Wednesday, April 20, 2016

April Floods

Despite the horrible floods affecting Houston this past week, we are perfectly safe here in bub land. Our street did briefly turn into river rapids on Sunday night, but the water didn't come up the lawn, thank goodness. The girls were out of school for a couple of days but we survived (barely:). 

Otherwise--April, which is usually a quieter month, has been busy, busy with doctor appointments and PreK activities. Avery has been sleeping better this month than the previous three, so that deserves a celebration! Unfortunately, she also went through a pretty serious week of pain (tummy, we think) which landed us in the ER and kept her out of school for four days while we tried to get her better.  Still don't really have a clue if it was a tummy bug or what. 

We are working hard to find a communication device for Avery that would be ever so helpful in situations like this one, where we have no idea why she's so upset, or how to help. Pretty much the most helpless feeling in the world for mom and dad. 

Her seizures are still very subdued since starting the medicine that affects her sleep, so that's a plus. Part of me did wonder though if she hit some kind of sleep deprivation breaking point and that's what partly caused the week of pain and distress. Ugh! I still can't believe when we finally find a good solution to the seizures, the side effect turns out to be an even bigger problem.  It's hard not to dwell on it.

But like I said, the sleep does seem better... so I'm keeping my fingers crossed.

I've been terrible lately about taking pics of my bubs, but don't want to leave you hanging! Here's one from a couple months ago of Avery after school on "green day." The one of Maddie is actually from today though-- she helped me make my famous (to the bubs) Chocolate Chip Cheesecake Pie for a PTA teacher lunch tomorrow at her school.  My little baker.



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Thursday, March 31, 2016

Easter 2016 and Throwback Thursday

Easter really threw me off this year with how early it came. I was just starting to get used to the idea of spring and then it popped up out of nowhere! March 2016 has been extra rough with the whole not-sleeping thing. This past week Avery also had some pain going on that we could not get to the bottom of, even after the ER and several doctors. It's so weird to me that I'd never stepped foot in an ER in my entire life a year and a half ago, and now we've visited THREE times just in the past 6 months. Ugh.

The girls did seem to have a happy Easter though. I got some good pics this year.

This face cracks me up. To say that she was excited for her
first egg hunt of the year is an understatement.

dropping the eggs in

sweet sissy help :)

It was nice as always to see lots of family. Maddie enjoys hanging out with her second cousin, Miss Molly, and especially playing on the 40? year old, creaky metal and somewhat dangerous playset down at the ranch.

They sure do look cute though right?

Avery struggled to stay awake a lot...
I still think she had a good time.

We had another fun egg hunt and some super yummy food at Nana's house. I actually got a somewhat decent pic of the fam!


And one with Nana and her girls...


And a couple with mommy and her girls...


It was good bunny fun! I also ran across an old March post from 2010 that I had to share. I was tired then too... imagine that!



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Thursday, March 17, 2016

MEME MANIA

Instead of further elaborations of how little sleep we are getting, or how frustrating this endless seizure med game is, I'm going to post something for smiles. Because I've gotta laugh or I'm just gonna cry!

You might notice a theme.

Special thanks to google images.









feel like this might be overkill? too bad.


Truth!
(at least right now)

And other parenting facts...





and last but not least...


emphasis on the reason I breathe... deep breaths...

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Monday, February 29, 2016

STILL Up All Night

Well, I've set a new non-blogging record. And I can tell you exactly why.

If you've read my post from last month, you know we had to keep Avery up all night so that she would sleep through a special MRI type test the next morning at the hospital. Long story short, I thought there was no way Avery could do it, but she totally proved me wrong. I was amazed. 

I shouldn't have been.

The fact is, for many years, Avery has had a hard time sleeping through the night. So she might be nodding off at 7 p.m. every evening, but she certainly doesn't stay asleep. We've been lucky enough that through the years she has mostly kept calm and happy during her intermittent insomnia. We've tried different things, like melatonin and adjusting her meds, but nothing seems to solve the problem. 

Last May that all changed when we realized Avery was having frequent and intense seizures at night that were lasting much longer than we'd ever seen. The seizures were waking her and causing even more insomnia than usual. So the hub and I also started waking more frequently when we heard her up, nervous she would have another seizure. Before these changes, we had finally started turning her monitor volume down each night! We could still watch her on the screen, but didn't have to listen to her frequent wiggle and giggle sessions. The volume went right back up in May! And sleep for the bubs went right back down.

When Avery had the super long seizure in the middle of the night this past fall that sent us to the ER, we decided that we needed to keep an even better eye on her night activities. So we invested in a camera that could record exactly what she was doing each night. As you might have guessed, it's been both a blessing and a curse. 

There is no doubt that I want to know exactly what kind of seizure activity is going on, but watching these videos is not fun in any way. She is waking and seizing far more than we thought.  For the most part, they are very short spasm-like seizures. The problem is that one of these 10-20 second seizures can wake her and then she is unable to go back to sleep FOR HOURS. On the average she is up for an hour surrounding a seizure, but three hours is not uncommon. And then she might be up again with another spasm within the next couple of hours. It's insane. 

Here is an example from the other night:
Up at 1:43 am
20 second seizure at 1:53am, another short seizure at 1:58am, multiple spasms at 2:18am
Back asleep at 3:03am
Short seizure at 5:48am and back to sleep

And another night:
Up at 1:30am
20 second seizure at 2:35am
Back asleep at 3:31am
Up again 6:05am
Short seizure at 6:45am and back to asleep

I know you get my point.

All of this to say... WE ARE SO TIRED. And by we, I mean hub and me, because Avery still functions during the day per usual. She only very occasionally seems affected by her night time craziness and I understand now it's because she's used to it. We are not. We are up in her room all of the time after hearing/seeing a seizure, or worried she's about to. Frequently we are in there together, holding her during a particularly long one, hoping we don't have to use any emergency meds. It takes a toll. Like, a toll on top of a toll on top of past tolls.

I am no longer able to keep the nocturnal hours I am so used to and therefore blogging has gone even more by the wayside (Sad face). Right now I am up way past my new bedtime because a)Bub the hub allowed me a very nice nap before dinner and b)I felt like leap day was a good sign/nice extra day that should be taken advantage of. 

We are hoping and praying this doesn't go on much longer. We started a new medicine tonight and we have a few other things to try as well. We are not without hope. I want to be able to share some good news in 2016! 

Here are my girls on Valentine's Day,
and one tired face mama in the background



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