Busy Busy Busy (5mo3wk2dy)

We have had a busy last few days. Tuesday the Tennessee Early Intervention Program sent an evaluator out to evaluate Aryssa's developments to see if she qualifies for State help. Aryssa did so awesome. She passed everything except anything oral related. She is lacking in oral social skills and of course eating (obviously) on her own. She said that due to her being "failure to thrive" will automatically qualify her. We should find out something in 5-10 business days. Once she is qualified, then hopefully immediately they will start paying for her therapy.

I went to the doctors myself right after we got done with her evaluation. I have been having neck pains ever since I gave birth. I have been seeing this doctor for 6 weeks now and he has prescribed me muscle relaxers and anti-inflammatory. He took x-rays of my neck and they came back normal. I complained yesterday that when my neck starts hurting real bad, then my back gets tight and then my hands start to go numb. He is thinking carpal tunnel syndrome. Not sure why he thinks that when it's my back I am complaining about but he isn't convinced the two are connected. I go in for nerve test on both arms on the 14th of this month. Hopefully we can get to the bottom of this though.

Went to Aryssa's pediatrician on Wednesday. She weighs 13 lbs 3 ozs and is 24.5 inches long. Rob did not go with us this time and I wished he would have. Dr. Seawell was trying to convince me it seemed that there is "something" wrong with her that there is some kinda syndrome that she hasn't found yet that she has due to her head size being so small. She was telling me with Aryssa's weight being in the 10th percentile and her length in the 20-25th percentile that her head being a half inch OFF the chart is unproportionate. This woman was acting like she was having a heartfelt mother to mother conversation with me and all I wanted to do is slap her. She is so sure that her "small head" is connected to her lack of eating. Even though her MRI came back normal. I basically told her I don't want to hear it, till she has proof that there IS something wrong then keep it to herself. I am the one that is with her everyday not her, I told her that Aryssa everyday is getting smarter and smarter so I am not at all convinced there is anything wrong with her other than the obvious... which is the stupid feeding tube. That tube is causing so many problems such has bad reflux which is causing her to throw up a lot and a lot of pain. It has caused to her to stop eating by mouth completely due to she has gotten used to being tube fed. I could go on for days it seems but I won't. She has referred us to a GI doctor down at Vanderbilt, so we are going there tomorrow to meet with him and see what he says about her bad reflux. The GI doc is also the one that would schedule her for surgery to put the mic-key button in so we can pull her NG tube, which should help with the reflux tremendously and hopefully with the aversion to eating with her mouth. She is still doing well in therapy, however the therapist is still convinced that once we get the tube out of her nose and throat that she will pick up better at trying to eat and swallow. We shall see though. I can't trust anyone right now... but then kinda have to at this point since there is no more that we can do at this point. Will keep you posted on what the GI doc says tomorrow.