Thursday, August 29, 2013

Loungin'

The kids love our hammock on the front porch!




Wednesday, August 28, 2013

First Day of School Pictures---Finally!!

I am so far behind on blogging.  Life has just been busy and I'm back to work too, so there isn't a lot of time...not to mention running the Leach Infirmary!

Caleb finally went to school last Friday, and Abby came down with the fever on Sunday with vomiting on Monday.  Chloe had dental surgery on Monday and I wasn't feeling so hot myself, but someone had to run the infirmary!

Things are better now and I'm hoping whatever germs these were are long gone.

That being said, I wanted to share some "First Day of School" pictures!

This was the first true day of school when Caleb ended up being sick.  You can tell how pale he was in the picture, but I was still holding out hope that he would make it.  I won't tell you what happened right after I took this...

Healthy again!






Here's to a great year in first grade, Caleb Boy!



Wednesday, August 21, 2013

First Day of School...Sort Of...

This is Caleb's first day of school picture.  :(

The poor guy came down with a nasty bug and spent the better part of the morning getting sick.  He perked up in the afternoon and I thought he would be fine to go back the next day...then the fever set in.  He is home for a second day today, and he's currently resting after completing his make-up work.  I am seriously hoping he can go back to school tomorrow!!!

The teacher in me knows how important the first few days are; that is when the kids are taught routines, when they get to know their classmates and their teacher, and when they are assessed on their current levels.  But, under the circumstances, we really didn't have a choice but to keep him home.  Thankfully, he has a fabulous teacher who has assured me that she will make sure he is all caught up on everything!

Here's hoping that tomorrow he will ride the bus!!!

Monday, August 12, 2013

Adventures in Philadelphia

We made it home from Philadelphia!  I didn't bring my camera with me because it was such a quick trip and I didn't want to have to worry about it while we were in the hospital (I do NOT leave it in the car!!), so I don't have any pictures to share.  But we did have some adventures!

After driving 4 hours after church and hitting some traffic at the Bay Bridge (shocker) and on 95, we made it to Philadelphia with really no issues.  We stayed at the Double Tree because we didn't get into the RMH near the hospital.  Sadness.  But the Double Tree was very nice and RMH got us a good rate.  We checked in, got settled, then headed out to find the hospital so that we would know where to go in the (early) morning.  We grabbed dinner at Chipotle and brought it back to the hotel, then decided to let the kids go for a late evening swim at the pool.  After all, swimming would tire them out and make for an easy bedtime, right?  Ha!!!!

I think we all finally fell asleep around 10:30. Abby may have been the last one asleep.  Despite having two queen beds, we finally had to put her on the floor because she wouldn't leave Caleb alone.  He fell asleep soon after we did that, but Abby was wired.  Apparently chlorine makes her hyper.

The alarm went off at 5:45, and I'm proud to say that we made our goal of a 7 a.m. departure!!  Woo hoo!  (This was mostly because we didn't feed Abby before we left; we decided to wait until after the appointment, since it was so early.  That came back to bite us, but more on that later!)

CHOP is really very easy to get to.  Although I know JHH better, I was pleasantly surprised at how simple it was to get to our building, park, and find the orthopedic department.  It's actually much easier than JHH!  We settled in, filled out a lengthy registration packet, met with a researcher (who gave us a greasy used-car salesman speech about wanting to draw blood for genetic testing--no thanks!), talked with a Physician's Assistant, tracked down her medical records that were sent there but not put in her file, and finally met with the doctor.

He. Is. Brilliant.

It was SO nice to finally have someone who knows CCMS, has seen these kids' ribs, and who could actually teach us something rather than us educating the doctor.  This is the first time that any of our doctors has ever had more than one CCMS patient.  He's as much a CCMS expert as anyone in the world!  He has operated on 6 other kids who have CCMS.  6.  That's almost all of them!  Craziness.

She had some new xrays done today, as well as a CT scan.  We didn't think we would be doing all of that, but I'm glad we got so much information in one day.  The CT scan is usually done under sedation at this age, but we wanted to try without it because of the dangers for Abby.  She was perfect!  We had no issues, and we attribute that to the wonder Childlife Specialist who brought in a mini CT scan and showed Abby how it works beforehand.  It was a great experience, thank goodness!

So, basically, here's what he said:

The gaps in her ribs are not currently affecting her respiratory status.  Her respiratory rate was a little high for her age, but she is overall doing very well.  He is more concerned about how her ribs will grow and whether or not they will constrict her lung functioning.  One of the concerns is that the gaps will overlap and constrict the growth.  Right now, the ribs expand and the pieces move out as she inhales.  He doesn't know how long they will continue to do this.

He was impressed with how well she was doing.  He said that she is doing better than any other CCMS kid he's seen, and that, if there is such a thing, she seems to have a "mild case" of CCMS.  If this is mild, I really don't want to see more severe!

He will be following Abby, and we'll go back in 6 months.  At that time, she'll have a pulmonary functioning test under sedation...which adds a whole new level of anxiety and issues.  He'll also check on her rib gaps at that time.  I'm figuring on seeing him about twice a year, unless something changes.

If there is a change, then we'll turn to the VEPTR.  But hopefully we won't have to!

One interesting little tidbit...Abby's spine is the length of an average-sized newborn baby.  Hmm.  Who knew?  He then turned to me and asked if anyone has used the term "Short Stature." Yeah, yeah, yeah.  We know, we know.  The girl is going to be a bit on the petite side.

We are very, very glad we went.  It was worth it just to hear him say that he knows what CCMS ribs look like.  We've waited a long time for that kind of information!  Oh, and she's totally safe to do whatever she wants.  Her ribs are fine.  Great news!!

So, so thankful.  Today was a good day.  Long, but good!


Wednesday, August 7, 2013

Monday, August 5, 2013

37 Reasons Why My Sister is Awesome

Happy birthday to my favorite sister!  She is pretty darn wonderful.  I did a little activity with her kids the other day where they wrote out 37 reasons why they love their mom.  I figured I would do something similar to honor her on her birthday!  Note:  37 was just a random number.  She is certainly not 37!

So, in no particular order...

1.  She didn't kill me when I was a kid.  Trust me, she had every right to do it.
2.  She made me an aunt for the first time!  (Now I'm an aunt to 9 kiddos from 3 families!)
3.  Being a mom of 4 doesn't slow her down.  There is always time for at trip to Target!
4.  Amy is a good great fabulous amazing mom. She knows exactly what each of her kids needs and parents them differently to meet those needs.  I'm not sure I could handle 4 kids, but she takes it all in stride!
5.  Even when I call her bawling, she doesn't freak out on me.  Amy has definitely been there for some of my toughest, most broken moments.  And she doesn't need to (and can't) do anything.  She's just there, and listening, and that's enough.
6.  She married a pretty great guy who thinks he's pretty funny.  (If I'm being totally honest, he is pretty funny.  But please don't tell him that!!)
7.  We can share clothes, and do!
8.  I do love me some Amy Drama!!!  :)
9.  She takes her kids to more birthday parties than anyone I've ever met.  Seriously.
10.  Amy is always ready for a shopping trip!
11.  We bond over good deals and thriftiness.
12.  All of her son's clothes get handed down to Caleb.  He pretty much has his entire wardrobe set for him.  That. Is. Awesome.  (!!!)
13.  She throws fantastic parties for her kiddos...last year her oldest daughter had a spa party complete with foot soaks and manicures!
14.   Amy is almost as big of a germaphobe as me.  I never have to worry at her house!
15.  She texts me with little Anna Anecdotes throughout the day to make me smile (or shake my head in disbelief!)
16.  Even though we never played any team sports growing up, Amy is every bit a soccer mom and loving it!
17.  She let me borrow her car my freshman year of college when I wasn't allowed to have one on campus.
18.  She is crafty.  In the artsy sense of the word, not the shifty sense.
19.  Abby will never be without a bow because Amy is always ready with some super cute, handmade ones!
20.  Amy sees a need and meets it. She makes dinner for SO many people who are sick or hurting.  She is always volunteering to watch other people's kids or help out.  I love that about her.
21.  We Skype to let Anna and Abby see each other, even though we live 10 minutes away from each other and the kids see each other at least a couple of times a week!
22.  She has this cool connection with the post office where these awesome packages full of Vera Bradley will just appear at her door.  She needs to hook me up!
23.  Even when she was away at school, Amy always came to my plays, dance recitals, musicals, etc.  She was always there cheering me on.
24.  She loves my kids, and they love her.
25.  Caleb has his own bed at her house.  :)
26.  She can buy kids-sized shoes, which is awesome.  I have always been jealous of that.  (The thrifty side of me knows that kids' shoes are often cheaper!!)
27.  We call, text, and/or email each other multiple times a day.  It is rare that I don't communicate in some way with her every day.
28.  She minored in dance.  Amy was an awesome dancer!  (I'm sure she still is--but she doesn't do too much ballet these days with 4 kids.  It's more just the Hot Dog Dance.)
29.  All of her kids have 4 letters in their names.
30.  She is the kind of mom who makes cookies, just because.  I'm the kind of mom who buys them at the store.
31.  She is very involved in her kids' classrooms and volunteers in various ways throughout the year.
32.  Amy has Anna.  That's enough right there to earn her the Mom of the Year Award!  She calls Anna her Caleb.  I'm not sure how I should take that... :)
33.  I'm so impressed with her sense of direction.  I don't have that.  And she doesn't even usually make fun of me for it.
34.  She is fashion-conscious and tries to keep me from looking like something off of What Not to Wear.  I still love my Crocs though.
35.  We are 5 1/2 years apart, which was hard growing up.  We are so, SO much closer now than we were when we were younger.
36.  She likes Pinterest.  If you like Pinterest, you have to be awesome.
37.  In all seriousness, Amy loves my family in a very real and practical way. I can never repay her for all of the ways she has helped out these last 3 years.  Whether it's taking care of Caleb for an appointment, watching Abby so that I can do something with Caleb's class, fixing dinner, coming over to help, or whatever else, she is always there when I need her.  I know that I can call her for anything.

I love you, Am!  Have a fabulous day!

Sunday, August 4, 2013

Dear Chloe

Dear Chloe,

We've had you for two weeks now, and you have quickly stolen all of our hearts!  You're so much more than a dog to us, Chloe.  You see, you probably don't realize it Chloe, but you are a huge symbol of normalcy for our family.  You symbolize health, less-frequent hospitalizations, and no more nursing!!  When our sweet Becky girl died right after Abby was born, Caleb was devastated.  He wanted another dog right away, but we just couldn't handle it at the time.  I promised him that we would get another dog when Abby was doing better.  So he was the one who commented on how having you now means that Abby is officially better!  

Since we first met you two weeks ago, we have enjoyed getting to know you.  We see how much you love being petted and giggle when we hear that thump-thump-thump against the floor.  We're still getting used to a boxer with a tail!  It makes us smile to see how much you enjoy chewing on your antler and gobbling your food down.  (You do need to slow down a bit, though!)  You are so patient and gentle with the kids.  We needed a very calm and gentle dog for Abby, and we got one!  You love cuddling with everybody on the bed, but don't tell Daddy.  He still thinks I haven't let you get up there.

Although you don't seem too fond of other dogs right now, we are hoping that you will get better as you build trust.

Abby and Caleb absolutely adore you.  I haven't seen Caleb smile this much since we lost Becky.  He has told me many times that life is just better with a dog.  He's even told me that he hopes his future wife likes dogs, because they're getting one anyway!


 Abby giggles uncontrollably when you give her kisses.  She loves when you go in her room in the morning after she wakes up.  "Where's Chloe?" is the first thing she asks if you aren't there!



I'm sorry that your first four years were spent without knowing what it means to be a "family dog".  I can't change your past, but we can certainly affect your future!  I promise you that you will live the rest of your years knowing love and happiness.  Your biggest problem will probably be the kids not being able to leave you alone!



It's true that we rescued you, Chloe...but maybe it was you who rescued us!  We love you, "Chloe-Chlo"...or "Co-Co," as Abby calls you!

Love,

Your Family

Friday, August 2, 2013

52 Lists: Places You Want to Go

I found a fun blog theme called "52 Lists."  Each week, there is a different topic.  I doubt that I will be doing one every week (or even very often!) but it's kind of cool to do when I get writer's block.

So, here are some places I want to go!

*  Prague

*  Alaska

*  On a cruise just about anywhere

*  The coast of Maine

*  Vancouver Island

*  Seattle (maybe we can fly into Seattle when we go to Vancouver Island!)

*  Guatemala

*   Austria (I've been there--Matt promised to take me again before I die!)

*  Costa Rica

*  Australian outback

I'd say my top priority is a cruise.  It might be a while before that happens, unless I can convince Matt to do a Disney cruise!




Thursday, August 1, 2013

The Aftermath

Thank you for all of the sweet comments, emails, and prayers after my last post.  This has been very emotional for me, and it's even harder that Matt hasn't been home while I deal with it.  I'm still most definitely processing our news.   I have found myself quietly apologizing to Abby each night when I put her to bed.  Not apologizing for her life, but apologizing that I am the reason that she has to go through all of this.

I've started the ball rolling for getting a chest xray.  Our insurance won't pay for it, since it's not medically necessary, so we're going through the genetic research department.  I expect that the xray would happen in the next few weeks.  It has to be done at Hopkins, so I'm hoping that I can get the xray done when we are already up there!

I'm looking forward to having my husband back.  This summer, we've pretty much been apart.  That really hit me this week, and it's been a long one!

I've been working on some lighter blog posts to even out these heavy ones.  Stay tuned!  ;)