Life as a Leach

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!!

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!  :)

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 than...

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. Relaxin'! 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!)  :)

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!

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?

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!

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 strolle...

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 ...

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 w...

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??)

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 ...

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...