So what have we been doing differently these past few weeks? If you go back and read my post earlier this month on pyridoxine, (or for that matter, any of my posts on pyridoxine) - that would be a good place to start. For now, I want to enjoy Mira's moment today and hopefully not jinx everything by possibly attributing it to the supplement therapy we started her on at the beginning of the month. More soon...........
Thursday, September 29, 2016
Despite her episode over the weekend, Mira has been doing extremely well over the past week. She has been in a positive mood lately (in fact, for the past few weeks, with some minor exceptions) and has been very attentive and focused. At school this morning, her teacher presented Mira her name card in circle group, which she does every day, but today was different. Mira reached out with both hands, took the card, and dropped it in the basket that was sitting on her tray. Her teacher and paras were shocked and they all erupted and said 'yay Mira' and started clapping. Mira actually smiled with all the clapping! Everyone was so amazed at her reaction, that they clapped again, and Mira reciprocated once again by smiling! It was one of those rare moments where Mira had an unsolicited reaction to something. It has always been extremely difficult to communicate with her, as she rarely has a purposeful reaction to any situation or stimuli. Such an amazing day for her - I wish I would have witnessed it!
Sunday, September 25, 2016
Sunday, September 18, 2016
It's always a challenge trying to find things to do as a family, especially on the weekends. During the week is always hectic, with the kids in school, but we still manage to have the occasional dinner outing or open house at school, but they are few an far between. Last weekend we took the kids out to a park on the Missouri side and this weekend we decided to try and hit the Nelson-Atkins Museum, here in Kansas City. I had been to the new addition a few times for meetings and such, but had never actually been to the older portion, not seen the extensive historical collection of work there, even after living in the area for almost 20 years. Sad, I know. Sarah has taken art classes here over the years and even the kids have been to the museum a few times, either with Sarah or through school field trips. Needless to say, the kids all did very well - Jonah kept asking when we were going to leave, but at least Eli found enough to peak his interest, especially in the Asian Collection, his favorite room. Mira was vocal and happy throughout the entire excursion, making consistent dragon and moaning noises in every room, usually when we were walking. We went outside and saw the reflecting pool, which Mira particularly enjoyed, because of the long trek over the uneven cobblestones surrounding the pool. Overall, it was a positive outing for everyone.
Mira has been doing well this past week. She did have a couple of tonic-clonics at school on Tuesday, which completely drained her the rest of the day. She slowly turned things around the rest of the week and was in a positive mood the entire time. I had to travel again part of this week to Massachusetts again, but fortunately got out of a trip to Cleveland today and Monday - yet have another trip to Louisiana toward the end of this upcoming week, It's been a heavy travel month, but it it slowly tapering off.
Mira and I went out for several walks today, which she very excited about. She was very patient at the store, which usually makes her restless and irritable when we are at a standstill. All of the activity must have worn her out, as I had to wake her up just to have dinner and a bath. She went right back to sleep after all that.
Sunday, September 11, 2016
This afternoon, we tried going up to Westport, not only to hit their annual weekend art fair, but also to have lunch at our favorite Indian restaurant. Neither one of those activities sat well with all three kids, but especially Mira. I think she has mad because she was ready to take a nap, while we were all set to head out the door. Bad timing led to her being fussy at the restaurant, with Sarah and I passing the baton, eating in shifts - one person eating, while the other was outside walking Mira in circles. Some outings are great - others, not so much. They all survived the outing and Mira and I ultimately ended up taking advantage of the cool temperatures, heading out for yet another walk.
Monday, September 5, 2016
Today was very similar to the last few days before - Mira was unhappy and always wanted to be moving. We walked down to the village after breakfast and Mira was making her consistent moaning noise during our entire walk. Even when we stopped in a couple of stores to do some shopping, she continued making that noise, which of course, turned a few heads. She was content once we were back at home, for about 20 minutes. We did some walking in the the house, then more walking after dinner - in between all of our outings, she was mostly fussy. She hated every minute of her bath and only finally settled right before bed. Such a long, long 3 day weekend.