Thursday, March 26, 2009

Today is Purple Day!

http://www.purpleday.org/

CLICK ON THE LINK TO LEARN MORE ABOUT PURPLE DAY!!!

Way Back When-sday

For other Way Back When-sdays go to Cheryl's blog at Twinfatuation!
March 2008
Anna



Ayva


Justin

Justin, Ayva and Anna

Wednesday, March 25, 2009

Thank God!

Yesterday, Ayva had a follow up EEG. It has been 37 days since she started ACTH treatment. Dr. A told us that her EEG showed that half of her brain was COMPLETLY NORMAL and the other half is significantly better! We are increasing her dosage from .4ml's once a day to .6ml's once a day for one week and then the next week increasing it to .7ml's for 2 weeks until we go back for another EEG on April 14th. He is optimistic that this increase will finally break the seizure cycle in her brain, and she can become seizure free! We are all praying that this works and she can begin to learn again! Please keep her in your thoughts as we wait to see some results of our long struggle with Infantile Spasms. THANKS!

Friday, March 20, 2009

Nothing too interesting...

Well.... the only news I have for today is that the girls will be getting a stander of their very own this Friday. It is pink and cute (as much as a big bulky device to help you learn to stand could be). And in a couple of weeks they should get their chairs! So pretty soon we will be a house full of therapy equipment. Oh well. Whatever helps!

Also, Ayva has another EEG appointment on the 24th, and we are praying for some good news. I think I have seen less seizures since the ACTH increase, but I will wait for the results from the EEG to feel hopeful about it. I also made a button at the top left that says please pray for Ayva (it just brings you to this blog, nothing too spectacular).

So in this very short post, I leave you with a few pictures of my wonderful kiddos.
Justin- He took all the shoes out of this box, (that I was *trying* to hide behind the chair) and decided to sit in it! Silly boy!
I found this hat that someone had given us for Justin, he only kept it on for about 2 seconds.
Anna, ready for bed after a CRABBY day!
And I couldn't leave little Avie out of the mix, so this picture is from the other day when we went outside.

Wednesday, March 18, 2009

Way Back When-sday

For more Way Back When-sday's go to Cheryl's blog at Twinfatuation
St. Patrick's Day 2008, what chubby babies I had! They were 4 months old here, 1 1/2 months adjusted. I barely remember the day when I could place them somewhere for a picture without them crawling away....ah, those were the days.
Anna
Ayva
Justin

Ayva, Justin, Anna



Anna
Ayva
Justin

Tuesday, March 17, 2009

HAPPY ST. PATRICK'S DAY!!

HAPPY ST. PATRICK'S DAY EVERYONE! HERE ARE A FEW OF OUR 16 MONTH PICS/ ST. PATTY'S DAY PICS!

***ALSO IN OTHER NEWS*** THE GIRLS' STORY IS FEATURED ON THE CHILDREN'S MERCY MILLION REASONS CAMPAIGN. THE FOLLOWING LINK WILL TAKE YOU TO THE WEBSITE WHERE YOU CAN READ THEIR STORY AND A MILLION OTHERS WHO HAVE BEEN HELPED BY CHILDREN'S MERCY.

Friday, March 13, 2009

Photography

So lately I've been thinking more and more about wanting to become a photographer. I've loved taking pictures since I can remember. So today I tried to take some nicer pictures...let me know what you think (These are before the wonders of photoshop- mine isn't working anymore)

Anna Jeanne


Justin Case



Ayva Verlie

Wednesday, March 11, 2009

Way Back When-sday

For more Way Back When-sday's go check out Cheryl's blog at Twinfatuation

Their first trip to the lake. It was pretty windy out, so we stayed in the shelter of the back of the durango for the most part. I did manage to take some pictures with the new camera I just got, so....

Getting ready to leave...

Anna



Ayva


Justin


Anna's pouty lip...I love that lip!

At the lake...
Ayva


Justin


Anna- screaming. And as you can see, we had our first code brown while out somewhere. One that required a whole outfit change.


Mommy trying to get a pic with everyone


Crying Anna



Ayva's angel face

Saturday, March 7, 2009

Outside time!

Yesterday it was 75 degrees or so, so we decided to go outside for a bit. Unfortunatly, Ayva fell asleep when it was time to go outside, so she stayed inside and slept and only Anna and Justin went out. And since Ayva was inside sleeping in her crib, we only stayed out for a few minutes. They liked it though. I can't wait to take them out more!


Justin



Anna with her sunglasses on


You can see it didn't last long


Justin inspecting the dirt


He found a shell in the dirt




**Update on Ayva** She had a follow up EEG on Thursday and it was slightly better. Dr. A increased her ACTH and she will have another EEG on the 24th. "If", and I really hope it won't happen, but, "if" she has not improved like he wants, then he will increase her ACTH one more time for the course of the treatment. Please keep her in your thoughts and hope this works!!!!!

Wednesday, March 4, 2009

Way Back When-sday

For more Way Back When-sday's go to Cheryl's blog at Twinfatuation.

Not much to say today. These are from March 8th, but they will do. Justin had just bought me a new camera and I was just snapping pics to see how it worked.


Mommy and Ayva. She wasn't very happy at the moment.


Anna


Justin and one of his first smiles. I love the toothlessness of it.



Today we had our second Speech Therapy appointment. It went ok. Ayva had a whole bunch of seizures and didn't do much. She came and watched them eat and then played with them. Anna was a little ham the whole time, trying to bite everything in sight. And Justin of coursd, was trying to sit on her and steal her toys. Needless to say, I'm exhausted.

Oh and I almost forgot to post pics of the kiddos new shoes! The girls are tending to stand pigeon -toed when they bear weight on their legs, so they got fitted for some orthotics to help them stand better. Here they are

Anna's


Ayva's




And of course we got Justin some shoes so he didn't feel left out