Monday, February 28, 2011

Sir Caleb

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?) 

knight caleb

If you have a little knight that might enjoy a great quality suit of armor that is inexpensive, check out the link below:

Here, Fishy Fishy!

I told ya she loves to make fishy faces!

fishy face

head shot fish face

Sunday, February 27, 2011

Future Worship Leader

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!

Sofie Love

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 definitely bought this.  The weight of the little stuffed toy helps to keep the pacifier in.  I remember the nurses at MWPH talking about it, but never actually saw one.  They said it works really well!  For those of you whose babies spit theirs out like Abby does, it is worth a shot!  :)



 

Ok to Wake Alarm Clock




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!

Saturday, February 26, 2011

Sometimes

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 our situation.  Hopefully no one will be offended by this Debbie Downer post.  I have always tried to be transparent in my writing and think that one of the best ways to reach and encourage people is by being real.  I'm usually optomistic, but today isn't one of those days.  And that's okay, because God meets me where I am and holds me on the rough days.  I need to allow myself to share all of my emotions, not just the positive ones.  Thanks for praying.

Sadness

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.  This is a definite reminder to us to be thankful.

Please pray for Maggie's family as they deal with their loss.  My heart breaks over the death of any child, but I am truly broken for this family I've never met.

Cherry

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!

abby with cherry

Friday, February 25, 2011

She Sleeps Just Like Her Daddy

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!

abby with hands on chest

Winning Caption!

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!

Thursday, February 24, 2011

Just In Case You Were Wondering...

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

abby purple outfit close

abby purple outfit

Wednesday, February 23, 2011

Block Head, Take 2

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 arms out

Wordless Wednesday

blanket over head

blanket over head close

Tuesday, February 22, 2011

4 Months Old!

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!

four months 3
It's hard to get a good picture of the "four months" sign with the circuit in the way.

four months 2
Wahooooo!  I'm four months old today!

four months
I took over 100 shots tonight of her...and deleted most of them!

no more pics
No more pictures, please!

Doctor's Appointment #2

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!

My Favorite

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

abby purple outfit close up bw

Monday, February 21, 2011

Doctor's Appointment #1

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 trouble finding a parking spot in the garage (we had to park in a non-handicapped spot on the 5th level, which we have never had to do), our first doctor's appointment in the "big city" was smooth sailing!

Matt will be taking Abby tomorrow to her GI appointment.  Here's hoping the report for that one will be just as good!

Big Girl Outfit

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. 

abby purple outfit long

abby purple outfit close up

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.

Sunday, February 20, 2011

Calebisms

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!

Miss Personality

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 us!  This is especially apparent when Caleb comes in the room.  She is enamored with him, and I think the feeling is mutual!

*  Abby's favorite toys are her butterfly that makes a fun crinkling sound, a very soft pink puppy named Cherry, her magic spoon, and her glow seahorse that plays soft music.

*  Her least favorite activities include getting her trach ties changed, being suctioned, and having anyone touch her g-tube site.

*  Abby loves "Head, Shoulders, Knees, and Toes," "Skitamarink," "Our God," and "In Need of Grace."  Really, she loves any music.

*  My sister-in-law says that she stares into your soul with her big dark eyes.  She's definitely studying you when you hold her!

*  She loves making fishy faces and often copies me when I do it. 

*  Her favorite therapy exercises are "Sooooo big" (for arm tone) and lifting her up over our heads (for head control).  Her least favorites are holding her head to the right (to stretch out the muscles) and getting the inside of her cheek stretched (for oral stimulation). 

*  Abby is learning more and more how to "talk" around her trach, and we can usually hear her whenever she cries now.  She is also cooing a bit!

*  She loves to be held, but prefers to be held with her feet toward your belly and a hand under her head or turned around facing out.  She's too nosy to be cuddled.  She's gotta see what's going on.

*  The girl hiccups more than any baby I've ever seen.  I have no idea if this is related to her respiratory problems, but she definitely is above average in that category!

I hope this let you get to know our girl a little better!  Seriously, one day we will go out in public with her...one day...

Saturday, February 19, 2011

Vitamin D

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!

abby and momma 2

abby and momma
Matt was my photographer.  He got some good shots, didn't he?!  Unfortunately, that meant no pictures of him this time around.  Next time...

abby leaf
I showed Abby a leaf, which she loved!

leaf
It was so much fun to hold that she brought it inside with her--which we didn't know!

abby and momma outside 2
We traveled "light" this time too (just the vent) which was nice.

caleb on scooter
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!)

abby in the grass
As close to lying in the grass as Abby's going to get right now.

abby and momma outside
Let's just say that this perfectly wonderful day makes me kind of dread the snow in next week's forecast!

Friday, February 18, 2011

The Joy of Signing

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 is song lyrics I've picked up at church...not quite so useful in every day communication!  Being at RMH and getting to know a little girl who uses sign language for communication purposes really motivated us to learn it--and got Caleb very interested.

Be sure to ask Caleb to show you his name sign the next time you see him.  It's pretty cool!  (He made it up himself, in case there was any question!)  :)

Thursday, February 17, 2011

Flexibility

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 and praying that I will not get an emergency phone call.  While at work, I co-teach with a guy who is pretty much my polar opposite (oddly enough, we get along really well and I really enjoy working with him, even though he is not at all like me!).  I have no idea what my job situation will be next year, which leaves me with many questions about financial security and insurance.  I spend hours each day on the phone with people I'm forced to depend on for assistance and information.  And I am in no way getting the nine hours of sleep I previously needed in order to function the next day.  Now, I see that I really only need five or six...and a can of Coke with breakfast.

***giggle giggle giggle *** (God's getting a good laugh out of this one.)

All you can do is laugh, right?  :)

Wednesday, February 16, 2011

Tuesday, February 15, 2011

All Warm and Snuggly

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!

snuggly 3

snuggly 2

snuggly

Prayer Requests

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.  This is really hard because of the nursing hours and all of the stuff we have to do.  We did manage to get away for a few hours on Sunday afternoon, which was much needed.  It's been a long 5 months.

*  We will either be able to get more rest or some kind of IV caffeine drip!  :)  Hey, they do it for babies!  Yeah, we're both really tired...all of the time.

I'm hoping to have some time to write a thoughtful post sometime soon when I have some time.  Until then, there are a few more photo posts on the way.  :)

Monday, February 14, 2011

Sweet Tooth

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

nerds

nerds caleb and abby

All You Need is Love

Happy Valentine's Day...

caleb laying on abby's pillow

caleb and abby posed

playing

caleb and abby kiss

abby and caleb

Love,
The Leach Family

Sunday, February 13, 2011

Learning Young

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

abby folded hands 3

abby folded hands 2

abby folded hands

Saturday, February 12, 2011

True Love

playing 2 bw

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

Friday, February 11, 2011

Standing on My Soap Box

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.*

Thursday, February 10, 2011

Thankful Thursday

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.  Isn't that incredible?!  Our God is providing for every need we have. 

Thank you Lord for allowing me to work for such a wonderful school system and for providing a way for me to continue to teach and take care of Abby!!!

The Magic Spoon

Abby has a magic spoon.

Yep, it really is magic!

It gives her the power to calm herself down when she's crying...
spoon 4 eating 2

She can make people coo and laugh at her at will...
spoon 2

And she can suddenly fall asleep at the drop of a hat!
spoon sleeping

Wednesday, February 9, 2011

Tuesday, February 8, 2011

On Why You Should Never Stand Up Your Portable Ventilator

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 advice because she hasn't seen her yet.  (Our first appointment is in a few weeks.)  So, I called the GI at UMMC, who gave me a few things to do to check it out.  Everything looked good, so we continued the feed and went about our merry way.

My first thought after it happened was, we are so going back to the hospital AGAIN!  Poor Abby was in a lot of pain and is now even more angry when we touch her gtube than ever!  We finally got a smile out of her a few hours later, but she was definitely hurting. 

Thank goodness this did not put us back in the hospital!

So yeah...make sure you always lay your portable ventilator on the floor.  Don't try to stand it up.  You know, just in case you ever have a ventilator.  Don't say I didn't warn you!

Sleeping Beauty

scratching head

the thinker 2

the thinker

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

Monday, February 7, 2011

Caleb's Life Goals

Caleb is considering his career options.

He either wants to be....
elton john
elton john 2
Elton John Batman
the cleaning cart 2
the cleaning cart
or a Batman janitor

Thoughts?  Suggestions?  Therapy recommendations?