Doing good

Brae is doing good we are just all so tired and wore out.

Poor Brae had a rough day Friday and it had nothing to do with his medical issues. He accidently stepped on our little dog and broke his leg. The dog is back home now with a cast on his leg but poor Brae felt so bad. Today him and I went to pick up Tex from the vet and he had to stop at the dollar general and get Tex a present. He was so worried Tex would be mad at him. Which of course he wasn't he crawled right into Brae's lap and was fast asleep.

Monday we start implementing some new ideas and medicines from our visit in Austin.
Right now we are just trying to get some energy back and get rested up.

Home

Brae and I made it home.
Trip home was much less eventful than the one there! That was fine with me.
I am tired but glad to be home.

Good news

Today was our results day. Like I told Matt I think the results were as good as they could be without them just saying nothing is there anymore and it was all gone. Since that didn't happen I will take the results we got!
Don't want to sugarcoat it he still has a lot to do as far as more radiation, etc. BUT things are going really good as far as MRI's and all the tests show.
We still have some issues but I think this is the first time in so long that the tests didn't give us a new issue if that makes sense. I guess that is one of the reasons I am so thankful. There were no new masses, no worsening results things were either better or the same. EEG results were abnormal but no more abnormal than last time. MRI showed good improvement and we will continue radiation.

I am just very thankful and want to praise!

Monday in Austin

Okay now we are doing better they did tons of detox stuff today. They did a test and he did have pecticide poisoning. All from unloading(playing) in a truck load of mulch at my parents house on Friday. Crazy that he had the reaction but he was laying in the mulch and playing in it full out so I guess it was just too much with his sensitive system. He is already feeling better they are doing what is called a liver flush detox thing and then he should be doing good. I can already tell he is feeling better. So now we can deal with the reasons we came here but at least we have a reason for the seizure and fevers and he is doing better so I feel better.

We did get the MRI and all the tests done today. We will get our results tomorrow.

Kelli

In Austin

Our 8 hour trip took 11 hours but we made it.
The past 2 days Brae has been running random fevers. We had not had any convulsion seizures just stare outs. Brae and I started out this morning for our doctors appointments in Austin. Almost 3 hours from the house I heard a sound and adjusted my mirror, Braden was seizing. I immediately pulled over and got him as much room as possible so he wouldn't break the window hitting it with his head. It last about 3 minutes. He responded well after it ended. I began trying to figure out what to do we were 30 minutes from the nearest town Atoka and about an hour from Durant the next biggest town. I got in touch with our Austin doctor he called in a prescription to the next town for Ativan to get him on as well as a refill on our Diastat. I assessed the situation again in Durant. After leaving Durant and getting the meds in his system he has been fine and the rest of the trip was uneventful. It was quite frustrating and I felt helpless being that far from a hospital. Thankfully we were blessed with a relatively short seizure and fast recovery time. We had debated to go into ER upon our arrival here or to go to our regular appointment. We confirmed with the doctor and since at this time he has no fever and is awake alert and doing fine we are waiting until the morning. Unless something changes tonight which we were blessed our doc was on call.

Fever

Brae and I leave in the morning for Austin. This afternoon he is not feeling well no symptoms besides a fever. So far no grandmal seizures but several petite mal.

Prayer Request

Brae is pretty nervous about going this week to the doctor. Him and I are on our own this next week. Our appts will start at 7am on Monday morning with an MRI. That is where it all went haywire last time so that is a little stressful for me. However after that we have a few other tests. It will be a day of docs. Then Tuesday we should be able to sit down with our doc and whoever he deems necessary and discuss results. We have had a friend move to Austin recently so she will be able to help with Braden. That is such a blessing! She has 6 boys so Brae will enjoy his time with her while I am in conference with the doctors. We ask for prayer for a safe trip and that both our nerves are calmed and that a good appointment will be had with clear direction on where to go next.

A great day

Brae has had a pretty good week healthwise. Today he had a great day. Brae doesn't always do well in a lot of things for several reasons one being he has so many staring out seizures it is hard to concentrate and stay focused. Anyway today was the home school science fair. I knew that he had fun doing his project which was seeing what made soda lose it's carbonation faster (ice, room temp or hot). I wasn't sure about the judging part where they asked questions, etc. Well he did great. He won 1st place! This did so much for his confidence. He was so excited with the cash prize he wants to take it next week to Austin so he can add it to whatever his doctor prize will be!

Up and down

Right now things are so up and down with Brae. He may have super energy and wear us all out for about 3 hours and then bottom out and start running a fever. I realize that is all normal but it is very hard. Hopefully when the radiation is done we can get some consistency this up and down is exhausting. His seizures are better this week so for that I am very grateful. At this time he is in a down point running a low grade fever but not having seizures with it so that is a good thing.

Doing good

He is doing good. We have one more radiation treatment before we leave for Texas appt on the 22nd.

Up and going strong

He is anyway. I am popping excedrin and trying to get my day organized when all I want to do is crawl into bed. No fever everything looks good no seizures in his sleep.

He is up and full of energy. I mean FULL OF ENERGY. Hugs and kisses and I am fine mom.

Hmmm maybe I will have to try over 12 hours of sleep and see if it makes me that energetic and perky.

3 am and all is well

He hasn't been running a fever since about 1:15. No seizures. He has been sleeping very well. Even mom constantly touching his forehead and watching him like a hawk has not disturbed him. I am thankful he is getting a good rest and hope that he wakes up refreshed. When he wakes up feeling better I am taking a nap :)

Won't be much sleep tonight for me

Brae is not having a good evening. I think it was too much today.

We went to a scout meeting this evening and I ended up having to leave early he was just feeling so bad. By the time I got him home he was dizzy and running a low fever. He wanted a smoothie so of course he got one he had it and could barely keep his eyes open. He is asleep now but I am on guard duty watching to make sure no seizures as he sleeps. I am hoping a good nights rest and some of the supplements he takes will help him feel better tomorrow. I pray for an uneventful night and one of rest for him.

Another day

Brae got up this morning and said "Another day another doctor"...bless his heart I know he is tired.

This morning started with the eye doctor getting his eyes dilated which is no fun. But he is having some issues with his eye turning in even with his glasses on. They are treating aggressively by increasing glass prescription. This is to keep the eye straight problem is it makes his vision which was normal before all this started to diminish. But right now we will order new glasses tomorrow. He will try to adjust to them for 2 weeks. If he can't adjust and see with them we will go back. If he can then we will keep him in them 6 months and see if his eye straightens. If it does not we will talk surgical options. He flipped when he heard her mention surgery so I had to calm him and have him play his ds in the waiting room while we finished talking. I haven't discussed it with Matt but I am assuming we will get at least one more opinion before surgery is even seriously discussed if the glass increase does not work.

He has another appointment this afternoon with another doctor.

He was happy because he got to go spend his Toys R Us gift card so that made the doctor appt much better.

Happy boy

He may be sick tomorrow from overdoing it today but he was so happy today. He played soccer for the first time. He may be a little slower and not as skilled as the other boys but he had a grin on his face from one end of the field to the other and it never wavered.
I am so glad that our doctor told us it would be okay (of course no heading the ball).
Today he wasn't sick today he wasn't going through radiation today he was loving that he could play a game. Here is a pic of the VERY happy boy. We all had on shirts that said "Braden's Mom", Dad, and Sis. We cheered loud! His team won 5-2.

Just when he needed it.

Brae is doing good.
Radiation is at 55 now. This is the highest it will go.
We will leave on the 22nd to go to Texas for doctors. Just Brae and I going this time. Matt will keep Britt here and keep her school going, activities, etc.
Brae was pretty tired today and the mail came. He got a special surprise in the mail. He perked right up when he realized it was ToysRUs card he wasn't tired anymore he was ready to go..LOL. It was cute.

Waiting to hear from a doc

Waiting for a return call from a doc I think that is a daily thing for me or at least it seems to be.

I did speak to one doctor yesterday and we made a few changes and he did do somewhat better yesterday. We did not do radiation yesterday we will do it today as I was still too concerned yesterday especially since they were raising it.

We are trying to see if it is necessary to go back to our Texas doc earlier than planned. So many things and so many docs involved makes it quite a balancing act at times. But each doctor we feel led to use and feel that he needs them all even if it does get touchy at times.

Just a feeling

Something is up. One of those feelings that I have learned not to discount. Brae is just not himself and the stare out seizures are coming rapidly. I am watching him closely and will evaluate in the morning if I need to call a doctor and if so which one.

We didn't make it to church this morning. I am having a terrible time with migraines and add in the extra worry of Brae being off with his usual hard time at getting up in the mornings we just couldn't make it. We are staying home all day where I can watch him closely.

We will be praying to be shown what is going on with Brae as I am certain something is off. He had that sinus infection and it may be something as simple as the antibiotics countering his other medications in his system. Also this week radiation will be raised to 55. Which is very high maximum is 60 because over that the radiation can cause more issues and cancers etc.