Chiefs Charity Game for CCVI

Tonight is the Chiefs pre-season game for the kids' school, the Children's Center for the Visually Impaired!

Here are some pics I took of the kiddos in their shirts- We are supporting even though we can't go to the game!

Anna

Ayva

Justin

All three

Ayva's EEG results!

Dr. A finally called me today to tell me how Ayva's EEG looked (She had it on Tuesday). He said.... drum roll please........

SHE ISN'T HAVING HYPPSARRYTHMIA!!

She hasn't had it (knock on wood) for 5 months now!!! Since the seizures started, she has never been with out seizures for this long. I know I remember another time, not too long ago, where she almost died in the pursuit of seizure freedom.... you can start reading here if you're a new reader or forgot...(I know I tend to block out bad things).

She is still having another small type of seizure--so she's not entirely SF, but we will take no Infantile Spasms for now ;) He did say that it looked better than the last time so she will stay on her current regime of meds/Keto diet.

Yay! :)

Blogger Award!!

Isaac's Mom at Issac's Big Adventure gave me a blog award!!!! And I almost didn't see it in my comments because of a whole bunch of Chinese Spam comments!!

Thank you so much!

I guess I have to share 7 things about myself as the rules say....

1) I am more exhausted during this pregnancy than with triplets and going to work combined!

2) Ice cream is my most fav thing in the world!!

3) I could eat Mexican food every day for the rest of my life! (and yes, Taco Bell counts!)

4) I am deathly afraid of flying :(

5) I am so proud of my kiddos for being such brave little fighters! They are my inspiration everyday!

6) My fav music group is The Fray. I love me some Fray!!

7) I actually enjoy cooking for everyone but would enjoy it more if I had more TIME!

So now I am going to pass the award on to 2 great blogs. The first is one I read often- another Infantile Spasms buddy at Happy Being Trevy . Danielle is a great writer and she is much better explaining how things really are in this crazy world we live in (much better than me!).

The second person I pass this award to is to Megan at Multiple Baby Pileup . She is an awesome MoM and I am a better person for having read her blog and being able to know her on my MoM chat board. She is an amazing person--so everyone should go check out her blog!

Baby Camryn

Today I got another ultrasound and here are a few pics of our newest addition, Camryn Paige! I am 23 weeks and 2 days!

She is growing great and we cant' wait to meet her!

Please Vote for Us!

Please take a minute to vote for us to win the a gift basket for a special needs momma. This is especially awesome timing since having 2 special needs kiddos is stressful and that's not talking about Justin OR me being pregnant.

So, if you have a minute, please oh please vote for us! All you have to do is go to this link: http://www.facebook.com/pages/Mindful-Mama/109104709107402?ref=ts&v=wall

Once you're there, just like the page so that it will allow you to comment, click on the Just Others tab, and scroll down until you find the nomination for Sarah, posted by Jody or Michele. All you have to do is either comment on it or like it and you will have voted for us! I know that it takes a minute or two, but I'd really, really appreciate it if anyone out there would add their votes. I never EVER win anything, but if I could start now, boy could we use this stuff!

Update...

So, not much going on around here.

Ayva is doing very well. She is gaining strength back in her head/neck and is beginning to lift it off the ground now :) :) Here is a quick video of her showing her stuff:

Photo and video editing at www.OneTrueMedia.com

She is happier since being off the Depakote but also a little more needy of me :/ Which is ok for now since the girls are on summer break from school--I'm hoping that we can kind of get that resolved before August 23rd-the first day of school.

She has yet another EEG next week on the 10th to see if the little startles she has when a loud noise scares her is anything or not. Then on the 11th both Anna and Ayva have eye Dr. appointments.

Anna is doing VERY well being off the one medicine she was on--Topamax. She is talking better, comprehending better and moving/balancing a little better!!! I am SUPER proud of her!! You can now ask her a yes or no question and she will either say "yeah" or shake her head "no". I will definitely have to try and get that on video :)

Also she is eating A TON!! The Topamax was a appetite suppressant and she was just maintaining a steady weight of 19 lbs for a long time. Now that she's been off for about a month and a half- SHE IS UP TO 21 LBS!!!!!!! She is eating a ton during each meal and is even requesting snacks (by whining until I feed her). She is walking great (with help still) and wants to follow Justin everywhere. She is very motivated so I think with time she will get it on her own!

Justin is doing great also! Potty training is excellent! He is in big boy underwear all day and only wears a diaper at night--he's a very heavy sleeper! :) He has definitely gotten to the stage of "mine" and doesn't want to share anything-with anyone. Everything is his, "My sit there" "My phone" "My drive the car". I am hoping this phase is short lived though :/

Baby Camryn is doing great also. I will be 23 weeks tomorrow and on Friday I have another ultrasound and hopefully I will have some pictures to show! :) I'm feeling ok, tired and hungry, but otherwise really good :) I can't wait until she is here-and am super excited to see how one baby is different than three at a time!!

Ok and now I will share a few pictures because I can't resist...

Anna

Justin

And I only have one that isn't so good of Ayva recently-