Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

So Monday was our last appointment. Sigh. It was a long one. Thank God my mom went to hang out with us. It was a long one. I first spent 2 hours getting pee from Lily Sunday night. 2 hours! I was an hour late to a family dinner at my sisters waiting for that child to pee. I have tried those things you stick on her, but every time I try she manages to pee everywhere but in the bag, the only sure way to get a sample is to sit her on the potty. I loaded her up on drinks, but since she only likes to pee in fresh diapers it was a long 2 hours.
But we got it. Andi slept over at my sisters Sunday night so that was nice not having to bring her along because I am not kidding we were there from 9am to noon. We sat with the nurse for 30 minutes, then saw the neuro for 15 minutes. He was funny. He just says what he thinks. Anyway, he wrote scripts for Clobazm (sp?) and Vigabitrine and our favorite pharmacy in Canada is able and willing to fill them both so that is the easiest route for us to go. The Keppra wean didn’t go as planned. Apparently Keppra was preventing these myoclonic cluster creepy seizure so she is back up on that. On Topamax and Vigabitrine then we are supposed to add Clobazm, but neuro doesn’t want her on that many just as I don’t and we will go from there to see which one to wean. Sucks. I didn’t realize Keppra was really helping. At least it is the one with the least side effects. I’d like to get her off Topamax if at all possible. It has been so long, I am not sure all it does. When we tried to wean it last time it wasn’t an awesome thing, but that is because she was a mess anyway off Vigabitrine. So we should try again. I am just thinking out loud. For those of you with kids minus seizures I am sure none of this makes sense, but for those of you who do deal with those nasty monsters I am sure you understand the constant clutter in the brain of the best option, stop seizures but don’t totally fog the brain. I hate seizures.
So anyway, after visiting RN and DR we had to go to the hospital for an EKG. We had to wait for what seemed forever to register her, then up to wait for the test. Then the test, then down to labs to give them the golden pee and to have her stuck twice for blood. Then I hugged the sweet RN goodbye, whom I got to know real well these past months, and we said SEE YA!
We went to visit my aunt who had neck surgery as well after all that, then to eat in the crowded cafeteria. Oh and I thought it was just on Grey’s Anatomy that you see people on the elevator. Nope not the case. Lily’s neuro got on the elevator with us and took it down. It was weird since we weren’t in his office. Lily made herself known by happy screaming and we all laughed at her. Gotta love Lily knowing how to save an awkward situation.
That child loves to scream. She was happy screaming from 6am to 7am this morning. I was not ready to get up so we just let her yell and let us know she was up. She never cried, it was just hey I’m up, get me out. She is so silly.
Everyone who sees her lately says this “Wow! I never see her so alert and active!” Yeah, that is what not seizing all day does to her.
Otherwise on the home front, Lily doesn’t go back to school until next Wed. Fall break is long! She is home with her nurse today and Friday. Thursday we will take Andi to gymnastics and that is the highlight of Andi’s week. Plus her awesome gymnast cousin Skylar is out this week too and will go watch her tomorrow. Andi is so stoked! She loves her cousins!
My pregnancy is going well. I am really showing now! 22 weeks and counting. I can’t imagine how big I will be in 18 more weeks. Andi says “you’re as big as Jody so it is time to have the baby” my cousin Jody had her baby in July and I kept telling Andi I have to be as big as Jody before I have the baby and she thinks I am already there. Silly girl! Maybe I am as big as she was in July.. sigh.
Heartburn really kicked in last night for the first time. I had it much earlier with the girls and had hoped I was immune with this boy, but no such luck. Woke me right up and I had to take a zantac and sit upright for almost an hour last night before I could go back to sleep. Sigh. I hate heartburn! And neither of my girls had hair so that old wives tail sucks. I guess my Mexican food obsession will have to subside if I want to sleep these next 18 weeks.
Andi is good and as silly as always. Rarely naps and is always full of energy. She is so funny and keeps us all entertained daily.
So that was a long huge update. At least it is a good one!
If you are in need of a tax write off think about supporting our Zoo Walk for Autism Research I have a Paypal button at the top of the page. It is a fabulous cause and a day at the zoo with my girls supporting such a close to home cause really sounds like a great day to me.

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