Life as a Leach

Caleb received a suit of armor for Christmas.  Funny enough, Santa accidentally left it under the bed when he brought in the rest of the toys and we didn't find it for a few days!  Silly, stressed-out, distracted Santa! This suit of armor has been able to withstand much charging, defending, and sword fighting.  It's even been known to protect the knight from Nerf gun bullets.  :) He's really into knights, dragons, kings, and rescuing the fair maiden (me) from the evil Joker.  (He's also Batman, remember?)  If you have a little knight that might enjoy a great quality suit of armor that is inexpensive, check out the link below:

I told ya she loves to make fishy faces!

I seriously can see Caleb becoming a worship leader when he gets older.  He loves music and I would gladly encourage learning the guitar!  The kid will break out in songs ALL DAY LONG!  I love this kid!

Nina and Paw Paw gave Abby a Sofie after seeing how much Anna likes hers.  The best thing about this little teething toy is how easy it is to squeak!  Abby can do it almost effortlessly, so she always gets a surprised look on her face when she hears it.  Sofie's neck and legs also make for easy holding for the little ones.  Abby especially  likes whacking me with it when she's angry!  She hasn't quite figured out how to get the nubs in her mouth to chew on yet, but that will come.  I think it's a little too big for her tiny mouth right now. Little Sofie doesn't look like much, but my experience is that the babies love it!  Added bonus:  right now, Sofie is on sale!  Check out the link below. In the other link, Sofie is paired with a weighted pacifier.  Being the mom of a baby that can't keep a pacifier in her mouth, I think this is brilliant!   If Abby hadn't decided to be a finger sucker, I would have defin...

Remember when I told you about Caleb's special alarm clock?  Let me tell you, it works wonderfully!   I love that when he wakes up at ridiculously early hours of the morning, he simply stays in his room and plays until the alarm clock turns green.  There's a nap timer on there too.  You can make it beep or glow--we choose to have it glow because I don't wake sleeping boys!  :)  When Caleb has spent the night at relatives' houses recently, they have also been taking the alarm clock.  I guess they don't like 5:30 a.m. wake up visits either... :)  If you have an early riser that you wish would sleep just a little longer, then check this out.  Seriously, I love it!   I'm now an Amazon Associate and will occasionally be writing posts about certain Amazon products that interest me.  Feel free to click the picture or link above if you want to check out the alarm clock!

Sometimes I'm positive, upbeat, and optimistic. And sometimes there's nothing to say but this stinks. Sometimes I remind myself that we were chosen by God to be Abby's parents. And sometimes I ask why? Sometimes I just take it one day at a time. And sometimes I crumble at the thought of everything ahead of us. Sometimes I am so thankful for nurses that allow us to sleep and get a few things done. And sometimes I just want to push them all out the door and regain my privacy. Sometimes I realize that I really do know how to meet Abby's medical needs. And sometimes I feel so inadequate and incompetent. Sometimes I share how Abby is beating the odds. And sometimes I wonder what beating the odds really means. Sometimes this blog is meant to encourage others. And sometimes I just need to be real and let you know how I'm really feeling. This weekend has been pretty rough.  Maggie's story has hit me hard and I've been reminded of the reality of ...

Today, I found out that a beautiful little girl with CCMS passed away.  "Miracle Maggie,"  as her parents referred to her, lost her battle on February 15th.  She was 7 months old and never made it home from the hospital.  I think this was the saddest part for me. I have had the privilege of speaking with Maggie's mom over email several times and find we have lots in common!  Both parents are elementary teachers and have been trusting God through this situation.  Her parents wrote a lovely letter on their blog describing Maggie's last moments and sharing their feelings.  Unless you've ever had a child connected to tubes and wires 24/7, you can't understand the freedom they mention.  I definitely lost it at that part. Matt and I were reminded today just how much of a miracle our Abby Girl is.  While it's easy to become engrossed in the is today the day? question, we try so hard to enjoy every minute we have with our daughter.  T...

Abby loves her soft puppy that Great Grandma got her.  The fur is extremely soft and she is just the right size for cuddling!  Abby even strokes the puppy's ears sometimes.  She has a picture of cherries on her ear and is actually a Webkins.  (Abby goes online and plays sometimes!)  When we asked Caleb what we should name her, he promptly answered: Strawberry. Really? Now, you must understand.  Caleb knows that dinosaurs were carnivores, that carnivores eat meat, and that herbivores eat plants.  He knows more sign language than most adults.  He uses the word actually in almost every sentence.  He knows the names of the fruits! But he was dead set on naming this puppy Strawberry. After much cohercing, we finally agreed to call her Cherry. Anyway, I digress.  Here's Abby with Cherry!

Matt sleeps like he's in a coffin. Both hands are neatly clasp on his chest and he is flat on his back.  It's a little weird.  I won't lie--I have been known to check his breathing now and then. Somehow, Abby Girl has inherited a similar sleeping position!

The winner of the recent caption contest post is Sandy! "Oh no- not another trach change--do you guys think you could just let it go--just this once!!" (I'm pretty sure she'd be saying that not just about trach changes, but about trach care in genereral!  She HATES it!) I also liked "future orchestra conductor" by Marjorie and "Gee Mom, thanks for a clean nose" by Christine. 1,000 bonus points to you, Sandy!  :)  Thanks for all of the great captions people sent in through email, Facebook, and commenting!

...Yes, Abby is still in love with her fingers.

Anybody got a good caption for this one?  We'd love to hear them!  Leave a comment making up a good caption for this picture and you'll win 1,000 bonus points from me!!  :)

Abby is four months old today.  It's funny how time crept by while she was hospitalized, but has seemed to speed up since we've been home! It's hard to get a good picture of the "four months" sign with the circuit in the way. Wahooooo!  I'm four months old today! I took over 100 shots tonight of her...and deleted most of them! No more pictures, please!

Abby's GI appointment was equally positive.  She weighs a whopping 9 lbs 3 oz now, and the doctor was pleased with her growth.  Get this:  Abby is very nearly on the chart now for weight!!!!!  :) Her g-tube looks good and the doctor increased her feeds a bit.  Now she gets 70 mls during the day and 30 mls continuously at night.  We'll go back in a month when she will hopefully get another increase! Our next appointment is pulminology, but it's not for a few more weeks.  After we learn about her lung function, we'll be able to go to orthopedics and craniofacial.  That's when we'll learn about the surgeries Abby might have this summer.  It's a lot to deal with, but I'm thankful that we're to the point where we actually can discuss things other than the airway.  It means that Abby is stable enough to move forward!

She's my favorite little girl.  Happy 4 months, Abby Joy!

Abby went to the opthomologist today and it went really well!  We are going to return for another appointment in June, but he thinks that her optic nerves are within the normal range!  He has no reason to believe that she'll have any major issues (besides glasses, but welcome to the family!)  In fact, he said that the eyes are on page two of her long list of concerns.  :) I really liked this doctor and learned from a newsletter in the waiting room that he is world renowned for pediatric opthomology.  He was direct, but not brisk.  He was very friendly and good with Abby too! We did learn to always bring the back-up battery into the building with us (it was in the car) because we had to hustle it out of there in order to switch the battery.  It wasn't an emergency because the vent has an internal battery of about 45 minutes, but it would have been much easier if we'd just brought it in.  Lesson learned!  Other than that and a bit of troubl...

Abby and I had a fashion show last night.  She didn't care for it much, but I did get a feel for the size she is in and how "regular" clothes work on her.  It's a little tricky getting pull-over clothes on, but it's doable. I tried several outfits on her before I settled on this one.  I'm not sure why, but there's something about being out of just sleepers and into a "big girl outfit" that makes me really happy.  It's like Abby has finally graduated at four months!  I think it's just a little bit of "normal" in an otherwise very abnormal time.  We'll probably still do a lot of sleepers when we're at home, but I like that I could put her into a cute little outfit for her doctor's appointment.

I've been posting an awful lot about Abby recently.  I think it's time for some totally Calebisms! "Mommies and Daddies have to share their treats with kids no matter what.  Kids don't have to share theirs if they are really yummy." "Dinosaur babies drink dinosaur milk." "I'm just gonna pray for one dead dog tonight."  (Explanation:  Caleb often prays for a whole list of the dogs in his life that have passed away.  We've tried to explain that you don't need to pray for them once they're dead, but he still does...every night!) "Momma, you'll never get thirsty.  If you are, you can just drink your own milk!"  (ahhh, the joys of providing Mommy Milk with a four year old around!) "Can I go in the Secret Room (where we store future presents) if I promise not to look at the stuff I'm not supposed to see?" This kid is one grand MESS!

I thought I'd share a little about the budding personality my girl has.  She's pretty entertaining! *  Abby LOVES to play 'possum' when she doesn't want people messing with her.  If she is tired of whatever you're doing, she simply closes her eyes until you stop the unwanted behavior.  Then she promptly "wakes up!" *  She is growing like a weed.  At last weigh-in at the beginning of February, she was 8 lbs 13 oz.    She has been gaining about 8 oz a week, so I think she's probably over 10 lbs by now.  We'll see when we go to the doctor this week! *  The girl lets you know when she is hungry!  About a half an hour before the feed is due, she starts getting fussy and sucking on her beloved left pointer finger really hard.  We're hoping to get her feeds increased soon. *  Whenever she sees any of us or hears our voice, she starts kicking and moving her arms very excitedly.  I think she likes u...

Yesterday, we enjoyed the fabulous weather as a family of four!  Now, before I get a bunch of comments about how it's not good to take Abby outside, hear me out.  We were only outside for about 10 minutes with her, it was 70 degrees, and she had a blanket.  There is nothing wrong with a little Vitamin D, and we can't keep her inside forever.  We're already locked away for winter, so we need to enjoy these nice days while we have them! Matt was my photographer.  He got some good shots, didn't he?!  Unfortunately, that meant no pictures of him this time around.  Next time... I showed Abby a leaf, which she loved! It was so much fun to hold that she brought it inside with her--which we didn't know! We traveled "light" this time too (just the vent) which was nice. Caleb had a grand time zooming all around on his too-small scooter that he refuses to give up.  (Ignore the look on my face--I look annoyed, but I wasn't!) As close ...

Our family has been learning sign language.  We're just doing a little here and there as our schedule allows, but we've really been trying to practice what we're learning.  A good time to do that has been at dinner, and Caleb is soaking it all up like a sponge.  The other night, he randomly signed "No running inside" without any prompting.  We hadn't done those signs in WEEKS, and he remembered it!  (To be honest, I'd forgotten the sign for running!)  Abby passed her hearing test and we don't have any concerns about hearing loss, but it is pretty difficult to talk with a trach.  We plan to use sign language with her so that she will be able to learn it and communicate with us.  Eventually, we probably won't need to use too much to talk to her, and will just interpret what she is signing to us.  But she's gotta learn somehow!  I've always thought sign language was beautiful and have learned a little over the years, but most of it...

I'm a planner.  Have you noticed?  I'm not exactly the most flexible person in the world. In fact, when I student taught, my cooperating teacher only had one piece of constructive criticism:  I need to be a little more flexible and open to "teachable moments."  So yeah, it's always been a bit of a struggle for me.  I hate change--what can I say? I'm pretty sure I hear God laughing right now.  My not-so-flexible self has been forced to live day-by-day, minute-by-minute, never knowing what tomorrow will bring.  I have flown in medical transport helicopters twice in the last four months, have lived, walked, and driven in a big city, and have been away from my son way too often. Piles have erupted all over my house and my idea of cleaning up is shifting and reorganizing the piles.  I've welcomed four strangers into my house, acknowledging that I can't do this alone, and entrusted my daughter in their care while I go to work, hoping a...

My girl LOVES her snuggly blankets!  Matt tells Abby she's special because she gets to sleep with soft blankets and stuffed toys while other babies can't.  I guess there are perks to being on monitors and having someone watch you 24/7!

If you've noticed, I haven't been writing as much recently.  Perhaps that's because I'm just a little busy these days!!  :)  I do have some prayer requests though: * Abby will continue to grow strong and stay out of the hospital! * We have two doctors appointments next week. One is an opthomology appointment to check her optic nerves. Pray that they are developing and that she won't need any more intervention than glasses! The other is a GI appointment to check her g-tube and hopefully they will increase her feeds so that she'll grow some more! *  We will continue to adjust to having people in our house day in and day out.  It is not easy, and especially not for a control freak like me. *  Caleb will open up and share his feelings with us.  We've had a few conversations with him that have led us to believe that there's a lot more going on in his head than he lets on. *  Matt and I will be able to spend time together every now and then....

Can you have a sweet tooth without having any teeth?  Abby stole Caleb's box of Nerds and wouldn't give them back! 

Happy Valentine's Day... Love, The Leach Family

Every night, we pray and sing downstairs as a family.  Abby's learning to pray too!

If this isn't a picture of love, I don't know what is. 

One of my pet peeves is when people do not move out of the way for emergency vehicles.  I know you're in a hurry.  I know that you just want to get home to your family after work.  I know you've got a million things to do.  But GET OUT OF THE WAY!! It's always bothered me when people won't move, but especially now.  Have you ever ridden in a speeding ambulance?  Have you ever had to slow down in that ambulance because people won't move?  Has the amount of time you spend in the ambulance been critical for your child's health?  Well, I can answer yes to all of those.  So next time an emergency vehicle is coming up behind you, put aside all of the reasons that you don't want to pull over and add another 30 seconds to your commute and just DO IT.  Because that is somebody's child in that ambulance.  I hope it never has to be yours. *I'll step down off of my soap box now.*

I'm so thankful for my school system.  They have been absolutely incredible during all of this craziness.  I've mentioned how fabulous my principal has been, but she really has been incredibly patient and flexible with me!  The executive team at the BOE has been wonderful too, and I really appreciate the compassion they have shown my family.  It's been such a relief knowing that I have so many people in my corner when it comes to  my job situation. Yesterday marked my first official day back to school.  I'll be part-time for the remainder of the year, using leave for the time I'm not working.  My sub will continue to work in the afternoons...but we found out yesterday in a meeting that the BOE has offered to keep him on full-time so that we will team teach when I am there!  I won't have to worry about writing sub plans when I'm gone for a doctor's appointment, and there will be someone there in case I can't come in at the last moment....

Abby has a magic spoon. Yep, it really is magic! It gives her the power to calm herself down when she's crying... She can make people coo and laugh at her at will... And she can suddenly fall asleep at the drop of a hat!

In case you ever have a child on a ventilator, never stand up the portable one.  Always lay it down on the floor.  If you don't, it might fall over and land on the feeding line, putting weight on it and causing the feeding tube to come out. Yes, this did happen to us last night.  Abby's Mic-Key button (her feeding tube) got yanked out with the balloon (that keeps it inside her belly) still inflated.  OUCH!  If you could hear Abby cry, I'm pretty sure that our neighbors would have heard it. I heard a pop and thought to myself, that sounded like a balloon popping.   I quickly realized what it was and set to work fixing the problem.  We got a new button and inserted it (the hole closes up really fast so you have to do it quickly!) but I didn't want to continue Abby's feed without talking to a doctor.  I called the pediatrician, who said to call the surgeon to be safe.  I called the GI at JH, who said that she couldn't give any adv...

Don't you wish you were this cute while you slept?!

Caleb is considering his career options. He either wants to be.... Elton John Batman or a Batman janitor Thoughts?  Suggestions?  Therapy recommendations?