This may be the most pitiful pic ever. I wouldnt even have posted this but Nathan was so dramatic today. Drama wears him out along with too much water park yesterday. We have a long way to go to get him back in fighting shape and the vision of the stamina and strength from early June is even farther away. I am seeing progress every day both physically from the hiccups of the past couple of months as well as his brain rewiring. He had an ok day of therapy until we tried the new custom shoulder orthotic. That is going to need some tweaking because Nathan absolutely will not wear it as it is and I will need to hire some help daily to get him in it. Well we had set some goals and putting 2 words together was one of them. Nathans favorite word, No, has been replaced with No Way. I learned something new today as Nathan hopped off the swing and spit out a couple of new words. The swinging and vestibular stimulation helps him talk. I am really thinking that the SPIO suit in combo with the swing system is going to significantly improve therapy especially speech. We are going to start incorporating IPad apps with the swinging. Mrs. Nikki says the more systems we activate at one time or as much as he can tolerate, the faster the rewire and improved brain function will go. I am anxious to see what Ms. Alison Moore & Mrs. Heather Phillips Austin can do with this possible new key to possibly get his brain learning and if they will be able to teach me practical application. This trip to Duke is solely me learning some new ideas to take home so his therapists at home have a starting point and can teach me how to apply this to daily life. It of most importance that we figure out some kind of communication with Nathan. Communication would have been most helpful the past few months on the drug. I have so much hope for the behavior therapy at Growing Minds. What he needs more than anything is about 4 months that he feels good all in a row, that is the missing piece. All the progress he made in April and May is just gone, I am thankful that we had him in such good shape going into that low heart rate whatever 7 week thing because I dont think he would have been walking by this point had we not. Looking back, I should have never brought him home after that scary MRI, we should have stayed here. Believe it or not, I think Nathan was in worse shape and sicker these past couple months than he has been in a very, very long time. Thank you all for your thoughts and prayers. Aunt Sis will be flying home Sunday so we will be lonely until we get our plan and routine going. Maybe a couple of days to rest too. Hugs and kisses from NC.
Posted on: Fri, 08 Aug 2014 23:34:43 +0000