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.

Slowly but surely...

Ben has been recovering slowly but surely after his cast removal. He use to roll like a log to get around the house, and he doesn't do that anymore... he edges around on his side which takes him much longer, has to be more tiring and therefore doesn't go too far. He won't put any weight on his feet now too. We try to stand him and he pulls up his legs and collapses to the floor. He also won't sit independently on the floor yet. Every day we work with him on all of these things and I'm sure in time he will get there. I think he is just so weak and scared right now.

Ben starts intensive physical therapy on March 5 at Children's. His Ortho Doctor has a specific therapist she wants us to work with at Children's. The only downside is we have to take him to his appointment at Children's, we can't do home therapy (which is how Ben has been receiving all of his therapies because of his trach and involved feeding schedule). Hopefully the PT will be pretty flexible with our schedule. I have day nursing two times a week and my mom comes up at least once a week to help (much more lately). Ben will have to have therapy during one of those times since he needs two people to travel with him (one to drive and one to sit in the back and suction).

On a positive note, Ben's demeanor has been incredible since the cast has been off. He is also much stronger with his fine motor skills now. He is developing quite a list of favorites too!! He has one book that he just loves (Bath Time Peek-A-Boo) and wants to read over and over again - he pushes away any other book we offer him. He will only color with the green crayon. All the other colors get flicked off his desk WITH the green crayon. And he has two favorite toys, both that light up and play noises. Ben keeps those things running almost all day. Yo Gabba Gabba is still a fav, but he only get to watch a few episodes a day.

Sitting in my desk like a big boy.

Go Green!

Happy Little Camper

Since Ben's cast has been off, he has been a happy little boy. He still isn't rolling much, mostly getting around by edging on his side (he will roll once or twice a day, but goes very slowly and carefully). His mood has been incredible! I have never seen him so happy. He just wants us to tickle him ALL day! I so wish the weather was warmer so I could take him for walks or swinging.
Ben's schedule is going to be packed for the next month or so! I cancelled all appointments he had while his cast was on and now we are paying the price. When you have 19 different specialists you see every 6 months and most of those specialists all order additional tests of some sort, it becomes a full time job. This morning when I counted up all his appointments I started laughing. Before Ben, I didn't even know there WERE 19 different types of medical doctors in the world. Now I know them all by first and last name, their clinic location in the hospital and the name and number of their Nurse Practitioner. If only they gave out frequent patient parking spots in the hospital garage!!! At least it will make the time fly by until spring starts.

And on a side note, is anyone else having trouble with spell check on their blog sites? Mine doesn't work! I click it and it doesn't start the spell check program. Hmm.
Here is our happy little camper helping Grandma Deb and me pick out some cute scrapbooking stuff.

Cast Away!!!

Yes, you read that correctly!!! Ben's cast came off today. I am still in shock. He was hurting pretty bad after they removed the cast and he moved his legs for the first time, but 30 minutes later he started moving his legs with a little more ease in the car seat. Once the stiffness wore off, Ben then started pulling up his pants and scratching his legs. He actually couldn't stop scratching them!! Skin was flaking everywhere in the backseat of the car. I'm sure it felt so good to scratch away!

And Ben is so happy! He has been laughing and playing on the floor for the past hour. He isn't moving yet, but I think by tomorrow he will try to roll again. What an amazing day!!! I am so thrilled to have my cast-free baby back. I use to focus so much energy wishing Ben would start walking that I took for granted his ability to roll. These past 5 weeks made me realize I need to be appreciative of his ability to move, even if it isn't walking.


Cutting the cast off - Ben was not a fan!

This is the cotton under the top half of the cast.

Ah, legs are free at last! I'm sure the cool air felt good.

It hurt whenever Ben moved his legs, so he kept them in the same position as the cast and feel asleep out of exhaustion.

So tired! (Ben sleeps with his eyes open)

Cold and Ortho Update

Ben came down with a cold last weekend. He has this nagging cough (nebulizer treatments of Xopenix has helped) and has had so many secretions that we are suctioning his trach every few minutes (which is ticking Ben off). His mood has been pretty good considering though. Dad woke up this morning feeling pretty crummy too, so I am trying my best to stay healthy!

Tomorrow Ben has his 5 week ortho follow-up. They are going to take some more xrays and their hope is to take his cast off if everything is healed up completely (my hope too especially considering Ben is starting to get a sore on his spine from where the cast is breaking down and it doesn't help that he is now wiggling around on his back). My brain tells me that he will probably have the cast on for a few more weeks, but my heart is so hopeful it will come off tomorrow. I'm packing a pair of pants though and maybe positive thinking will deliver some incredible news!