Playing Catch-up with Updates

Our apologies for not getting more updates up the past few weeks. I suppose we were able to get some great photos up so hopefully that made up for the absence. There are a few items to bring everyone up to speed. We will start with a colorectal update. We continue with our twice daily dilatations. We just began the third week which also equals the third upsizing. We have five more weeks of upsizing then we continue the process for the next six to nine months slowly tapering the frequency it is performed. We will likely be scheduling his colostomy reversal soon, which can take place anytime after mid-September. Even after three weeks, the process of doing the dilatations is not getting any easier, in fact it is actually pretty upsetting. We have found the need to adjust his schedule a little to accommodate getting these done. That hasn’t been too bad. Yesterday we increased the gauge as we do each week and it was difficult to pass the first time and it was a little on the bloody side, something we have not really had to contend with so far. Fortunately that seems to be isolated to the first passing. Even more importantly is that Elias is dealing with this better than we imagined. Yes he is pretty upset, fights and cries to the point where it just breaks your heart, but he recovers quickly from the undesirable procedure. No parent should have to inflict pain on their child. We just keep reminding ourselves it is for his benefit & quality of life. The surgical site, as it were, is healing well and Elias is beginning to get his mojo back and his daredevil attitude.



Let’s see, last week was our 6 month IFSP review and goal setting meeting for his early intervention with his therapists. Elias did well meeting all the goals we set that were not impaired by things out of his control. For example we had a goal that Elias would be emerging with vocalization and 10 words, but that was in January when we thought the BAHA would work. That obviously is not within his control. All of the therapist gave very positive reports for his progression and accomplishments given that he was also hospitalized three times one of which was for major surgery. Probably the biggest accomplishment is that Elias has started to take steps with the aid of a walking toy. He is not able to do it alone completely yet, but we generally just keep the toy from rolling too fast as Elias tends to GO! No shock there I’m sure from anyone. He is attempting to stand on his own without holding on to anything. We also have brought in the assistive technology pros to help Elias with communication devices until we can get into the high-tech AT program at Children’s. Our referral is processing, but there is a lengthy wait to get in. We got a chance to see some really cool devices most of which were not effective because they rely on sound to attract the child’s attention. We ended up with two items to begin. One is a switch toy as they are called. These are toys controlled by pressing or holding a switch to make the device work or turn on, which there are several different styles. Elias seems to work a medium sized button switch. It kind of looks like the Staples “easy button.” It is attached to a desk fan that is adapted to work with this switch. The reward for Elias is when he presses and holds the switch the fan goes. When he releases the fan stops. He LOVES this toy. He has even already figures out how to push it with the side of his body so he can play with the foam soft blades while they spin. He laughs and laughs. So how does this help him communicate? The toys teach them the concept of cause & effect when they use the switches which are implemented with actual communication devices. So by playing he gets the concept which he will need for other devices. We also have one that is a simple looking black tray. We have been using photos of his favorites toys and items for him to use to tell us which he wants. This tray takes that concept and elevates it. The photos sit in one of four slots. The photos are sitting on a switch that causes a light to shine on the photo Elias presses. You also record what the item is so that is gives us an audio cue and Elias a visual so that he could press that without our attention and it would be like him telling us I want my teddy bear or toy. These are strategies we are using with his speech therapist. It was an interesting and eye opening experience, in a positive way, to go through this evaluation for these assistive devices. Overall Elias is still exceeding everyone’s expectations. This has turned out to be a quite lengthy update so we will leave it at that for now. We update later or tomorrow on the initial Aural Rehab session.