Wednesday, April 25, 2012


Well, I have to say that the decisions I have to make regarding Ayden Jane are not nearly as hard as some of my friends with special needs kids.  School is awesome so no decisions to make there.  IEP is done and therapies in place.

As a bonus, Ayden Jane loves her 3 therapists!  Mrs. Jen (PT) has been a long time favorite.  She has been working with Ayden Jane since she was 5 months old.  Mrs. Rodgers is the school based ST and has had Ayden Jane for basically 2 school years.  We just added Mrs. Stella (OT) and Ayden Jane really likes her.  Oh, and I can't forget Mrs. Rona who runs the Hugs for Horses program where Ayden Jane rides weekly.  So, she has 4 'therapies' per week of about 45 min. to an hour.  That will be the set up for next school year.  We take a break through the summer from the school based therapies - ST and OT.  Definitely filing that time with swimming!

Supplements are a big source of stress and decisions making.  Well, not so much stress as just plain work.  I tend to over research (if that's real thing) so I understand the why's... of everything I give her.  That being said, her response to things is not at all predictable!  I feel like I spend my day analyzing everything she does when I am playing with the her supplements.  It is a bit exhausting trying to watch, take notes, decide what is significant...  Then I need to sort out what is helping with what... Should I go up slightly or down or are we good....  I would say that right now I am dealing with this with the B-12.  I think it is somewhat over done at the moment, but history tells me that sometimes it just takes her time to use new superpowers.  So, should I back off, or give her time?  Some days I change my opinion a hundred times!

The other thing Gary and I have decided is to make a follow up appointment with Dr. S.  She is an allergist/immunologist we saw a while back when AJ had the nasty infection.  I really liked her and since there is a primary care pediatrician group that shares the office with her, I am thinking it may be a good fit.  I just think that this crazy high eosinophil thing is a piece that indicates we will be fighting sinus stuff every year.  Not sure she can get to the bottom of it, but thinking that she will be more helpful in treating it...

Next up?  We are a part of 2 research studies.  One of them is expanding and requires time in Bethesda MD at the NIH.  How do we do 'all we can to help' without over doing.

Other little things like is it time to do scoliosis x-rays, eye checks...

At least she is back to energetic and quick and goofy and happy.  The rest I will work out over time.


  1. So you guys are going to do the NIH thing? Bob is hesitant because of the "stay" part, but I don't want to pass this up...

  2. I haven't responded to them yet. I really want to do it, but a couple of the things are repeats from Dr. Miller's sibling study so I need to sort out (probably with Dr. Miller) anything I want to skip. It shouldn't be much. Also, it is a heck of a trip for us...