Happy New Year

Happy New Years everyone. Hard to believe 2009 is going to be here tomorrow.

On January 5, Ben will be back at school. He is going to be starting to ride the school bus once he goes back. Pretty exciting, isn't it? For preschool, only the special need kids have the option for busing. They ride the bus with only other preschoolers. A typical preschooler can ride the bus if they live on the same street as a special need child and are willing to walk down to their house. I was a little hesitant at first because I knew Ben wouldn't tolerate waiting outside for the bus. But, Ben's teacher called and asked if we had him ready but inside, would they stop and wait for us. They were very accommodating. So, the bus will pull up at approximately 8:45 a.m. and wait for us. I will then carry Ben to the bus and his nurse will carry his equipment (suction machine, trach bag and backpack). There will be a carseat on the bus for him to ride in. I'm really excited and hopeful that Ben enjoys the ride. On the first day, he will just be riding the bus home. If all goes well, he will start riding daily after that.

Quick Update

Hi everyone,

Hope you all had a Merry Christmas. We did. For the first time since Ben's birth, we had a nurse on Christmas Eve and Christmas night. What a nice treat! It was wonderful not having to cut our time together short to rest up. And we got so many nice gifts from each other, our families and our wonderful nurses. Ben even participated in some of the gift opening (with the help of Pap Pap). It was a Christmas to remember forever! This coming weekend, Mike's mom, sister, brother-in-law and nephew are coming to visit and celebrate a late Christmas with us. We are looking forward to it.

Ben is on Christmas break from school until January 5. We have two appointments during break. One is a renal ultrasound tomorrow to follow-up on the cyst they found on his spleen three months ago. The second is an opthamology appointment on Friday. Just the normal annual eye dilation to check the peepers.

Below are pictures of my favorite Christmas gift. Santa surprised me/Ben and left it under the tree. I told Santa once about a little Lazy Boy I saw another CHARGE boy in and he remembered!

Pap Pap Tom or Pap Pap Tim??

You know how they say everyone has a twin somewhere out there in the world? We've thought for a while that we've found my dad's (Ben's Pap Pap). Dr. Timothy Johnson provides on-air medical analysis for "World News Tonight," "Nightline" and "20/20." He has also provided commentary on medical problems and answers for viewers of ABC News' "Good Morning America". He has an uncanny resemblance to my dad and his mannerisms... so much that it is spooky seeing him on TV.

We went to my parent's house today and my mom thought it would be funny to print and laminate a card of Dr. Tim to see if Ben could tell the difference (remember, Ben LOVES my dad and spends most of his time either staring at him or a picture card of him, so he should know better than anyone else the real Pap Pap). Well, not only did Ben not notice the difference between the two, he developed a love for the new "impostor" Pap Pap card. Ben is now carrying around a card of Dr. Timothy Johnson everywhere. It is too funny!

You be the judge, are Tom (Pap Pap) and Tim (the Doctor) twins separated at birth?

Ben's School Skills

Ben has learned so much since he has started school. He is being called "a little sponge" by his wonderful aid. They are truly amazing with him at school and words can't express how thankful I am to have such a great team working with him - his aid, his teacher, therapists and even his nurses have all done so much for him and are the reason for his success.


Over the weekend, I decided to get on tape some of Ben's skills (I'm taping and my mom and dad are Ben's fans). He just loves working if you cheer him on - he is such a ham for a round of applause! He even has them cheering and clapping him on at school. Right now, that is such a huge motivator for him, which works for me because it is free!

The video contains five different clips of Ben - I edited each clip down so the entire video wasn't too long. You'll notice Ben chewing up his shirt collar in the video. The more excited he gets, the more he chews. That is one of his bad habits. We've given him therapy toys meant to provide oral input and he doesn't like them. He would rather chew holes in ALL his shirts and fill his mouth with lint. You'll also notice Ben is wearing his cochlear implant in the video. He is great about wearing his implant when doing school games - I think because he wants to hear the cheering! The best clip is the very last one. He is able to do that whole sheet of letters. Amazing!

Make an on-line slide show at www.OneTrueMedia.com

Great Post

This was a previous post on another CHARGE child's blog. It explains some of the major obstacles of CHARGE so perfectly, I had to post it on my site.

"Recently, I was reminded of my first opportunity to attend a “CHARGE Syndrome 101” training to begin to understand the syndrome of my infant daughter. We did a simulation where we plugged our ears and covered our eyes to simulate the dual sensory impairments of CHARGE. Just impacting those two senses in a relatively small way – ear plugs to cause a mild loss and looking through a plastic bag to blur and distort vision – set all of us behind greatly. We had a hard time carrying on conversations, moving about the room, and engaging in any activity. Most people shut down, tried to disappear, hunched to make themselves small, and stayed in their spots avoiding conversation or contact with others.

After we’d experienced that and realized the incredible impact a small impairment can have, the presenters told us to then imagine that ALL of our senses are impaired. Imagine that you can’t hear or see. Your muscle tone is low and your balance is off or non-existent so it takes lots of energy just to stay upright in your chair and control your body in space. You can’t eat so you’ve never experienced taste and have very limited oral motor skills. You can't smell because your nasal passages have been closed and even once they are open, your sense of smell is probably non-existent. You are tactile defensive so you have had limited touch experiences and the ones you have had are uncomfortable to you. Not to mention the many uncomfortable and painful medical procedures endured from birth on.We learn everything through our senses. If you get poor input from your senses, how do you understand your world? Even if it were you inside, as you are now, with “normal” intelligence, how would you learn? How would you show us what you know?

True Love

Ben has another love other than Mickey Mouse - my dad, his Pap Pap. And it is more than love, it is an obsession. He can't get enough of him. When my dad is around, all Ben wants to do is sit on his lap, look at him and occasionally touch his hair. Ben usually isn't a fan of lap sitting and if he does, it is short lived. But for my dad, he will sit on his lap for an entire day! I'm not kidding. And Mickey Mouse doesn't even have to be on TV. He will sit there without a thing to do for hours on end. My dad can't even leave the room without Ben having a major meltdown.

On Sunday, my mom and dad came down for the day to keep me company since Mike was out. When they left at 7:00, Ben was devastated. He cried for 30 minutes and kept on scooting over to the door. He was heartbroken. Ben even has a matching game of our family members' pictures (my mom made it for him on Thanksgiving to give him something to do). Wouldn't you know that Ben has become super attached to the picture of Pap Pap. He takes it everywhere with him... bed, school, the car, on walks, etc. Tonight he wanted to take it in the bathtub and I had to draw the line there!

So I thought I would share some pictures of Ben and his idol "Pap Pap".

Sleeping with the card of Pap Pap

And enjoying time with the real thing!

Surgery Officially Canceled

I've canceled surgery and I feel like a huge weight has been lifted off my chest (at least until it is scheduled again). I'm actually really happy with my decision especially after I was informed that Monday starts the restricted visiting hours... which means immediate parents only and nobody with any colds/illnesses allowed.

My mom was going to stay over at the hospital with me to help take care of Ben when Mike went home to sleep for the night (my mom and I fit better in the pull out couch than Mike and I do). That wouldn't have been allowed. Also, I've come down with something and have lost my voice. Odds are, I would be better by then but if I wasn't... I wouldn't be allowed. My mom is also starting to feel like she is coming down with something.

So now we have one less thing to worry about this December. A Christmas without surgery and recovery will be nice!

Decided to Cancel Surgery

I've decided to cancel Ben's surgery and will call to do so first thing tomorrow. I just have too many reservations. I hate putting Ben in the hospital overnight during cold/flu season. I worry he is going to catch some nasty hospital bug and with his trach, that is easy to do. Plus, this isn't really something that has to be done now... it can wait until summer when he is out of school and not as many things are going around. This is also about the one year mark from Ben's leg break and I just want him to have an enjoyable holiday season without feeling miserable.

I LOVE Paint

One of Ben's favorite school activities is paint (I tend to avoid painting at home because of the mess). During play time, they give Ben a choice of activities to pick from via picture cards. He ALWAYS picks paint. Ben's nurse sent me a picture from her cell phone this morning of Ben painting in school today. It looks like he is painting with a Q-tip and doing quite well (what a great idea they had to incorporate working on his pincher grasp with the painting). When Ben is painting, he first works on the paper and when he feels he doesn't have enough room left, he moves to the next open canvas - his face!

I sent in this Crayola smock for him to wear during messy activities. It is great because it keeps his clothes clean. Most smocks leave the arms exposed, which Ben gets the most dirty. I highly recommend it! Even Ben's aid has to wear a smock to protect her clothes. He's been known to turn the brush on her pretty outfits.

Surgery Still On for December 15

Ben is still a "go" for surgery on December 15. Our mission now is to keep him healthy until then (not an easy task in the preschool environment). He has had about three colds in the last month alone. These colds have given Ben a runny nose for the FIRST TIME EVER (right nostril only, not sure why). For most this wouldn't be exciting news, but for us it is HUGE! This means his nose is still open from his last coanal atresia repair... information I already knew since I'm still able to pass a tube down his nose twice a day but the confirmation of a runny nose is still exciting when he's never had one before.

The surgery in a week is to bring down the testicles - a pretty involved procedure from what I've been told. He will have to stay overnight in the hospital and will be missing that entire week of school (which happens to be the last week before break). The goal is to do the entire surgery laproscopically, but if they aren't able to see what they need they will have to do an open procedure. I'm praying for a laproscopic procedure and that everything goes smoothly with the surgery and recovery. I also hope he isn't in too much pain. The surgery is slotted for 4 hours. When we have a chance, we will post an update on the blog.