In case you are wondering... I am still alive! We have been living in a state of utter chaos for the last week. Our house is about 3/4 way done with the repaint. It's been a long week, but the end is in sight. We should be back to normal by saturday night. It's so exciting and well worth the work to see such a dramatic change in our house. I will be posting pictures soon!
And now for another update with Josh. He had his official initial evaluation into the Dyphasia Clinic, or better known as a feeding disorder clinic, yesterday at Primary Children's Medical Center. It went well and he was an angel as usual. We found out that if he continues on his path he is on now... we could end up with a NG tube (tube feeding) if he can't start to gain weight. We are going to add something called 'coconut milk' to his formula that will give him added calories. I had to take a food journal with me down there and they guessed his daily average of calorie intake is only 576. Way under par. So we hope to add more high calories to his food, not attempt to make him take more amount of food, since it won't happen anyway. He is going to also start a medicine that will increase his appetite. We are going to get a 'bowel program' going (ever heard of that???) and added some more meds for that as well. He is also going to start working with another Occupational Therapist who specializes in Sensory eating problems. I hope that is only once a month for that. He currently has a speech, physical and occupational therapist working with him.. each twice a month as well as his weekly group therapy. So we are busy, busy! His new OT will be in Bountiful which makes it a 40 min drive to get there.
So other than that, we just had lot's of medical personel helping us with all this yesterday. One thing that was said by every single dr, therapist, nurse, psychologist there was that sensory problems are not an easy thing to work with. We need to be extrememly patient and know that there is no time frame for when we can expect progress with him. He will continue to be on a bottle for the foreseeable future and not to worry about what other people think about that.
So we will just get all this up and going and see the Dysphasia Clinic Team in May. So (knock on wood) we don't have to go back to Primary's for 3 months!
1 week ago