Rare, Precious, and Special

So I like to talk ... a lot. And right now I have a lot I want to talk about. Only maybe not really talk about so much, as tell  about. I want to tell about my precious and special little boy so people will understand him and want to get to know him. All Children are precious and special, but sometimes a little bit more rare, precious and special child is sent to us.

Reese was born on June 15th 2011. Everything was fine and normal with him. Everything had been fine and normal with the entire pregnancy and delivery . I noticed he had some excess phlegm in his throat, but that too seemed "normal" considering the conditions a newborn baby just comes from. Over the next few days the phlegm persisted, but didn't seem to be too bad. The nurses had even noticed it, and made sure to tell me to keep him propped up at an angle while he was lying down or sleeping.
So we went home, with everything being fine and normal. Over the next few months the excess phlegm stayed, but never caused too much of a problem. I chalked it up to allergies, and didn't worry to much about it because no one else seemed to. Even though it did get a little annoying, Reesie seemed to deal with it fine.
Around 3 months of age we started noticing Reese didn't see very well. He wouldn't focus on anything and just kind of looked right through you even if you were standing directly in front of him. So at his 4 month doctor check up I brought this up. The pediatrician noticed it too, but he was still pretty young, and sometimes the eyesight didn't develop as quickly in infants. Soooooo, no biggie.
His hearing was good, in fact it was quite obvious he followed sounds and noise very well. As long as you made a noise to let him know you were there, he'd whip his head right around to look at you. And he became very accustomed to familiar voices, smiling and cooing if it was someone he knew well.

About this time he started leaning his head severely to the right. No matter how many times I adjusted and straightened it, he would bring it right back to his right side. It became pretty bad, to the point I was afraid he may be doing (or have already) damage to his neck muscles. So back to the pediatrician at about 5 months. After a thorough exam, the doctor decided that his neck muscles were pretty weak on the right side, and to continue doing what I was, trying to straighten it as much as possible, as well as watch closely and have it checked again at his 6 month appointment.
No biggie, again. These were all things that while not completely normal, didn't raise too many alarming flags.
So the 6 month appointment fell right around the holiday times. And we were VERY busy. Needless to say, I was a normal mother, and did not get him in right on time. I was keeping up on his weak muscles though.
I got him in to see a chiropractor as well as contacted a local group for developmentally delayed children.
As he was clearly delayed. By 6 months he wasn't sitting at all, not even when supported a little, and his eye sight was still ..... not good. He wasn't holding his head up at all when placed on his stomach either, and in fact HATED to be on his stomach for even a couple of seconds. Most typical children would be doing these things, or almost doing them, plus a little more by 6 months. (I say most because I know not every child does. Every kid develops at their own rate and blah blah blah. Ya I know, my point is, it was apparent now that something was not right, or close to typical with him)

We had also taken Reese to an ophthalmologist to have his eyes checked. The ophthalmologist said "yes, there is something wrong with his eyesight, and it looks like there may be something behind the lens of the left eye, although I'm not sure, because he won't hold still."
Reesie was NOT a very compliant patient. But really what did I expect. This was not a pediatric ophthalmologist, so he was used to his patients holding still. Plus he had put that stinging solution in his eyes to make them as huge as saucers as well as some tortuous looking contraption that held his eyelids very wide apart. He got us an appoint with the Moran Eye Center (the specialty eye clinic in our state) .... for 3 months down the road!! Apparently he didn't have much pull with them.
So ..... what was this "thing" that he may or may not have in his eye? No one could tell us. That was kind of frustrating. Although the pediatrician did mention doing an MRI if more developmental progress wasn't made within a month or so.
On to the chiropractor (who has been AMAZING by the way). He didn't feel comfortable working on Reese without knowing what this vision impairment may or may not be. Because we had traveled quite a ways to see him, he called in a few favors and got us in to see a pediatric opthamologist who was a friend of his THAT DAY! :)
We did that, found out his eyes and the nerves around and behind them were perfectly formed. There were NO obstructions at all. And many children who had this eyesight problem, was because of a simple developmental delay. Consequently, the not being able to see very well, made perfect sense as to why he was also possibly delayed in other areas too.
So we continued happily along to the chiropractor, who adjusted him, mentioned it looked like he may have a mild case of scoliosis, which he could help immensely with regular chiropractic visits. And miraculously enough, his eyesight improved noticeably after that first chiropractic adjustment.
We were quite happy with all of these diagnoses.

So along came January and month and a half late checkup. Reese was 7 1/2 months old by this time.
After checking him over and hearing the other diagnoses, his pediatrician was more adamant about doing an MRI. As Reese still hadn't had any developmental milestones. I brushed it off a little and said the ophthalmologist wanted to see him again in 3 months and if his eyesight wasn't significantly better, then do additional testing, including and MRI. The pediatrician told me (albeit a little begrudgingly) if I really wanted to wait 3 more months, to see if any progression was made, that was my choice. We finally agreed on giving him another month to see if he progressed at all.
Later that week Reese had his first appointment with a physical therapist from the developmental group I had signed him up with.
Her assessment was that something was neurologically wrong, and we should get him to a pediatric neurologist ASAP.  So I called the pediatrician back to get his input. He thankfully pounced on my indecision of the moment, now not being so sure of what to think (me not being sure, not him), and said he would call Primary Childrens Hospital (the specialty hospital in our state) and get him an appointment with a neurologist as soon as possible. He was hoping with in the month.
His nurse called me back the next day to say they had him an appointment for the following week. While I was impressed and a little astounded at their accommodation to help so quickly, I was also a bit worried. What did they think was wrong that they needed to see him so quickly?
So to the neurologist we went! As luck would have it, the very day we saw the neurologist, the radiology department had a cancellation, therefore an opening that day. So Reesie was able to get his MRI (which the neurologist said was VERY necessary) that same day.
The wonderful doctor we would now come to know very well was an earthly angel in disguise. He didn't make us wait the normal 2 weeks to get the results back, or even a less standard and more appreciated week. He didn't even make us travel all the way back out to Salt Lake ( a 2 1/2 hour road trip) to meet with him again. He called me back the very next day with the diagnosis. It was a very rare (and of course non-curable) brain disease called Lissencephaly.