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.

Proud Of My GUY!

Ben is now able to sit on the floor indian style all by himself (again). This is the first time he has been able to do this since his broken leg. It isn't easy to get him into sitting and we have to distract him with the TV to keep him sitting, but it is a start! I put pillows all around him in case he tips over - which he does when he loses his balance or gets tired of sitting.

Words can't express how happy I am to see him doing this again. I was so afraid it would take another year for him to regain this skill. I'm so proud of my guy!

Next up is bearing weight on his legs - which is detrimental to his bone strength. We are working hard to get him a stander and are trying to do what we can at home in the meantime. Ben is improving, but still very week and tight. With lots of persistence and VERY frequent stretching... I know we will get there again.

A Little Prayer

My grandfather hasn't been doing very well lately. He was just released from intensive care but is still not doing well. God love my grandma for taking such good care of him too! I know how demanding it is to take total care of someone, but I'm young and Ben is just a little squirt - I can only imagine how much harder that would be if that someone was in their 70's and I was in my 70's as well. Please say a prayer for them. I only wish we lived closer so we could help!


This is my Grandfather with Ben. I was so thrilled that they made the trip down to see us even though my Grandfather wasn't doing too well even then. Traveling with Ben is challenging to say the least and ditto for them.

This is my sweet Grandma!

Good News On Ben's Latest X-ray

Ben had his 6-week post-cast follow-up this morning. His X-ray looked great. His right leg is only a tad shorter than the left, which was a concern with a break of this sort (and the doctor thinks it will correct itself in time). I asked her about the cracking nose his leg makes whenever we move it. She was able to see exactly what I was talking about when she adjusted his leg slightly. She thinks the noise is a result of the muscle "popping" over the bone since the bone isn't completely straight yet. It doesn't seem to hurt Ben and she thinks it will continue to improve and go away completely in 6 months. If it gets worse or starts to bother him, we need to schedule an appointment right away... otherwise she doesn't need to see him for another 6 months.


I also had her look at Ben's spine since I've noticed it seems to be a little off center. We will keep on eye on it but there really isn't anything we can do to help it due to Ben's age and medical devises he already wears (trach, gtube, etc.). Ben is at a higher risk of developing Scoliosis.