Ammon

So I've blogged about this little guy before, but I have some updates. Lest anyone think I have any negative feelings about this kid- think again. He brings so much joy to our family with his wit and sense of humor and antics. You can't help but feel happy around him and love his adorable little sweet self. However - beyond his cuteness, there is definitely some challenges for this little boy. He's been developmentally delayed since birth and though not obvious, you get a sense that he's not exactly normal. Well we had him tested after he qualified for ECI services at 13 months. The tests came back negative for what we were looking for. I decided to leave it alone and trust. When he was about to turn 3, he was tested by the school and qualified for PEAR speech services at the time. After a semester, they realized he needed more help than just speech services. Some tried to blame water behind his ear drums as the cause for the speech delays, but that didn't sit well with me. If that was the case, he wouldn't have been delayed in sitting up, eating, crawling, walking, fine motor skills, etc. Things that have nothing to do with speech. He passed the tests due to lots of work on the part of the ECI team during his early years. But after a semester of no help at all, I began to wonder how his needs would be met while I was at work and he wasn't getting OT services anymore. He didn't necessarily digress unless you consider not eating with his utensils as he should a digression. Fortunately, the school recognized that he wasn't making as much progress as they would like to see and offered to place him in PPCD for the remainder of his time. It's been great! 2 tubal surgeries and lots of practice later, this kid can finally be somewhat understood. He still marbles his words to a degree and if you don't know the context it's sometimes hard to know what he is talking about. He finally potty trained for the new year after 18 months of hard work. He's coming along - but I worried that it wouldn't be enough. 

Next fall he will be 5 and it's time for kindergarten. Yikes! I see the signs to drop your children off and let them walk to their room. Will he go there? I have some doubts. Would you let your 3 yr old find their classroom alone? Well there are some pretty smart 3 yr olds that might be able to handle that. My challenged 4.5 yr old worries me in that department. In his ARD I was told that it would be very helpful to have a diagnosis or other health impairment that we can use to qualify him for more services than just pull out for speech services. I'm working on it!

Last month we met the Genetics Doctor. She talked with us for 1 1/2 hours and said - well there is definitely something, I just don't know what it is. Then she recommended a full chromosomal test that costs $10000. She said her office would look into the out of pocket expense and get back to me within a few weeks. I got an email saying that with insurance it would cost a little under $6000. I was in shock and reeling a bit, but I held on to my faith. They asked for income and family size and said they'd get back to me. Last week I got another email saying that it was brought down to under $500. Next step is to go to the lab and get our blood taken and pray they will find whatever this is. 

Meanwhile - enjoy watching his version of Happy Birthday a few nights before Christmas when he got his new PJs. Gifts must mean birthdays right?