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) ūüôā

Wordless Wednesday

010

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?

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!!