Wordless Wednesday

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Andrew signs "Pig" at Disney's Animal Kingdom

CdLS Family Gathering June ’09

Group Photo

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.

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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?  Andrew and his teacher Maryann.
Can you fee the love?

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"Little Boy Blue"
“Little Boy Blue”

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Meet Reagan…our new “baby girl”!

february-09-011This is our new dog Reagan!  She’s a 9 month old black lab and she’s the sweetest thing!  We found her on petfinders.com.  She was in a “high kill” shelter in Kentucky.  The women who brought her up last saturday drove a van up here loaded with about 30 dogs!!  They volunteer their time to try to find good homes or foster homes for these dogs so that they are not destroyed.  They loaded as many as they could fit to save their lives.  Certainly a tremendous thing to do.

Reagan’s story is that her owners had to move and couldn’t take her with them.  She had been in the shelter for about 2 months or more before we adopted her.  Considering where she had been living, she is absolutely awesome!  She’s just a big lap dog, and as you can see, she’s very good with kids.  Andrew has tried very hard to get a rise out of her, but she is just so happy to be here, she doesn’t care what he does. 

 

Shfebruary-09-018e loves to chase a stick or a frisbee and is working on actually bringing it back to us.  I’ve started “clicker training”, which she seems to be responding to very well.  She is learning very quickly and can already sit on command, come when called, lay down, and Joe is teaching her to roll over.  She is so lovey and loves all the attention she can get.  I know, I know….she looks VERY similar to our last dog.  That’s just one of the things we love about her.  I don’t know how we got so lucky, but she is really a sweetheart! 

Joe cried when we picked her up.  He had no idea we were going for a dog.  He was so happy and they are best friends already.

We’ve been trying hard to keep her off of the furniture.  But she looks soooooo comfortable when she’s snuggled on the sofa.  We did compromise and allowed her to use the seat at the end of our bed as her sleeping place.  I have no idea why she would want to lay there!  It’s so narrow and there’s a perfectly good fluffy pillow on the floor.  But no!  She wants the bench.  Okay, okay.  (How long do you think before she’s ac tually in the bed???)True Love....Puppy Love

True Love….Puppy Love

25 Random Things About My Child with CdLS

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

    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

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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?

Angel of God (a poem)

andrew-101I know what you are thinking.

You want a miracle.

What better one could I give

than to make this little one whole and new?

I could do it, but I will not.

I am the Lord and not a conjuror.

I gave this child a gift

that I denied to all of you…

~ Eternal Innocence ~

To you he looks imperfect,

but to Me he is flawless.

He will never offend me

as all of you have done.

He will never pervert the work

of My Father’s hands.

He is necessary to you.

He will evoke the kindness that will prompt you

to gratitude for your own good fortune.

He will remind you every day that I am who I am,

and that my ways are not yours.

I have chosen you.

This little one is my gift to you.

Treasure him.

~author unknown~

A few words from Joe

Following is a post from my 9 year old son.  He typed this all by himself.  I didn’t know that he could type so well!  :

Hi! I’m Joe. Andrew and I always have fun together and Justin and I have fun too. the best part about CDLS is donating money to them. Also every 2 years we have a confrence and it’s VERY fun. you get to meet new friends there and stay at a hotel. (There like the best hotels ever!) I love my family and donating to CdlS very much. To all friends (Including Dr’s and people who donate) GOOD LUCK!

Not Sweating the “Small” Stuff

As I was shopping today for an external disc drive for my laptop because mine doesn’t work anymore because Andrew pushed my laptop off the table, I once again thought about all of the adjustments and changes we continue to make in our home to keep up with our little angel.  This particular adjustment cost us about $120.  I guess I got off easy though.  At least the laptop still works. 

Just to list a few:

  • We replaced our glass kitchen table with a granite table for fear of breakage.

    We open our windows from the top now she we don't lose him if a screen pops out.

    We open our windows from the top now so we don't lose him if a screen pops out.

  • New door knobs with lock and key for the powder room and office.  Of course they didn’t fit properly and my husband had to spend much more time than he anticipated to get them to work properly.
  • Furniture is slanted at odd angles to block outlets.
  • End tables are clear of anything and I’m not really sure why we have them at all.
  • Pictures are screwed into the walls or walls are left bare.
  • We paid an insane amount of money to have our TV mounted to the wall high enough so that he can’t reach it.
  • We converted a wine cabinet into an entertainment cabinet because it was the only thing we could find that was tall enough so that he couldn’t climb it, and it had glass doors so we could still operate the DVD and cable box, etc.

    He's actually stuck inside a kitchen drawer!!

    He's actually stuck inside a kitchen drawer!!

  • The chairs at our breakfast bar are bungied together so he can’t tip them over.  They are heavy metal chairs and he’s already dented our refrigerator and taken chunks out of the cabinets when he dumps the chairs over. 
  • Outlets in his bedroom have been raised out of his reach (and mine unfortunately) so we can safely plug in his DVD player and other light up things that he likes to watch at night.
  • We had to replace our ceiling fan in the family room with a ceiling fan that has a light fixture because he managed to break the only lamp we have in the house, twice.  Of course the wiring wasn’t there so we had to hire an electrician.
  • Our dog had to learn her own type of modified sign language because we can’t leave food or water on the floor for her.  The poor thing has to drag her water bowl across the floor if she wants water and her food bowl if she is hungry. 

    Ripping up the old decking.

    Ripping up the old decking.

  • And the latest thing, a new deck with composite flooring to try to eliminate the many, many splinters he gets all summer.  What fun for Paul!    

I could go on and on.  It’s amazing how much time is spent trying to outsmart him and plan for his next move before he actually does it.  I even use luggage straps to wrap around his dresser to keep him from being able to open the drawer and slam it shut at all hours of the night.  It surprises me sometimes at how resourceful I can be.  I didn’t know I had it in me.

Even with all of that, you can’t help but be completely in love with the little brat. ; )  I have to say, we’ve certainly learned alot about not sweating the small stuff.  Sometimes the small stuff ends up costing you a few bucks, but it’s still small stuff in the grand scheme of things. 

He’s happy, he’s fairly healthy, and we have, so far, had the resources to keep up with him.  And he keeps my brain from getting too lazy!   So I’m thankful for that!

Andrew 101

 

first trip to the beach

first trip to the beach

I’m new to this blog thing, so please bear with me while I find my way around.  Andrew 101 is a great way for me to get started.  So…Heeeeere’s Andrew!

At birth Andrew weighed only 4 pounds and 15 ounces.

It was a scary time but he was a trooper.

He has great eye contact easily gets people to fall in love with him.

He had a nissen fundoplication at the age of 2 1/2 months and a g-tube placed at the same time.

Andrew has been fed through the g-tube since 3 months of age. 

He enjoys the tastes of certain foods, but has difficulty with the whole chewing, swallowing and breathing thing all at the same time.

The foods he loves to taste are chocolate chip cookies, oreos of course, and cheese puffs, as well as doritos and lime flavored nachos. 

He’s now 6 years old, weighs about 30 pounds (and has for the last 2+ years) and is about 36 inches tall.

He attends an autistic support classroom in a school nearby.

He loves his keyboards (yes, he has more than one)

He loves his keyboards (yes, he has more than one)

Andrew loves school and riding the bus to and from school

As most kids with cdls, Andrew has significant delays in speech.  He likes to say “mom mom mom mom” and has started producing the “h” sound which is pretty exciting.  We expect some speech some day.  For now he uses pictures, over 30 words in adapted sign language and we are experimenting with augmentative devices.

Andrew has two older brothers.  Justin is 19 and Joe is 8. 

His favorite things are toys that light up and make music, anything that vibrates including his electric toothbrush, and mirrors (he’s his favorite playmate).

His favorite things to do:  spinning, banging on EVERYTHING including tables, cabinet doors, windows (the louder the better), dumping our kitchen chairs, swinging on the swings, driving his little electric car in circles in the yard, running, oh…and harrassing our dog.

He’s recently become obsessed with zippers and will approach strangers to zip or unzip their coats.  I’m in no hurry for him to figure out that most pants have zippers too!  Yikes!!

He has an infectious laugh and at times appears to be laughing hysterically at absolutely nothing.

Loves foot rubs and can manipulate almost anyone into giving him one.

He just surprised Dad with the "three stooges" poke in the eyes.

He just surprised Dad with the "three stooges" poke in the eyes.

Andrew has a great sense of humor and likes to tease.

One of his favorie games is what we like to call “Andrew says”.  It’s kind of like “Simon says” only Andrew always gets to be the leader.  If someone else tries to lead he quits the game.

While he can certainly push the limits and beyond, he is truly a joy and such a happy boy.

Because of Andrew we’ve joined a special club in the world of special needs.  We’ve made so many new friends and have grown in so many ways.  I know it sounds cliche, but what a blessing!!