24 hour EEG

Friday mid-morning I got a call from Dr. Williams nurse saying that he agreed that Seth needed another 24hour EEG to figure out if the breathing episode that Seth is having are in fact seizures. Well a few hours after that I get a call from scheduling and I figured it would be a few weeks out oh boy was I wrong. They wanted me to go in that night. I couldn't do that especially with 2 other girls and knowing that these can go past 24 hours I needed to line up some help. So I agreed to 6am on Saturday morning and let me tell you it was insane! We had to go through the ER and they had no idea what was going on and then finally when we got to a room I think it was 11:30am and I think it was around 1:45 when they finally got him all hooked up and ready to go. The night was not as bad as our first 24 hour sleep study. They brought in this padded gate thing and two mattress so he can crawl around and play and also sleep in there, which is what he is doing right now :) I was up about every hour and he slept way more than I did. The lights have to be one and that was the most annoying part because Seth loves light. His room at home is so dark at night and most of the time he goes right to sleep but here they let the lights off for a few minutes until he falls asleep and then they rush in and turn them on...SO ANNOYING!

Anyways I have no idea how long we will be here, as of right now he has had is normal spasms which I do not even press the button for (someone has to be in the room at all times to press a red button every time he has a seizure so they can mark it on the EEG and video) well last time I had to press it for the spasms and they were in here all the time and when you press it ALL the lights come on super bright and they run like crazy people. So this time I am not even pressing it for those only for the "tonic clonic" seizures and then these new breathing episodes. He has had 1 tonic clonic this morning and so far no breathing episodes. So this could be a long haul. As much as I would love to be out of here today I am thinking that will for sure not happen. Prayers that I get some much needed sleep tonight.

Musings & Events.

Hey Friends!!!


We really need to be better about posting on Seth's blog but let's face it - life is BUSY! I thought Id do a quick event update and also share a few thoughts with you on this glorious Tuesday morning!

First off - Seth is turning 3!!! I cant believe it's been almost three whole years since I witnessed the birth of this beautiful boy - and what I three years it's been! In honor of Seth's big day, we are having a ColdStone fundraiser on June 20th. This will be held at the same shop as it always is, at Val Vista & Baseline in Gilbert.We will post a big announcement & details as the day approaches but for now - mark your calendars!!! 


Okay, next. Ramblings.


Ive been thinking a lot lately about CMV. Being pregnant again with our 6th baby of course brings about thoughts of all the risks and scary things that can happen to a baby in utero - CMV being one of many viruses that can pass through the placenta and one of many many things that can go wrong. 


Ive really noticed over the last few days that there is a lot of fundraising going on for things like autism, cerebral palsy, epilepsy, etc. Millions of dollars have been raised to either research a cure for these ailments or to simply provide help to make life easier and more comfortable for those suffering with these things. That's amazing! It beautiful to see people giving up their own time & money to help the plights of others. The question milling about in my mind is this: What if we could STOP these things from happening? Are we spending all of our time and money trying to fix something that could be prevented entirely?


Each year, at least 30,000 children (1 in 150 in the US) are born with congenital human cytomegalovirus or cCMV. Most babies go home from the hospital with no indication whatsoever that they have been infected with this devastating virus in utero. Most will never show symptoms at all. But maybe they do. Maybe a year and a half down the road, they make it onto the autism spectrum. Maybe at age 2 they develop epilepsy. Maybe they simply have ADD or hearing loss or have severe learning disabilities. CMV is the number one cause of birth defects and physical as well as mental impairments. and yet you would never know your child was infected with CMV in utero unless testing was performed AT BIRTH. Unfortunately, we dont do that here. A simple cheek swab or urine sample would suffice, but because there is no vaccine and no way to prevent CMV, it's deemed pointless to do that kind of research in the US.


The number of known CMV cases each year is huge. It's startling, really. It could be the major cause of autism, CP, epilepsy, hearing & vision impairment, and a host of other things that plague our children - and adults - every day. Yet, most people have no idea what CMV is. We have to raise awareness. We have to get funds flowing in for CMV research. The only way to stop this virus is to find a vaccine. The only way to find a vaccine is to fund research - and that is just NOT happening for CMV.


If I was a famous celebrity with a CMV baby, the whole world would know about it. The whole world would empathize, be on alert, and throwing money at this cause. But Im not. Seth isnt the child of a famous woman, but of a normal girl who happens to be my best friend. He's is still worth it. All of our children are worth the time, effort, and money it will take to raise awareness and - eventually - bring about a preventative vaccine for CMV. 


For lots more information, please visit www.stopcmv.org . Donate if you are able, and spread the word - facebook it, post it on your blog, buy a Stop CMV bracelet and tell everyone you see what it's about. Help us protect the children of our future by stopping this virus in it's tracks.


*Please note: Im not trying to say your child is autistic or has CP or anything else because of CMV exposure in utero, so please dont try to lecture me about MMR vaccines and chemical exposures and oxygen deprivation. I know enough about all of those things. A link between congenital CMV and autism was discovered & noted as early as 1991...why isnt this information out in the public area? This is what Im asking. This is why we need to raise awareness immediately. CMV can directly account for every single disability that is not chromosomal or genetic - which to me, warrants a hell of a lot more research, right now.


Thank you for being a friend to Seth and a supporter of this precious boy & his family! You are all so very loved & appreciated!


Blessings.
~LISA