A couple of Cadenne health notes...

First, we found out that Cadenne was going to be getting the RSV shots again this year. Initially we were told that she wouldn't be because she is too old. I was so happy to get the letter in the mail the other day saying that it had been approved! This is not a vaccine. It is a medication that protects preemies and kids born with certain defects from developing complications from a very common virus that is (in normal children) very benign.

They dose this medication according to weight. Cadenne had her first "naked" weigh-in today in a long time. She is 22lbs, 13oz! This of course meant that she had to have TWO shots! She was little miss sunshine when waiting in the room, but her entertainment came to a sudden end when they administered the shots. Poor thing! She cried immediately, then stuck her lower lip out as far as it would go, looked me in the eye, and said, "Hoort me." It was the saddest thing ever For the rest of the day she kept saying, "Dotter hoort." She's always been a trooper at the doctor before, so hopefully this experience hasn't changed that!

We also had a repeat ultrasound of the kidneys done. She has this done every three months to track the growth (or lack thereof) of the left kidney. Of course the technician isn't allowed to say anything, but I could see that there is still a big discrepancy between the two kidneys. When the tech was doing the measurements, I could see that she found the right kidney right away and that it measured 4.5 cm x 3 cm. When she switched to the left side, she had a very difficult time finding it. Part of this is due to the fact that all of her anatomy is messed up. We had to have her turn on her side and then on her tummy to find the kidney, and when she found it, it measured 3.7 cm x 1.7 cm. She also measured a gland (?) in the center of the kidney, and the right side was double in size compared to the left. I don't remember what her previous measurements were, so I'll have to wait to hear from the doctor.

Halloween!

There were lots of festivities today! We went to the local mall for free facepainting, balloon twisting, story time, movie, & popcorn... It was really fun! The face painting was amazing, and the balloon twister was pretty talented, too!

The following were taken on my cell phone, so not the best! Story time!
Zach's painting...
Abby's...


We came home to make caramel apples together...lots of sticky fun! In the evening we headed to church for a fun night of pizza, crafts, learning about the reformation, and fun sharing costumes with friends.

Ninja Karissa (She had a "hand" painting earlier rather than a "face" painting.)

Abby the fairy.... She of course wanted her bangs up so that she could see the painting on her forehead!

Zachary as the black and white Spider Man (We couldn't find the traditional costume anywhere!) Incidentally, for those of you who remember him declaring that he wanted to be Spiderman when he grows up, he's now declared that he can't be Spiderman because he already pretended to be him for Halloween. His current career dream is to be Batman. His subsequent question was, "Mommy, who is Batman?" LOL

We taught her to make a little scrunchy bunny face. It's an improvement upon the "meowing" that she was doing when we first put the costume on! :)

And of course a bunny needs her carrots...

Finally, went to Biola to Trick or Treat in the dorms! Holy candy, Batman... I think we should've gone through with just 1 kid! Seriously... We came home with 7.2 pounds of candy! Yikes!

Cadenne's age is always so interesting to watch trick or treat. At first she had no clue. She had her little basket. The first time someone gave her a piece of candy, she threw the basket down and started opening up the candy. She was done and satisfied. Five minutes later, she knew EXACTLY how this deal worked and diligently walked up and down the dorm floors saying please and signing thank you. She's serious about her work:

The theme for the event was "Candyland," and each of the floors adopted a different Candyland character, and there was a door decorating contest. Here's one example...from the "Gramma Nut" floor. This door took Veggie Tales and adapted the veggies into nuts...
Little bunny's tail...
The loot....

Fashion Disaster Day

As with all schools, the student body occasionally has fun "spirit" days that the kids can participate in... usually by wearing something whacky.

Today was "Fashion Disaster Day." As the name implies they were to don clothes that were absolutely ridiculous together. The girls had a blast putting their outfits together, and I'm proud to say that I was in charge of hair. :)

Just for fun, I dressed Cadenne up similarly to surprise the girls. She definitely had the sense that we were doing something really silly, and had fun doing it!

The unfortunate thing is that the girls were two of a total of THREE people participating! They were bummed that more people didn't do it, and felt a little silly being dressed that way when no one else did. They still had fun, though! :)

Sickness abounds, and Wellness abounds still more!

These past 3-4 weeks have been full of sick kids. Of course they didn't all get sick at the same time, or even with the same thing. Zachary had croup the first week. Then Abby had a horribly high fever for about five days. Toward the end of the five days, Karissa got a fever for a couple of days. The three of them were better, and then of course Cadenne comes down with something!

Because the other kids had been sick, I have been really diligent about taking her temperature every hour on the hour. She literally went from 98 point something to 102 point something in about an hour. That brought about the scariest moment I've had at home as a parent. She started crying out in the middle of her nap, and it was not her normal cry. I went back to check on her, and she was laying perfectly still, yet surrounded by a clear liquid. Her hair was soaked. I wasn't sure if she had been sweating or had thrown up or what. It had no odor, so I determined that it was saliva. It wasn't that that alarmed me, though. She was not acting right. I picked her up, and she was completely stiff and unresponsive. Thinking that she'd likely had a febrile seizure, I gave her a minute or so, but she still didn't perk up. I decided to call 9-1-1. At that time, I didn't know what I was dealing with and whether these types of seizures can be harmful. (Now I know that they normally aren't... and that it was likely the quick spike that caused it... not that the fever was all that high.)

So the paramedics came out and pretty much confirmed that I did the right thing, told me to keep the fever down, etc. etc. It was scary! The next day we took her to the doctor where it was confirmed that she did have Influenza A. (They don't test for the swine flu unless the person is hospitalized, but our pediatrician said that given Abby's symptoms the week prior, it is almost certain that she had the bacon fever, as we call it around here...) Anyway, she did fairly well with it, considering her medical history!

The great news is that we went back to the nephrologist today, and her blood pressure was GREAT. As a result, the doctor removed "hypertension" from her list of "current" diagnoses! I love that they're dropping like flies! :) I need to follow up with getting another ultrasound done on her hyperplastic dysplastic kidney, and we'll probably have those every 3 months to monitor its condition.

No more OT

With some sadness we said goodbye to Carol, Cadenne's wonderful OT earlier this week. She has been such a blessing to us, and we are so thankful that she is the one that was matched up with Cadenne! Cadenne loves her! It is amazing to us to remember where Cadenne was developmentally when she first started OT compared to where she is now! According to Carol's report she is completely caught up with every area ahead by a couple of months in a few areas, and ahead by 6 months in one area.

There is no way I would've been able to come up with a gift that would've been able to properly thank her, so we worked on making a card in the form of an "explosion book." The girls wrote notes to her, Zachary dictated one to me, and we put Cadenne's handprint on the back. It was fun to make!



THANK YOU, CAROL! :)

Don't feed the Monkeys!

SO... We woke up this morning and literally had nothing to eat for breakfast. This thankfully wasn't out of poverty and lack of ability to keep our kitchen stocked. Just a byproduct of sheer laziness and a busy weekend to boot. Plus, those who know me well know that I like to play this little game with myself called "refrigerator limbo." (How low can you go? How creative can you get with meals before you absolutely HAVE to go to the store?)

Seeing as the kids wouldn't be gung ho about eating ketchup for breakfast, (well maybe Cadenne would, but ewwwww) I got dressed, had Zachary get dressed, and got them into the car to head to the grocery store at 7:30.

I'm not sure what I was expecting at that hour. I think I thought it would somewhat resemble a ghosttown. ...That maybe it would be a few business people dropping in to grab some nasty potato salad at the last minute to take to some work potluck. But that was not the case. There were actually a LOT of people there!

"GREAT!" I thought. Now my kids are usually fairly well behaved. The grocery store, though, is special to them. It is that place that brings out the "not so best" in them, if you know what I mean. It is normally just a bit more chaotic than I am comfortable with, so I was anticipating that times ten, as I was now bringing two children to the store that had not even been FED. I braced myself for it, resolving to be extra patient and understanding.

You know what? They were little angels the entire time. Zach was cheerful and talkative. Cadenne was going back and forth between giggling and sucking her fingers. They were pleasant and "helpful." We actually had more fun in the grocery store than we have ever had before. Maybe I should "not feed" them more often!!

I've added a new link in the CDH blog section...

Someone who attended the same youth group as I did in high school is pregnant, and her baby was just diagnosed with CDH. Please join me in praying for baby Averi and her parents, Kevin & Teresa, as they begin this phase of learning what is to come.

It is very strange for me as I think about the CDH statistics... They say 1 in 2000 or 1 in 2500 babies have this defect. A few months ago, a granddaughter of a family in my parents' church was born with it, and about a week ago, I found out about Averi. That makes 5 babies (including Cadenne) that are either friends or friends of friends of mine that have been born with this. It seems weird that I know of 5 in my limited circle, yet I don't know anywhere close to 10,000 or 12,500 babies.

I am grateful for the opportunity to help others through this process, though. It definitely makes everything we went through with Cadenne have purpose. Anyway, the link on the side is Averi G. if you would like to follow her story. Thanks!