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.

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.

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.

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.

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.

broke my heart

Brae just woke up and came into the room and climbed into my lap. He laid his head on me and said "Mom why can't the doctors fix me".

Rash again!

Head to toe itching this morning. No fever. Usually it doesn't itch this much he just breaks out. So lots of pics were taken and being emailed to docs.

Better evening

It seems evenings are much better it seems than mornings and early afternoons.
He is much better this evening more alert, feeling better and playing.

just not feeling good

Brae woke up this morning. I was holding him and he said it had been a rough night and that the morning wasn't much better. He said he just feels bad all over he just wants to lay down. So he is set up on a cot in the living room watching tv. No fever or anything he just doesn't feel good which is natural with all he has going on. So a day of rest it will be for him.

June 2

I just finished talking with the doctors regarding Brae's newest rash/fever/seizure episodes. Several petite mal seizures together as well. They want to boost his immune system which has been compromised due to all the treatments, etc. We are finishing the chealation protocol that we are currently on. We are scheduled back in Austin on the 29th, will travel on the 28th of June, however we may end up back there sooner, just a wait and see kinda thing.

Treading Water

I am sorry I have not updated more regularly. I think the best analogy right now is I feel like I am treading water and if I do one more thing I am going to sink.

It has been rough. The whole process can just be summed up as rough. Rough and frustrating. It is hard and I think I have been trying too hard to make it look like it isn't hard. I don't know why I do that but I almost always answer fine, holding his own, we are hanging in there. I should add that when I am hanging in there it is usually by my fingernails. I hate asking for help I know that isn't the way I need to be but that pride of mine is hard to swallow at times. People always ask what they can do but honestly most of the time I don't know. I stay so frazzled but I don't want others to see me frazzled if that makes sense.

Anyway the nitty gritty details are that my son has a lot of issues A LOT maybe putting it mildly. Individually these issues would still be an issue but a controlable treatable issue but put them all together and you have a mess. We have SO many doctors involved that inevitably there is a lot of conflict between them. One doc summed it up best by saying "Everyone wants to be right about him, no one wants to admit that someone else may have figured it out". Of course this was said by my doctor that I love and he also said "I will gladly be wrong if the other doctors ideas work better". He is in it for Braden. The travel, the meds, the supplements, the chelation, all of it is taking it's toll on us.

Yesterday you couldn't say two words to me and I would start crying. Today is better. Today I am counting my blessings before I start worrying.

Well this has turned into a rambling post about not much at all but I wanted to blog it and I may do many more rambling posts about nothing because I learned yesterday sometimes just getting it all out there helps. Even if no solution is found just letting someone else know how frazzled I am really helps.