Improvement

After my last post, things started to improve again with Elise. In fact, by Thursday, she was having amazing days at school and good days at home. Her eye contact has been better, she's more interested in us and her language is blossoming. Her teacher told us that her play level is advancing. She was playing with dolls, putting them to bed, feeding them and even putting them together on a teeter-totter. We've noticed that she lately is totally a toddler. Her more babyish behaviors seem to be dissipating. All good news. Coincidentally, since it couldn't possibly have an effect so quickly, Thursday was the day we started testing Elise using Zoloft. We haven't noticed any negative reactions to it. I became worried a bit this morning when she refused breakfast. It was pancakes, which she usually considers to be a treat. Loss of appetite can be a side effect. She also was incredibly irritable this morning. Everything seemed to upset her greatly. By noon, all of that seemed to pass and she was back to having a great day. She is engaging easily with hubby and myself. She's demonstrating a much more mature understanding of concepts and language also. For example, she totally now understands the concepts of presents. She also was really excited to see us put up our Christmas tree today. I think she may finally get a lot of enjoyment out of Christmas this year.

We're supposed to tape her use of language for her teacher. Easier said than done since anytime I get out the camera, Elise's brothers will take over entertaining for the taping. For us, she also does not use language on command or really if she feels it's something being demanded of her in any way. That means we'll have to catch her spontaneously speaking.

Elise has been doing a lot of pointing and labeling lately. When I read a book with her (yes, I can actually get her to sit and read with me lately), she points at what she wants me to say. That's all that our reading is at this point, but at least she's sharing it with me finally. Yesterday, we went to a park to play. The park has a lake where there are lots of ducks. Elise was very excited about the ducks and 3 times excitedly said "Look!" while pointing at them. She was sharing her enjoyment with us for real this time. It was amazing and wonderful. Moments like this are becoming less unusual.

I finally took the time to do some reading about the EEG test she'll likely have at the hospital around March this year. The neurologist will be looking for ESES. I read a bit about this and, of course, it's a bit frightening. Hopefully she's not having seizures. She may have had in the past, but maybe not now. Her sleep disturbances and her language regression warrant further testing to ensure that she isn't having an issue causing or contributing to her autistic behavior. We'll also learn more, rule out more, when we have her genetic consult /evaluation in January.

We set Elise's case conference for Jan 6. I believe her program discharge date will be Jan 22. It'll be so strange to have this chapter of our lives complete. Who knows what the future will hold? It's been a blessing, although difficult and frustrating, to have had the opportunity for her to receive such excellent care.

Well, as you can probably tell, the rollercoaster is continuing and lately it's been moving uphill. I'd really love to get off this rollercoaster sometime soon as it's starting to seem endless...

I just realized in looking over recent posts that I never wrote about Elise's neurologist appointment. It was quite a visit. Elise was not really very charming as she decided it was a good time to poop, twice, during the visit. Because I'd come directly from UCLA, I hadn't remembered to bring a diaper bag for her. I never bring one there because she has diapers and supplies in her classroom. Anyway, I had to improvise and basically put back on her dirty diaper after changing her twice. Given her constipation issues, this wasn't as bad as it could have been since things were rather, ahem, solid. It was however quite disruptive to the appointment and a bit embarassing since I was so inadequately prepared to handle the situation. Anyway, the doctor wanted to see Elise run up and down the hallway. This was prior to me changing her diaper the second time. The doctor commented how Elise had poor muscle tone. I'm not saying this is not true, because I don't really know what the doctor saw to say this. It is the first I have heard that mentioned in regards to Elise. Her gait was a bit off, but then, when I thought about it, wouldn't anyone's gait be a bit off if they had a giant lump of poop in their pants. Anyway, I'm sure many of you didn't want to know all these details, but being a parent of young children, I no longer have any qualms discussing poop and the story seems really funny to me. At any rate, the doctor's observation has led to a recommendation for Elise to receive OT. Whether her assessment was correct or not, I'll take the therapy recommendation. OT did help Elise a lot in the past with her sensory and regulating issues.