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.

Happy Easter

We hope everyone had a Happy Easter. We went to my parent's house for the day. We had an egg hunt and a nice meal. The weather was a little cold for Easter so we had to stay inside. As usual, Ben spend the ENTIRE day on Pap Pap's lap. Ben can't get enough of him!

We even had to move Ben's cousin Elle to Pap Pap's lap so Ben would cooperate with the picture. Don't the kids look so sweet in their Easter clothes?

My brother Aaron, his wife Jen, and their daughter Elle.

Mike and I with our little bunny. Another favorite of Ben's is chewing on his sleeves. He is actually chewing holes into most of his clothes!

A close up of Ben hard at work starting a hole in his Easter shirt!

Grandma Deb and Pap Pap

I Love My High Chair

Ben has been wanting to sit in his high chair a lot lately. If he spots it, he reaches "up" for us to put him in it and if we don't, he has a fit. Even today, he wasn't even in the same room as the high chair, but started having a temper tantrum. I put on "Yo Gabba Gabba" and that didn't calm him down (that use to work like a charm). I went through all his toys and that didn't help. I finally pulled in the high chair and put him in it... instantly he was fine. He is so funny!! I don't know why he likes his chair so much now. He rarely sat in it before his leg was broken and when he was in it, he wanted out.