Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

I just wanted to give a quick Lily update since she is the reason for this site. Hence the name. 🙂
Lily is doing pretty good. She is back to having her 4 o’clock meltdowns that we haven’t seen for a few months. It is like a cycle, she gets upset and has more myoclonic jerks and the jerks make her mad. It is the chicken or the egg thing since we aren’t sure if the jerks make her mad to start with or if her being mad brings them on. Anyhow it is hard for everyone. Yesterday I just took her outside to swing and put her feet in the pool and waalllaaaa she was happy. No jerks, not sad.
I guess she needs to be stimulated at 3:50pm and we make her forget that she gets mad at 4pm. We had to up her clobazam to keep the atonics and myoclonics away. I have been lowering her Vigabitrine as well, there is such a fine line we have to walk with her in controlling the grand mals and jerks/drops. I really want to wean her off Topamax, but not ready yet. Maybe we can wait for the summer. I don’t like to mess with stuff too much when she is in school. I like to monitor her myself with big changes. She’s been on Topamax since she was 18 mo old! Yikes.
She will only have 3 weeks of summer school this year so we will have a lot of time together this summer.
Andrew thinks I am crazy to volunteer for VBS this year, he said he thought I would take the break from the kids, but the church really needs helpers so me and Oliver are going. Plus I want to be there since I am putting Lily in it this year. Last year she was in summer school. I am ok with her going to children’s church for an hour on Sunday’s but this is a whole different story 5 days a week, 3 hours a day. But I do think it is good for her and fun for her. The kids are great with her.
Lily did great today in hippotherapy. She rode Candy forwards and backwards. No pads. She smiled and clapped and talked the whole time. She continued with OT and Speech and did well also. Then I took her to school. Monday’s are crazy.
Now I am taking Andi outside to swim. It is for sure May.

3 thoughts on “Lily Bug

  1. Glad everyones doing okay. Have fun in Colorado! Everyone needs a little vacation every now and then 🙂

  2. Anonymous says:

    So glad to hear a good update of your sweet girl

  3. Hi there! I found your blog through a friends blog. My three year old son, Andrew, has Rett Syndrome and is one of 6 boys in the world. Lily is such a beautiful girl and I am glad to hear that she is doing well. I laughed when I read your post about genetics. I still have ask the neurologist to explain Andrew’s situation with Rett Syndrome and I still don’t get it. So much for a graduate degree!

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