Saturday, August 24, 2013

3 year check up, genetics

The three year check up was actually a delight. Everyone in the office was just stunned at what a big girl Ellie has become and were excited to see her. The pedi thought he heard a murmur but since her newborn cardio scan was clean and no one else has ever heard it in her billion appointments, he chalked it up to her being upset. No shots, which was nice. He even hugged me and said he always knew Ellie would turn out great because she had great parents. That really made me happy. He also thanked me for doing such a great job with her. Always stuns me to hear it. I just... do what I do. Nothing special. At least from where I sit. Outsiders, I guess, see it differently. The genetics appointment was a large disappointment. The new geneticist was nice enough, and our usual genetics nurse was pleasant. The geneticist came in and gave her a once over and then left. Our usual contact reviewed the fact that while Ellie shows "soft markers" of Cornelia De Lange Syndrome (short pinky finger, uni-brow, long eyelashes, body hair) there is no scientific proof that she has it (the genetic testing all came back clean). The contact offered more testing, but the chances of finding anything were less than 5% in one test, and 37-47% on the other. Further, she explained, it would only be useful if we were pregnant or having another child. I declined (and husband agreed). Essentially, she said, it comes down to keep doing what I'm doing with Ellie and we can call if we have further concerns and need her to write an order (for neuropsych, for example).

Tuesday, August 13, 2013


Ellie seems to really like her school. Today is day 5 and we've already seen a great jump in her speech and willingness to follow directions. Her teachers are fantastic. She isn't eating much, if at all, but not without urging from the teachers. She eats in the room with her 4 other classmates so it's not like she's greatly distracted. If I go in it will only set her back with separation and eating independently. I pack her lunchbox to the brim with all kinds of food- pureed fruits and veggies, raisins, sandwiches, cheetos, graham crackers, cookies... she flat out refuses. Tomorrow is the pediatrician for her 3 year check up so that should be a mess.

10 things I wish I would have done

I can't take credit for this, but I can strongly urge all special needs parents to read it and follow it. http://www.mostlytruestuff.com/2013/08/10-things-i-wish-i-had-known-about-special-needs-parenting-from-the-beginning.html

Monday, August 5, 2013


We were super early to the elementary school orientation because I was nervous and because I had seen the havoc at another elementary school orientation. It started at 8, we were there at 7:20. I let Ellie walk around and get comfortable. The names and teachers were listed on the doors outside the office but it started at Kindergarten so we had to ask the ladies in the front office who Ellie had. They said she had hit the jackpot and gotten Mr. Mike. We had heard that the only male teacher over there was, in fact, the best. So we are very excited. Everyone at the school was very, very nice and helpful. We waited in line to get to the cafeteria where a nice lady handed me a slip of paper to fill out. Then we went into the cafeteria where we were given a packet of info to fill out again. Ellie was very well behaved and stayed with me the whole time. Not to say she is a saint because there is a very real possibility she was simply scared to death with all the other people doing things around her. We filled out paperwork, tried to turn it in but we needed a car rider number. So we went to the transportation table and incidentally met Ms. Katy, the parapro. We were told we don't need a car number and went back to turn things in (where we met Ms. Katy's mom). We then went to meet Mr. Mike and see her classroom. Mr. Mike lives up to his sparkling reputation. He was very kind, explained everything to me, answered all my questions, asked a few of his own. Ellie just made herself at home with the dolls. He and I appear to be on the same page on everything, so that really makes it easy for me to trust him. I met another child's mother who seems nice enough. Evidently this is her son's second year in Mr. Mike's class. The classroom is lovely. Ellie gets out an hour earlier than I had thought. Everything went so well and I am so please with everything, but... I wouldn't be a mom without some hesitation and sadness. My baby was already so grown up today and is going to mature so quickly during the school year. Tomorrow is the last day we'll have a free day together without school hanging over our heads for the next 15 years or more. Suddenly I'm desperate to be a stay at home mom more. I want nothing more than to be here for her when she is done with school in the afternoon. This day really snuck up on me and I wish I had done more to really savor this summer.