Friday, April 20, 2012


WELL..... it seems like when things are "normal" around here I don't post and then when the shit hits the fan, I'm back to blogging....  My sweet Ayva, she's been having seizures pretty steadily for a while now.  About 3-6 a day- some of which make her nap for 2+ hours afterwards.  SO after a 24 hour video EEG we've decided (along with her Neuro) to move forward and have Ayva get a VNS.  It will require a 1 hour surgery that places a device similar to a pacemaker (only not for her heart) into her left chest area under the collarbone and a wire is threaded up to a nerve (the Vagus nerve) in her neck on the left.  The device will be set to stimulate the nerve every so many minutes for a certain amount of time.  This will hopefully interrupt the electrical occurrences in her brain that are causing the seizures.

 So we go on the 25th to talk to the Neurosurgeon and set a surgery date.  She will have to stay in the hospital overnight and the device will be off for about 2 weeks while she recovers from the surgery.  Then she will have another appointment to turn the device on and we will go from there. 

NOW, Monday Ayva had an appointment with an orthopedic surgeon about her hips.  They keep coming out of place and we were referred to them from another doctor.  Let me just preface this by saying I was for what went down.  The doctor came in and had her x-rays from the past couple of years (they had been taking them every so often b/c of her CP diagnosis). 2009's x-rays looked great.  Everything was fine.  BUT the doctor asked me what happened in 2009 that was something severe- maybe an illness or a fall....and then I remembered.  May 2009 Ayva almost died.  She was taking ACTH for her Infantile Spasms and the side effects + lowered immunity from the drug almost killed her.  She was in the hospital for a whole month.  She had been high tone before that, but when she got so sick, she lost everything and became low tone, which apparently let her hips slip constantly out of place every time her legs were in a straight position.   Now, instead of her hip sockets being a "c" shape they are more oval "(" which happens every time the hip comes out of it's socket it grinds the bone down and makes the "c" into a "(".  It's irreversible with out surgery.  Our choices are either let her hips pop out and eventually they won't be able to go back in and it will cause her pain-- or surgically fix both hips by cutting the femur and "ball", rotating it at an angle and reattaching it-- then reconstructing the socket to make it a "c" shape again.  ON BOTH HIPS.  The surgeon said her right hip is 90% out all the time and her left hip is 60% out all the time.

This is a big, big BIG surgery.  It will be a 3-4 hour surgery, 3 months in a full body cast, and 6-12 months for a "full recovery"-- for one hip.  She also said that they may not be able to do both hips at the same time with out needing a blood transfusion.  They gave us a hip displasia brace for her to wear at home that puts her in a "froggy" position-- that is the only way her hips are "in place". 

So, after talking it over w/ the family we are going to go ahead with the surgery.  We don't want her to be in pain (I can tell it's starting to bother her now not being in the brace).  She will have her VNS surgery first to hopefully rid her of these effing seizures and then we will work on her hips.  THEN, I am hoping we can be on the road to recovery--no more steps back--only forward.

As for Anna, her surgeon wants to wait to see if Anna will be able to walk on her own soon with SDR surgery.  So we will wait 6-12 months and then re-evaluate.  I'm hoping that either way she will be able to walk on her own-- hopefully w/ out surgery! :)

Thursday, February 9, 2012

iPhone Photo Dump

Not much new going on around here.  Still patiently waiting for Anna's power wheelchair to arrive.  It should be  I haven't taken any recent pics of the kiddos, so an iPhone picture post will have to do for now ;)
Anna deep in thought w/ my glasses on

Hipster baby

Silly girl

Justin showing off his picture he made! Thanks Ms. Stef for sending it!

Justin and Anna at Sesame Street Live

Anna was so enthralled w/ the stage and lights!

Justin during intermission

Anna, Justin and Mommy

Anna ready for a Dr. appointment

Camryn and her bruised eye- from running into the highchair leg

You can never be too safe!

For as much as she falls down, a helmet is almost needed

He fell asleep w/ the iPad in his lap

Anna standing on her trampoline :)

Sunday, February 5, 2012

I suck at posting

I try- I really do, but I'm just busy and then when I do have a free second to blog, I use it for sleep.

The girls had Rehab Clinic appointments on Thursday.  From that appointment, Anna has an appointment with the Spastisity Clinic April 5th to discuss/see if she would be a good candidate for SDR Surgery.  The whole prospect of that scares me SOOO much, but I can also see it helping her so much.  We'll just have to see how it goes. If you want to read more about the surgery, you can find the link to St. Louis Children's Hospital here.  She will also be getting new DAFO's (leg braces) and will be fitted for a pair of Benik shorts which can be found here.

Ayva has been having a lot of clonus lately so she will be starting a new medicine called Baclofne (I don't think I spelled that right)  She is only on a small dose right now and it will increase next week. So far she hasn't had very many shaky-leg episodes that are unprovoked, like she usually does--so that's good.  She will also be fitted for a hand splint for her right hand.  She keeps that hand fisted most of the time and the muscles are becoming too tight.  OH, and I feel so terrible about this, but BOTH of Ayva's hips were out of place when we got there!  I had no idea!  She hasn't cried or acted like they hurt in any way!  So she popped them back in (easily) and she and Anna both got hip x-rays before we left.  Ayva will see the Orthopedic surgeon on April 16th to see if they want to do anything for her hips. was pretty information filled, but I think I got some good news out of it all.  I'm hoping these next few appointments will give us more hope and more answers!

Skinny Buffalo Chicken Dip

With WW points included!!!!

Skinny Buffalo Chicken Dip   4 WW points per serving
                                             Serves 10

2 packages of Fat Free Cream Cheese
1 c. Fat Free Ranch Dressing
1 c. Franks REDHOT Wing sauce (or any other buffalo sauce)
2 c. Fat Free shredded Cheddar cheese
4 cans canned chicken

Mix cream cheese, dressing, wing sauce and chicken together.  Then add half of the shredded cheese and mix thoroughly. Put in a baking dish and top with remaining cheese.  Bake at 350 for 20-30 minutes.

To save on points, eat with celery sticks! :)