Our Mayo appointments.

It is nice to be back home - we had appointments at Mayo yesterday and I must say I do have some favorite doctors and some I would rather not have to see. I think all doctors should rent a child with extreme needs for one week to put themselves in our shoes. Some of the doctors that we see with our son Brextin have no bedside manner - they do not think before they speak or do not focus on the positive. This is how our day went yesterday.

We saw an eye doctor - first off we saw this lady who did some tracking exercises - with this strange toy - I was amazed that he was watching it and actually reaching for it - she had very little to say - she was very unsociable - then we got sent to a waiting room - where we waited for at least 45 minutes then we got to see the eye doctor. He talked to us a little bit and turned on some remote control animals that were attached to the wall - in hopes that Brextin would look and be interested - I was amazed - he actually looked - only for a couple of seconds - but he still looked - the doctor thought he didn't look longer because of his place in his development (which is delayed) - he wanted to do a better exam so he placed drops in his eyes and sent us back to the waiting room. We sat there for another 25 minutes - we then went back into the room where he checked his eyes - he mentioned to us he thinks that the glasses that Brextin is wearing is to strong and are useless to even wear (we actually got the glasses from a Dr. in Hudson WI) He strongly advised us not to even put glasses on him - because nothing would be able to improve his vision - he told us he was legally blind and that was it. I had asked if we could get a vision therapy script and he strongly is against vision therapy - which just irks me - it is a proven fact that vision therapy does improve with children with CVI - which Brextin has - he claims he is unable to really do much for Brex until he is able to tell him what he can and not see - well well well - why is it that I often see other special children wearing glasses - not all special children are capable of communicating to eye doctors what they can and can not see -

This is the exact reason why I sought out the eye doctor in Hudson WI -I need a doctor with my best interest for my son's eyes - I strongly feel we need to teach Brextin how to use the eye vision that he currently does have and strongly encourage vision therapy -

So we moved onto the second visit - which was a hearing test - he just woke up for a nap which meant he wasn't all that alert - we were placed in a sound proof room - where a lady said his name from a speaker in the wall - in hopes that Brextin would turn to the sound - then she tired a different speaker on the opposite wall - needless to say - Brextin just sat on my lap - unamused. She then looked into his ears to check on his tubes - she said he had 1.5 hearing in one ear and 1.7 in the other ear - I myself - really am unsure what that even means -

We would return to this appointment to see the ear doctor later in the day - we then went to the doctor to help with his foot braces - he is a therapy Doctor - he of course started out asking us silly questions - can you son wave? can your son dress himself? when of course all he needed to do was look at his chart and know that our son is severely delayed - he then luckily went to focus on the real reason why were there - which was for the braces -currently Brextin wears braces that go up his calf and he doesn't believe that is really necessary - so he wrote a script to get new braces - plus he feels as if the current ones are not tight enough and are actually not doing what they are suppose to be doing. I need to fax the script to our insurance company in hopes they will cover the braces.

We then headed to see his neuro doctor - I really like this doctor - he always focuses on what he is doing - and not on what he isn't - the fact is - Brextin is improving - just on his own schedule and not ours. The main reason why we visited with this doctor was to see if he would lessen the amount of seizures meds - and I am proud to say - he agreed - we are able to give him 25mg less each day for two weeks and then will contact him again about going further or if we need to go back up - it all depends on if Brextin has an increase in seizures - I really do not like the drug Topamax - many doctors call it Dopamax - because it places the children into a daze - He was able to write another script promoting therapy 3 times a week for 60 minute sessions - they might be needed since we switched insurance companies as of the first of July -

Switching insurance companies is a whole another blog - our son was getting 30 sessions of OT, PT, and ST a piece and now the new company - Group Health will only give us 40 sessions combined and they actually do not offer speech at my son's age - but at this time they claim they are working things out and I am crossing my fingers that my son will continue to get his needed therapy.

We then headed back to the ear/nose/throat doctor - she looked at his tubes and said everything looks great - since he is beginning to snore - she was concerned on his tonsils - but at this time they do not look enlarged - however she wants to continue to check his progress so we will see her again in October.

Our appointments finally ended around 5:00 and we headed for pizza in Nelson at the Stone Barn.