While We Wait...

Still waiting on the test results from Ben's heart HOLTER. As soon as I hear, I'll post the news...hopefully the good news. In the meantime, Ben has found entertainment in this new ball he got for Easter from his Aunt and Uncle. It has brought much joy to his life and kept him entertained for hours on end...which is nice considering all the rainy weather we have been getting.

Making Progress

Ben has started working with a PT at school (we haven't had a lot of success with physical therapy in the past) and he is starting to make progress bearing weight on his legs! He seems to do his best work when motivated and balls on the window sill did the trick this day! He would initiate standing and with help he would get up from the therapist's lap and reach for the balls. He would stand for about 10 seconds before sitting back down, which is a HUGE improvement. This will definitely help his bone density and leg strength.

Hot Ride

Grandma Deb has a "Hot Ride" at her house and Ben is a fan! It has the option to be controlled by a remote so he doesn't have to steer, which is perfect for Ben.

Behavior Issues

I've always heard that behavior is a problem for CHARGE kids and I guess I sort of pushed it to the back of my mind. I figured there was no need to worry until we had to deal with it. Unfortunately, we are now dealing with it. Ben has started to hit his head on the ground when angry and hit himself in the face. It is so difficult to deal with and we are struggling with ways to stop it. By responding, we seem to be reinforcing the behavior. By not responding, I'm worried he is going to hurt himself since his threshold for pain is so high. We are reading a book that is suppose to shed some light on why the behavior happens and I'm so hoping it will offer techniques that will help.

Cardiology

Ben had his annual Cardiology appointment and EKG this morning. Those all went well and he was given a Holter Monitor to wear home for the next 24 hours. This is so they can see his heart rythum during sleep, playtime and during anger. I'm always very nervous to hear the results of the Holter because at any given time, they could say he needs a pacemaker. I'm praying that his time isn't now, and that he can go his entire life without his heart slowling down. Should take about a week to get the results.

Needing to gain weight

Ben's weight, or lack of weight gain has been a big topic among some of Ben's doctors lately. They are extremely concerned that not only has he not gained weight but lost weight the past two years. And because he struggles so much to tolerate his formula or anything different, we are limited with what we can try. We recently tried a fatty oil called MCT oil to add calories to his daily intake. After about a week on it, he started acting extremely irritable and was having bad stomach pains followed by periods of zoning out. We stopped the oil and those symptoms improved dramatically. We are now trying to increase the calories of his formula but are doing so in three stages to make it gradual and help with Ben's chances of tolerating it. Stage one has been ok so far. I'm really keeping my fingers crossed.

Ben Signing at School

Ben is being shown pictures of the item with no words. He then signs the item and his interpreter has to guess what he is signing since she will eventually be interpreting what he is saying to hearing people. If his sign isn't exactly right, the interpreter then shows him the right way. You will also see how his trach is suctioned (done by his day nurse) and the device he is in is a stander (helps strengthen his legs and bone density).

Had a HUGE update post that I was going to include with this video; however, the computer gave an error code after including the video link at the end and I lost it all. Unfortunately I don't have the time to retype it all now nor do I remember what all I said...so a video is going to be it for now. :)