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.
Saturday, June 20, 2009
Feeling Better
Tweaked the meds, changed up some things and he is feeling SO much better!
He starts feeling too good though and over does it but he is doing good!
He starts feeling too good though and over does it but he is doing good!
Thursday, June 18, 2009
some results
We have some results of course not all.
I am not going to go into all the technical terms and findings right now but I will be glad to share more info with anyone who wants. Still trying to get my head wrapped around everything.
The liver biopsy was better than the doctor anticipated. So that is great. She stated that one of the reason that the liver is not more damaged is because Braden has had the other metal toxicity (one of the reasons it made the Wilson's harder to find) and we have done so much chelation with that. So something we have always griped about was a blessing in disquise because she said he can come back from the liver damage he has suffered without a transplant. So thankful for that. He will be on the medication to lower the Copper levels and then he will be on Zinc for the rest of his life. Zinc helps stop Copper absorbtion. She said she wouldn't downplay the liver damage because it is significant but she has seen children come back without a transplant and he is reacting well to the medication so far.
While we still have many issues, and things to resolve with Braden including his seizure medication that reacts badly with his liver medicine, and other issues we have so many things to be thankful for: help we have received, friends, a place to stay down here, Braden's attitude, the findings thus far, the fact that we are able to have a plan no matter how frustrating the plan may be or financial straining I think God for giving the doctors a plan I see so many children in the hospital that they have run out of plans and I am so thankful that our doctors have been given more things to try. I am thankful that even if I can't see ahead it has been shown to me time and time again that God will provide.
Thank you to everyone who is praying for us and we will share as more results come. We are waiting on some different neuro tests to hopefully give some answers to the seizures and hopefully provide a new pathway to try different medicine, etc. Also some allergy testing for different components used in some of his medications, etc. More docs tomorrow more testing too. Will not know for awhile how long we will have to stay they have said it may be several weeks we must get seizure control before going home.
I am not going to go into all the technical terms and findings right now but I will be glad to share more info with anyone who wants. Still trying to get my head wrapped around everything.
The liver biopsy was better than the doctor anticipated. So that is great. She stated that one of the reason that the liver is not more damaged is because Braden has had the other metal toxicity (one of the reasons it made the Wilson's harder to find) and we have done so much chelation with that. So something we have always griped about was a blessing in disquise because she said he can come back from the liver damage he has suffered without a transplant. So thankful for that. He will be on the medication to lower the Copper levels and then he will be on Zinc for the rest of his life. Zinc helps stop Copper absorbtion. She said she wouldn't downplay the liver damage because it is significant but she has seen children come back without a transplant and he is reacting well to the medication so far.
While we still have many issues, and things to resolve with Braden including his seizure medication that reacts badly with his liver medicine, and other issues we have so many things to be thankful for: help we have received, friends, a place to stay down here, Braden's attitude, the findings thus far, the fact that we are able to have a plan no matter how frustrating the plan may be or financial straining I think God for giving the doctors a plan I see so many children in the hospital that they have run out of plans and I am so thankful that our doctors have been given more things to try. I am thankful that even if I can't see ahead it has been shown to me time and time again that God will provide.
Thank you to everyone who is praying for us and we will share as more results come. We are waiting on some different neuro tests to hopefully give some answers to the seizures and hopefully provide a new pathway to try different medicine, etc. Also some allergy testing for different components used in some of his medications, etc. More docs tomorrow more testing too. Will not know for awhile how long we will have to stay they have said it may be several weeks we must get seizure control before going home.
Today
Sorry to be so skimpy with updates. I haven't been at the actual computer as much as using my phone for email. Updating the blog is much harder on my phone.
Today is results day. He has done good with most of the testing, still a few more to do but some of the big things, results will be today. So keep us in your thoughts and prayers.
Today is results day. He has done good with most of the testing, still a few more to do but some of the big things, results will be today. So keep us in your thoughts and prayers.
Sunday, June 14, 2009
In Texas
It is unbelievable how tired just riding in a car makes you. We made it safe. Not much tomorrow the big things will be done on Tuesday. I don't know for sure what to expect yet on Tuesday so hopefully that will be answered tomorrow. We do plan to swim at a pool with a friend we have been blessed enough to meet here. Will be a nice treat before things on Tuesday.
Saturday, June 13, 2009
Leaving Tomorrow
Braden said today he is ready to get rid of these headaches. He has been so emotional. Very emotional. I am sure it is a side effect of the meds but eek it is crazy right now.
We plan to leave early in the morning. The backyard is back together from the storm.
We plan to leave early in the morning. The backyard is back together from the storm.
Friday, June 12, 2009
Day after tomorrow
We leave Sunday. I am trying to just trust and not panic. Hard to do. Somethings have fallen into place while others seem so far out of reach. I am thankful that Brae is having a good day today, it started out rough but good now and and my mom and dad are going to watch both kids for at least a couple of hours tonight. So Matt and I can have some time together. It has been so long since we have gotten to do that. So looking forward to that. We will be packing and getting things together but still just the two of us for awhile will be nice.
Storms shook our house today, hail damage to the roof and car, some of the fence panels blew down. The kids were in the living room watching the news with me when the man said go to a small place they both flew out of the living room. I found them with a pillow in the bathtub and a blanket cuddled up with the dog. They weren't taking any chances.
I am anticipating answers to come from this visit to Texas. A path to be guided to us. That is what we pray for guidance down the path Brae needs to be taken down.
Storms shook our house today, hail damage to the roof and car, some of the fence panels blew down. The kids were in the living room watching the news with me when the man said go to a small place they both flew out of the living room. I found them with a pillow in the bathtub and a blanket cuddled up with the dog. They weren't taking any chances.
I am anticipating answers to come from this visit to Texas. A path to be guided to us. That is what we pray for guidance down the path Brae needs to be taken down.
Wednesday, June 10, 2009
It is so hard
I have ran this verse in my head 1000 times a day this week.
Trust in the LORD with all thine heart; and lean not unto thine own understanding. Proverbs 3:5
Unfortunately I am not always successful.
This has been a week. With all going on with Braden, add in having to do major car repairs, Britt's glasses breaking, trying to get ready for an extended time away from home. Just feel like I am sinking at times.
Braden has had 2 good days in a row so I am thankful for that! Last night he started just feeling off but he had some friends over and had played pretty good and it was just a lot for him.
Trust in the LORD with all thine heart; and lean not unto thine own understanding. Proverbs 3:5
Unfortunately I am not always successful.
This has been a week. With all going on with Braden, add in having to do major car repairs, Britt's glasses breaking, trying to get ready for an extended time away from home. Just feel like I am sinking at times.
Braden has had 2 good days in a row so I am thankful for that! Last night he started just feeling off but he had some friends over and had played pretty good and it was just a lot for him.
Monday, June 8, 2009
Missing Piece
All of our disagreeing doctors now agree on one thing: There is a piece missing to the puzzle. I resist the urge to say duh sometimes.
The end of this week will find us heading back to Texas for a minimum 3 week stay. More testing.
I am just praying our needs fall into place.
We are all 4 going at first we weren't going to but Matt arranged it and then Brittney made the decision to quit swim team, which I hated but I would rather us all be together.
Today is a good day so far he is feeling well being his usual smiley mischief self! Which I love.
The end of this week will find us heading back to Texas for a minimum 3 week stay. More testing.
I am just praying our needs fall into place.
We are all 4 going at first we weren't going to but Matt arranged it and then Brittney made the decision to quit swim team, which I hated but I would rather us all be together.
Today is a good day so far he is feeling well being his usual smiley mischief self! Which I love.
Saturday, June 6, 2009
Good day
Today has been a good day.
He wasn't feeling too well this morning he had a headache and rested for awhile. Then he played outside for awhile climbing and doing great. Seizures have been well under control today. He rested again a little this afternoon with little complaints about feeling bad. At this moment is wrestling his sister for control of the remote. So good to have a good day. We are discussing with doctors and I have emailed them the complete foods he has had, complaints, pictures of the rash, seizure activity, etc we are trying to find a correlation. Right now they just want us to get through this protocol of chelation, supplements, medications, etc. We have 3 more weeks of this protocol. Still no word on the insurance company covering the test. Which ticks me off it seems to me if doctors say it is essential and necessary then why do they get to say it is not...ugh I wont get started on that rant.
He wasn't feeling too well this morning he had a headache and rested for awhile. Then he played outside for awhile climbing and doing great. Seizures have been well under control today. He rested again a little this afternoon with little complaints about feeling bad. At this moment is wrestling his sister for control of the remote. So good to have a good day. We are discussing with doctors and I have emailed them the complete foods he has had, complaints, pictures of the rash, seizure activity, etc we are trying to find a correlation. Right now they just want us to get through this protocol of chelation, supplements, medications, etc. We have 3 more weeks of this protocol. Still no word on the insurance company covering the test. Which ticks me off it seems to me if doctors say it is essential and necessary then why do they get to say it is not...ugh I wont get started on that rant.
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