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.

All is quiet...that is a good thing.

I haven't updated in awhile and that is mostly because things have been quiet! We like quiet!

Braden has been battling a cold for about a week but his seizures have stayed under control even with that. That is so wonderful. He has added 3 more medications to his daily pills and that has been hard for him we caught him throwing his pills away one day. It is hard to take that many pills when you are 10 or at any age for that matter but to a 10 year old taking 16 pills in the morning, 8 at noon, and 12 in the evening is hard. Anyway didn't mean to get on that subject but that is an area we are praying for him to have more acceptance. Don't get me wrong he still has a wonderful attitude that gets him through so much but he simply does not want to take all those pills...who could blame him.

We were abudantly blessed annonymously this week. Only God knew some of the financial issues we had coming up with another trip to Texas in the future and some lab and medication issues between now and then. I had not even shared all my concerns with Matt. It was so wonderful it is hard because we aren't sure who gave to us and I want to hug them so badly and tell them how much it meant but I am sure they know.

Braden is continuing to gain weight which is VERY good he hit 70 pounds! He has been cleared to play soccer again this Fall and they are allowing him to play in the younger group rather than moving up with his actual numeral age group. That was a blessing too!

Right now seizures are under control, mass is not growing, copper level is lowering, metal levels are lowering. We are doing strict diet and detox things as well as his prescription medications and supplement medicines. The diet is difficult at times but for the most part he is doing well.

Home again.

The doctors appointments in Texas went well.

We are having a disagreement with the nutrionalist on how to handle an issue with Braden's food allergies. Matt and I are going to pray about it this next week and then come to a decision on how to proceed.

As for the mass on the brain stem, it is continuing to shrink! PRAISE! So we will continue to have a scan every 12 weeks to keep an eye on it.

His metals levels were not as low as they had hoped but they are lower than they were so we are making progress just not as fast as they had hoped.

They are scheduling us ito just check on Braden's heart murmur just so that we keep a complete picture and an eye on anything that might be affected. This is a precaution and because we haven't seen the heart doctor in years.

We do not have to go back to Texas for 10 weeks that is the longest we have been able to go in quite some time. We are so thankful. Thank you as always for your thoughts and prayers.

Back to Texas

Braden is doing pretty well right now. We leave for Texas in the morning for appointments Thursday and Monday. Hopefully will have a better understanding of lab results that we have gotten the last few weeks as well as get our protocols readjusted.

Smooth...as of this moment.

Just wanted to throw up a quick post more to let everyone know that things are good. Seizures are controlled, protocols going well, emotional issues fairly good, strength and stamina good, all in all right now going smooth. Still feels a little crazy keeping up with all the meds and protocols but right now it seems to be all working together nicely and for that I am very THANKFUL!