Monday, September 5, 2011

First Day of Home Bound Preschool & Media Transition

As we mentioned in our last update, finding the time to update has become incredibly challenging. We also are having some challenges in sharing things such as photos and videos. Sites we have been using have gone out of business or made changes that make them ineffective, difficult or useless. We have been exploring some options and trying to find those that compliment our mobile sharing needs - since 85% of our sharing happens on the go or at a time when getting to the computer is impossible for unforeseen future. So if you have already noticed that stuff is spread out on several sites, fear not - we are going to pare that down shortly. Thanks for bearing with us through this transition. This truly is a wonderful age we are living in with the ability to stay so connected.

Little Ham in his 1st day of school outfit
Moving on to Elias! He has been a busy little fella. Last Wednesday was his very first day of home bound pre-school. Mommy had a cute little outfit picked out for the occasion, a huge milestone, even if it is just here at home! He was meeting with his speech therapist. Elias slept right through the session despite our efforts to wake him. Unfortunately the time was 3:15 in the afternoon, prime nap time for him. We had warned this would be an issue. She wants to try again next week at the same time to see what happens. If we need to change the time we will. It will likely be changed as he does much better earlier. The session was not a complete wash though. We spent the time updating what he has accomplished and the changes that have occurred over the summer. She was happy to hear of his communication progress, particularly with gestures. He is becoming quite versed in that method and it has become his primary source of communicating. At this point she is the only one that has contacted us to begin, but we should be hearing from all the others working with him in the next few weeks.

Medically, Elias is still doing fair. We had IVIG again on Friday because his IGG levels are so low. We will find out this week just how often we will have to go for this. They still are unsure why those levels are dropping. Elias was having fun though before the infusion began. Here is a quick video of Elias! jumping on the bed in day hospital. His adjusting to the medicine seems to be going well. The B-6 vitamin also seems to be having a positive impact limiting some of the more severe side effects, at least in occurring as often. The medicine for the adrenal issue also is having a positive impact on his energy level, he is able to sustain more. We are still coming up on a few follow-ups and waiting to see a few new doctors to try and help with various components. Overall, we can say that given the circumstances and all the changes Elias is doing pretty good. Thank you all for continuing to keep Elias in your thoughts and prayers.

One final thought/question - What would everyone think about occasional audio updates? It is something we are exploring as an option to bridge the gap between updates when it is impossible to do so. It gets more difficult the longer it is between updates. Leave us a comment below or click the contact us banner to the left and give us your thoughts.



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We appreciate you reading and following Elias' journey.