I have been contemplating posting about this whole subject for the last hour.. Most all of everyone knows all of the challenges that Deacon has faced and still faces daily. Although he is doing well in SOME areas he is doing TERRIBLE in others. Simply because a baby gains some weight and LOOKS great (which he does compared to what he did look like) doesnt mean that everything is fine and dandy, and that there still arent MAJOR issues being dealt with. Just saying. I dont like being negative because everyone knows how positive I have ALWAYS been when it comes to Deacon and what the doctors have said. So just throwing that out there before I move on to the latest news... So Deacon is getting Occupational and Physical Therapies HEAVILY. THREE times PER WEEK! Today he had his first REAL occupational visit and it did not go well at all. Things are a lot worse than I had anticipated. Deacons palate is EXTREMELY high, so high that its considered a birth defect and the occupational therapist says that this is going to cause his long term problems with eating. He also does not suck properly at all.. I could go into all the fine details about it all but most probably wouldnt understand all the medical lingo. Lets just say he has always done it way wrong and continues to do it WAY wrong...The OT said that Deacon is one of the worst cases that she has ever had, and she has been doing this for many years.. He is also having sensory issues as well. He has a LONG way to go. We were originally told and thought that he would only be needing the G tube for a few years. However after talking with her today it will most likely but much longer. Mouth movement and sucking is a part of development, the fact that he doesnt have the proper skills that he should have can affect him in other areas of development, like talking for an example. Tomorrow we have PT with his new therapist so we will see what she has to say. Although he has been having PT regularly she is the one that is really going to access his progress. Which when they came to just meet him last week she was concerned about a number of things that that he was/was not doing. Thank you all for your MANY prayers over the last 7 (ALMOST 8) months. Deacon has overcome ALOT and I know that he will overcome these things as best he can. I accept him the way he is, or the way that he will be no matter what. I just really want big and GREAT things for him. Its hard as a mother to really have to picture the fact that your child may not be like other children or what society calls normal. Just please keep praying for him and for me to be able to remain strong FOR him!
Posted on: Tue, 29 Oct 2013 19:49:09 +0000
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