My goodness I haven’t posted much lately. I need to, I should have. Should I tell you about my lack of time, or do you really care? Excuses, like butt holes, we all have them and they all stink.
We went to neuro last week and besides being called his platinum VIP patients, it was a pretty typical appointment. He also wanted us to know that it really isn’t that a cool thing to be his VIP, but we are nonetheless. Lily is throwing new seizures our way on top of the drops and myoclonics she is slipping in some tonic clonics again, thankfully they aren’t long, but we all hate those. Lily the one who suffers the most. We who are watching hurt too.
He decided that she should be monitored again, since I also mentioned the possibility of her having partial complex seizures (absence, staring). So this summer Lily and I will be staying at the PEMU at Barrow’s (St Joes). We did it 3 years ago (and 5 years ago and 7 years ago) and will do it again. We are planned on staying for 3 days but it could be more or less. Nothing like living under surveillance for 3 days/nights, not too cool when you are notorious for talking in your sleep.
Dr. also put her on Vimpat, a new AED. We are supposed to start this one and wean Banzel, but every time I wean the Banzel her tonic clonics get worse, so I quit the wean and am waiting until she is on the full dose of Vimpat before weaning Banzel. I really don’t want her on 4 AED’s, but this is temporary and I am not willing to put her in the hospital because of not wanting her on 4. And I may not keep her on the Vimpat, or maybe we’ll wean Vigabitrine, or Clobzam. Unfortunately there is no exact science with AED’s and every patient is different. Dr. also let me know that I am as much of a seizure expert as he, he just knows more about every patient, but I am the Lily expert and I am to be included in every decision we make. Again, this is the gal who barely passed chemistry in high school.
Lily’s new respite care worker has been with us for one week and it is going very well. She is very sweet. She is a mom of 7 kids and has lots of grandkids. She is so good with Andi Jane as well; it is a job requirement since AJ will be up in their grill. No way around that. She is doing great with Lily. She has been looking stuff up about Lily to know more and when she says, you sure you don’t need me to stay longer some nights and get her showered and ready for bed? I was like, if you don’t have to be home than any night you want to stay later that would be wonderful! I am not one to ask for help so it is hard to ask more of people so maybe she picked up on that, or she needed more hours, whatever the case this is going to be a wonderful help.
I feel bad at times that I decided to have more kids when Lily needs so much more from me than typical children do. I openly admit Lily doesn’t get bathed as often as I’d like her to be. Her teeth don’t get brushed every night. Things I wish I could do, but I am poor with organization so we don’t do the same bedtime routine every night and sometimes by 7pm I am too exhausted to do all that I need to do for her. I need help and admitting it is the first step. Apparently I need AA. But Lily isn’t getting any smaller and I am going to need more help and I might as well get used to asking for it. I’m working on it.
Papa Steve drove from SD to help Andrew with our backyard. They will be working all week on it, they just had to start after the Nascar race. They will be getting started today and I am having panic attacks because they are taking down the pool fence for a few days. The very thought hurts my heart so we will be working on making barriers so the pool is not easily accessible. Oliver is a fast boy and a boy who loves water so I will need some prayers and help this week with him. I’m praying this week goes very fast. Can’t wait to see it all done, I can wait however to hear all the expletives that will indefinitely come from the mouths of these men. This is a HUGE project and I will share pictures of before and after. Papa Steve also brought a huge trampoline that they had at their campground and wow, what did we do with out it? Man, what do you do with a child with too much energy? Put her on a trampoline! We are going to get a net for around it, but right now only Andi is allowed to jump on it, no friends can come over yet. Luckily Andi is my cautious girl and isn’t trying double back flips… yet.
I’m finishing up this post sharing a couple pictures of Ollie’s one year pictures (done at 14 months, of course). My friend Liz did these and she is awesome! Check her out! (click on her name to go to her blog)
Calm Amongst the Chaos 