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!

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!

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!

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.

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.

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.

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!

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.

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.

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.

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.