Wednesday, May 4, 2016

A Good Day

It's late at night (what's new?) and I am patiently waiting for a new treat recipe on Avery's diet to finish cooking in the oven. I have high hopes for this almond flour/coconut oil/chocolate chip concoction because sweet girl needs something new!

Doesn't it look promising??


More specifically though, I wanted to blog tonight because lil'bub had A GOOD DAY. A very rare, smiley, excited, not sleepy or frustrated DAY. These days are not to be taken for granted.

Just last week I was at the end of another rope, trying desperately to figure out why her behavior became so volatile and aggressive at literally the exact time that she finally started sleeping normally again... and I don't even mean normally for her, I mean this girl is sleeping THROUGH THE NIGHT. Sorry, I'm a little CAP happy but she is friggin finally getting a "normal" night of sleep. But before we could start celebrating this amazing change, her behavior went straight to hell. I'm talking insanely moody and self injurious. Like, totally opposite of what you would assume would happen when someone started getting more sleep!?!?!?

I could talk all day about all of the mind boggling symptoms that drive us all mad but what I really want to focus on is what a nice day we had TODAY. I had to pick her up early from school for a dentist (ugh) appointment and even that didn't put a kink in our glorious day! We "talked" and giggled and sang and listened to Disney princess music (new fave) and clapped and hugged and kissed and just generally made mommy's heart burst with happiness because THIS is my Avery. My Avery that I don't get to see very often anymore. And I miss her. 

I want her back so bad that I would trade allllllmost anything. Very close to anything. The weird thing is that she really seems to be doing great at school, after nine long months of confusion and frustration, but her home life is going the opposite way. And we can easily say that she has our number--big time--and knows how to manipulate, but this seems different. It's an unhappiness that seems different.

I am going to hold on to today and pray for more. Maybe, just maybe, we've turned a bend. 

Look how good she looks in her walker at school, working on her goals...



I think we have found better incentives and worked on the connections with her teachers to get to a much better place at her school. This picture makes me smile big.

We've also introduced Avery to a new communication device that we hope will translate into a lot less frustration for everyone. She is getting the hang of it and learning quickly how to use it to get what she wants.


Meanwhile this little sunshine continues to be wonderful. She is so full of smiles and love and enthusiasm that just make me adore being her mom. 


She is almost done with her year of PreK (how did it go so fast??) and has received glowing reports from her teachers. And this is a whole other blog post, but she started READING. Legit reading! Bed time books are no longer read by mommy and daddy, they are read by Maddie! We are so proud of her.



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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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