Life as a Leach

We went with Matt's parents to the Science Center while they were here last weekend.  It was a long day filled with fun, and Abby got pretty tired at the end.  There was a fun turtle display where kids could strap turtle shells to their backs and crawl through a tunnel.  Abby put her shell on, crawled through the tunnel, and just laid here on the floor! So sleepy!!

The little lady had her last day of Mom's Morning Out last Friday.  This one-day-a-week program at our church is not technically a pre-school program, but the teachers do a wonderful job of doing all kinds of fabulous learning activities!  I have shared pictures in the past, but I really am amazed at all of the great experiences Abby's teacher has given her this year. They do a very informal closing program on the last day.  I may have gotten a little teary eyed at the sight of my girl sitting up there on that stage... My girl right before the program started Before their Bible story, Ms. Valerie gives all of the students a little cup of Cheerios to keep them quiet so that they can enjoy a little snack while they listen.  For the closing program, she showed the parents how the Bible stories are done in their class. Look how happy she is!!  In the beginning of the year, she wouldn't eat the Cheerios at all.  I think they usually ended up ...

It seems like everybody does baptism a little differently.  Some sprinkle, some dunk, some go backwards, some go forwards, some go under once, some go under three times, some do it as infants, some do it upon profession of faith. I'm not looking to get into an argument about the nitty-gritty differences of different denominations.  Honestly, I don't think the how  is a big deal at all.  It's the why.    Our church believes in a believer's baptism as a way to publicly proclaim that you believe Jesus died on the cross for your sins.  (We dunk 3 times forward, in case you're wondering!) :) My sweet boy knows that he has Jesus in his heart, so he decided that he wanted to be baptized so that he could tell everybody how much he loved Jesus.  We went through a little book that our church gives to kids who want to be baptized, and we also had him meet with our head pastor so that he could talk with him as well.  We went step-by-ste...

We had a BIG, FULL, EXCITING weekend!  Shew, I need a weekend to recover from my weekend!   I will blog about everything individually, but here are a few sneak peeks... Stay tuned!  :)

I got to go on Caleb's recent field trip to a park in a neighboring county.  It had a nice nature trail, a small zoo, and a nature center.  The animals there were all rescued after being hurt in the wild and nursed back to health.  He got to hear a presentation about different types of animals and see some live ones up close--but wasn't interested in touching any of them!! I gotta say...going on a field trip as a mom is way more fun than when you're the teacher!  :) Here are some pictures from the trip. A cute little owl who was rescued after some kind of trauma cause his head to not be upright. This big fella had one eye. The peacock was showing off for us!  All I could think of was, "Show them the shimmer! "  (If you have a Sophia the First lover like I do, you'll get that.) :) He was a big mamma jamma!! The park ranger with a snake whose head was a little too close to my ear at one point.  I don't care if he's poisono...

These are just two of Caleb's favorite girls.  It's amazing how easy it is to get him to give me a good smile when he's between two very pretty ladies.

We released our butterflies last Thursday evening because we didn't want to become a funeral parlor they were ready to explore the world.  Our first, most fluttery butterfly, Cookie, was released first.  High into the air he flew, the sound of sweet freedom mingling with the cheers of celebration by its young caretakers below. And then... A bird swooped in and grabbed it out the air, gobbling it in one foul swoop.   No joke.  It really happened.   Matt and I looked at each other in shock, and Caleb was quite confused. Once he realized what happened, he swore it wasn't Cookie--that one was actually Milk.  (Cookie was one of "his" butterflies!) So, I will leave you with pictures of happier times with our winged friends...before the fluttery one got eaten by a bird in our backyard. (Caleb is chewing "therapy gum" here, per the suggestion of our speech therapist.  He is missing a few speech sounds and she thought that this...

In August, an article that I wrote about Abby for The Global Genes Project was published.  Until I introduced Global Genes to Cerebrocostomandibular Syndrome, it wasn't even listed in the rare disease data base.  The editor emailed me recently asking me to write an update about Abby, so I happily obliged!  I love sharing the miracles!   Look at all the fun stuff I got in the mail the other day as a thank you gift! Hats, bracelets, car magnets, stickers, pins, key chains, and even a bear for Abby!  Everything spreads the message that We Care About Rare!   I'll be sporting my new key chain and bracelet, and I am thrilled with the new car magnet to replace to sticker I had to say goodbye to after my accident.  We're going to put away some of the other stuff to hand out for Rare Disease Day on February 28th.  We have plenty of stickers, so I'm thinking about maybe passing them out to Abby's class or something.  I may even do a little ...

Abby absolutely loves to get her toe nails painted!  She is constantly bringing me nail polish and asking me to paint them.  The other day, I painted her finger nails (a very light pink) for the first time.  She was in heaven!!

I have VERY exciting news to share!! I found out today from our geneticist that a research organization in Canada believes they have found the gene that causes CCMS!!!! Isn't that amazing?! I can hardly believe it.  Abby is joining the study as a way for the team to confirm their findings. She's a "checker," of sorts.  Because there are so few people with CCMS, they need as many people as possible to join the study. It can be done by a blood test or saliva sample (cheek swab), but we are doing the cheek swab for Abby.  As I have said many times before, I'm not sticking her with anymore needles that I have to! In addition, our geneticist is interested in gathering patient information for a case study. Her main focus will be on sharing FAIR information about CCMS. As you know if you've been following me for a while, the limited research out there is all very grim.  CCMS is NOT the death sentence "they" say it is, so our geneticist wants to give phy...

I've stopped writing daily Facebook updates when Abby drinks all of her milk, but I did want to let you know how she's doing. The girl has taken ALL of her milk FIVE out of the last SIX nights!!  Every day is getting easier, and yesterday she even asked for more once she finished!  I am amazed at her progress.  Something just clicked with her, and I am thrilled!! We are going to feeding therapy today, and I'm certain that her therapist is going to be just as excited as we are.  This just means that we can focus more on chewing this summer...which means big steps toward independent eating!! For those of you who are wondering, and because I haven't said it in a while, Abby will keep her tube until she has been taking everything by mouth for at least an entire year.  Kids often stop eating when they are sick, which would mean we would have to give her a tube feed instead.  We're nowhere near getting rid of the tube, but I am loving not having to wake up ...

We're raising butterflies again!  We did this two years ago when Abby was still very little (and very vented!), so it has been so fun to watch her become interested in their life cycle.  Every day she torments them checks them out to see how they're doing, and the last 2 hatched today! You may remember that two years ago, we had a special needs butterfly named Butter .  Well, guess what?  Apparently, we are the chosen family for all of the little ones who need some extra love, because we got another special needs butterfly this time around!  This poor little guy has mangled wings.  There have been many times that I thought he was officially in butterfly heaven, but then he would move around a little more.  He's a resilient little guy!  Guess what we named him? Yep. Butter Junior. I let Abby name two, and Caleb named two.  (Butter was sort of a group effort).  Abby named her two Milk and Cheerios (can you see where her mind is?!), ...

This video is so, so, so  true.  I have a unique perspective on this, being the mom of a little girl without a known life expectancy.  I can say that some of my favorite memories have been the "ordinary days" we've had...watching cartoons on the bed, making silly faces in the mirror, having family cuddle time, singing along to The Imagination Movers in the car...it's about finding the every day miracles. Grab your tissues, folks!  You're gonna need 'em.

I have to say, genetics went much  better than I expected!  I actually really liked the geneticist, as well as the fellows that also came in.  They were all very social with Abby and identified themselves as pediatricians  with a specialty in genetics.  BIG distinction there. The only picture they took of her was for her file so that they could put a face with a name...just a regular old cheesy grin!  No pictures of perceived imperfections, or even mention of them. Another thing I really appreciated was that the geneticist recognized that I have a lot of knowledge about Abby's syndrome and didn't try to talk down to me.  She answered questions and explained things well, but she also acknowledged that I may even have a better understanding of CCMS than she does!  She especially loved how much contact I have had with other CCMS kids and was very interested to hear how they were doing. We talked at length about the choice we have to join a rese...

...to end the word! My alma mater made a great video to support the Spread the Word to End the Word initiative.  These teens are choosing to use other words than the R-word.  Are you? No matter what the context, the r-word is offensive, rude, and unnecessary.  Expand your vocabulary please!

Today is Genetics Day.  It was postponed in February because of bad weather, and this was the next available date.  I was in no hurry.  :) My feelings about genetics haven't changed.  I still feel strongly that Abby shouldn't be subjected to pictures of her "imperfections" or that we should discuss these perceived imperfections in front of her. I also refuse to allow them to draw her blood (something that seems to be common) unless they can give me a very specific reason.  The child has had SO much genetic testing in her young life!  Unless you've got something new to test for, you're not drawing her blood.  She's had enough. I'm hoping that this new geneticist is more sensitive so that my concerns aren't even warranted, but I'm skeptical.  And I'm really weary of what she can actually offer me.  We shall see!

Our local strawberry patch is open!!!! Once you eat these organic, fresh-picked strawberries, you'll never buy them from the grocery store again.  Ever.

Bad news:  I was rear-ended today. Good news:   It wasn't my fault. I was going to pick up Abby from preschool when the car in front of me stopped short as the car in front of it turned left.  I went over onto the shoulder to make sure that this car had plenty of room.  The car behind me also tried to come over onto the shoulder, but she was going too fast not to hit me.  I'm glad I moved over, or I would have probably been sandwiched between 2 cars! It was a little more than a fender-bender; the bumper, back hatch, and left corner panel will have to be replaced.  There's also damage to the metal undercarriage behind the bumper, due to a hitch piercing the bumper.  I'm not sure if anything will need to be replaced in the undercarriage. Thankfully, I had a witness who confirmed that the accident was the woman's fault to the police officer.  My insurance company has already put the cost on her, and I will be able to get a rental car. Appar...

Here comes Miss Personality! She swears these are Daddy's shoes.  She was walking around the kitchen with her pom pom cheering, "Daddy's shoes!  Daddy's shoes!  Daddy's shoes!"  When I told her they were mine, she looked me in the eye and said, "No they not!  They daddy's shoes!  I wear them!"

I just read this article and found it to be pretty interesting.  It discusses the improvements in prenatal testing--specifically the tests that can be done in a less-invasive manner and much earlier in the pregnancy.  But are they really improvements? I am pro-prenatal testing.  100%.  But not  in the way that it is generally used.  Living in our rural town, I want to know if there is any reason for me to deliver at a bigger, better-equipped hospital.  If a test shows up even questionable, I'll be high-tailing it to Baltimore in a heartbeat! Unfortunately, I would venture to say that the majority choose prenatal testing to see if there is "something wrong" with their child so that they can "take care of it."  (For the record, there is never "something wrong" with your child!!!!!  But that's for a different blog post...)  I even read a comment from a reader where I found this article who said that people who would never choose to abo...