Thursday, November 11, 2010

The boy's news.

A medical update on our's been relatively smooth sailing. He's on TPN 24hrs a day and feeling good. His PICC line looks great and is holding it's own against the constant use. Other than a few labs that have been a bit wacky and requiring the TPN to be adjusted accordingly, all has been somewhat quiet and manageable.

He did have a urodynamics study completed this week and the doctor was pleased with how everything looked. We've noticed a very positive difference with his output and the amount that he has to work to actually 'produce' urine since starting TPN. We talked with the urologist about it and he agreed that he didn't see the same pattern as he was showing previously, which is great, but he didn't have a good explanation for it either. The only thing that makes sense in our "parents of Wyatt" medical curriculum would be that we took away the stressor of making his GI tract 'perform', which is alleviating some energy that can be used elsewhere in his body. Thus we see improvement in areas that were once struggling prior to starting TPN. It makes us. After all, this is how Wyatt's body functions from day to day. It appears to have learned to prioritize in the way of what gets first dibs on the available energy. It can be quite clear to those who are with him on a regular/semi regular basis. Though, we wish a certain couple of his doctors would even acknowledge this obvious way that his body functions.

Throughout the day Wyatt has really started to enjoy reading books during his down time. His favorite right now is the Marvin Redpost series. This makes me so happy...he's reading for enjoyment! He's also taken a liking to drawing. (!!!) Which was something that he never had the energy or patience to do prior to this change in our structure. So cool and great fine motor work! During the school week one of his teachers comes to our home for 90 minutes twice a week and is working 1:1 with him. While the other days we fill in with the additional work that needs to be completed. Meanwhile, the school is diligently working to get the other supports in place that were discussed during the recent IEP meeting. Including the video streaming system (think Skype) that they are trying to prepare in order to bring the classroom into our home via Wyatt's laptop. He's very excited about seeing his class/classroom through his computer while at home! I have to say, we're all a bit excited to see how this will work.

There are several appointments on the horizon, along with the 2nd grade field trip to the Aquarium that we're tagging along on. I'll be sure to update about each and the happenings in between.

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1 comment:

  1. I am so happy that Wyatt is doing so well with his TPN! just proof that it's jsut what he needed! I hope he continues to do well :)