Doing good

Brae is doing good. Bouncing right back.
I leave town tomorrow night so dad will have him! Brae has been super clingy this week. He is not to sure about this mom leaving town stuff.

As for the lab test and radiation protocol we are waiting to hear from the doc. The metal anaylsis tests have changed things up but how we aren't quite sure.

Right now he is doing well no fever, no sniffles. I will be back Saturday night I am quite nervous to leave him even though of course they will have lots of fun dad time.

Antibiotics kicking in

Fever has stayed down today, we have gotten through so far with minimal seizures which is such a blessing. He is feeling better today and has been up and about much more than yesterday.

Here we go again

Step and Sinus infection. Antibiotics which of course cause their own problems for Brae. UGH. Doing the Motrin/Tylenol switch every 3 hours.

On the way to the doc

Going to see the doctor to see if they can see what is causing the fever. I don't want to wait and deal with fever induced convulsion seizures. Try to find out what is going on why fever is still under 101 (over that is where our problems tend to get crazy).
I will update when we return.

sore throat and fever

Brae started complaining of a sore throat. I thought allergies. Now we have a fever. Not sure what is going on. He is laying with his head in my lap and has not moved from my side.

Matt and I are going to have to be more careful on what we are discussing. I have been discussing the disturbing lab results and this morning he asked me if he was going to die. Talk about breaking my heart. The lab results are serious but not life threatening. We just have to figure out why they are the way they are and make sure they don't increase more.

I am suppose to be going out of town next weekend with several friends to a home school conference. He is already being very clingy and not wanting me to go. I will only be gone about 48 hours. I hope he starts feeling better soon.

lab work

We received some test results in the mail today. It was from the lab in Arizona we knew they would be coming it was the complete metal mineral analysis. I am still trying to process it (over 20 pages) but the levels are not good.

Broke

My boy who runs full throttle when he is feeling good ran a little too fast. Full fledge into a door frame...broke nose and knot on his head. We are SO thankful that even though he was knocked to the ground from it he has not had any seizures from it.

Clear...again

Rash is gone. He is acting normal. Things are fine as of right now. The doctors are truly stumped. We are keeping a diary of when it occurs what happens when it occurs what we have done before and after so far no connection of any sort.

Better

We had a morning this morning.
We woke up and got around for church. Braden was okay. We noticed his rash was here again but it has come and gone so much we just went with it.
About half way through service my cell phone vibrated...not a good thing. The number didn't show up and I didn't answer 5 seconds later Brittney's cell phone shows up on the caller ID. I didn't answer it I just headed across the street I knew something was up. I got there and they had Brae out in the hallway. One of the leaders is a nurse and Brittney was there. He said his legs were hurting and they said he had been staring out. We left church and before we were on the road 4 minutes we had to pull over. Brae had a significant seizure. I held him in the backseat the whole way home. We had a few more stare outs then home some meds, relaxing and he bounced right back.
Tonight he is fine but we are just not sure what we are dealing with. I am afraid a trip back to Austin sooner than later may have to happen. I am going to get him in to his local pediatrician today but I don't expect a whole lot from that as Brae is a pretty complicated patient. It feels like we are on a roller coaster just when I was thinking okay it is pretty smooth we can deal with it boom hits a loop or a big drop I hadn't expected. I would not be truthful if I didn't say it is wearing on me. I am tired. I am also very very thankful of the calmness we have had. I don't ever want to whine about what we do deal with because as I have said before I am grateful for it because in this experience I have met and seen too many moms who didn't get to deal with things anymore and so I remain thankful but frustrated which I guess makes me normal!

here and then gone again

The rash is very odd, Brae has the docs stumped. Last night it was really odd again. We have went through everything jarring our brains but the docs do not think it looks like an irritation or allergy rash. UGH. It is gone this morning. Very frustrating. Other than this though he is doing very well. Seizures are staying minimal which is wonderful.

He is a puzzle

Rash is completely gone again. I had sent a pic to two different docs and both state they have never seen anything like it. Very hard to describe but it was like little red broken lines coming out from the spine and spreading up to shoulders, etc. So it is gone again and we are on rash watch.

Again

I was just thinking this afternoon that I needed to post and let everyone know that things were going good and that was why there was a lack of posting.

Well...we get home this evening and Britt yells at me to get in her room. Brae has a rash MUCH WORSE than before all over his back and seems to be going down his arms. Weirdest rash I have ever seen. I put some of the lotion they gave me before and I took pics of it and emailed it to two different doctors. No fever, no seizures, nothing like that he says it doesn't even itch but I know it means something is going on as similiar things have been a warning sign before.

Disappeared as quick as it appeared

The rash seems to be gone. It disappeared almost as quick as it appeared. Hmmmmm....not sure what it was. We hope it doesn't come back.

Not sure

Brae is really itching and broke out. Don't know if it is a medication or supplement reaction. Not sure. His skin is SO dry anyway and then this he is just clawing at himself. Keeping medicated lotion on it and even gave him a Benedryl so hoping it passes quickly. I have noticed a few more stare out seizures this week than I did last week as well.

A good week

We have implemented several things this week and so far all are going well.
We have had very minimal seizure activity this week all in all a very good week. He has felt better. We will start another protocol next week.