Next steps for the little guy.

We've had to go back to the alarm on Cale's bedroom door. We despise it because it upsets him so much when he sets it off, but for over a month he's been back to old habits of roaming the house in the middle of the night. Melatonin isn't working this time. So far, his escapades have mostly involved food and gum (which ended up in his hair), getting drinks he can't have, etc. But we just can't risk his safety.


We are working with his developmental specialist at Vanderbilt on getting him into a sleep study and I am hoping to hear back sometime today. IF he gets in, they will also do a psych evaluation which will give us a "definitive" diagnosis. The bloodwork for Fragile X and a host of other genetic disorders all came back normal. We were fairly certain already that an underlying genetic condition wasn't the cause, but now they have officially been ruled out. We are hoping to get into the sleep study so that we can get some help for him, and for us, regarding his sleep patterns, which very obviously effect his mood/behaviors during the day. He is also wetting the bed again at night after being pull-up free for months?! And that's after restricted liquids (one cup at dinner, none past 6pm), using the potty before bedtime AND a dream-pee around midnight. Not sure if it's related to the rest of the sleep issues or not.

As far as getting his DX on paper, it doesn't really change anything. The point was to get him the help that he needed, and we are. The upside to have a written DX is for future use in school, etc. as a way to educate others on his circumstances, NOT label him. This way, we will be able to provide as much information as possible to those working with him, instead of being in a constant stage of assesment.

We would love some extra prayers regarding the sleep study/psych eval. We really need him to get in. If he doesn't... we will go from there! God has a plan, we're just trying to take the right steps to follow it!

There have been some noticeable changes since he started school, as well. Mostly good. Over the last couple of weeks, we have noticed him using his imagination! Not in a "Cale" way, but in a very typical way. Some people may not think it's that big of a deal to see your 4-yr-old son pretending to eat at his sister's "resturant" or playing "school", but for us it's VERY exciting! He's doing better at sharing (some days) and MUCH better at using his words, even feeling words (he gets them confused a lot, but the fact that he's trying is a big step!). He's even met one of his IEP goals already (matching five colors)!

Also... he is 11 months seizure-free! (We think. The type of seizures he has - usually- often only look like him "zoning out" or an extreme behavior change. There have been a few questionable moments, but nothing major in almost a year! YAY!).