Medical Update

Still no date for Ben's surgery. It is taking a while to coordinate the head catscan and the ENT scope - who knew?!?

Ben is starting his preschool meetings and it is crazy to think about him starting school in the fall. I can't help but giggle thinking of him sitting in a classroom. :)

Ben is getting all new therapists because he is now strong enough to handle going out in public for therapy! YAY. I am so excited that he is no longer considered fragile and needs home therapy. And, the team of therapists he is getting hooked up with is amazing! I can't wait. We had our initial meeting and they had so many good ideas. The one area I think he is going to benefit the most from, is communication.

Ben is back to not wanting to wear his cochlear implant all the time. I'm not sure why, but he is very persistent about only putting it on when he wants to listen to certain toys or TV shows. As soon as those stop, he flick it off. I'm not pushing him too hard on the issue because I think it is a control thing for him. Hopefully this is just a phase and will soon pass.

Memorial Day

Mike was gone all last week in Las Vegas for a work conference (poor guy, having to spend the week in Vegas... rough!). My mom came down to help me with Ben and I don't know what I would have done without her! I would have been totally exhausted and Ben would have been climbing up the walls in boredom since I'm not able to travel more than a few miles from our house with him by myself! It was nice spending a week with my mom! It was also nice to have a long weekend with Mike home.

On Monday, we went to my parent's house in Dayton to visit with them,my brother (Aaron), his wife (Jen) and my niece (Elle). Ben is starting to get a little more comfortable with Elle, although he still hasn't warmed up to the idea of sharing toys with her. Maybe one day! Ben is also going to get another cousin any day now! Mike's sister (Theresa) is due with her first child (Ian) on June 1. Here is a picture of Ben and Elle.They are both looking up because I was jumping around like a monkey to get the two of them looking in the same direction at the same time - I should have crawled around instead to get their heads down.

Surgery Canceled for Today

Ben was suppose to have a scope of his airway today and a good ear cleaning. I realized earlier this week that he also needs a head catscan this summer (which Ben has to have under general anesthesia since they don't feel comfortable sedating him due to his airway being a trach). Since it was such short notice, there wasn't enough OR time available to add a catscan, so I rescheduled. It is probably for the best since Ben has either had a cold for the past two weeks or really bad allergies. I don't know if his airway would have looked any better considering the amount of secretions he has lately. And we really want to see a true picture of his airway on a regular day. Our hope is that his airway swelling has improved this past year and we can begin the long process of surgery to get him off of his trach.

Zoo Blooms

Today was beautiful in Cincinnati so my mom came down to visit and help me take Ben to the zoo for a few hours. Right now, it is "Zoo Blooms" season and the tulips were out in full force. They were beautiful! If only I could recreate the same thing at our house!!

Ben rode around in his car (surprise, surprise) and decided to play a fun little game after being there an hour (fun for him, not for us). He would take off his sunglasses, then hat, then the artificial nose on his trach and throw them off the side of the car. He thought this was hysterical! But seconds after he stopped laughing, he would be really upset because it was so bright (he can't squint due to his facial palsy and the direct sunlight is painful for him). So we would stop, put everything on him again and a minute later... the cycle started all over. After about 15 times, we decided enough was enough and we better head home.

Kings Island

Once a year, Mike's employer has a company day. This year, the company rented out the amusement park Kings Island (we live only five miles away from the park). We have been wanting to take Ben, but there are only a few rides he is able to ride and it seemed crazy to pay $30 per ticket for that. Not to mention waiting in long lines doesn't seem like something Ben would tolerate. So needless to say, we were thrilled when we found out Company Day would be at Kings Island, closed to the general public - only employees and family members, and in addition to free entry, you also received $10/person in vouchers.

My mom, Ben, Mike and I had a great day at Kings Island. Ben rode four rides (two of them he rode twice) and spent a couple hours riding around in his car just taking in all the sites. The weather cooperated and we didn't see any rain (they were calling for 70% chance of thunderstorms). We got there right when the park opened and not many people were there yet, so we didn't have to wait in any lines. Ben seemed to enjoy all the rides he went on with the exception of the Mystery Machine Haunted House. We didn't even make it on that ride because the whole area leading up to the ride was so dark that you couldn't even see your hand in front of your face. That totally freaked Ben out. We had to exit that ride immediately! I didn't need to see Ben's face to know that he was crying.


My mom, Ben and Mike. Even with the weather forecast, Ben still brought out his convertible!

Ben wasn't a fan of riding on the horses in the Merry-Go-Round, so he sat on the bench.
The Airplane Ride - Grandma Deb wasn't a fan of this ride.

This was the second time Ben rode the Airplane - Grandma got off and I got on.

These little helicopters were so cute!

Ben and I snuggling inside the helicopter. Ben utilized that time to chew on his jacket.

Dora's train ride

And since we didn't experience the Mystery Machine Haunted House, we decided a photo opt with the van was in order.

My cuddly...

Plastic Barn. Most kids have blankets they carry around or stuffed animals they like snuggling with... but not Ben! His favorite item to snuggle with while he watches TV at night is his big, heavy plastic barn. He loves laying it across his stomach, holding the handle and opening and closing the doors (he's broken two barns so far from constant opening and closing).

Kettrike

Last winter, we filled out some paperwork requesting a modified Kettrike for Ben from a local non-profit. A Kettrike is a regular tricycle. The non-profit organization we requested the bike from finds a donor to cover the cost of the bike and whatever modifications your child needs to ride it (bigger seat, Velcro to hold their feet/hands on, wheels that turn automatically, blocks to bring the pedals closer, etc.). We didn't hear anything after we sent in the application, so we figured our chances of getting one were slim to none - thought there were just so many kids already on the list.

We were wrong! We got a call on Saturday to say that our bike was ready to pick up! So exciting! We picked it up that night and tested Ben on it today (we had a beautiful day here). We still need to have some additional modifications added, but it is just so great to have a trike for Ben! He looks so stinking cute on it too with his helmet. We can't wait until it is completely set for him and we can take him out for a long walk.