Also I have a website for my photography. You can go check it out! www.wix.com/saucysarie/sarah
Wednesday, September 16, 2009
22 months
The trio turned 22 months yesterday. Two more months and they are 2. I can't believe how big they are now. Although, it doesn't seem like this year has been moving at all. It seems like we are at a stand still. Tomorrow we will know what Ayva's EEG said, and also we will be talking about weaning Anna off of her Topamax dose. She has been seizure free for 13 months now. I'm sure there will also be talk of putting Ayva on the Ketogenic diet. Which will require at least a 48 hour hospital stay. And also I'm sure there will be talk of the Surgery Clinic appointment she has on the 22nd about a feeding tube. Life stinks. Anyways, we are just taking it one day at a time....so I will leave this depressing post off w/ some pictures.
Tuesday, September 15, 2009
What Infantile Spasms looks like
As I sat and watched Ayva have her EEG yesterday I thought about her poor little brain. It's probably hard to understand unless you know what brain waves look like when constantly having seizures versus not having any. So the first picture is of a child with Infantile Spasms.
Crazy. The lines are jumping all over and what most people call "chaotic". This is what Ayva's brain waves look like. I secretly watched the screen yesterday (usually they turn it to where I can't see it). I just sat there and stared... I knew what it was saying. Ayva is still having seizures even though I can't tell by just watching her. At some times Ayva's brain waves calmed down, and other times it was even more chaotic. I'm sure the Neurologist will tell me on Thursday what that means exactly. If it's better than before she went on the Depakote, we may try to increase her dosage and see if that helps. If not, then we will be moving on to the Ketogenic Diet. I think this is pretty much our last chance to stop these horrible things. Anways, here is a normal EEG so you can see the difference...
The lines are moving still, but aren't jumping all over the page like the picture before it. I think the picture pretty much explains itself. You can obviously tell between the two that one is more "chaotic" than the other. It's just so weird to know your daughters' brain is behaving so erratically. Especially since there is virtually nothing you can do.
Crazy. The lines are jumping all over and what most people call "chaotic". This is what Ayva's brain waves look like. I secretly watched the screen yesterday (usually they turn it to where I can't see it). I just sat there and stared... I knew what it was saying. Ayva is still having seizures even though I can't tell by just watching her. At some times Ayva's brain waves calmed down, and other times it was even more chaotic. I'm sure the Neurologist will tell me on Thursday what that means exactly. If it's better than before she went on the Depakote, we may try to increase her dosage and see if that helps. If not, then we will be moving on to the Ketogenic Diet. I think this is pretty much our last chance to stop these horrible things. Anways, here is a normal EEG so you can see the difference...
The lines are moving still, but aren't jumping all over the page like the picture before it. I think the picture pretty much explains itself. You can obviously tell between the two that one is more "chaotic" than the other. It's just so weird to know your daughters' brain is behaving so erratically. Especially since there is virtually nothing you can do.Monday, September 7, 2009
Justin aka DADDY turned 25 this weekend!!
We've been pretty busy this weekend. Justin turned 25 on Friday and we went out to dinner. Then on Saturday I had a surprise birthday party planned for him! And on Sunday we all went to Santa-Cali-Gon Days! It was busy, but lots of fun!
Tuesday, August 25, 2009
Picture Post
Nothing new is really going on in the Fields' houshold....lots of appointments, busy busy busy. Ayva has a feeding eval on Thursday and next Monday, Anna starts aqua therapy! So I will update again after those exciting things and let everyone know what went down....
Friday, August 21, 2009
Terrible, Terrible news...
A fellow triplet MoM is going through something no one ever wants to. She is watching her precious baby suffer and praying for a miracle. Please keep sweet little angel Annaleigh in your prayers tonight, she needs all the prayers she can get.
www.threecheersforbabies.blogspot.com
www.threecheersforbabies.blogspot.com
Sunday, August 9, 2009
Our 1st Trip to the Zoo!
Last Wednesday we took the kids to the Zoo for the first time! It was REALLY hot, but we had fun anyway!
Thursday, August 6, 2009
Not good news
Ayva had her appointment w/ her Neurologist yesterday. He gave us the results of her EEG from the Tuesday before last. It was not good news. But let me first go into the long story of what happened before yesterday.
Monday Ayva woke up and was acting strange. It seemed like her hips hurt and she cried and jerked every time you moved her. So I took her to the chiropractor and he adjusted her. It seemed to have helped but she was still acting strange. So I had a feeling that she was having seizures again. It was just a gut feeling. I called and her Dr. was out of the country. The scheduled her for an EEG for the next day and would at least tell me if she was having seizures again or not. Well not even 2 hours of us being home, the phone rang. It was her Neuro's nurse. Another Dr. looked at it and said that she was having seizures, but it wasn't Infantile Spasms. Which I thought was good because IS is the worst type of seizure a child can have.... Well yesterday we had an appointment with her regular Dr. to see what type of medicine we should try. He then dropped the bomb on us- she WAS having Infantile Spasms again. The Dr. that read it the other day wasn't trained to read EEG's. He was wrong. So our hopes were up and then of course we were let down. Anyway her Dr. is going to try Depakote and if that doesn't work she will probably go on the Ketogenic Diet. I hope we don't have to go down that road. We shall see...
We also took the kids to the zoo for the first time yesterday after her appointment. It was really fun and REALLY hot. I will post some pics later... I'm not really in the mood after all that... I think a nice big bowl of soul-healing ice cream might make me feel a smidge better....but probably not.
Monday Ayva woke up and was acting strange. It seemed like her hips hurt and she cried and jerked every time you moved her. So I took her to the chiropractor and he adjusted her. It seemed to have helped but she was still acting strange. So I had a feeling that she was having seizures again. It was just a gut feeling. I called and her Dr. was out of the country. The scheduled her for an EEG for the next day and would at least tell me if she was having seizures again or not. Well not even 2 hours of us being home, the phone rang. It was her Neuro's nurse. Another Dr. looked at it and said that she was having seizures, but it wasn't Infantile Spasms. Which I thought was good because IS is the worst type of seizure a child can have.... Well yesterday we had an appointment with her regular Dr. to see what type of medicine we should try. He then dropped the bomb on us- she WAS having Infantile Spasms again. The Dr. that read it the other day wasn't trained to read EEG's. He was wrong. So our hopes were up and then of course we were let down. Anyway her Dr. is going to try Depakote and if that doesn't work she will probably go on the Ketogenic Diet. I hope we don't have to go down that road. We shall see...
We also took the kids to the zoo for the first time yesterday after her appointment. It was really fun and REALLY hot. I will post some pics later... I'm not really in the mood after all that... I think a nice big bowl of soul-healing ice cream might make me feel a smidge better....but probably not.
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