The focus of Jenny’s therapies have been to incorporate daily living skill movements in her therapies. She has a number of strong movements, but still not yet able to do self help skills. However, Jenny is so very close to being able to do many of these things. I have been somewhat disaapointed by a lack of significant progress these past couple of weeks. I suppose so many changes occured at once that the lack of huge change (such as trache removal) makes it seem like there has been little or no change. Upon closer look at Jenny’s progress, she has had great increase in her core strength. Once realizing this, we worked with the therapists and tried more aggressive therapies. We had tried many of these therapies before with great pain to Jenny or lack of strength to do them. This go around Jenny was able to easily do these exercises that she could not do just a month ago.

Eating is better and Jenny takes in 2 of her three meals a day orally. She could eat a third meal, but we tend to give her a liquid diet through her G-tube to make sure she ges enough nutrients and liquids. She is taking water much better orally, but it is a slow process. Jenny is also sitting in her wheel chair less each day. She is sitting on high back chairs, the couch, rockers etc… more and she still requests that she sit up in the front van by me- which is more than fine if you ask me. We do more standing exercises too, but the overall thing is that she still needs support to do these things at this time. Speech is a big concern of ours since that is what Jenny wants the most. We will try speech therapy again and see what happens. Finally, Jenny was lowered in her meds again and she is doing quite well. She is always so happy to see another med dose go away.

Jenny’s progress keeps improving, but she has a few set backs every now and then. Earlier in the week, Jenny was suffering from horrible pelvic contractions/spasms that turned out to be related to a blocked catheter. Once the problem was discovered, she went back to normal. It brought back the memories of her earlier times at the hospital and it was difficult to see because there is so little I can do to help with this pain. Jenny has been able to interact with family by way of video over the internet. Previously, we put the phone to her ear and someone had to listen and tell the speaker when Jenny blinked “yes” and “no”. Now, Jenny can nod to to answer questions and has more of a feeling of independence. Plus, she is able to see people like her new nephew in something other than a still picture. Technology sure has made life more enjoyable for her and I imagine than 5-10 years ago that many things she is able to do would not have been available- which gives hope for what will come in the next 5-10 years.