Christmas Tree (Wordless Wednesday)

Andrew has more fun taking things off of the tree than putting them on.

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

Kid Tough DVD Player by Fisher Price

Watching Barney in the car

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.

Wordless Wednesday

Can't help but smile when you see a rainbow...

Can't help but smile at a rainbow... : )

I know I’m a little early, but I have a busy day tomorrow and might not get to this.¬† Enjoy this marvel of nature.¬† I never cease to be amazed by the wonder and beauty of a rainbow.¬† This one was behind my house just the other day.¬† Can’t help but smile and feel good when you see one.¬† If you look closely you’ll actually see two rainbows!

Wordless Wednesday

Don't be fooled. This looks like a quiet, peaceful event. However, he is banging and yelling celebrating the successful climb to the windowsill.

This looks like a quiet, peaceful event. Don't be fooled! He's banging and yelling to celebrate his successful climb! But I can look at it and pretend we have those quiet peaceful times:)

Oh my goodness!!

"the little darling"

"the little darling"

I just checked my calendar.¬† That’s where I put all of the stickers from the g-tube box that has the serial numbers on it.¬† I also note each day that I have to change his tube.¬† SIX g-tubes in the month of July!!!¬† Yes, SIX!!¬† That’s insane!¬† And that’s with all of the measures in place that we could come up with to keep him from pulling them out…overalls during the day, onesies and shirts pinned to shorts at night.¬† During the day has been pretty good.¬† But night times are a pain in the neck now!¬† I can’t put him to bed in overalls.¬† Not with all of the metal buttons and buckles.¬† That would be very uncomfortable I would think.¬† The onesies are useless.¬† He pulls the tube out anyway, but at least it doesn’t get lost.¬† And he can’t very well chew on it when it’s stuck inside his clothes, right?!¬† UGH!!!¬† All suggestions welcome!¬† There’s got to be something!

Wordless Wednesday

Tables are for glasses, not for...oh, never mind!

Tables are for glasses, not for...oh, never mind!

My Poor Baby!

My poor baby!¬† So much pain sometimes!¬† This morning I was awakened by a loud bang.¬† By the time I heard the second bang I realized it was Andrew’s head¬†banging against the wall.¬† I jumped out of bed and ran to check on him.¬† Then the screaming and crying and arching and rubbing started.¬† It didn’t last too long this time.¬† Only about 15 minutes.¬† I gave him motrin and some prescription medicine we got from GI that is supposed to help with intestinal spasms.¬† I guess it worked because he’s back to sleep now.¬† But not before putting a dent in the wall with his head.¬† I guess he’ll be staying home from school today.¬†

He had this pain at school on friday.¬† His aid said it was the worst she has seen.¬† I took him for x-rays (our doctors are wonderful and very cautious with Andrew) and they found nothing.¬† Not even constipation, which I was sure they would find!¬† So, back home again with no answers as usual.¬† Always a mystery.¬† His GI doc has speculated that he may be having intestinal spasms or even kinking because the pain seems so severe at times.¬† She even offered to have him admitted for a few days to try to catch him when it happens.¬† We declined since you can never tell when it’s going to happen, and even if you catch him in full pain mode there¬†is no way to get an x-ray without sedation and the moment would be lost.¬†

So, we carry on and use whatever means we can to keep him safe during these “episodes”.¬† We cry with him, take the beating when he lashes out, and lose a few more strands of hair when he gets close enough to pull them out.¬† We medicate him with whatever we think will work at the time and pray for the pain to go away quickly.¬†¬†

These episodes seem to come in spurts.¬† He can go a month or two without¬†a major one, then he’ll go a week or two when he goes through it every day.¬† I wish he could tell us what’s wrong.¬† It’s just not fair.