Wordless Wednesday

Andrew signs "Pig" at Disney's Animal Kingdom

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CdLS Family Gathering June ’09

We had a gathering of local CdLS families this past weekend.   We had about 13 families here and it was a lot of fun.  It’s always great when we have an opportunity to get together, share stories and laugh (or cry) about our crazy lives.  Looking back at the pictures from the day I realized that other than my immediate family, there wasn’t a single person here who I would have known were it not for Andrew.   From the other parents to the kids themselves, the siblings, and Andrew’s teachers, therapists, and even doctors…they hold a very special place in my heart and I’m so glad I’ve gotten to know them.

It reminds me again that having a child with special needs and challenges really is a blessing in so many ways.  I sometimes wonder what it would have been like for all of my kids to be “normal”.  But, I wouldn’t trade him, the experiences, or my new extended family for anything.   

Can you fee the love?

“Little Boy Blue”

25 Random Things About My Child with CdLS

1. 

   He will NOT wear a hat anymore. Bummer cause he looks so cute in them.

   Andrew is 7 1/2 years old.

2. He was diagnosed with Cornelia de Lange Syndrome within days of his birth
3. He was 4 lbs, 15 oz when he was born and he was not breathing and had a very low heart rate.
4. He spent 2 weeks in the NICU.
5. He is tube fed. While he loves to taste things, especially strong flavors like doritoes, garlic, lime nachos, etc, he hasn’t mastered the art of chewing, breathing, and swallowing all at the same time.
6. He has no speech and communicates mostly with sign language these days.
7. He LOVES to learn new things and surprisingly has a great attention span (when it’s something he’s interested in.)
8. He LOVES loud noises. The louder the better. (Just found out the volume on our TV can go up to over 90!!)
9. When Andrew was diagnosed, we prayed more for his happiness than anything else. Our prayers have been answered tenfold. He is such a happy boy most of the time. Almost always up for a good laugh.
10. He enjoys teasing and has a very good sense of humor.
11. He loves zippers. When friends come over he always has to zip or unzip their coats. (Thank God he hasn’t attempted the zippers on pants yet! That could be a little embarrassing.)
12. Andrew’s favorite things are his bumble ball which he carries around in his mouth, musical and light up toys, a large therapy ball which he’s been chasing around since he was about 2 years old, electric toothbrushes, and did I mention loud noises??
13. He goes to a private school where they focus on verbal behavior. He loves school and the woman who works with him the majority of the time. I don’t think there’s another person in the world (besides his dad of course) who I trust with him more than her. (Thanks Maryann!)
14. Andrew really loves his bed and has always been a good sleeper (knock on wood). He sleeps with his face buried in the corner and his pillow over his head. I don’t know how he breaths in there! And NO blankets please!
15. Andrew used a pacifier till about a year ago. Mostly just to chew on because he’s very oral. When we took it away he became obsessed with holding onto socks. Now, wherever he goes he will almost always be carrying a pair of socks. If you take the socks out of his hands it’s like unplugging him. He just shuts down. Bizarre.
16. Andrew is still very small. Even though he is 7 1/2 years old, he is still only wearing a size 4 and weighs just over 30 lbs.
17. He has had several surgeries…nissen fundoplication and g-tube placed at ❤ mos old, eye surgery to correct ptosis (droppy eyelids), inguinal hernia repair, ear tubes, tear duct, etc, etc. Lots of time in the hospital.
18. The winter seasons are usually difficult for Andrew. He seems to pick up every stomach bug that is out there. However, this year has been different. He’s been really good compared to past years. Maybe the new school, maybe his immune system is catching up, maybe something else. Whatever it is, it’s good to see him feeling so good and so happy this year
19. Andrew really enjoys playing with is brother Joe. But he often plays inappropriately by hitting and kicking. Joe loves it, which I don’t understand. It’s cute to watch them interacting. They often play hide and seek as well.
20. All kids are blessings. But kids with special needs have a little something extra. Maybe it has something to do with their eternal innocence. Whatever it is, Andrew has it and him being here has made the world a better place.
21. Did I mention Andrew likes loud noises?
22. He loves to take a bath (I think) and asks for one all the time. But, when you get him in the tub he yells and screams through the whole thing. Sometimes for fun, sometimes because he’s stressed out. Especially when you wash his hair. You might think he’s being attacked if you hear him in there.
23. Andrew is a big fan of music and will sit on his dad’s lap to listen to music on the computer or silly songs on you tube for long periods of time.
24. Because Andrew doesn’t speak and doesn’t eat I think people underestimate him. They don’t realize how much he understands, what he is capable of and how smart he really is.
25. While Andrew is a lot of work and taking care of him can be all comsuming at times, I wouldn’t trade him for the world. There is nothing better than is smile and laughter and nothing worse than when he is in pain. How we were so fortunate to end up with this little angel is beyond me. He definitely ranks among the top three of my favorite kids. (I only have 3 by the way) 🙂

Wordless Wednesday

A very expensive toy.  This piano has taken such a beating.  From chipped keys, to chewed edges, to scratches and dings galore!  What a happy boy!  That’s all that matters, right?

What a great day today

So, the weather was really warm today.  Just a few days ago we were buried in snow and it was freezing cold.  Today was almost like spring.  We took a walk hoping to wear the kids out a bit, but as you can see, they hitched a ride with dad.  Joe and Paul had a little batting practice when we got back.  Andrew did laps around the car, one of his favorite things to do while dragging his hands along the car and getting absolutely filthy!  Then he tried his new tricycle.  Still working on the pedaling, but he likes riding while pushing it around with his feet. 

By the way, those are socks Andrew’s holding onto.  He’s obsessed with holding socks.  It started after we took the bink away.  If you take the socks out of his hands he shuts down completely.  You put the socks back in his hands it’s like plugging him in and he’s off again.  Bizarre, I know.  He has started putting them down a little lately.  But he always knows where they are and always goes back for them.  It’s a start though. 

Anyway, it was a really nice time outside.  Unfortunately, I wasted a good part of the rest of my day on facebook.  I was looking at everyone’s pictures and got carried away.  It was fun, but I’m feeling a little lame about how much time I spent on the computer today.  I need to get a life I think.

Wordless Wednesday (a little late)

So, I was trying to take a nice picture of Joe, but he kept hiding and turning away from me.  I was getting so annoyed.  It took the picture anyway and it actually turned out really nice.  So here it is.

Kid Tough DVD Player by Fisher Price

Watching Barney in the car

Last week I bought a kid’s DVD player from Walmart.  It’s made by Fisher Price and it’s called “Kid Tough DVD Player”.  I’m so happy with it I just have to share!  It is a little pricey and I saw on line that the prices really vary.  Walmart has the best price so far that I have seen.  Andrew has been using this since last week.  He used it in the car on our 8 hour trip over the holiday weekend and while we were on our trip and every day since then.  It’s actually rubber all around the outside so when (yes, “when” not “if”) he throws it it is well protected.  The worse thing that has happened so far is that the DVD came dislodged.  When replaced it worked just fine again.  The buttons are big and Andrew has already figured out what they all do.  It’s great for a kid who likes to be in charge.  The screen is only 3.5 inches, but it has a real nice picture and it’s perfect for him.  Having a kid with CdLS, there are a couple of drawbacks.  One, he has figured out how to open the door which means no DVD is safe.  So far a piece of tape is holding him off.  Hopefully it will last.  Two, the buttons beep.  Andrew loves noisy things, so he is always pushing the volume button and the contrast button just because they beep.  I wish I could turn off the beeping. 

This thing will also play musical CDs.  Andrew has a few CDs he likes to listen to and he was so excited when he realized it was playing his favorite music.  This is a great buy and I just had to share it.  Especially for those with kids with special needs or even younger toddlers.  This thing will come in handy if you go out to dinner or even to a friends house.  If your child likes watching DVD’s or hearing music it will keep them busy for a while so you can have some free time, however brief it might be.  It’s small, has a handle so they can carry it, and has legs in the back so you can stand it up in front of them at the table or on a tray in the car.  I even made a DVD of pictures and videos from our weekend trip.  Andrew loves to look at pictures of himself and family so this is a big hit.  I can’t give him photo albums because he rips the pages out.  I love this thing!!

Oh yeah, it has a rechargeable battery and comes with the adapter.  You do have to buy the car adapter seperately which also comes with headphones which could come in handy for some of you.