Julian: almost 4

I realize that I have not been updating Julian's blog, and I'm very sorry to everyone who cares and follows.  This last 7 months have been very hard on me, and I guess I just let this blog go by the wayside. 

Julian is under care of a physician at Cleveland Clinic, Dr. Cohen.  Both Ryan and I really like him.  Right now it does seem like we are at a stand still there. Julian has had a repeat EEG, that showed some slower waves at the upperback part of his brain, which is considered 'normal'.  He does have two abnormal chromosomes, one of which I have as well (they did studies on both Ryan and I of our DNA).  They just took my blood again (Cleveland Clinic is trying to redo somethings 'their' way and some extra tests), and we should be getting a call this coming Monday to make a follow up appointment for that. 

Julian just started his 'new school year'.  He has a speech therapist and a teacher.  His teacher is most likely going to have to see Ryan at his moms, because of my classes.  His speech therapist will see him at my house.  The speech therapist (Sue) came yesterday, and I really liked her, as did the kids.  Penny, the teacher, seemed really nice when I talked to her for quite sometime today.  I don't really like that I'm not going to be there, but for this semester it will have to work.  She's going to keep me in the loop though, and I'm going to try and relay everything here for you all too.

Julian has a slew of specialist appointments coming up; from an eye appointment, his geneticist, and his new gastroenterologist.  We have a 'new' one because 1.) Both Ryan and I really didn't like that each appointment was very short and always the same thing and 2.) an appointment was missed and they felt they had to 'review' whether or not they'd see Julian again.  So, during an appointment with his regular pediatrician, I asked for another referral to a new gastroenterologist, and made an appointment.  We'll see how that goes.  Before the new doctor though, Julian had the repeat endoscopy and colonoscopy, and was then diagnosed with Celiac Disease (as my mother suggested 2 years ago).  I'm not so sure about that diagnosis, mainly because the treatment is gluten free, and that seems to make him worse.  Since everyone and all the research shows that that lifestyle is the only help, it doesn't seem to me like that's what he has.  It's very frustrating. 

As far as behavior goes, Julian seems to be more aware that he can't communicate with us.  He is trying more as far as gestures, but that seems to frustrate him more.  The new speech therapist is going to try and get him a speech device, and that would be wonderful!  I can't wait!  I hope it goes through and makes the difference that I hope it does!  Julian has also been a little more irritable and more 'autistic' tendencies.  I am not sure if it has to do with his symptoms and condition, or if it is response to all of 'this'.  'This' meaning the way our lives are now and all the uncertainty.  I try to keep it all away from him, and I'm sure his dad (Ryan) does to, but I am also not naive enough to suggest he doesn't know.  I know he does, as does his sister.  They miss their family.  Julian especially I think, because he wants to look at his older sister and brother's pictures more often and seems to want me to talk about them more for the last 3months or so. 

Julian hasn't been eating very well.  I swear he lives on pepporonni and cheese and fruits some days.  He complains that his stomach hurts all the time, and he is now saying his left eye hurts all the time (pointing to it and saying 'aww' is what I mean by saying something hurts).

We go to the YMCA, and Julian LOVES it.  He swims with his swimmers all by himself, and hardly wants my help at all.  He loves the play room, and the 'Adventure Land' that they have.  My mom took him to Chuck E. Cheese (and his sister of course!) and now he wants to go all the time.  He LOVED it.  I had to help him into the play area at least 10 times ( I was tired!) and he loved all the new games they have there.  I'm hoping to have a joint party for him and his sister for them turning 4 and 3 there. 

All in all, Julian is okay.  He  hasn't been sick (more than a cold or so) in a very long time!  That's good!