Thursday, January 16, 2014
Three week therapy
Matt and Nora were here in LA with us for the first week. This provides for a lot of juggling with the two kids, and a lot less sleep for Lila. Although, this was the first trip that they actually slept in the same space and did not bother each other like in the past. I would say it was quite successful overall, but Lila has been much more relaxed since Nora went home. I don't possess as much energy as Nora, of which Lila feels like she has to keep up with :-)
Prior to therapy, Lila had taken three or four independent steps. This was not very consistent, but sure made her motivated and excited. Since we came to LA, Lila has taken 6-8 independent steps! She was extremely happy with herself and ready to do more work on Friday last week. Nevertheless, it turns out her therapist gave her a pretzel very near the end of her first session, and we nearly ended up in the ER. Just when I think she is in a safe environment, and everyone knows about her severe allergies, I am reminded about how close I need to watch her every move.
This is very difficult for me because there has been much judgement passed in my direction with how closely I have to watch my kids. Even if I stress the severity of her allergies, this means different things to different people. Some don't believe me that she will end up in the ER from just eating a pretzel, or a piece of cheese...well rewind to Friday. I wasn't right next to her during this therapy session, and the therapist apparently thought it was no big deal. One pretzel for Lila means anaphylactic shock. So, we promptly left therapy, headed to Urgent Care (or I like to call it, "not so urgent care" which didn't have an epipen anywhere!!!), and then were on our way to the ER with very labored breathing, hives all over her face, swollen itchy eyes, and tons of sneezing, when Lila vomited up the "poison" all over the parking lot. There was still a bit of swelling, but her breathing went back to normal so fast. Her and I stopped, waited for a few minutes to see how she was doing, and decided to go back to the hotel room and take a bath. She felt much better, and we took a homeopathic remedy once returning, which took the rest of the swelling down, what was left of the rash and altered her breathing within minutes. It was crazy! After a long nap, she was finally back to herself. That all being said, there was no therapy on Friday :-(
I hope there are other parents out there that are educating their families and support systems about allergies, and helping people to understand how to care for our kids. I am sorry to go on these rants, but it seems that the most hurtful and judgmental comments have come from the people that should understand the most. If anyone has any ideas for educating our families and support systems, please share :-)
So, we are back to therapy this week, and Lila has recovered from her episode last week. She is ready to go and very happy to be here!