Frustrated

It has been quite awhile since I have posted. Many things going on - good and bad. I will start updating on a regular basis. I need this not only to update followers about Drew (if I have any left), but also it is therapeutic for me.

With that said, I am feeling frustrated about many things. Front runner right now - Drew's lack of communication. He can't tell us what is wrong. Drew has not slept a full night in 7+ months. We have had a night here and there, but nothing consecutive. Drew wakes 1-4 times a night screaming hysterically. We have no clue why. Drew had always been a good sleeper in the past, something has had to have changed, but what? No clue. EEG - no seizures. Neurologist suggested Melatonin - no luck. Then he suggested reflux. We met with Gastro Dr - had Meckles Scan - normal. Had a EGD (scope) - mild irritation in esophagus and stomach, nothing to warrant these episodes. Drew has been on Prilosec, Zantac, Prevacid - no relief. He can't tell us - is he having night terrors? Is it sensory related? These episodes, he is non-responsive, tense and sensory seeking. Again he cannot tell us. Frustrated.

Last week he went a day without urinating. Very, very bad. Is it a kidney stone again? We even increased his fluid intake that day. What was different? Who knows? He can't tell us. Frustrated.

Yet insurance (Primary & state ) won't pay for speech therapy/augmentative communication. We can reapply in January. Gee Thanks. Frustrated.

We cannot get approved for Occupational Services. Drew is a highly sensory seeking child, who can never receive enough sensory input. Who can chew, but chooses not to. The state's reason "Present CSHCS diagnosis does not relate to the service being requested. Submit a letter from an appropriate specialist documenting the medical condition that relates to the service being requested " Drew received services under these diagnosis codes in the past. It is a game that I have to play with the insurance company. It is how they reduce their costs. We are currently waiting for the Neurology to submit a letter. In the meantime, we have lost our spot on the OT schedule. And my son loses out. Frustrated.

Simple little things in everyday life. Petty things I don't have the time or energy to deal with. Frustrated.

Next post I will post pictures and all the good that has happened with Drew :)