to eat afterwards, came home and let them open up one present, and tucked my sweet kiddos into bed.  Then the fun began!...

One of Caleb's (8, now, thanks to the tear-off links he made at preschool!) Advent calendars has pockets with a special treat written on a little slip each day.  Sometimes it's an activity, like go Christmas caroling, something it's a prize, like eat a special dessert, and sometimes it's a get-out-of-jail free card, like a no-chores day!  Last Tuesday, his slip said we would make a gingerbread house together...and make it, we did!  I lathered on the icing while the boy meticulously placed each and every piece of candy.  We also made windows and doors and drew faces on the windows with edible markers.  Caleb even made "bushes" out of icing and candy so that Abby could enjoy a taste too.  He'd just eat the candy for her so she wouldn't choke.  Isn't he thoughtful?  :) Caleb gets bitter if people eat his house though.  I keep telling him that's what it is for! The reindeer (like a cheap Elf on the Shelf) got into the gingerbread house the o...

Caleb's preschool put on a great Christmas program.  They sang probably 7 songs and memorized 2 poems with actions.  I was really impressed with how well they did! Here's my drummer boy leading the band in. After each song, the bowed and curtsied.  It was their favorite part, and they would all giggle every time they did it.  Adorable!! Pay close attention to the bowing and curtsying in these videos.  :) I was very impressed with how nicely he sang.  He sings all of the time, but rarely in front of a group.  He's not camera shy at all, but he seems to get stage fright. I was glad to hear him singing! I can't believe my boy will be in Kindergarten next year!!!!

As an update to my post the other day... I have started a Facebook group called Rare Love.  It was created specifically for families whose children have rare syndromes or diseases, because there often is no support group for them!  While we may not deal with the same symptoms or daily issues, we all have felt isolated.  My hope is that we can encourage and support one another. Right now, there are already 24 people in the group!  We're sharing our stories, inspirational quotes, and a few pictures.  It's already encouraged me quite a bit to know that my feelings are shared by others. If your child has a rare syndrome or disease, look Rare Love up on Facebook!  This is a "closed" (private) group, so you will need to ask to join (in the upper right hand corner of the RL page).  If you know someone who could benefit from the support, please feel free to pass this information along! 

Update:  This is now an award winning recipe.  Yes, folks, it's that good!!!  Ha ha!  Our MOPS group votes on the favorite dishes of the night, and mine won 2nd place... which means a point for our table!!!!   (We're doing a year-long competition to try to win a kid-free date night, and it is quite competitive!) :) ----- I am not a baker.  Seriously.  I set our smoke alarm off on a regular basis, and I'd be lying if I blamed it solely on the fact that our smoke alarm is very close to my oven.  But, I can make these!   And I make them well!  Probably because I don't have to use the oven.   I'm sure it's because my baking skills are improving. I even used some for gifts, as I mentioned in a previous post. The hardest part, by far, was finding the peppermint marshmallows.  If you're local, no store in CC sells them.  Trust me.  I've been in them all!  I had to go down south across the bridge to the Super ...

Today was just one of those days.  It gets really lonely here in crazy-rare-syndrome-that-no-one-understands-land.  But, my wonderful sister planted a seed in my brain, and I think I'm going to start a support group here for people in our area.  If I made it for Cerebrocostomandibular Syndrome, I have a feeling I'd be sipping hot chocolate by myself at the library.  So I was thinking about making it for all families with children who have rare syndromes or diseases.  I have a feeling they all probably feel lonely now and then, so we can certainly be a support to each other in at least that aspect.  I have absolutely no experience with face to face support groups (all of mine are online) and no idea how to start one!  But I'm going to make some calls and try to get something going, because everybody needs someone they can relate to.  And as much as my friends want to, they just can't.  I live a very different life. So, wish me luck!...

Give the gift of Lock and Lock!! I sure am! We've given all of Abby's nurses and Caleb's teachers Lock and Lock in some form or another (and always with food inside!) and these treats are for his Sunday school teachers.  Water bottles, round containers, and these rectangular containers have all been given as gifts this year.  Our day nurse is well aware of my L&L obsession and asked if I wanted the container back after she finished the treats!  :)  I assured her that that was part of the gift. Germaphobe note:  I most definitely washed the containers thoroughly before putting the treats inside.  This was done at the risk of the recipient thinking I was giving them a used container (They were new!  I promise!), but I figured they'd appreciate their food being in a clean container. Stay tuned for the recipe for these delicious peppermint chocolate rice crispie treats!  :) PS:  Matt discovered my L&L stash today and mandat...

Caleb's version, that is!

SOOOOOOOOO Big! Abby learned a new trick. :)

I'm not sure that this counts as "official" crawling, but the girl is most certainly moving.  This is a pretty big milestone, considering we weren't sure that Abby would ever crawl.  I love when my girl proves "them" wrong!! You can also get a pretty good view of the rolling AND pushing to a sitting position all by herself!  That wasn't even what I was going for when I took the video--added bonus!  (Sorry it all kind of fell apart at the end there!)  :)

I was surprised with this when I left my last school of the day: In all honesty, I was a little confused at first and thought maybe that wasn't my car!  But no, there was my Relay magnet, and the lights were flashing as I hit the unlock button! I liked the characters Matt picked out....all very appropriate!  I especially love my angel dog, Becky.  :(  We all still really miss her. Oh yeah, and I also got something else for my birthday...the camera I used to take the picture!!  Yep, still working on that one.  I think this is the last holiday for it though.  It's worth it.  I have gotten sooooooo much use out of it!!!

When we were at Homestead Gardens recently to see the trains, Abby fell in love with this snow globe.  It was glass and expensive, so I wouldn't let her hold it, but I shook it around for her to watch the snow falling.  She sat mesmerized until I put it back on the shelf...then, she burst into tears and had herself a full-on fit!  My sister sent me the link to a how-to on homemade snowglobes on http://www.ourbestbites.com/ (quite an addiction, I might add--way more than just another food blog!) I didn't follow the how-to exactly, because I didn't put Caleb and Abby's pictures in the snow globe.  I don't have laminating access and didn't want to pay out the wazoo for two little pictures at an office supply store.  Plus, Caleb was quite content to pick out an ornament to put in his.  :) I used two little glass baby food jars, which are a good size for little hands.  I hot glued the ornament to the lid.  Then I filled the jar with water and du...

We have a tradition in our house where people who come have to find the pickle on our tree.  Has anyone else ever heard of this? It's a German tradition where the parent hides it on Christmas Eve and the first child to find it gets a special gift. We don't do a present for finder and we hung it on our tree when we did the other ornaments, but it's fun see who is actually able to spot it.  It's always hidden in the boughs of the tree behind some other ornaments, so we don't make it too easy on you! If you want to read more than you ever wanted to know about the origins of the Christmas pickle, go here! Perhaps that's a weird family tradition to have, but it's our family tradition--and I love it!  What are some of your quirky (or not so quirky!) Christmas traditions?

"You look tired," says the unassuming clerk at the grocery store to the mom with two kids.  One, a bouncy little girl with golden curls, rides in the car in front of the cart while the other, a boy of maybe two, stares blankly into space in the front basket, supported by the blankets on either side of him.  His tongue escapes his mouth a bit and there is a little drip of drool on his chin.  A plastic tube protrudes from his neck, and he makes a noisy sound each time he breathes. "Tired?" the young mom shakes her head and chuckles.  "Yes, I suppose I am tired.  I'm tired of my son's life having to be so hard.  I'm tired of every achievement finally coming only after months of therapy and exercise.  I'm tired of the looks that other people give the son that I love so much.  I'm tired of the stares I can feel even when I'm not looking.  I'm tired of the rude and insensitve comments people make.  I'm tired of...

I made this handprint ornament a year ago.  When I did it, I was praying that it wouldn't be Abby's first and last Christmas. Happy birthday to me. :)  A beautiful family is the best present ever.

I turn 30 today.  I know.  Ugh. Meanwhile, I still get mistaken for a student at the 2 middle schools (not to even mention the high school!) I work at.  No one seems to notice my CCPS ID, or the fact that I carry a laptop and wheel around a crate full of materials.  Doesn't every middle schooler do that?? Anyway, I digress... So, last Friday, Matt had a surprise date planned for us.  I really thought the surprise was that he had no idea what we were doing, but I was pleasantly mistaken on that one.  He had arranged to have our awesome friends Jenn and Steven meet us at Walmart (Matt said he had to stop and get something, and then all of the sudden they jumped in the van!)  We then went to The Silver Skewer, a Persian restaurant that I'm shocked Matt would even consider, let alone like.  It was really good though, and right up my alley.  I love ethnic food and rarely get to be adventurous because about as "ethnic" as my steak-and-pota...

"My" kids (the two classes I work with on a regular basis) will hopefully be enjoying some yummy gingerbread men--so that I don't have to bring them home and eat them all myself!  They are GOOD...a little too good! (I'm teaching a little lesson on German holiday traditions to go along with their social studies unit on world cultures, and the Gingerbread house is a German tradition.  Since I can't really bring in materials to make houses, I figured cookies would suffice.)  :)

After spending last holiday season packed up in the garage... The Christmas dishes have officially been sprung!! These dishes are so "me."  I'm not a fancy person in the slightest, and I love how fun and cute...and blue...these are! My favorite is the salad plates, which we use for virtually everything except salad.  If I have salad, I eat it in a bowl.  Weird?  The "salad" plates have three different scenes on them, and they are all equally cute and whimsical!  My fav is the three caroling snowmen, though. Yay for Christmas dishes!  Because I do not live in a huge house where I have room for two sets of dishes, our everyday dishes are packed up in the same packaging we keep the Christmas dishes during the off-season and stored in the garage.  The nice thing about these dishes is that there's really nothing "Christmasy" about them, so I can (and do) keep them out all winter.  I usually put them away in February...or so... :)