WELL, let me start off by saying, "I can't believe anyone could function without sleep!" ACTH has been a demon in the houshold and has done Ayva some good and some bad. Her BP was up so now she is on blood pressure medicine (and yesterday's BP check was excellent). It has made her have SEVERE joint pain and is on a stronger form of Motrin (it has made the screaming a little less). She also has ANOTHER ear infection in the same ear as last time and is on a medicine for that. AND, to top it all off, she has thrush from all the medicines!! Wonderful....right? Not to mention, she has had a bear of a time sleeping! Which meant, mommy didn't sleep either. I think I'm almost as exhausted as when they were little and waking up every three hours! Only this time Ayva was awake ALL night and then the other 2 were awake ALL day, and I was the only one to take care of them! BIG thanks to my mom for leaving work the other day and saving me!!! LOVE YOU MOM!!
We surprisingly had a Warranty on the Durango still and it will cover a BRAND NEW ENGINE! I am so excited! All we have to do is pay a $100 deductable and it should be done by Friday or Saturday!
Sunday is Kansas City's March for Babies Walk!!! We are SO excited to get to go this year. Last year, the kiddos were still a little too young, and I think it was a really cold day, but I can't really remember! LOL. A friend of Julie's is letting me borrow her triple jogging stroller for the occasion and I'm REALLY excited about that!! I will definatly post pics of our day! So far walking on TEAM FIELDS TRIPLETS is: Myself, Justin, the kiddos, my Mom- Janis, Julie and her neice Makenna (aka-Little Justin's girlfriend), and Amy. Hopefully some more people will join our team before Sunday!
And as always- Pics From This Week!!
Plus one from a long time ago that is just funny:
The sun was in her eyes. lol
So then I moved in to block it and she opened her eyes!
We are just trying to lay low until we start to wean of ACTH. So there isn't really much news on that front. Ayva is tolerating it pretty well, although she is now on a blood pressure medicine. Hopefully all will continue to go well.
News on my car: Sears has decided to send my Durango to Dodge and see if they think it was Sears' fault or mine. They called today and said that the whole engine was "tore up" and that an engine like mine (with around 75,ooo miles and a hemi) would NOT have broken like that. SO they will be calling Sears and telling them that it is their fault and HOPEFULLY I will get a brand spankin' new engine!
And of course some pics from eariler this week...
My attempt at "official" 17 month pictures
Ayva Verlie (poor thing is gaining weight and is generally not feeling 100%)
And some pictures from yesterday and today of Anna. The first one is from last night. She was sitting SO well and then found her toes.... She is acting JUST like my cousin Heather...lol.
And this is from this morning. She has been rolling all over the place and this is how I found her...
TODAY'S EEG WAS WONDERFUL! BUT LET ME TELL YOU THE WHOLE STORY:
We get there at 930 am and she is NOT happy. After all the electrodes are put on her head, she has a huge screaming fit, but after about 5 minutes, she calms down and goes to sleep. She hadn't had a seizure since the morning before, so I thought she wasn't going to have any. Then they turned on the flashing lights (which they do every time and it never bothers her) and she has like 6 seizures in a row! I thought to my self, "Awww, man" and then I tried not to let it get to me until Dr. A got a chance to talk to me. We make it up to the Neurology office and we wait AN HOUR in the room for him to come in (he had an emergency case)! He says that it doesn't look good and he is taking her off of the ACTH. She will have to be admitted for 48 hours and start on the Ketogenic Diet. I about cried right then. How could this be happening... and then as he stood up to walk out the door and get the ball rolling on the Keto Diet, I said, "I just don't get it. She has been having 1 or 2 seizures a day, but today she's had more than she's had in a long time." He said that the results of the EEG would be up by then and he would go take a quick look and then we would talk more. He busted through the door and said, "FORGET EVERYTHING I JUST SAID! Her EEG looks GREAT and she isn't having any hyppsarythimia (an abnormal brain wave associated with Infantile Spasms)! He said that since it was gone, it will NEVER COME BACK!!!!!!! Dr. A is going to increase her ACTH instead of take her off of it and that should take care of those last few lingering seizures. THANK THE LORD!!!! I ABOUT PASSED OUT.... this was the one thing I prayed for and am so thankful that Ayva has been strong enough to fight this battle. But the only thing is that the ACTH is making her blood pressure go up and she will have to take blood pressure medicine mostly as a precaution (it was a little high today, but we are giving her the med so it won't go up any higher).
THANK GOODNESS THAT WE ARE WELL ON OUR WAY TO BECOMING COMPLETLY SEIZURE FREE!!!!
Thank you from the bottom of my heart to everyone who has prayed for Ayva. I cannot begin to form the words that can explain how much I am thankful for everyone who's been there for us!!!
The title of this post pretty much says it all. Tomorrow is Ayva's follow-up EEG and it will probably be her last day on a full dose of ACTH. While I am thankful that we decided to give ACTH to her, the side effects have been catching up to her. The poor baby is angry ALL the time, she can't sleep, she is STARVING (which was the least bothersome since she needs to gain weight), her blood pressure is on the edge of being high and the injections themselves are leaving little bruises all over her little legs. Seizure wise, she has gotten a lot better. She is no longer having clusters of seizures all day and all night. She has 1-3 singles "spasms" a day now and they usually occur in the morning before she has had any of her medicine.
I am so nervous about the results tomorrow. I don't know if I can take anymore discouraging news. I just feel so bad for her- trying to learn something all day, only to have it taken away more swiftly than the split second the seizure comes and goes. It's not fair. For 10 months she has fought this battle and she is still in this "limbo" state as I call it. It.s like she's in there, but the seizures make it virtually impossible to do anything. She can't hold her head up, or sit, or feed herself, or anything. It's just about the worst thing a mother can see her child go through. It's kind of like she's trapped in her own body and for all I know she is scared, or sad, or frustrated. Maybe she's in there asking me WHY? Why once she works on something all day does it get taken away again...
All day my thoughts are consumed by this terrible condition. Every.single.thing. all day long makes me think of it in some way or another. Like last Thursday- Justin and I went to Target. We were just walking through the toy section and I saw a cute, girly play kitchen. I opened my mouth to say, "Oh, I can't wait until the girls would like to play with something like this!", but I stopped myself because they may never get/want to play with something like that. Ayva especially. These seizures could leave her with severe disabilities. I also was reading a newsletter about the community classes that were being offered this summer and thought of when I was a kid, and I took a dance class. I wanted SO badly for my girls to be able to take a dance class....but they may never get to. Every little thing brings me back to how unfair and depressing this whole thing is.
What is even more depressing than that is the fact that nothing seems to be working for Ayva. We got extremely lucky with Anna. The first medicine we tried did the trick and she hasn't had another seizure since August of 2008 *knock on wood*. But with her identical sister, who has all the same things as she does, all of the medicines have not worked for her. I know that they are two different people, but I just wish it would work the same, you know? Ayva has been on Prednisolone, Felbatol, Clonapin, Vigabatrin, Topamax and now ACTH. For the past 2 months she has been on Topamax, Vigabatrin AND ACTH all together! I thought for sure if they didn't work alone, the combination of the three would make them go away! But that would be too easy, wouldn't it? And nothing is ever easy. So I don't know where our next step is going to be, but I can honestly say I am scared about it. I think, and I don't know for sure, that our next step would be to go on the Ketogenic diet. I don't know a whole lot about it, but what I do know is that it is a very strict diet, and that it may not work no matter how hard we try. The Keto diet is a very strict diet where Ayva would have to eat certian things and NOTHING that wasn't allowed. She would have to eat every bite of every meal and Ayva is just not a kid who would do that. She isn't the pickiest out of the three, but she isn't the greatest eater either. The nutritionist at the hospital said that she would probably have to get a G-tube so that what she doesn't eat would still get in her tummy one way or another. I SO do not want her to have a G-tube and am trying to avoid that if possible.
So tomorrow is a very scary day for me, not knowing which path we are on, or where that path is leading us.