Update......I know finally!

Things are fairly steady right now....I will take steady rather than the the ups and plunging downs of the last few years.

Braden is having a lot of emotional difficulties right now but we are working with him in several areas.

As for health wise to sum up as quickly as I can:
Liver - Wilson's disease is very controlled right now which is such a blessing. His liver function numbers are all pretty good right now.
Arthritis - We have had to start him on medicine for his rhuemetory arthritis but it is very low and he is doing well with it and is not having pain from the arthritis which was our main concern.
Brain - He does still have the mass but it is still believed to be benign or scar tissue build up it has not increased in size and we are watching it very closely.
Seizures - Very controlled right now...YEAH!

Speech - We graduated speech therapy woohoo! He is still difficult to understand when he gets in a hurry but for the most part he does very well. I just have to remind him to slow down some but that control will come with age.
Vision - still quite an issue but we are making some progress just very very slow progress. He is finally starting not to see double all the time so that is huge.

We go back to Texas for our next round of appointments in June.

Arrived

It took me over 7 hours to get just as far as Dallas yesterday. That part of the trip to Austin usually takes around 4 hours. Thanks to a freak ice/snow storm in Oklahoma in MARCH! Ugh I have to drive across a huge mountain to get to McAlester OK and it was awful. Lots of semi's over turned, and the whole way to Dallas the kids and I were counting cars in ditches we quit counting at 76. Thankful we made it safe.

About to head to our first appointment.

No posts are actually good news!

I haven't posted in so long but that is actually a good thing.

Things are pretty stable at this point. I say this with fingers crossed and prayers going up as next week is our week long appointment in Austin for all his check ups. He sees his nuero, liver doc, nutritionalist everyone next week.

The kids and I leave tomorrow morning. Matt has to be here to take care of his dad who is not doing well so just me and kiddos this trip. Hoping it will be nice and uneventful like the last couple of months have been. I will update the blog probably mid week as we have tests on Monday and will take a day or so to get all the results.

Back to Texas

Brae is doing really good....so good that while I am thankful I am also almost waiting for something too. Been doing this so many years now and it is hard to be doing so good for this amount of time.

Brae and I head to Texas tomorrow. Britt will stay here so she can have dad time and he can get her to basketball etc all week. This is a big check up for Brae several appointments to check how he is doing blood levels, MRI, scans, etc etc.

Doing Good

Braden is doing very well.

He has been super emotional the last few days so not sure what is up with that he may not be getting enough rest. He requires a lot of sleep with his meds, etc and I have been waking him up because of this or that so hopefully that is all that is.

All in all just trying to keep him well. Staying home a lot and venturing out only with my travel lysol and hand sanitizer!

We go back to Texas doctors middle of January...12 weeks between visits that is so great for us that is the longest stretch in years!

Update

First round of doctors is done.
The mass is still stable and the biopsy is negative so they will continue to leave it alone and measure every 3 months. They stated they may want to do more radiation in the Spring to see if we can get it to shrink some more but right now it is not growing so we are good with that and so very thankful benign. If it does grow of course they will have to remove it because of where it is but we aren't going to worry about that right now. We will go into more details on Thursday.
His copper levels for his Wilson's disease were good and his liver function is actually improved.
We get his EEG results back Wednesday then will have a round table with his hepatologist, nuero, nuero surgeon and nutrionalist on Thursday to discuss more in depth the plan.
All in all going good.

In Texas again

It is check up time. We are in Texas. Braden will be having his bone scan, CT, and lots of labwork.

We start on Monday with several appointments.

Good days

Braden has had several good days in a row. We were even to all four get out the door together for church this morning. That was nice.

Last week we started dealing with a different issue with Braden his medical issues of course take front row but he has some other things that need attention too. We started looking into those this past week. I have thought for sometime Braden has something preventing him from being a good reader. It turns out there is he has an issue with his eye called Esotopia. This makes reading very difficult. She stated it like this: if you have 100% energy to do a job and you use 80% of the energy just to get to the job you are not going to be able to do a good job. Hopefully about 6 months of vision therapy should help tremendously and get him reading at grade level. We are hopeful. I think this will help so much with his confidence.

They have determined the weird episodes he had were seizures. Which is not a good thing but it is good that it is not a new issue.

This and that

Braden has went about 6 days without an episode of his heart rate dropping. Still don't know what caused it. He does have several appointments this week. We are also trying to devote some attention to his visual and auditory difficulties with reading and learning. It just seems that everytime we try to start on this area a more pressing medical area intervenes and must be dealt with. But we are trying to get a lot of things done for him right now and trying to get with doctors that are more on board with the treatment plans that we think work best etc. Right now he is doing good.

Seems to have passed

Brae seems to be doing good. As of last night when he went to bed he had not had a headache since the morning and had not been sick again.
At this point not going to do a CT as it appears to have been a bug of some type. If he gets more frequent severe headaches we won't hesitate and will do a CT earlier than he next scheduled one which is in 10 weeks.

leaning towards flu

We started letting him out and about more last week. I didn't think anything of it when the headache started yesterday. This morning after waking up he has a slight fever and has been sick at his stomach. So now we are watching him and it may be a virus or flu. Which is better than another cause so we will take it. Probably picked up a bug last week because his immune system still isn't very strong. He feels terrible which I don't like but I would much rather it be flu or virus than related to other issues.

Headache....

Braden had a bad morning with a terrible tears running down his face headache. It eased off for most of the afternoon but before bed he said it was worse than the morning had been. I gave him some medicine and he slept well. He isn't awake yet this morning but I hope he is headache free today. Today will be the test so to speak if the headache continues we will probably have a CT this week as to rule out a contributing factor.