This is a child who had a gross-motor delay at 18 months old...I'd say that he has made up for lost time in that area!
I recently took Connor back to his Infectious Disease specialist, who is the dr managing his Primary Immune Deficiency. His lab work showed very similar results as the last times we've checked his immune function, he still has a t-cell deficit which puts him at increased risk of viran and fungal infections (and secondary bacterial infections). But the good news is, his t-cell function appears normal. So basically he doesn't have enough of an immune system, but what he does have, works like it's supposed to. This type of immune deficiency allows him to "learn", in other words, most kids need to be exposed to an illness once or twice and they'll develop immunity to it. Connor has to be exposed numerous times, but he does eventually develop proper immunity. So although he will always have a t-cell deficit, he will appear to "grow out of" his immune deficiency as he ages.
His labs did show an IgM deficiency that has never been there before, for now we're assuming that it was a one time test anomaly, but we'll be watching to see what it does.
Connor ages out of Early Intervention on March 3rd when he turns 3 years old, and he transfers to public schools and will receive services and therapies through an IEP (Individualized Education Plan). We have started the transition process (which includes a lot of testing and gathering of records, etc). Our local school can not handle Connor's needs, but we found a school in a neighboring distric that has a full time sign language interpreter in the classroom, as well as 4 other hearing impaired kids. I visited the school and was VERY impressed with the program! Connor will get full time verbal and full time sign in this classroom! He will be with kids just like him, who are trying to learn to be verbal, but for now rely on sign. I have no doubt that it is the best environment for him, that in any other environment he will have more delays, not just in his speech development, but more important in his social/emotional development. My number one goal for him in preschool is for it to be a positive experience for him so he learns to like school. If he is effected by the learning disabilities that are so prevalent in his syndrome, then I want to set the stage now. I want to set him up for success, rather than failure.
We'll find out all the details over the next few weeks about sending him to this out of district school. Wish us luck!!
I have more to talk about...but currently have two children sitting in my lap, which is rather challenging to type!!! I'll be back later with more pictures, too!
So life is good, as it always has been and hopefully always will be! Each day brings its new challenges, and we're continuing to do our best to trudge through them.
One thing Connor was NOT oblivious to was the snow!! Although he could hardly move in his snowsuit, he really liked playing outside! 
As did Ian...and at nearly 5 years old, he is now old enough to really have fun outside, digging in the snow, making snow angels, sledding, throwing snowballs. He even jumped on my mom's trampoline in his snow boots! 
Look at the fun they had ruding on a toboggon behind the 4-wheeler!! 
Found his tongue!
Laughing at daddy!
The world is a hilarious place to a 6 week old!
Here he's looking at one of the dogs who was standing just out of the camera's view.
He was laughing at Ian here!
He can't figure out his eyes yet, he tries to focus on something, then they cross, and they often get "stuck" like this! Jim says he's tempted to smack the side of his head to "unstuck" his eyes (joking, people, of course we won't hit our baby!!)
With your tongue you can feel the roof of your mouth (your hard palate) and if you reach back far enough (hoe you're not tongue-tied!) you can feel where the bone ends and the soft palate begins. Connor's hard palate is structurally normal, although is rather narrow and very high/arched. His soft palate, though, has never functioned correctly. We've known this since he was 4 weeks old and had his first swallow study. 
And here's a drawing illustrating it:
The bifid uvula is not a problem in and of itself, it's just a possible sign of a larger problem. Connor's uvula has always appeared normal, but today he was crying when they were looking in his mouth, and every time he inhaled, his uvula took on a slight bifid appearance. Here's why him crying was significant...here's a picture of the anatomy in the mouth (side view):
See how behind the soft palate is the back wall of the throat, and where it connects to the nasal passageways? When you inhale through your nose, the soft palate is relaxed to allow air to pass through your nose into your lungs. When you inhale through your mouth (or exhale through your mouth, as pictured here) the soft palate is supposed to close the back of the throat so the air goes only down (or up), and not also out your nose. The same thing is supposed to happen when you swallow (so food doesn't come out of your nose) and when you speak. Here's an illustration of that, the first picture shows the soft palate closing correctly so speech sounds only come out of the mouth, the second picture shows the soft palate closing incorrectly so sounds are coming out of both the nose and the mouth (see the arrows?):
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