Life as a Leach

He swore he was hugging her, but it looks rather painful to me...

Here are a few pictures I took on the 22nd to celebrate Abby turning five months old.  Sorry they're a little late! Who, me?  I'm five months old? She's loving the Bumbo seat more each day! My big girl! Happy five months, Abby Joy!  May there be about 1,000 more!!  :)

Dr. S, the chief of orthopaedic surgery at JH, is a world-renowned spinal surgeon.  He is one of the best in the world and is very highly respected in the spinal world.  We knew he was who we wanted to see to find out more about Abby's spine. In Abby's initial spinal xrays, she had scoliosis and kyphosis (a curve and a hunchback).  We were looking at several spinal surgeries involving metal rods and spinal fusion.  We were bracing ourselves for the announcement of the first of several surgeries at today's appointment. So imagine our surprise when Dr. S said that she no longer has scoliosis and that her kyphosis is within the normal limits!!  NO spinal surgeries are needed!!  We don't even need to follow-up unless our pediatrician sees something concerning.  AMAZING. We were in shock...still are, I think!  I'm processing everything slowly because for five months we just assumed that metal rods were in our future.  After today,...

...got fat rolls!?!?!? (Is it weird that I take pictures of my daughter's fat rolls because I'm so excited that she finally has them?)

Matt thought this would look like Abby was flying through the air... I'm not sure it was quite the effect he was going for, but whatever...she's cute anyway.  :)

Today, we said our last goodbyes to a wonderful woman, Cindy Stiles.  Cindy has worked with my dad for many years, but I began building a relationship with her four years ago when I started tutoring her grandson.  Since then, they have become a dear family to me and I have loved watching M grow into a fine young man. Cindy passed away suddenly last Sunday from a massive heart attack.  It is such a sad, sad situation and it has naturally been very hard on the family.  Her husband went into the hospital just a day later with pacemaker issues, but is thankfully out and doing better. The memorial service was today and it was a sweet time of remembering Cindy.  I loved hearing stories about her through the years!  What I remember most was her unconditional love for her child and grandchild.  She only wanted the best for them.  While she was often hard on M when it came to schoolwork, it was only because she knew he could do better. Matt...

Yes, you read that right...not a Calebism...a Sara ism.  She's my five year old neice, and she's equally as hysterical as Caleb. We took Sara and Owen to a birthday party with Caleb last week and got some lunch afterwards. Owen was sharing with us about his recent experience at Camp Wabanna for their retreat, and Matt and I were telling him about our days as counselors there. Matt informed Owen that he never let campers sleep on the top bunk above him because he had the young ones and he didn't want them to pee on him.  Sara, in all seriousness, asked, "So did you sleep on the top bunk so that you could pee on them?" Oh, Sara!

I'm sitting here tonight, working on Abby's book for her dedication and looking through old pictures.  I just can't help but marvel at how far we've come. Abby is five months old...nothing short of a miracle.  She's nearly halfway to blowing the statistics out of the water! She is gaining so much weight and has nearly tripled her birth weight.  She's no longer burning up all of her calories to breathe.  My girl's got fat rolls!!! I remember a time not so long ago when we were terrified at the thought of being Abby's caregivers.  Now, I can talk on the phone while pulling meds and setting up a feed!  (I'm still not "comfortable" with trach changes, but I don't think that's really possible!) We are in a sort of routine (as routine as you can get around here!) and are learning what life is going to be like.  Looking back on those first few days of Abby's life, I realize just how terrified I was.  While I was kind of in a...

I am so thankful for a husband who loves his kids and is so hands-on with them.  He's a great dad.

We went for Abby's GI appointment today and she weighs 11 lbs, 4 oz now!!  My little chub ball gained a pound in a week!  That weight puts her into the 7th percentile, which is very exciting. She's only going to get bigger, because now the doctor has added in an additional feed during the daytime (she now gets them at 9a, 12p, 3p, and 6p) and increased each feed to 75 mls.  That's a total of 90 extra mls a day!!  We still have to go back once a month for a while until they "figure her out," but we're pleased that her feeds are able to be increased. That's the update for today...sorry for the lack of creative posting recently.  Things have been rather CRAZY this week (crazier than normal, if that's possible!) and I haven't had a lot of time to write.  I have some things floating around in my head though, so I'll write some more posts as soon as I get some more time.  For now, though, it's time to pay the bills and clean up the kitchen...

My sister's daughter, Anna, was dedicated last week and Amy asked family and friends to write messages for her at the reception.  It was a really sweet idea and I would like to do something similar for Abby, so I'm shamelessly stealing my sister's creative concept.  (She knows, so I guess it isn't stealing...borrowing, perhaps??) Abby's dedication will be on May 15th and we are so excited for it!  Unfortunately, because of the risk of infection, we won't be able to have a reception or party for her.  This makes me so sad because there's nothing I want more than to show my girl off and celebrate her life with family and friends!  It's just not a good idea for her to be around a lot of people, and especially not kids.  We just can't take the risk when she's still so susceptible to germs.  Some of you might think we're crazy or a bit over-the-top, and that's fine.  But I know that we need to do whatever we can to protect Abby, and there...

This one is super quick. Last night, Caleb thanked God in his prayer for the suction machine. It is a pretty wonderful invention that sucks the secretions out of Abby's trach, nose, and mouth...but it's not normally on a typical four year old's prayer list.  :)

Matt "caught" these pictures the other day during our gorgeous weather.  I like 'em!

Yep, I know this is blurry.  But it's just the essence of Caleb!

Signs of Spring around our house...

...the caption winner!!! Your task was to come up with a clever caption for this photo: And we had some pretty cute ones!  Some favorites were: Hey Mooooommmmmm, did you SEE what Caleb just ATE? yuck!  ~Carrie (If you know Caleb, then you know this isn't a far-off statement...the kid is ALL boy!) You call that a cabbage patch! ~Ferguson Family (in light of Caleb's dance craze) Is that another " stink bug " I see crawling towards me?? ~Dona (Thankfully, we live too close to the beach to get these, but I hear they are taking over some houses!) OH MAN!!! Her she Comes with that camera AGAIN!!!! ~Eric (I'm afraid she may get flash blindness!) But the winner of the $15 gift certificate goes to: (drum roll, please!) .................... Again with the trach tie change????? are you KIDDING me, Mom???? (and a little huffy sigh) ~Betsie! Congrats, Betsie!  You know Abby well, because she seriously does get this look when we put her on the...

You have about three hours left to enter the caption contest to earn a $15 gift certificate!  Leave your comments on the blog, on Facebook, or by email.  :)

Yesterday was a beautiful day!  My car thermostat read 81 degrees as I drove home....so you know what that means!!! We headed outside with the kiddos and enjoyed the weather!   Abby occupied herself with a leaf for a good chunk of time. It found its way to her mouth, so I had to take it away. After a little convincing, Matt got Caleb to play catch with him. They had a grand time throwing the ball up the hill and catching it as it ran down. Caleb's got a good arm on him when he tries! Abby got bored with the game and decided to take a nap. She did enjoy lounging with me. Of course, we've got to have some cuddle time with Daddy! There are some other pictures to share as well, but I'm going to save them for another post.  :)

I know I've shared this photo before, but Joanna doctored it up and it was worth sharing again!  :)

Just a quick post to let you know that I am loving the comments that everybody is leaving on my blog--especially the ones regarding the recent post about how to talk to your child about a special needs child.  It took me a while to figure out how I feel about all of that (with lots of questions to other parents with special needs children!) and I'm glad that others are getting something from my thoughts.  I can't speak for other parents, but I would much prefer to hear a parent discussing Abby openly and compassionately than shushing him/her and turning away.  Anyway, thanks for all of the blog love!  :)  Muuuuuaaaaaaaahhhhh!

*  I'm loving the captions that I have rolling in through Facebook, the comment section, and email.  Keep 'em coming!  If you think of something clever in the middle of the night, feel free to submit more than one.  :) *  Abby went for a consultation for a helmet yesterday.  It would be to help her head shape, but she isn't going to be able to get one.  Unfortunately, it's because of the surgeries she will have.  Since she can't wear it during surgery or recovery, it's not going to be much good for her.  We might be able to try again in another year. *  We're currently at battle with the night nurses to keep them from waking Abby up to change her diaper.  She was being changed 6 or 7 times a night (I KNOW!) and was not able to get a good night's sleep.  One nurse actually told me that I would need to get approval from the agency in order to ask the nurses not to wake her up.  Yeah, that went over real well.....

I recently saw this video on Facebook.  While Abby is not deaf, we will most likely be using signing to communicate...and we can relate all-too-well to the stares.  We haven't encountered any blatant rudeness yet, but I am sure we will not be able to avoid it forever.  We had an experience with a little girl about Caleb's age at the pediatrician's office while we were waiting for the elevator.  She pointed to Abby's tubes and asked what they were.  Her mother hushed her, much like a lot of you would have done...much like I would have done not so long ago.  I told her mom that it was okay and invited the little girl to come over to the stroller.  I showed her the tubes and explained that they help Abby to breathe.  She asked why she had them and I told her that Abby had trouble breathing when she was born and that these make it so that she can.  She explored the stroller a bit more and asked lots of questions.  By the time the elevato...

..Then ya shoulda put a ring on it! Caleb has been playing this song wayyyyyy too much.  Even Abby knows the motions!

Sooooooo, the other day, I was randomly checking out LCD TV stands  and ended up getting hooked up with a company who is willing to do a giveaway for my blog!!!  They get some free advertising and I get to give away a prize!  Yes, I know, it's very exciting ! In order to enter the contest,  just leave your best caption for the photo below on either my blog or under the Facebook post...or you can even email it to me!  You can enter more than once if you like, and the more creative the better!  :) The winner will receive a $15 gift certificate to this store , which is actually over 200 stores...you can find just about anything!  I saw lots of great toys on there for a variety of ages.  They also have lots of home decor items.  Like I said, they've got it all. The contest starts NOW and ends at 9:00 p.m. Saturday.  Happy captioning!  :)

I found this picture of Caleb and Becky recently.  That boy loved his dog!

My friend Joanna has been doctoring up some of my photos with her editing magic.  Fun, huh?!

Things I love about this picture: 1.  Matt's eyes are closed, showing he's enjoying the moment 2.  Abby is peaking out at me 3.  Her little fist is right up at Matt's neck 4.  Abby looks so content and peaceful 5.  It's in black and white 6.  Two of my three favorite people are in it (and if you look closely, my third favorite person's name is in the background!) <3

We don't have nursing tonight...but Abby still needs 24 hour care...and an alert and aware caregiver...which means that we will be taking turns staying up tonight. To make things just a little bit more difficult, Caleb has a dentist appointment at 9:30 on Monday morning.  If you see me at work on Monday afternoon, please ignore the deep blue circles under my eyes.  I'm sure it's just eyeshadow.

It is so hard saying goodbye to a dog who has been such a huge part of your family.  It hits us at strange times...like when there is too much space between the island and the counter because her dog bowl is gone...or a piece of food drops on the floor and it's still there after dinner...or her leash is lying on the steps waiting to be hooked onto her collar.  There are no muddy pawprints on the floor, no slobber marks on the sliding door, and the kitchen floor is missing the many pieces of dog food she used to scatter.  I can't believe I ever complained about those!  To easy the missing a bit (for all of us!), we made Becky a cross out of two paint sticks.  We painted and decorated it with the colors Caleb chose.  Then Caleb wrote Becky a special note that he placed upside down on her grave so that she could read it.  We lit a sparkler in honor of Becky but were careful not to push it too far down because Caleb was concerned it might burn he...

...This

1.  Our pulminary appointment was anticlimatic.  It was supposed to be the magical appointment that gave us the answers to all of life's questions (or at least a lot of questions that we had about Abby's development!) but it didn't.  We've come to the conclusion that no one really knows what to do with Abby and therefore no one wants to take responsibility for her.  :o/  2.  I am super excited about my first giveaway!  Stay tuned for more details probably next week.  I'm hoping that this will be the first of many for you wonderful blog readers and stalkers! 3.  Today was the BIG test for which I've been studying for the last month.  The real test wasn't nearly as difficult overall as the practice test I took, so I'm hoping for good results.  We'll find out in a month! 4.  I found a new consignment shop owned by some SLES parents.  It's very fun with good prices, so if you are local, check out Cleaning Out O...

If any of you have young milk drinkers and try to buy organic products, you are probably familiar with Horizon Milk.  This stuff is pretty pricey in the grocery store (a half gallon is as much as a whole gallon of non-organic!) but it's a pretty good deal on Amazon for the individual cartons.  Plus, you can sign up for subscribe-and-save and save an extra 15%!  (Remember to cancel it after you get the milk!)  Note:  I believe that only diapers and wipes earn a 30% discount.  Most other things seem to be 15%. Also, check the e-clippable coupons because I have seen Horizon on there every now and then!  You can save an extra couple of dollars! These are great to throw in with lunches, and they don't need to be refridgerated!  We are water-and-milk people, so Caleb pretty much just gets one or the other in his lunches.  Happy milk-drinking!

:)

(Last night while praying before bed)  "God is great and please help Abby not to drool anymore.  Amen." (holding a plastic recorder)  "This is my sword, you know, for safety.  Just in case there are any bad guys." (at the dinner table)  Me:  (looking at Caleb drinking orange soda)  What are you drinking???? Caleb (immediately pointing at Matt):  It's Daddy's fault! (for the record on that one, it was the last swallow in the can after Matt poured it into his glass, so he didn't have crazy amounts...but this still goes against our water and milk rule...)

Caleb has been listening to his "Alvin and the Chipmunks" cd nonstop recently...and dancing!!!  The kid just loves to dance.  The nurses just laugh at him and Abby is completely enthralled with his antics.  The other night, my aunt started to dance with him and Caleb stopped completely and stated very plainly, "Get off the stage.  I'm trying to dance!"  Oh my goodness...

If you know me, you know I have a little obsession with Vera Bradley.  It's not over the top to have a matching lunch bag, ID badge, purse, and necklace, is it?!  My favorite pattern is Purple Punch, and that is the pattern my Weekender bag is in.  They don't have that pattern on Amazon, but they have several other cute patterns.    We use the Weekender as the to-go bag, which is our diaper bag and everything else we need when we go somewhere.  That's a lot of stuff, and the Weekender holds it all!  There are lots of pockets both inside and out, and even with everything we bring with us there is still room for toss-ins.  I actually like it better than the Vera Bradley diaper bag because it has a long strap to carry with in addition to the short over the shoulder straps.  Plus, it's bigger and has a wider (as opposed to deeper) shape so that it's easier to find things.   My primary use for it has been as a to-go bag, but I know tha...

Beautiful Girl! (Does anyone else picture Richard Dreifuss signing that during Mr Holland's Opus , or is it just me?!)

I recently joined Amazon Mom, and OHHHHHH boy, am I hooked!  I will never buy diapers from the grocery store again (unless, you know, we run out...because expensive diapers are better than no diapers at all!) With Amazon Mom, you get a free three month subscription to Amazon Prime, which means free 2-day shipping.  Yay!  Plus, with every $25 you spend, you extend your membership a month.  Double yay!!  You can use coupons that are found in a lot of the baby magazines like American Baby, Parenting, Parents, etc.  They might be for $10 off diapers or 20% off your total order.  The catch is that each coupon can only be used once, so no coupon code sharing.  Coupons do often stack though, so you could use a $10 off and 20% off coupon at once.  Amazon also has e-clippable coupons (you choose the one you want to "clip" online.  I got an extra $2 diapers last time!) Then, when you order your diapers, wipes, etc. from Amazon Mom, you want ...

Rock the MSA, SLES!!  :)

We're trying to get Abby on her tummy at least three times a day.  This is difficult for a couple of reasons: 1.  The tubes pretty much get in the way. 2.  She hates it with a passion. 3.  The crying stirs up secretions, which necessitates suctioning...which indirectly means that she gets her way. Nevertheless, we work hard at distracting her so that she can get that oh-so-important tummy time! We have a special therapy roll that kind of keeps the cords between the rolls and keeps her from lying directly on them. "I'm fightin' mad here and all Daddy can do is take pictures!" A little calmer, now that Caleb is talking to her!