| Well we didn't start noticing a problem until JJ was about 1.5 months old and didn't seem to be gaining weight very well. I called ISS and set up to have a nurse come out and weigh him every few weeks, and when we went for our 2 month dr visit(dec 13) he had only gained 1 lb since birth(he was now 6 lbs 4 oz). The dr informed me that if he didn't gain 7 oz in the next 7 days he'd be forced to put him in the hospital on a feeding tube. Oh and he diagnosed him with Failure To Thrive and called CPS on me(apparently it is mandatory for CPS to be called when a child is diagnosed with FTT). Luckily he gained TEN oz in the next 7 days and was able to avoid the hospital. In mid January I had had it with the dr we were going to(he only did testing if I mentioned it, because apparently he didn't believe me that I WAS feeding my son like I should have been. My goodness, I have 3 older babies that didn't have any problems, jerk). So I switched drs. Our new Pediatrician is awesome, I really love him. I didn't have to ask him about any kind of testing I talked to him about what was going on and he saw JJ and started testing for different things, got him into PT and OT and SLP, and referred him to a pediatric Neurologist. Well he referred us to her in beg of February and it took us a month to get an appointment with her. She checked him out and said ok lets do an MRI which took another month to get that done. Meanwhile little JJ is gaining weight excellently, and making great gains with his development. Ok so the MRI was done April 9. Well we went in to get the results on April 21, and were FLOORED. Everyone had told us oh his probably nothing, oh most MRI's don't show anything so here we were just expecting not to find anything out from the MRI, but we got SHOCKING news. Lissencephaly. A very new word to me, I had never heard it before, and I wish I was still so "blissfully ignorant". Thankfully my husband, Jason, didn't have to work that day because if he would have been working I would have driven up there all by myself(with JJ) and not been able to get us home. I cried the whole way home. Jason and I have been married for 5 years and that day was the first time I EVER saw him cry. He didn't even shed a single tear when his father passed away. But like me, he was devastated. Especially the way that we were given the news. The dr was so cold, like she was talking about some random statistical kid that we'd never met, not like it was our child. I imagine she can't get emotional about this sort of thing because other wise she'd never be able to do her work. She also didn't offer us an ounce of hope. I felt like she stole all my son's potential. Does that sound strange? Its hard to explain. Almost like she just up and stole my son from me. I hope that makes a little more sense. Anyway The "basics" are all we got and in the most grim form imaginable. "these kids never walk or talk" "They have seizures." "They have severe eating problems" "They are profoundly mentally retarded." That is a HUGE bomb to drop in someone's lap. We came home that day and I called my counselor to cancel and let him know why. Then my MIL, her bf and my BIL came over so we could tell them about it. It was horrible. I was heartbroken. I REFUSED and still do to give up on my little man. He can "beat the odds" and I know it! He's a little trooper. Thanks for reading this! |
