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.

So Much SNOW!

The weather forecast was RIGHT on the money this time!!! I can't remember the last time I've seen so much snow... and we are still expected to get five more inches before the day is over. While Mike was shoveling (I started and couldn't finish so he took over), I decided to take Ben out to enjoy the fast falling flakes. I don't think he knew what to make of it.

What is this stuff?

Where is it coming from?

Ben and I

You can see how fast the snow is falling. What is collected on Ben's coat happened in only a few minutes.

Ben and Daddy. The snow is as tall as Ben's car!

Winter Weather -- Go Away!

We are once again getting dumped on with a winter storm. We are suppose to have a foot of snow by tomorrow and the city is already closing down. Our night nurse won't be able to make it in the weather and we probably won't leave the house all weekend. Ben will definitely get his mommy and daddy fill this weekend!

This is the beginning of the snowfall (I took this picture from our front door). I will be sure to post pictures of the final product tomorrow and post them.

Ben curled up in front of the window to watch the snow fall. All he needs is a cup of cocoa and a good book! Isn't he the cutest?!?

In case you were wondering what all those cards were laying on the floor next to Ben, they are laminated pictures of all his toys. We are working on having Ben point to the picture of the toy he wants to play with. We started this because we are having trouble knowing what Ben is wanting since he doesn't talk and can only sign two things and uses those signs for everything. Ben gets VERY frustrated with us when we can't figure out what he is asking. Ben loves looking at the cards and bending them, but so far isn't using them to express his wants. Hopefully with more work, he will soon.

He is starting to reach his arms towards the direction of the room that contains the object he is wanting. We just have to narrow it down from there by presenting Ben with everything in that vicinity. He will push away what he doesn't want and take what he does. I feel like most of my day is spend playing the "Hot-Cold" game. I'm hoping the cards will be a more consistent and easier way for us to communicate to each other. Poor guy, how frustrating for him.

Appointment Updates

This week, Ben had an ultrasound of his kidneys, an EKG and HOLTER monitor of his heart and a his first Physical Therapy (PT)consult after his broken femur. Here are the results:

Kidneys - Still looking good with no signs of deterioration. We will follow-up again in six months with another ultrasound and a VCUG (the test that can see his urinary track reflux). Good news.

Heart - Ben still has the same blocked and irregular heartbeat, but no changes in the length of time it takes for his heart to kick in the rescue beat. The doctors think this will stay stable indefinitely and he won't need a pacemaker. They just want to follow-up once a year and repeat the tests to make sure. Also good news.

PT - This was more or less an evaluation meeting seeing what Ben can and can't do and how he needs to recovery from his injury. It was recommended that Ben attends Children's Hospital weekly for intense physical therapy. However, there is a waiting list and we have been put on it as a top priority. I have called Ben's pediatrician to see if he can help speed things up. In the meantime, we have been given some things to work on at home.

We have also found out that since Ben's injury, he is now afraid of the hospital. As soon as sit him on the table, he panics, starts crying and reaching for me. He wants as far away as possible from the doctor or nurse and doesn't even want to look at them. It breaks my heart. I think he is afraid of getting his cast put back on and that is why he is acting like this.