Hanging in There

*Pause music on left side bar before watching videos*

Jace loves to sit in the recliner with JB

Jace's seizures have been so subtle since starting him on the specialty medication, Vigabatrin.

He can interact, respond and function while he is in an episode. Its so odd that even the nurses at the epilepsy monitoring unit couldn't recognize his seizures like JB and I could until they read the EEG.

Last night Jace snapped into an episode after our shower and was out of it for quite a while after. Here is a picture of him in his seizure - you can kind of see the blank look he has on his face.

He is there but he isn't there

We always hold and hung him while he goes through these

I caught a clip of him as well. I like to record him with my phone where he can see himself when the camera is rolling and normally he is all giggly and enjoys watching himself. This clip you can tell he sees himself and is listening to me but he really isn't quite "there"

Then about 10 minutes after this he is back to normal, a little out of it but better and playing. You can see at the beginning he smiles at the camera.

So, after talking with JB about the increase in seizures we have seen with Jace lately we decided we should at least call his epileptologist. They are still not as bad as they used to be but the fact that they slowed down to where we didn't see seizures for day and now we are seeing up to 4 a day (on the weekends) is not a good sign in our eyes. I put a call into the nurse and she spoke with the doctor immediately. On a side note I love how well this doctor and her nurse cares for the patients and parents. We are never pushed aside and every issue has been resolved quickly. I have never felt more cared about before by a doctor!

Well, the nurse calls back and says we need to get Jace's blood work taken so they can see how high the levels of his medications are in his system. The reason being is the levels can be too low = non therapeutic, too high = toxicity and can cause seizures or just right = seizures are breaking through. I know when we get those numbers back it is going to show that Jace's levels are too high and we will have to start weaning him down off the meds. He has been healed by God and I KNOW he will be taken off these meds.

All my prayer warriors that read this blog - I know there are some out there - please pray for this outcome.......pray that God has answered our desperate pleas that we pray for each and every night with Jace and every time we pray!

This morning I took Jace in for his blood work. After it taking 20 minutes for the tech to figure out what they needed to draw for we got started. Vigabatrin is a very special medicine that isn't widely used so it is not a normal blood level test that is run. The tech had to call the nurse and I love that the nurse doesn't accept ignorance. Had the tech read the orders well enough she would have seen the test had to be sent out to another lab that CAN test for this. The blood was drawn, Jace did a great job - he cried but he was a big boy and didn't fight me holding him too much. He isn't falling for the cheering after events like this anymore......he gives you a look like Why in the world are you cheering when that HURT?!?! LOL Its not funny that he has to deal with this BUT its funny how he is growing up and learning to have his own feelings and opinions! OH and he is very matter of fact about his feelings - that's for sure!

Since I was instructed to not give him his meds until after the blood work I had to bring his medicine with us. We get back into the car and I get ready to give him his meds when I realize that I forgot the pill crusher! Grrrr.....I was MAD - at myself! How in the world could I forget one of the most important tools I use for giving Jace his meds. Not a huge deal - there are pharmacies I can get a new one at. The main issue was I expected getting Jace's blood drawn would be quick and I wouldn't miss much work to get this taken care of. JB always tells Jace that when he has dr appts or something of the sort that day then we will get donuts in the morning for breakfast, so I still had to stop and get him breakfast too. I stop at a CVS, get Jace out of his car seat go in to find they were sold out of pill crushers.....WHAT?? are you kidding?  I put Jace back in the car finally after he fights me AGAIN - apparently he was "all done" with the car today. I texted JB to vent about my forgetfulness and then CVS not having what I need. At one point I asked him "When are we going to just get a break?" I was thinking that I am tired of all this and I wanted so bad to just "give up" in a way.  I drive to a Walgreen's and they had a pill crusher. It was nearly $9 but I had one and that's all I cared about at that point. Again after fighting Jace to get him back in the car I finally went and got Jace donut holes (and Bavarian cream for me of course!!). Gave Jace his meds, dropped him off at daycare and headed to work.....finally!

Enjoying the yummy donut holes and chocolate milk

On my way back to work I get an email saying I had a message sent to me on facebook. It was a short but VERY powerful message from a lady that seems to always come and tell me what I need to hear, as if she were an angel sent to me from God. Her short but sweet message titled Hang In There said this "Holly don't give up...God is going to use your little one for HIS glory...keep your FAITH strong... "

Wow! God knew I needed to hear that and it was loud and clear! After that message I decided that I was done with dealing with the day, and everything - I was reminded to just hand it all over to God. I need that reminder quite often as my control freakish side takes over at times - especially when anxiety sets in and I get stressed out.

Today ended up being a good day....busy but good. I went and picked up Jace from school and some of his artwork was ready to be sent home. I HAD to hang this one up because it is the epitome of a BOY masterpiece! Presenting to you - Jace's Mud Painting

Clumps of mud and all!

Jace has been eating better lately and even ate my Mexican casserole tonight. He is so silly sometimes and I love to catch video clips of him.....here are a few from tonight :)

Mmmm.....thats Good!

Jace loves Addi's invitation and he gives her kisses

Jace being silly with mommy and dancing.....before telling me "all done"

Jace watching himself int he camera.....making faces :)

He is getting to be too big -

He goes and sits on his couch to read his book "Where Do Kisses Come From?"

Of course he throws the typical tantrum at the end of clip :)