Friday, July 9, 2010

What A Week

It has been one crazy week! It began with Elias dropping his oxygen sats overnight Sunday leading into several instances where he would stop breathing. Fortunately, those episodes were short lived and few in number not continuing beyond Monday. Then we had a jam packed schedule of therapies and assessments. Most notably was an assistive technology assessment through the state’s early intervention program to bridge the gap until we get into the high-tech, cutting edge center @ Children’s, which could take months. We tried several things to get a feel for what might capture Elias attention and interest. The goal is to use these items to create a total communication system for him. The process was different than we expected and we will have to wait until next week to hear the final recommendations. Then we had an impromptu visit to the FA clinic because of central line issues. Elias had developed some very ugly blistery looking spots around the entry sight. Elias was not running a fever or acting sick so we did not think it was another infection which it turns out to be a heat related effect and Elias sweating. We have switched temporarily to a different type of dressing which has a more frequent change protocol of every other day, versus once a week. Hopefully in a week or two this will resolve and we can get back to the standard dressing. We were thankful it was not anything more serious, but you have to be extra careful with these central lines as things can go very bad very quick. Also this week we have seen some improvement and interest from Elias towards using his push toys to work on walking. He is doing very well with that. Of course he needs our help pushing, but he is getting better doing that on his own, but more importantly is how he is moving his feet. That he is doing very well. Once he gets the balance and standing without support walking will be coming out very quickly.  It has been wonderful to watch and Elias has such a prideful look on his face as he does this. He really is enjoying it. So much that when you stop he gets fussy and starts signing “more” frantically. Which is another positive from Elias developmentally. He is using that sign more and more and he is learning the power it has!  It is very cute to see! So you can see we have had quite a week in terms of lows, highs, stress and joy! The joy Elias brings makes the other at least a touch more tolerable. Enjoy the weekend!

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