I'm just venting...just need to vent. Sometimes, just sometimes it really drives me crazy when J paces (really it's running) from one end of the room to the other...over and over and over and over and over..... you get the idea. He flaps, flaps, flaps....again you get the idea. For some reason it's worse today. I don't know if he just didn't get enough energy out or what. It's days like these that even though the specialists decided he's not on the autism spectrum, I can't help but still have a tinge of fear he may really be? I love, love, love him more than anything. He's my baby boy, there's no doubt, but I have not been able to stop him all day. Hoping tomorrow is better for him. Hoping that some day whatever overstimulation or understimulation he's needing or having is rectified. I'm hoping some day his body figures out how to regulate itself. Sometimes, just sometimes, I feel overwhelmed between my anticipation of not knowing when Cole's surgery is coming and not really knowing what's going on with Jaemin and his GERD and whether this is truly causing some of these symptoms. I was reading over the side effects of ranitidine with a nurse friend of ours and weird body movements are a rare effect. I'm just hoping that this next specialist will help us figure it out.
Oh, did I even mention that whole ordeal? We had Jaemin's evaluation with the autism specialists on 4/21. She recommended changing his GERD meds. So I called his gastro and they called back on Good Friday and said no...we needed to see him and talk to him in person. His autism specialist (development pediatrician) felt it was worth a try to switch is meds on the off chance that it was causing some of his behaviors since it began around the same time. I told the nurse that I wasn't going to pay $100 to come in just to talk to the doc. I wanted to know what he was going to do. She had no answers. She called the next Monday and went through this again and again the next Wednesday. I finally told them I was really irritated that they kept calling me. I was looking into alternatives on my own at that point because I was so frustrated with a doctor who can't seem to tell you what the next step was. Not to mention that they decided that my not wanting to pay $100 to talk to me translated into not being able to and they called social services on our behalf. I was TICKED!
So, the gastr, himself, calls that Friday. I explain myself again. He does nothing but reiterates that I need to bring him in for an exam. Explains nothing else. Finally after 45 minutes of conversation he tells me that we need to confirm he's still refluxing and there IS a test. Well, halleluja! Needless to say he will not be the one doing it. After talking to another friend of ours who has brought their child to the same gastro and also were unhappy we switched to another children's hospital further away as we have no other choices here. She loved the gastro she saw there and how thorough he was. I emailed the hospital and they called me the next day. They explained exactly what to expect and said the very same doctor our friend liked so well is the one in the group we'd see due to his specialty. I take that as a sign from God. So, next month, if they get the records transferred in time, we'll be driving 2 1/2 hours to this hospital for a consult. Then, back again to stay over for a probe and possible other tests (they mentioned ultrasounds and such). I'm so happy someone is finally helping us with him and not ignoring me AND THEN blaming us insinuating we're neglectful parents. ARE YOU SERIOUS?
We may not be perfect parents, but the one thing we are is careful with our kids' health with all the needs they have. I take this extremely personally when you insult my mothering. And please, please listen to me as far as medical goes. I know my kids best!
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