Tuesday, May 31, 2016

Day by Day

This past week was Avery's last week of school before summer break #1 and this week is Maddie's last week of Pre-K and I just cannot comprehend how this school year is already over. So much has happened this past year. SO much. 

Avery is still sleeping better but we are seeing more seizures again which means we need to up her medicine, and upping her medicine just invites the crazy side effects back. Which means we have to go painfully slow and won't make it to her therapeutic dose for some time. So the seizures will probably keep coming back. But it's so much better than it's been.

It's one of those times of year where I really just have to take everything day by day because looking into the future is more overwhelming than usual. I have not planned much of our summer yet and there is no summer vacation in our sights either, which is a first. The main reason for THAT is because we have begin construction on Avery's new downstairs room!! Which is both exciting and terrifying at the same time. We have been anxiously waiting this modification/construction that would mean no more carrying her up and down the stairs, which is exhausting. It also means a new special bathtub that would make bath time so much easier on everyone. Of course, the downside is dust and mess and noise and lots of people in and out of the house.

Here is a view looking into our old master bedroom, where Avery's new room and bath room will be.


The new wall separates our old bedroom. The opening will be a small linen closet. To the left will be the new bathroom and to the right will be the new bedroom.

Here is a view from inside the new bedroom. Her closet is on the right. You can see our old master bathroom in the background, which will soon be demo'd to make a closet and then start our new bedroom toward the back of the house.


We hope everything will be finished by the end of the summer. Famous last words. It will be so worth it though!!! I keep repeating to myself.

And to sum up a very, very busy month: 

-->I had a wonderful Mother's Day, where a beautiful and delicious brunch was brought TO ME, which was all kinds of awesome. Here we are with my lovely momma and brother, enjoying our brunch. Sorry crappy phone pic. And cut off Avery :/


-->Avery had an abdominal MRI to make sure there were not any evil tubers hiding in her kidneys (common for her genetic condition) and praise! there were not.

--> I had my first massage in almost a year which was GLORIOUS. Thank you bff Ali for that gift. xoxoxo

--> Maddie started swim team and has already learned so much!! She is wayyyy more independent in the water and the coaches are teaching her how to breath correctly. Here's my little fish in action!

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--> We took new family photos and I can't wait to share them. Here is a preview of my littlest beauty. In the wildflowers :)


OK summer, let's do this.

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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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