Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

To say it’s been slow and easy living here in Chandler AZ, I’d be lying. I wonder if I will ever get to say that about our lives. I used to say “I’m board” as a kid, all.the.time. I would call my mom at work in the summer just to tell her that and without fail the words I heard back was “well you must be a boring person.” Au contrair mama, I haven’t uttered that word in probably 9 years and 10 months and I actually look forward to the day I can say it again. And I hope to call my mom and say that to her and when she tells me I am boring I will say Amen!
But since those words I won’t be able to mutter for at least another 15 years, I think I’ll just go with what we got. Non boring lives.
I have had so many cute stories I wanted to share. I wanted to share an update on Lily. I have wanted to do a lot but I hate to blog on the ipad and my laptop is on it’s way out and lately at work, well I have to work. Why is adulthood so annoying?
I am going to do a long wrap up and try to keep it as entertaining as possible, since I feel I am loosing my edge, I may have to throw in some quotes from 50 Shades to see if you’re listening. Sex sales.
Most importantly is the Lily update. She is ok. Yes I said ok. She is happy when she isn’t seizing. So that is good, but the seizures can be as many as up to 10 a day. And 3 of them being the long tonics that knock her out and ruin her day. So that sucks. She is now on summer break and we decided after two summers at home to put her in a summer camp. I hope it is the right decision. Andrew took her this morning and she was so excited to go! But then had a seizure in the parking lot right before drop off 😦
They are going to go swimming today and she loves swimming so it is my hope she gets to sleep off the seizure and then gets to enjoy her swim. She has upcoming neuro and eye doctor this summer. Her van got pimped out after it hit the skids and daddy put the fear of God in the kids to keep it clean this summer. It’ll prob make it thru June that way. I think that is a good catch up on Lily. Her disposition is happy. She is enjoying the Ipad more and more and since she got a new wonderful Speech therapist she is getting a communications eval and we hope she will get a new Ipad that no one else touches and we get it mounted on her chair and she can use it all the time. And except for the dang out of control seizures, she is good. She is still on 4 meds and we haven’t been able to do any weaning like we had planned. That just made a whole lot of problems. So still on 4 meds and she is still uncontrollable seizing each day. Cheers CDKL5. Suck it.
Andi Jane. Andi has completed 1st grade. She got the caring award from her teacher and I can’t imagine any other award being more fitting. Love that girl and her heart. This week her and Oliver are at VBS. So crazy Oliver can now go to VBS at church. (Vacation Bible School for you heathens).
Oliver’s Speech therapy came to an end until the next school year. It is going well, he is so darn cute. He has to take his backpack with him each session for 30 min of speech. Cute kid. Sorry is that one of those it’s only cute if it’s my kid type of thing?
June 22nd Andrew and I are off to New Orleans! We are going to the National Rett Syndrome Conference (same one I attended 2 years ago in Colorado Springs)! I am so excited! On Sunday we are having our own CDKL5 conference within the Rett Conference! I have to do a little speaking thing with another board memeber and that makes me a bit nervous, but I cannot wait to meet other families. There is just nothing else like being around those who truly walk in your shoes. Plus this will be a nice little vaca for Andrew and me. We’ve never been to New Orleans and I imagine I may get a few beads after a few hurricane’s if the night goes my way.
I kid. I kid.
I’ve changed my mind on continuing this post. Gonna break it up. Andrew’s wonderful Grandma Gloria passed away and just Andrew, Andi and I got to make it back her her service and I’d like to go into detail about something that recently happened on my youtube channel. These are things I cannot share lightly and refuse to throw in a silly post. So I will end this update and will work on the other two sometime before Christmas.

2 thoughts on “Summer is here and I gotta update!

  1. Sarah says:

    So excited that Lily has a great new SLP! Will be anxious to hear the update once she has her AAC eval. Hope you enjoy the conference and have fun in New Orleans! I was there for the first time last August – neat city! (Take the lightest-weight clothes you can – it's super-humid). Here are my (unsolicited, I know) suggestions for while you're there: go to a show at Preservation Hall, eat a snoball (with evaporated milk drizzled on it!), hear a zydeco band here: do a cemetery tour, take the St. Charles streetcar through the Garden District, eat beignets (sp?) at Cafe du Monde, do a swamp tour if you can, and eat at Mr. B's Bistro (their bbq shrimp is to-die-for)!

  2. Erica says:

    please make sure we find each other! Ill be there too!! Ill be looking for you two!

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