Post Botox days 0-2

Day of Botox:

This is her with her numbing creme on her legs before the shots. She got three in each leg, and hopefully we will see some MAGIC soon!!!

Day 1 post Botox: Everything is pretty much the same. They said it can take up to a week and a half to see results. I will keep posting though :)

Day 2 post Botox: Same as day 1. Although I will say that it seems easier to get her to bend her foot.

Botox it is.

Well, after seeing the Rehab Clinic Dr., Dr. R suggested Anna get Botox shots on her legs. You didn't know there were more uses for Botox other than wrinkles?? Well there is! Some get it for migraines, some for wrinkles and some get it, to put it simply, to put the overactive muscles in her legs (or any muscles but legs in Anna's case) "to sleep" for a while so the muscles that are being overpowered have a chance to get stronger and try to compensate. It works wonderfully...for a while and then the Botox effects slowly goes away. But the hope is that some of the muscles can learn in that time to help counteract the high tone ones. We shall see. Her appointment got moved up to Wednesday from AUGUST!! So I have less time to prepare. I hope it doesn't hurt her too much, I have a feeling she and I will both be crying.

Ayva is doing really well. She is continuing on the Ketogenic Diet nicely and is starting to move her head by herself again!! She can move it forward but isn't strong enough yet to move it back. She is moving her arms with more purpose and now presses buttons and moves a wheel toy! You can tell now that when she looks at you she really SEES you. She smiles more and laughs more! And overall, she is slowly making some good progress!!

Justin is dong well at school (well they all are). He no longer cries when I leave him. He just kisses me and says bye. His teacher says he has a hard time lstening, but I always stay and watch from the secret observation room and I think the teacher just has NO patience!! Which is a terrible attribute to have when working in a special needs school!! She just gets so frustrated so easily. Justin is doing ok with potty training. School kind of messed us up since everyone else there is in diapers. He asks to go to the potty sometimes, so that's a good sign. Otherwise he is doing great and is being a pretty good boy.

Little baby Fields is doing well. Today he or she is 12 weeks 2 days. I've had no real problems, just nausea. Having one baby is kink of boring compared to having three!! Don't get me wrong, I am SO happy to be having one baby. It's just I was spoiled with all the ultrasounds last time and this time I only get two?? And one was just a little dot?? I would like to see what's going on in there! Oh well. My next appointment is June 6th. We are thinking/ hoping it's a boy so Justin has a brother, but either will be fine and we've already came up with a few names we like for each. We will definitly find out if it's a boy or a girl, because I hate surprises!! I can't wait to find out so I can start picking out stuff!! We are so excited!!

Results from Ayva's first EEG since starting the Keto Diet!!!!

NO MORE HYPPSARRYTHMIA!!!!!!!!!!!! WE ARE SOOOOO EXCITED!!!

Dr. A FINALLY called today after some not-so-nice messages left by me. A quick 30 second phone call was all it took to tell me she isn't having hypps. anymore! BUT, she is having another type of little seizure (he didn't say what kind in our nanosecond conversation). He thinks that continuation on the diet will make those seizures go away also! :) We will stay on all the meds for now (Topamax, Depakote, and Tranxene) since she is having these new "little seizures". I call them "little seizures" because that is what Dr. A called them.

So, we are extremely grateful to everyone who kept her in your thoughts, and prayed for her miracle. We hope this is it.

I leave you with a pic of our little fighter!!!

BIG NEWS!!

Justin and I are expecting our FOURTH baby!!!

I am 7 weeks 5 days along and Due December 1st. We are both really excited it's just one baby this time :)

I'm feeling a little sick, but all is well and we're just SO happy!!

Picture Post

This weekend was GREAT! The weather was nice, we got to hang outside almost ALL weekend. Justin made a super nice play area for the kids. It has a sandbox, a water table and a picnic table! They really like it! Little Justin asks me to take him out to play all the time now :)

So here are a few pics from Easter

And a few from our weekend outside :)

It's been a while!

I've been a little MIA lately, but hopefully will be blogging on a regular basis soon ;)

Ayva is doing well on the Ketogenic Diet. She is more alert and happy. You can just see in her eyes she is more "in there", you know? Like the light is on and someone is home. At least sometimes. She has a follow up EEG on April 16th. It will be the first one since she started the diet in February. We're keeping our fingers crossed.

We did have an appointment w/ Dr. A a couple of weeks ago and he asked how she was doing. I told him more alert but also her reflux is better. He said, "Hmmmm." and I said "What?". Dr. A said that usually the diet makes reflux WORSE because of the high fat/ low carb and sugar ratio. BUT when children's seizures either get better or go away, their reflux tends to go away from no seizures.... we are hoping that's the case!

He said that if she isn't having hypsarrythmia on the 16th, then we can start weaning her off the Depakote.

I spoke to him about Anna as well. He said that Topamax (which is what she's on) can have some side effects like poor balance, trouble w/ memory and speech. So on the 16th, he will give Anna a new prescription for another medicine that has no side effects! He doesn't want to take her off meds completely just yet because of Ayva's problems, but a change could be really good for her! I can't wait to see if it helps in any way!

All the kids like school. Justin only cries for a few minutes when I leave now, so that's a plus! We are getting a little antsy about the weather starting to be nice!

OH YEAH! We will be walking in the Trolley Run on April 25th, 2010. It is to support the kiddos school CCVI (or Children's Center for the Visually Impaired). If you'd like to join our team and walk with us, just email me! OR if you'd just like to donate you can click here.

I will leave you all with some new pics of the kiddos!

Purple Day is coming...

This Friday...

March 26th...

Is Purple Day!

Will you join us by wearing purple...

In honor of Anna and Ayva...and all of their seizure friends?!

Click here to learn more about Purple Day
and the extraordinary little girl who launched the event.