Wow I haven't posted in days...totally not the norm, ey? Today Danny and I had to head back down the Milwaukee for some more follow up appts. The day went well! First he saw the Eye doctor and nothing has change with Danny's eyes or dynamics of his eye. Both his optical nerves are gray which means they are damaged and/or dead but that is nothing new and he still has and always will have Cortical vision Impairment, which means his brain can NOT process what he sees. Danny is legally blind but can still see......He sees color and light , but doesn't get into the details of things. Every day, hour, minute is different with him and his sight....At times I think he can REALLY see but then it's gone. I guess this is a familiar trait with CVI.
Then we went to see the Rehab doctor. He says Danny looks great and I am doing a WONDERFUL job giving Danny a quality of life. He did comment on how loose Danny's tone is, so I informed him that we turned up the baclofen pump to help keep his tone low. After another political battle with who could adjust the pump (it was implanted in Milwaukee but because of convenience for us we have Danny's Neuro maintain it in the Valley) cuz it was a it's not my pump yada yada yada.....But after contacting his Neuro in the Valley and getting his approval they went ahead while I was there and turned it back down in hopes to give him some more tone to work with. Thanks for helping Danny out....some doctors are really in it to HELP with what is in the best interest for the KIDS, and others well..... We try not to deal with them. After going over all that we are doing and have done the Rehab doc pretty much said he wasn't going to need to follow Danny any longer on an ongoing basis. If we need anything authorized or if we have any questions to give him a call but other then that Danny is good to go. Wow one specialist off the list!
Tomorrow the kids have to go to the dentist. Danny is just an exam (he hasn't had his teeth cleaned yet) to make sure everything looks ok in his mouth. Avrianna has 2 cavities and then they are going to seal her teeth.....So for any of you in a 30 miles radius the screaming at 1:45 is Avrianna. She so hates needles !! I haven't even told her yet as she would already be uncontrollably upset. Last cavity didn't go very well and the dentist even got really sturn with her, not sure how the feel about that???? I am going to give them another try and we'll see if this is any smoother for everyone involved. If not I think I'm going to have to look else where for a new dentist. I will post tomorrow with the results, wish us luck!
Also tomorrow morning Danny has an eval being done here at the house for about 2 hours with the Assistive Tech women for the school district. I am so excited to see and hear about her ideas and ways to help Danny communicate and be apart of his world.
Well need to hit the hay. Sweet dreams to all!
Where Are You Christmas?
1 day ago