Wow! May 19th? Seriously? Lily has one more “full” week of school, “full” because Monday is Memorial Day, but she has that week and half of the next. She gets out June 3rd. I can’t believe another school year has been completed. I would be excited about summer school, except well the school says Lily …
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 …
Andrew and Andi used to fight all the time about what she was wearing. He’d say “want to go to the store with me” of couse she’d say yes, that child will not can not miss an opportunity to get something, anything, please, please, please. So he’d say, ok change your clothes and she’d run …
I had to take Reading up until the 8th grade. Not because I couldn’t read, it was because my comprehension of what I was reading was less than to be desired.I have been going over and over this paper, trying to understand it and the more I read it the more sense it makes. Well …
A week shy of 6 months, finally I hold in my hands the diagnosis report from the U of Chicago Genetic Services Laboratory.Here is her result: Deletion involving exon 1 in the CDKL5 gene.So my gut was right from the start. I KNEW my daughter had a variant of Rett Syndrome. It is a hard …
Baby is asleep, got Lily on the bus, Andi is eating oatmeal watching Sprout, I think I have time to update. Long overdue. We got a call early Good Friday morning that Andrew’s dear Aunt Carol had passed away. Carol was an amazing woman. Carol and her family came to our wedding in Mexico almost …
Why do I need to think of something to say when I can just repeat what my 4 year old says…Andi had a shirt on with a word on the backAndi: This shirt says barbie dot comMom: No it doesn’tAndi: What does it say then?Mom: Guess (as in the brand)Andi: See I told you it …
Last week Andrew’s brother, wife and kiddos came to visit and we had an amazing time! So much fun! They came during the week and surprisingly enough daddy was able to take a lot of time off and we all hung out. The kids hasn’t all been together since November of 2007 so it was …
Although Andi’s actual birthday isn’t until the 17th, we had her party today. I uploaded mucho pictures on Flickr and have them on the slide show up on top.Just sharing! 🙂
Well it’s been eventful around here! Thursday Oliver was not only 4 weeks, but also 1 month. How often does that coincide? He is doing well. No fever, a little congested, but no other worries. Well I always worry, but he’s fine. I realized my heart can’t take another newborn (nor my house), as sweet …
Calm Amongst the Chaos 