Yeap, we bought a house in Saratoga Springs Utah right down the road from Jaren's brother and sister and their families. We love the location. Abi gets to share a room with her little brother, Max, and it seems to work out just fine most nights. Abi's demeanor has changed to be the most pleasant little lady. She smiles a lot and seems to be very aware of what is going on around her, although she still cannot show us physically. She smiles when she gets attention and can even watch someone cross the room at times! Of course there are times where she still throws her fits and holds her breath, but most of the day she is pure joy. The breath holding things she does, as I just mentioned, are still around and sometimes just as severe, but don't seem to be anymore frequent. The still do tend to happen most around times when she is extremely sleepy or hungry. The hungry one we can combat most of the time by keeping up on her feedings, but the sleep one...well, she's on her own for that. We can try everything but if she's too worked up to sleep she just won't. So on those nights we will put Max to bed and let Abi fall asleep in the front room before we bring her to bed so we don't wake up her brother and have 2 angry babies. But overall, she is just as happy as can be. She coos all the time too. Like right now she is just hanging out in the front room talking to herself. I love it.
With the move to Saratoga Springs came new jobs - or really the new jobs elicited the move to Saratoga..but same thing. Jaren now teaches CTE (Career Technical Education) - Computer Tech to 9th Graders and I teach PE 1st-9th Grade and 7th Grade Health. So far so good! I'm really enjoying it. Due to the hours that Abi's dad and I are away from the house we had to find child care. We at first found a really good day care that we would have felt very comfortable with and were about to sign up with. I was worried that with my past time management history I would have a hard time getting the kids up, dressed, drugged (with anti-seizure medicine...it's just what I say, I don't mean it derogatory) and out the door in time to make it to school in time, but I was willing to try.. About a week or 2 before I was going to call that daycare back and reserve our spots I went to a friend of mine's wedding. While there visiting with his family (whom are all also good friends) his youngest sister offered her services as a nanny! It was the best thing that could have happened! Taylor fit right in with the babes and they took to her without a second thought. She is so good with them and, like I said, they seem to really like her too. Also, it's wonderful that I don't have to worry about waking the kids up in the morning. I can just get myself ready and let them sleep. Or, if needed, she can take over the morning feeding while I'm finishing up trying to get ready to get out of the house. I sure do miss those little dweebs while i'm at school though, but the break is nice too.
You heard me right...we've decreased her Vimpat by 50% since my last post! (the second 25% happened just this morning, so I guess I shouldn't speak too soon about still no seizures). So far this year we have made 4 decreasing steps on her medicines all together and have seen no changes in seizure activity! That is SO cool to us. We pulled back on her Vimpat by 15mg around February/March then pulled back her Keppra by 70mg in April. 2 weeks ago we pulled back her Vimpat again by 8mg and again today by another 7mg. If things continue the way they are we can be off of her Vimpat completely in one month! 4 more weeks! That would be way too cool. Then after a little while of that with no changes I would be willing to look into coming down on her Keppra too and see what happens there! Keep us in your prayers. I would love to get her off as many meds as we can before we start the CBD/Cannibas/Hemp/Charlotte's Web Oil in October.
OH YEAH! I forgot to mention that in the beginning! You know my Neurologist who was against the oil a few months ago? Although his opinions have not changed immensely about the oils, his leniency towards it has. He has submitted our paperwork to the health department to get our Red Card! I called them last week and have a meeting with them this upcoming Wednesday to go get it! I'm so excited! We are all set to be in a good place to get off the wait list come this October with the next harvest. We are number 1,190 on the wait list (I know, crazy right?) But they have a goal set to get 3,000 people off of the wait list with this next harvest. Even if they only get half of that number we are still up there! But, like I said I want to get off or at least decrease any med before then because our doc has made it very clear that once that gets started he does not want us making any changes with her meds until we can get a really good clear idea of what effect the oil will have on her, if any. Obviously we would love to see even half of the results we've seen other kids have with this oil, but we also realize every child is different and so we are cautiously optimistic about it. I don't expect it to be our silver bullet, but that sure would be nice!
Even though her seizures have decreased to non-existent, there has still not been very much physical progression. We are hoping that by coming down on the meds we will start to see some more, but who knows. We have, in the works, a routine EEG to take a look at her brain and see if there is any normalization there at all. I'm hoping that will give us a good picture of what to expect the next couple of months based on the activity that shows.
But, as you can see, things are going very very well over here, especially for Abigail. Max is doing wonderfully as well. He definitely does not have any delays..if anything he's a bit ahead of the game. He's 4 months and rolls all the way around like it's nothing. He's already working on trying to sit up by himself. He loves to stand whenever possible and has pretty good control of his hands. He loves to suck on his hands and also plays with his feet. He also right now likes to sleep on his belly. He will fall asleep much faster on his belly than his back. Actually, if you lay him down on his back he will roll to his belly then fall asleep. It's actually quite comical. This kid is too much. He's so smiley and as happy as his sister! I love to watch him learn, you can see it in his eyes. I'm very biased but I feel like his presence is just magnetic. He's already got quite a personality.
I think I said this in my last post, but his doctor told me that some mothers get discouraged when they have a normal baby after a not normal baby because we begin to see just how delayed the first one is. I can totally see how that would happen to a woman, but in my case, it doesn't discourage me. I honestly do not feel like I've missed out on anything with Abigail. I honestly believe she is sheer perfection just the way she is. Besides all of that, she still has this captivating personality that she is who she is supposed to be. Besides that, I still hold a glimpse of hope that one day she will eventually progress. I don't know how much, or when, but it will happen.
This is AbiNormal
"someone help me please" - Max
