Noah has not had his surgery yet (adnoids out and ear tubes put in) because we are having "insurance issues." His surgery is on hold for a month or two until we can get reviewed again and try to have his Medicaid reinstated. (ARGH!) But on the up side, he is doing great!
He started with a new speech therapist two weeks ago and continues to make strides in that area. Everyone told me he would become more verbal when he began using sign language (ASL) and he has! He has many more words now than signs and continues to try to repeat anything we ask him to! We are currently working on "B" words.
Noah is also making great strides in physical therapy. He is working hard to stand alone and supports 80% of his weight when he is walking. He still has to have some support and usually gets that support in the form of holding someone's hand. He is not using his walker right now because he pushes into the walker while trying to walk with it. He will usually gets going to fast then and his feet end up going faster than they really should.
We are still feeding him through his MIC-KEY button (feeding port) at night for weight gain. He is beginning to feed himself again and loves trying new foods. He is also still gaining weight which is good. He must be able to gain weight and continue oral feeds before we can transition him off the feeding tube. We see the nutrionist again on September 3rd and will hopefully get good news about starting to wean him off the night feeds.
We also see the urologist for a one-year check up on Septemeber 3rd. Noah saw him last spring (2001) a week before the same urologist diagnosed Sammie with ARPKD. I'm sure tomorrow will be an emotional time as we have not been in to see that doctor since the diagnosis and Sammie was born. Please remember us tomorrow as we see him.
Noah's school is relocating and begins in a temporary facility on September 3rd. We will not be going until the 4th due to the nutrition and urology appointments, however. They are now on the campus of a high school in a true inclusion program where we will be sharing a facility with the children of teens attending that high school. A building is being renovated for us on the property and we will be moving into that one as soon as it is ready.
We love you all!
Jason, Dawn and Noah
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