Speech Therapy Hell

Well where do I begin...

Bitty was born premature about 6 weeks, though the weight of a full term baby. When she had very little problems initially we felt wonderfully blessed and thought she would have no last effects. That wasn't so, as most premature infant mothers find out. Our daughter went for 18 months, to 4 pediatricians complaining of constant fevers of over 104 without going down and constant infections. They repeatably told me it was just a baby thing, and nothing was wrong. I didn't believe such and kept going to different doctors. At 18 months she had nose bleeds that we couldn't stop, though she drank tons of OJ. I rushed her to the ER, our 15Th time being there, and they rushed a ENT down. They did a scopy thing up her nose and found her nasal cavities filled with a thick fluid of infection. That is when someone listened. Finally they did a CT of her brain and cavities, and found out that she has a rare condition that doesn't allow her to process or absorb mucus easily into your body. So her developed mucous stays in her system (lungs, sinus cavities, ear canals, etc) and than add the normal air and stuff that enters your body mixed with it and it creates infections. They, at 22 months, put her under; cleaned out everything and put tubes in. Her hearing before the surgery was below borderline, now it is in normal range. She wasn't talking at all at the time, and when she began talking after the surgery it has grown a little but is still garbled. I was immediately suggested to get her evaluated. So I did by ECI (early childhood intervention). They told me something was wrong and than fought with me on times to have her evaluated again. We moved districts and so had to change case workers (they go by zip code) upon change we got another eval., and told that they would send a speech therapist. This lady was fired a month later, so again we got transferred. It has been 6 months and no help. So about 2 weeks ago I took her to a local speech therapist. They told me something was wrong, but they had no time available to meet. So I have spent the last two weeks, calling...getting recommendations...getting put on waiting list...and having people tell me they don't know what to do til my hair was being pulled out. Until finally yesterday I got a hold of someone. She has 15 yrs experience and strictly works with peds. We have another eval. on the 2Nd, for a 1 hr and half...and miraculously they take our insurance!!!!!

So keep your fingers cross we finally get some nice, good help.

The Mama