Caden and Bailey

Caden and Bailey

Friday, October 14, 2011

 It's been very hectic since I last posted and unfortunately this post isn't as upbeat. Bailey's seizures returned in July and although we've increased her meds numerous times & added a new medicine (she currently takes 3 seizure meds) her seizures continue and have actually gotten worse in the past week. We took Bailey to see a Tuberous Sclerosis Specialist at UAB and one thing she recommended was a long video EEG so Bailey will be admitted to the Batson Children's Hospital next week for a 4 day video EEG.
Bailey is now considered to have intractable epilepsy, meaning that currently her seizures can't be controlled by medicine so we're looking at other options.
Right now we are going to pursue VNS Therapy (Vagus Nerve Stimulation). A quarter size device similar to a pacemaker will be placed under the skin on her chest and neck. Basically, the device works by continuously sending small electrical impulses to the vagus nerve in the neck.These impulses then go to the brain to help prevent seizures where they start. She'll have her pre-op evaluation w/ the surgeon next week and will have the actual surgery in about two weeks. If we had our way the VNS would completely stop her seizures and we could take her off of all seizure meds. In reality though, it could be six months before we see any results and she'll probably still have to be on some seizure medicine. Her seizures do not look traumatic and most people wouldn't realize she was having a seizure if they saw her. It's what they do inside her brain that is so scary. Bailey has lost some of her skills and the past few weeks she's gotten really unsteady with her walking. She is falling down a lot and needs more support. It's hard to tell if her regression is from the seizures, from all of the medication or a combination. She is a pretty drugged up little girl but every now and then she'll break through the fog and we'll see her crooked grin or we'll get a giggle. She even said "Momma" a few weeks ago when she wanted me to pick her up. She will only say it every few days and when she wants me to pick her up but it's the sweetest "Momma" ever spoken by a little girl.

Bailey is a "hold me baby" as she was called at one of her therapies. She will go up to anyone that looks like they'll hold her. When we go to therapy I always put her down to sign her in. By the time I've signed her in and walk back to the seat (takes maybe a minute) she is sitting in someone's lap and just laying on their chest. She's such a sweet baby girl.
Going through it all, you learn to put everything in perspective, to not worry about little frivolous things and to not take a second for granted. 

Caden started 4K in August and he loves it. They are already doing some things in 4K that I didn't do till 1st grade! Caden isn't the best at coloring and he really couldn't care less whether he stays in the lines or not. He's such a boy! He's so smart and he amazes us with some of the things he says. He told Chism the other day that his shirt was "aquamarine"...I have no clue where he got that from. Caden is going to be Superman for Halloween and Bailey will be a lady bug fairy or something like that.

We went to the beach in August and happened to be there during the tropical storm. We still had a lot of fun and sometimes you just have to laugh at the situation. I've been really busy w/ work and with everything going on so I haven't taken very many pics but here are a few. The last three are some of the better pics from my attempt at a photo session w/ the kids but they wouldn't cooperate and neither would my camera or the sun.

Please keep us in your prayers in the next few weeks.


Caden loving the waves on the first day
Our little Baywatch beauty on her throne...probably eating sand.

Bailey was recruited as a cheerleader for the blood drive at UAB

Bailey kept her long leg propped like that the entire time.

At the MS Natural Science Museum

Big brother and little sister


Brittany @GreyGreyDesigns said...

Bless her heart. We have been there. Just know that we feel your pain. We just finished our 48 hour EEG this afternoon and I am hoping you get good news like we did! Praying for you all and thinking of you often! :)

Kristen said...

It breaks my heart that you, Chism, and sweet Bailey are having to go through all this. I pray God's healing hand on your sweet girl as you go through the weeks and months ahead. Love ya, and know that lots of folks in Arkansas are praying for ya'll.

Kathryn said...

I am praying Becca! Love to you all!