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.
Tuesday, August 25, 2009
Monday, August 24, 2009
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.
Friday, August 21, 2009
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.
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.
Monday, August 3, 2009
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.
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.
Tuesday, July 28, 2009
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.
Friday, July 10, 2009
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!
Friday, July 3, 2009
Doing better
I think we are back on track. We changed up things yet again as far as the protocols go.
Seizures are back under control. Stress is such a trigger for his seizures we are learning that more and more.
We still do not have lab work back...that is about to drive me nuts. One should be back any day (should have already been back) and another we know will take about 2-3 more weeks it is the neuroscience test involving the brain.
He is back to his normal attitude and cute grin so that makes me happy!
Seizures are back under control. Stress is such a trigger for his seizures we are learning that more and more.
We still do not have lab work back...that is about to drive me nuts. One should be back any day (should have already been back) and another we know will take about 2-3 more weeks it is the neuroscience test involving the brain.
He is back to his normal attitude and cute grin so that makes me happy!
Thursday, July 2, 2009
One of those days.
I worry so much about all the real issues with Braden it never occurred to me that one of the newer issues was "convenient" as in he was doing it himself. Oh what a morning it has been with this issue. Having to let doctors know oh wait that wasn't true. I caught him in a lie regarding it this morning and so it all came tumbling out. He has definitely learned a valuable lesson and is very remorseful. We explained how many real things he has going on and how faking things makes the doctors and I do things that may not be what he really needs since we have false information. It was hard we were all in tears over it. He understands how many people pray for him and think about him and that he must be truthful otherwise we might do something thinking we are helping that will actually hurt. He also has received a punishment that for him is pretty severe and I believe will leave a lasting impression. A tough mom morning here!
Tuesday, June 30, 2009
Allergic to something but what we don't know!
This is what happened out of the blue this evening. Ugh. He has now had Benedryl and is resting. I have sent his docs everything he has had today and done as well as a lot of pics. We shall see.
Monday, June 29, 2009
Back Home
We made it home.
So I will be crazy the next few days playing catch up.
Brae is doing really well. Medication changes, and protocols have helped a lot. We did not have lab work back when we went in on Friday. However since he was doing SO much better than when we got there and two protocols were already finished and the rest could be done here we got to come home. We leave again on July 29. Basically then we wont be back at the house till August 17th with all that is scheduled for those weeks.
I am glad I didn't plant too many flowers this year.
We plan to have a yard sale in a few weeks so I will be doing some major cleaning and organizing in the next few weeks.
As of right now Braden's strength is at a good point, seizures are under control. We hope to have a phone conference this week on the lab and the neuroscience results in another 3 weeks.
So I will be crazy the next few days playing catch up.
Brae is doing really well. Medication changes, and protocols have helped a lot. We did not have lab work back when we went in on Friday. However since he was doing SO much better than when we got there and two protocols were already finished and the rest could be done here we got to come home. We leave again on July 29. Basically then we wont be back at the house till August 17th with all that is scheduled for those weeks.
I am glad I didn't plant too many flowers this year.
We plan to have a yard sale in a few weeks so I will be doing some major cleaning and organizing in the next few weeks.
As of right now Braden's strength is at a good point, seizures are under control. We hope to have a phone conference this week on the lab and the neuroscience results in another 3 weeks.
Monday, June 22, 2009
Ups and Downs, general frustrations
Ups!
Seizures seem to be under control.
Protocols seem to be going well.
Meds are tweaked.
Downs.
random headaches,
stomach aches,
leg pain, all over not feeling good.
He has only had one unexplained fever since we have been here but still has had it.
It is just so frustrating. And I am tired just so tired. Tired of making decisions, tired of those decisions being questioned by people who do not have the whole picture, tired of strains, tired of insurance companies, tired of doctors who disagree, tired of doctors who want to be right more than they want to help, tired of well meaning people that make me feel awful. I am just tired. And apparently whiney too!...oh well I can get it all out here and be ready to put on the happy face and start the day again tomorrow.
Seizures seem to be under control.
Protocols seem to be going well.
Meds are tweaked.
Downs.
random headaches,
stomach aches,
leg pain, all over not feeling good.
He has only had one unexplained fever since we have been here but still has had it.
It is just so frustrating. And I am tired just so tired. Tired of making decisions, tired of those decisions being questioned by people who do not have the whole picture, tired of strains, tired of insurance companies, tired of doctors who disagree, tired of doctors who want to be right more than they want to help, tired of well meaning people that make me feel awful. I am just tired. And apparently whiney too!...oh well I can get it all out here and be ready to put on the happy face and start the day again tomorrow.
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