Sunday, July 31, 2011

Before and After

We've noticed a real difference in the shape of Abby's head since she's been wearing the helmet.  I hope that you can see the difference in these pictures!

This was taken the day before Abby got her helmet.

This was taken about three weeks after she got her helmet.

I can see it in the shape of the front of her head too.  The skull is definitely filling in in the back now and her head isn't as wide. 

This picture makes her cheeks look humongous! 

Every now and then, I will try to post some pictures of the head-shaping process.  I'm glad it's working!!

23 Hours a Day

That's how long Abby has to wear her helmet.  We take it off only for weekly therapy sessions and one hour a day for bathtime and trach care.

Abby has grown to tolerate her helmet and doesn't fuss about it anymore like she used to, but you have to see her reaction when we take it off!  She acts like this every single time.  It's so cute!!

Also:  the baby wipe near Abby's head has chocolate on it from her chocolate tasting experience....not some other substance that looks very similar!  :)

One Thousandth Post!!!

This is #1,000!  Isn't that crazy??  What is even crazier is that my blog is going to be reaching 100,000 hits in the next few days.  Insane!!  Thank you guys for sticking with me and for loving my girl.  It means so much to us to have so many people praying for Abby, cheering her on, and celebrating with us when she hits a milestone!

To celebrate the 1,000th post and the 100,000th hit, I'm going to do a little giveaway!  I have some LOCK & LOCK products for one lucky reader!!  You will receive a teal-lid large box (it's called a lunch box, but it can be used just as a regular storage container), a small round, and two small rectangulars.  You'll also get a water bottle!  If you're not local, no worries!  I'll mail it to ya!!  :)

**Both of these L&L products were purchased by me.  I received no reimbursement for doing this giveaway. I just wanted to have a little fun and do something nice as a way of saying thanks for putting up with me!  :)

Alllllllll you have to do to be part of this giveaway is to leave a little comment telling me an interesting tidbit you've learned about our family from the blog.  Just please make sure you leave it on this post...not on Facebook.  I'm doing the random number generator to determine a winner and need all of the comments to be in one place.  Comments left on Facebook won't count.  :(

One comment per person, please!  Naturally, you have to include your name in your comment in order for it to count.  If you do it as "anonymous," just make sure you sign your name!  You can also tweet about the contest, post the contest on your blog or Facebook, etc.  Each time you do, post another comment on here telling me what you did, with links if possible, for an extra chance to win!!  (If you tweet about it, put it on your blog, and post it on Facebook, be sure to enter it in as 3 different comments so that you get 3 chances to win!) 

The comments will close on Tuesday at 10:00 p.m.  After that, I will do the random number generator to determine a winner!  :)

Yay!  I hope we get lots of entries!!  (If not, I'm going to feel totally insecure, so please help me out and leave a comment!)

Water Park

Caleb loved the water park!  He stayed at this one castle the marjority of the time.  Look at how he is studying how the water poured out of this hole.  :)

I'm not sure why he's doing this.  He never told me, but he was like this for quite some time.


There was much more to the water park than just this, but it was bigger with a whole lot more water, so I was unwilling to risk getting my camera wet!  This area was for the young ones with much smaller amounts of water.  Caleb seemed to prefer this area, even though he had a good time on the bigger stuff too.

You know it's been a fun day at the water park when they both willingly lie down for naps!

(She's clutching her feeding tube.  The girl loves her food!)  :)

Saturday, July 30, 2011

The Diving Show

Caleb and Matt went to a diving show based on The Frog Prince.  Unfortunately, it was not stroller accessible, so Abs and I walked around while they went into the show. 

Caleb really loved all of the diving.  The prince they cheered for won!

He was climbing up to the high dive.  This made Caleb very nervous!  Matt said he was biting his nails.  I wish he'd gotten a picture of it!

The villian

Both of the princes jumping off together

Sorry this post isn't more descriptive.  I can't really explain what it was all about because I wasn't there!

The Amish

I have always been intrigued by the Amish.  I remember going to Lancaster often as a kid, and I grew up reading fictional books about Amish families.  It's fun to teach Caleb a bit about this culture as well. 

An Amish family lives right across the creek from Dutch Wonderland (about as non-Amish as you can get!), and they were plowing their fields when we were there.

See the wife leading the horses while the husband gets the hay?

Friday, July 29, 2011

Chocolate Lover

Abby has FIVE teeth now, and at least one more on the way!  There are 3 on the top and two on the bottom, and they've all come in over the last 10 days!  It's crazy.

Because of that, she has taken pretty much nothing by mouth in the last two weeks.  It's not from lack of trying on our part, but she just doesn't seem to want anything coming near her mouth. 

Enter Sammi and her awesome cake baking and decorating skills!  She made Matt a super-cool Grave Digger monster truck cake for his birthday (a week late because they were at Momentum on his birthday). 

We put it in the freezer so that we could enjoy it after we got back from our trip, and enjoy we did...all four of us!

The girl has a sweet tooth, that's for sure!

**  Did I mention that Sammi got an ah-may-zing job as the head cake decorator at a well-known local bakery?  Did I also mention that she is fresh out of high school?!  True story!

How Abby Kept Cool

We considered letting Abby splash a bit in the water park (they have a section that is made for the really little ones), but decided that it was too crowded and that we shouldn't risk it.  We kept her in the shade and let her be helmet-free for a little while.  She was lovin' life!!

I brought a container of icy cold water with a wash cloth to wipe her down every now and then.  That really seemed to help cool her off.

The fan stayed propped up on the cooler bag the entire time Abby was in the stroller.  That little $6 Walmart special really came in handy!  The batteries lasted the entire time with it on high speed.  It really helped to keep her cooler.  Sometimes we would hold it right up to her face, which she loved!

The mean people at the eatery where Abby and I were hanging out while Caleb and Matt rode rides kicked us out because they were closing.  It's one of the few air conditioned places big enough to accommodate our monstrous stroller without it being in the way, so I was a bit upset.  Thankfully, it was quite a bit cooler by that time (8 p.m.) and we were fine to walk around outside a bit.  All that playing wore her out!

Thursday, July 28, 2011

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt, a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here.

Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)

  Notice that it's not to get famous and it never will be.  I'd much rather live a boring life...but God prefers to make it interesting.  :)  So if this is the life God has given us, then we want to live it in a way that points others toward Christ and encourages others with our story.

Where am I going with this?  I feel like I'm rambling.  Oh yeah, back to the article.  It's an interesting read and I certainly feel a strong connection to this family...after all, there are only 6 kids in the world with the syndrome!  I'm glad that the word is being spread about CCMS.  Check out the article if you haven't already and feel free to share your thoughts with me via email! 


Abby's very first ride was the carousel.  I got up on the horse with her, but the operator told me I wasn't allowed to do that because of excess weight.  I'm pretty sure that Abby and I together weighed less than some of the other parents who were riding on the horses, but whatever.  I wasn't sure at that point how she would be sitting on it by herself with me holding her, so we just sat in the bench behind us.  Unfortunately, the sun was in her eyes there.

Matt took Abby on the carousel a second time the next day, and we knew by then that she would be fine sitting on the horse with support.  I wiped her hands really well as soon as she got off, since she was touching the horse and pole.  (Didn't want to disappoint my fellow germaphobes!)  She seemed to really like it, but I couldn't really get her to look at me because she was watching herself in the mirror.

Caleb likes riding the horses, but he prefers to pretend he's Woody riding Bullseye while trying to rescue Buzz Lightyear.  The whole leisurely carousel idea doesn't do much for him.  :)

Playing Doctor

Whenever Sara is here, she loves to play doctor with Caleb's real medical equipment!  They have it all:  suction catheters, a feeding bag, syringes, gloves, masks, etc.  You know, all the usual stuff a kid needs to play doctor, right?!

Sara is feeding the baby, Ab, through her gtube.  We put water in the feeding bag and run it through.  Caleb wants a feeding pump for Christmas.  :)

Sara knows how to suction Ab and reminds herself to only go down 4 cm everytime she does it. 

Suctioning the trach

Listening to Ab's heart and lungs with a real stethescope.

Ab survived the examination!  (What?  Don't your baby dolls have a trach and gtube??)

Wednesday, July 27, 2011

A Day in the Life

Recently, I've had several different people ask me why we need nursing and what it is, exactly, that I do all day. This wasn't meant to be condescending or accusatory; these people truly didn't know.  I realized then that my day-to-day may not be as obvious as I thought it was.  I don't really blog about that kind of thing too much...honestly, because I can't expect people to understand. 

So, I figured I would share what a typical day is around here.  (Of course, this is on a day when we're not going to the doctor!)

The short reason for why we need nursing is that Abby needs 24 hour observation.  Without nurses, I wouldn't be able to do anything but take care of Abby (as you'll be able to see below!)  We wouldn't be able to sleep at night and I wouldn't be able to go to work....or have insurance.

I also realized that not many people know that I can't drive alone with Abby.  A trained person needs to sit in the back seat next to Abby to make sure she doesn't need to be suctioned or that her vent doesn't come off.  In an emergency, it would be terrible for me to try to pull over and get to her quickly.  It's just not safe and you won't find a doctor who supports driving alone with a trached person.  Therefore, a nurse always rides in the back seat when I drive with Abby.  If it's during the evening and we go somewhere, Matt drives and I ride in the back.  If no one else is home with us, I am homebound.  This is why I can't take Abby to church with me (she's off the vent for 2 hours at a time now, so church could actually be doable, but I don't think it's right to expect a nurse to come with me and I can't drive Abby by myself).  It's a little frustrating relying on someone else to drive (like I lost my license or something!), but we deal with it.

***Also, remember that 99% of my blogging is done late at night.  As I type, I'm up waiting for the night nurse to come.  I, by no means, blog every day.  Time delay is my friend and I use it to the fullest!  I almost always write multiple posts at once and set them to post at different time.  I very, very rarely have time to blog during the day. If I do, it's a quick medical update that I wanted to share right away. 

Okey dokey, here's the schedule:

6:40 a.m. My alarm goes off.  I head downstairs to get report from the nurse.

7:00 a.m. The night nurse leaves.  Whenever Abby wakes up (usually right around 7), I change her diaper, clothes, and suction her.  Caleb comes down and I get his breakfast.

8:00 a.m The day nurse comes...assuming she is on time.  I give report to her from the night shift and then get a shower and get Caleb dressed and ready for the day.  Matt usually leaves around this time.

8:00-10:00 a.m. Abby is off of the vent and this is the time where I like to do lots of physical therapy.  She's unattached to tubes and is able to move much easier.  We don't have a "physical therapy time," but prefer to just have a PT lifestyle where we incorporate her therapy into everything we do.  However, I do try to take advantage of Abby being tubeless!

8:45 a.m. feed Abby solid food

9:00 a.m. feeding and meds.  Pour the milk into the feeding bag and prime it through the tubing so that she doesn't get air.

10:00 a.m. feeding done.  Wash out the feeding bag.

10:00-12:00 p.m. Abby takes a nap.  We are just recently really cracking down on getting her on a napping schedule because our pulminologist wants us to know when she'll be awake enough to be off the vent.  This is much easier said than done with 6 different nurses taking care of her.  I'm working on it!  This is when I have some good time to spend with Caleb.  I'm able to get his lunch and play with him a bit.  Sometimes I run errands during this time too.

11:45 a.m. feed Abby solid food

12:00 feeding

1:00 p.m. feeding done.  Wash out the feeding bag.

1:00-3:00 p.m.  Caleb is taking a nap, so I'm able to play with Abby and get some things done around the house.  This is my time to make my billions of phone calls without interruptions!! 

2:45 a.m. feed Abby solid food

3:00 p.m. feeding

4:00 p.m. feeding done.  Wash out the feeding bag.  Nurse leaves.

5:00 p.m. dinner  prep.  I usually bring Abby into the kitchen with me on her portable vent.

5:30 p.m. dinner.  We all sit at the table together.  Abby is strong enough now to sit in her high chair.  I usually try to give her something to eat while we're eating, but her teeth have been hurting her too much recently to take much of anything by mouth.  We keep trying though! 

6:00 p.m. feeding

7:00 p.m. feeding done.  Wash out the feeding bag.  Baths for both kids.  If Matt is here, we divide and conquer.  If not, I will either take both of them upstairs or just wipe both of them down.  (It depends on how brave I am that day!)  Either way, I wash Abby's hair daily to keep the helmet-head smell down.

8:00 p.m. Caleb's bedtime routine

8:15-9:00 p.m. Change Abby's trach ties, have some one-on-one time with her, and get her ready for bed.

8:45 p.m. feed Abby solid food

9:00 p.m. meds and set up overnight continuous feeds (We put in 90 mls every 2 hours for 8 hours, then 45 for the ninth hour)  Hook Abby up to her monitors before she falls asleep.

9:30-11:00 p.m. housework and blogging time!

11:00 p.m. (or 12:00 a.m., depending on the day) night nurse comes.

Matt and I take turns going to bed early.  Whoever goes to bed early gets up for the day theory.  But the person who stays up for the night nurse usually ends up getting up around the same time anyway!  We can probably count the number of times we've gone to bed together since January 18th on one hand.  :)

Abby also has physical therapy once a week and speech twice a month.  Our respiratory therapist comes twice a month, the nursing supervisor comes once a month, and the case manager for Model Waiver comes once every three months.  I place Abby's supply order once a month, call pulminary to give them a weaning update once a week, and seem to talk to the nursing agency on a daily basis! 

Now, since we do usually have nursing during the day, I don't typically have to do everything in that schedule.  I do still do all of the solid food feeding, and try to be as involved in therapy during the day as possible.  However, I really appreciate when the nurses take the initiative with the therapy when I'm here so that I know it gets done even if I am gone during the day (like when I'm at work).  I am able to take Caleb places during the day sometimes and try to give him some attention while I have a nurse here to help with Abby.

In the evenings or when a nurse calls out, it's all us.  Matt is great when he is home, and we work really well together.  It's when he's not around and I'm on my own that it gets tougher.  That's when I declare a Movie Day for Caleb and feed him PBJ for lunch and dinner.  :)

Please don't misunderstand this post.  I didn't tell you guys all of this for your pity...we would do anything to have our girl home with us.  It's really just in response to the questions we've been fielding recently.  I figure that there are probably less-vocal people out there wondering, just what do you do all day?  And now you know.  :)

Der Ziege!

One of my favorite things to do in Lancaster is grab one of the farmland maps and navigate through the back roads of Amish country.  It's pretty cool to look out over the corn and not see any power lines!  We did this Friday afternoon as a way to keep cool during the heat of the day, and we found ourselves at a candle shop/petting zoo.  "Petting" zoo is a stretch, as you really couldn't pet them, but you could feed them.  It was fun to watch Abby's reaction to her first experience with a goat.

She really was checking him out!  When I was taking these pictures, a little one nibbled on my knee and scared the crud out of me!

Caleb loved feeding the goats.  Isn't that the cutest laugh?

Yes, I actually did trust someone to take a picture with my camera!  I figured, around here, if they tried to run off with it, we could easily catch them.  Plus, she was a mom with several kids.  :)  I think this picture turned out pretty cute!

****BTW:  "Der Ziege" is an old family joke.  Ziege means goat in German.  When we were in Germany, my dad swore he saw goats coming down the mountain behind the restaurant we were in.  He started yelling, "Der Ziege!  Der Ziege!" so that the whole restaurant looked.  Nope, no goats, Dad!  :)

Wordless Wednesday