We are about to start a new path in Braden's ever changing medical journey.
We are going to be having a brain mapping done of Braden's brain it is a very detailed eeg. Then we will be doing something similiar to bio feedback. The hope is that this will improve the function that is stiffled due to the scar tissue.
We did find a doctor in Tulsa that I hope works out..otherwise...10 weeks in Austin.
Tuesday, August 17, 2010
Wednesday, May 5, 2010
He is 11!
He is such a gift! As of today he is 11! My baby! He has seen a lot over the years ups and downs and the inside of more hospitals than anyone ever should. He has the sweetest spirit and is all around AWESOME!
Friday, April 30, 2010
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!
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.
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.
Monday, March 22, 2010
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.
About to head to our first appointment.
Saturday, March 20, 2010
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.
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.
Saturday, January 9, 2010
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.
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.
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