Handy Manny - we love you... even more!

The only two shows Ben watches are Mickey Mouse Clubhouse and Handy Manny. We LOVE them both, but I have to say Handy Manny just took the lead. An episode titled "Supremoguy; Tool Talk"taped the other day and it teaches about deaf people. They even teach some sign language!! How great that the writers decided to touch on this topic!! I highly recommend this show, in particular this episode.

Cleaning and Planting

Cleaning:

Ben had a dentist appointment on Monday and he did so well. I was worried he wouldn't cooperate because he just had his Ortho appointment the Friday before and they were rough with him. But he handled it like a champ! He let them look at his gums, scrap a little tarter off his teeth, clean his teeth, give a fluoride treatment and even get an Xray of his front tooth that is a little yellow and twisted (they wanted to make sure there wasn't an infection in the bone, which there isn't). Pretty impressive, huh?!?! All without watching any Mickey Mouse on his portable DVD player either.

Planting:

Ben's preschool room has a sensory table and they always have the coolest things in there for the kids. It is changed out on a weekly basis. This week has to be my favorite one yet! The table contains a bunch of beans and plastic flowers for the kids to plant. Isn't that so clever!! Ben was a big fan and it warms my heart seeing him playing in it (thanks Nurse Kim for taking the picture).

Difficult Day

Today was a very difficult day for me. Ben had his ortho follow-up with the new ortho doc who specializes in hips. Overall, I liked the doctor and felt he was very knowledgeable. But having the doctor understand Ben, CHARGE Syndrome and his capabilities in a 30 minute office visit is next to impossible. Ben's hips, arms and hamstrings are very tight and he does had a lot of muscle tone issues due to his stroke, but what the doctor saw wasn't Ben at his best. Ever since Ben's femur break, he panics when someone starts tugging on his limbs
(especially someone new AND at a doctor's office) and uses all his energy to curl into a ball.

Based on what the doctor saw, he informed us that the chances of Ben EVER walking are "unlikely". He recommended Botox injections combined with casting/splinting his limbs to help stretch him so he can sit in a wheelchair. He felt his level of tightness would make even wheelchair sitting an obstacle for Ben. Needless to say, I was devastated. That is news no parent wants to hear. And then relaying the same news to your spouse is heartbreaking all over again because you are now the bearer of bad news.

I've decided against Botox and casting for now because Ben CAN sit comfortably in a chair. If the time comes when he can't, I will definitely explore it then.

Being the parent of a child with such a complex medical syndrome is emotionally the hardest thing I've ever had to do. You are told upsetting predictions and worse case scenarios from numerous doctors on an ongoing basis. It sometimes seems like too much to handle but yet you have to remind yourself that things can be worse, are worse for others and be thankful for the blessings you have.

Kings Island

The company Mike works for rented out Kings Island today for their employees and immediate families. It is closed to the public so the lines are short and it is the perfect opportunity to take Ben - especially considering we live 5 minutes away. It rained all day, but at least we weren't pored on... it was a light rain.

One the rain picked up, we rented one of those cool strollers the park had and boy are those nice! The only obstacle was getting Ben into it. I think he thought it was a piece of therapy equipment and was scared of it. Once he realized it didn't cause him pain, he kicked back and enjoyed the ride. Ben also got to see some of the Nickelodeon Mascots. Wasn't a fan of those either. They scared the britches out of him.

Next, we took him on the Merry-Go-Round and I was so excited to see him on a horse. I thought this would be a perfect opportunity to get him use to the hippo-therapy he is starting in June (horse riding therapy). No such luck. Ben wanted nothing to do with the horse, so Dad and Grandma Deb rode on the bench with Ben. This is probably a sign of how hippo-therapy is going to go. He rode one other ride and enjoyed this one - it was an airplane. He favorite activity of the day though seemed to be riding in the stroller and holding the brochures (he LOVED those and even took them on the rides with him - that is until he traded them in for a piece of pizza crust and a fork).

I'm glad we went and had a decent day. I'm really glad it didn't cost us anything since we were only there for an hour and a half. Ben yawned the WHOLE time like he was either bored or tired.

Ben and I under some shelter from the rain

Grandma Deb and Ben when entering Kings Island - we had about 5 minutes without rain.

Dad and Ben after getting off the plane ride - with Ben's brochures in hand.

Ben in the super cool rented stroller. It was great. It fit all his equipment, pushed like a dream and turned on a dime.

Ben riding the bench instead of a horse... not looking good for hippo-therapy.

The plane ride Ben liked. If you look close, you can see his brochures on this too.

Ben yawning and holding his new attachment items (crust and fork)

Mouse in the House

With all the holes Ben has in his shirts, you'd think I had a mouse in the house. Nope! Ben, like most CHARGErs likes to chew on things... Ben however only chews on his shirt collars. We have given him every alternative known to man, but he prefers the taste of cotton and especially when it is conveniently attached to his chest (I've even tried giving him old shirts to chew on but unless he is wearing them, he isn't interested). And if the shirt happens to have a puffy logo of some sort, that is just a bonus!! We've actually had to ban heavy sweaters (got too much lint in his mouth and caused him to have lint plugs in his trach) and shirts with buttons around the neck (I had visions of him getting a button lodged in his airway or throat and it looked funny to take all the buttons off).

This habit started last year around this time when he started chewing on his shirt sleeves. But once summer started and the sleeves shortened he moved on to collars and has stuck with them ever since. I am hoping the warm weather comes soon because we are running out of long sleeve shirts! You might have to click on the pictures to enlarge them in order to see the holes. Needless to say, I won't be taking Ben's shirts to the consignment store for resale.

Peter Cottontail Visited Mason, Ohio

We had a very nice Easter. We went to visit my parents for the day. We had an egg hunt - if you can even call it a hunt! We just put eggs in places Ben could see so he could learn to grab the egg and put it in his basket. He caught on to the concept after being showed once. It went so well we had another one at our house. The rest of the visit was spent visiting, coloring for Ben (he really enjoys markers right now), enjoying some good food and playing Mexican Train (LOVE that game and I'm happy to announce that I won!).

He found the EGG!

And put it in his basket.

After Ben finished coloring on his paper, he found it more fun to color on the tray and baby wipe used to clean up.

Thank goodness for washable markers!

Mike, Ben and I (not sure what Ben is doing with his tongue).

Ben in his usual position - on Pap Pap's lap.


And this visit he even spent a lot of time on Grandma's lap. He must have FINALLY realized all the times she comes up to help when he is sick. :)

I'd Rather Not

"I'd rather not see than watch commercials." This should be Ben's quote during Spring Break. He has developed this hysterical habit of covering his eyes tightly with his fists when his favorite show ends (Mickey Mouse Clubhouse or Handy Manny) and the commercials start. He keeps them covered until a new show starts and only checks to see if a new show is playing every three minutes or so. It just cracks me up! Can't say as I blame him though. Who wants to waste time watching commercials but I don't know if I'd go as far as covering my eyes :) You'll see Ben holding something in his hands in these pictures. That is a picture card of Mickey Mouse Clubhouse. We use picture cards to allow Ben to select what show he wants to see. On this occasion, he selected the card then covered those eyes until Mickey was on the tube.

ENT surgery before UROLOGY surgery

Ben had another follow-up with ENT yesterday to make sure his ear infection was clearing up. And I'm happy to report his ears are in good shape. His ENT doctor instructed us to go ahead and schedule Ben's throat scope (MLB) and nose scope with him now. He decided there was no need to wait until after his Urology surgery. Ben will be going in on May 22 for both scopes. I am SO, SO hoping for some good news about his airway. I am truly worried if it isn't better now, it will never be better and Ben will then have his trach for life. So I'm doing a lot of positive thinking and praying for the best.

Change in Plans

Ben is feeling much, much better (gotta love antibiotics) and has had a pretty good week at school. He had a follow-up ENT appointment this morning for his nose (I'm still dilating daily and it's still open - YAY) and ears. I knew his ears were still infected and would probably require some deep suctioning under the microscope, so no surprise there.

We talked a little about his upcoming Urology surgery. My initial plan was to limit Ben's anesthesia exposure and have the Urology surgery done at the same time as his routine airway scope. The problem arose when I tried to schedule those together. Because his Urologist is the head of the department, he is scheduling way out. Coordinating with the Laparoscopic Surgeon he wanted to use during this surgery put it even further out. After we found a date they could do, I called too see if our ENT doctor could do that date. Unfortunately, their books didn't schedule out that far and they didn't know the doctor's availability. We had no choice but to keep the date and hope our ENT doctor could do it.

No such luck. The ENT doc isn't in the OR that day. ENT said that they would send out another attending to do Ben's scope. After today's discussion, our ENT decided he doesn't want to do that since Ben's airway is so unique. He really wants to see for himself if it is improved. It isn't fair to have another doc not familiar with Ben make the call to proceed with airway reconstruction. Soooooooooooooo, we are going to have to schedule the ENT scope separately after the urology surgery. Needless to say, I'm disappointed but glad to have the doc that knows Ben the best looking at his airway. If someone is going to make the call to start airway reconstruction, I want it to be him (and I am so hoping that is what he says - we have been waiting over 3 years for a good airway scope).