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!

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.

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.

Maybe leveling off

Okay it looks like we may be getting into a system and routine. In some ways I am already seeing little improvments in other ways not so much. He is doing really good with his meds even the yucky ones. He has done better the last few days and seems to be getting more energy. His seizures have been MUCH better the last few days so for that we are VERY thankful.

Thanks to some friends and family we were able to get a blender type thing that was recommended by the doctor called a Vita Mix it mixes things so super fine and you can make all kinds of things in it. We can now hide lots of things in smoothies easier. I was shocked by all it could do. So blessed we were able to get it and thankful for the help from family and friends.

This will be week 2 of the new meds and schedule and I am beginning to see it leveling out and becoming more of routine and see him adjusting well too.

typical schedule

Brae hasn't got sick again so for that we are very thankful. We believe he chewed a pill that was suppose to be a swallow pill and it just entered his system to quickly.
To give everyone a better understanding here is a typical schedule for Brae.
AM - takes 2 liquid medicines that are so horrible tasting
takes 14 swallow pills
Noon - takes 1 liquid medicine
takes 10 swallow pills
PM - takes 1 liquid medicine
takes 16 swallow pills
Before Bed - 2 pills
Each day he has to do certain excercises that are to help the body release things, such as a mini trampoline, etc. He has 30 minutes of those a day, he has to drink 80 ounces of water, he has to take certain baths that is another way to draw out the copper he hates hates these he does them every day we even set up the portable dvd player in the bathroom for him.
Anyway that is just a sample some days he has a few more things.
The diet is going well. We had to get a vitamix mixer to make fruit smoothies etc so that he would get more nutrients than using a blender, etc. So playing with that and dehydrating lots of fruit for him to have as well. The trick with that is measuring the glycemic index.
He broke my heart yesterday telling his sister how lucky she was that she wasn't sick her whole life like he is. She felt guilty she cleaned his room for him...knowing Brae that may have been the plan :)
His attitude has faltered here and there and who could blame him but for the most part he is just handling it all wonderfully.

Not off to the greatest of starts

We started our new meds and things today. It started out hard because of the taste of some of the new meds. It has gotten worse as he started vomiting this afternoon. He says he hates the new meds. The docs have assured me it will get better as he gets adjusted to it all.

Home

We are back from Texas.
Still trying to wrap my head around everything and get everything implemented. It is very overwhelming at times.
Brae still has his amazing attitude for which I am forever grateful. His number of pills he has to take is astronomical yet he does it, not that he doesn't groan now and then but basically he does it without a fuss.
Anyway we are home and will start stuff tomorrow. The main fear is something contradicting because he has so many different issues they are treating for.

Planning it all out

Today was lots of talking with the docs planning out what will have to be done the next 6 weeks. It can get very overwhelming. Brae is holding together so well. He had a seizure yesterday afternoon and I know it was stress. Today he got dizzy but I think this time was heat. We are learning how so many things are working against each other in his body. The real trick is to make all his treatments work without counteracting with another treatment for a separate issue.

I am blessed to have doctors that work together. We were having a little tiff between a couple of docs and another one summed it up quite well. He said everyone wants to be right especially with Brae he said Brae is a textbook article, so of course all want to be the one that figured it all out. However the reason he is my favorite his statement was "I will gladly admit I am wrong if something they figure out works better for him than what I am doing". It made sense they way he put it all to me. However I think they are all soothed and know that we are all working together.

Tomorrow will be a much easier day for him and he is looking forward to that. We are hoping to head home sometime Sunday. We would like to be home before then but that isn't going to work so Sunday will be great. We will be coming back the last week in June basically like clock work every six weeks. Everyone teases about how organized I am but you haven't seen anything yet to make all these treatments and supplements work eek I told Braden I am going to set alarms on my cell phone and we are going to make a calendar him and I were brainstorming different ideas to help us on our way between appointments.

mind spinning

Still one more appointment to go today. My mind is overwhelmed. Brae is laying down taking a nap between appointments. He is so tired. I have to watch what I talk about in front of him he overheard me on the phone talking about costs and got really upset. So I told him it was no big deal that mom would give up her flip flop obsession if I needed to and he laughed and said I must love him a lot not to buy anymore flip flops..LOL.

Anyway I think I will have the equivalent of a phd or pharmacy degree when we get this all settled. Bless his heart the amount of medications and supplements he is on is mind boggling. I will say this over and over but it is such a blessing how well he takes pills. Not many 10 year old boys would without arguing swallow 22 pills with breakfast. So for that I am blessed.

We are overhauling everything basically. Hopefully it will work but I am always nervous when they change too much at once because if something does work you can't really tell what it was and same thing if something doesn't.

Update

I will start this by saying I am frustrated and thankful all at the same time. I am thankful that they have found a reason for the cooper poisoning, I am frustrated because I hoped it would tie some of his issues together. It has not done that it has given us another issue.

We still have several more doctors appointments this week so we don’t know everything right now but here is what we do know. He has been diagnosed with Wilsons Disease. Wilson's disease is a rare inherited disorder that affects about one in 30,000 people worldwide. In Wilson's disease, the body is unable to excrete excess copper. Copper is found in most foods and most people get an excess of copper in their daily diet. Normally, the body releases copper into bile, a substance secreted by the liver, which helps in digestion and detoxification of the body.
In Wilson's disease, the copper is not released into the bile, but rather builds up in the liver. This causes progressive damage to the liver. Eventually, the copper is released into the bloodstream and deposits in other organs including the brain, kidneys and eyes (corneas). Without treatment, the disease may cause severe complications, including some that are life-threatening. The symptoms of Wilson's disease are highly variable and usually appear between the ages of 5- 35.

They did a blood test for levels of cerplasmin (copper protein) in the blood and an and an eye exam to look for Kayser-Fleischer rings. With proper diagnosis and treatment, the progress of the disease can be stopped and symptoms may improve. Drug therapy is usually continued for life. We will be using drugs called penicillamine and trientine that work by binding to copper and causing it to be excreted through the urine. They will be watching this process very closely making it necessary to travel more here. If continued damage occurs or this was not caught we would most definitely have to have a liver transplant. The doctor is hopeful they have caught it in time. Once the existing copper is removed from the body, he will be taking zinc to prevent it from reaccumulating along with a conjunction of medication therapy.

Like I said we have a lot more appointments and results to get. Specific prayer requests include Braden’s mental state as he deals with all of this, his physical state as there are still issues they don’t know why they are occurring, insurance company who is being completely unreasonable, that our travels here will be what he needs but not as often as they are currently stating it will be as I am not sure how we will be able to handle the amount of time they want us down here but know that whatever we have to do we will.

More doctors

We leave Monday to be in Austin on Tuesday. Brae has to see a Hepatologist for the liver issues that seem to be occcuring.

He is 10 now!

Brae is doing better the last few days. He turned 10 on Tuesday. He curled up on my lap and told me he would still cuddle with me even though he was 10. He got mad at his sister when she told him he was almost a tween he argued he was not he was a kid.

I am getting frustrated with lack of response from our doctors in regards to my questions on the metal toxicity test. I have never had a problem with this particular doctor before but I am wanting specific answers and I have a feeling some of the answers may involve the supplements he has put Brae on so I don't know if that is why he is steering away from answering me or not. I am taking the lab report to a doctor friend of mine in Fort Smith today who said he would look at it and see if he could help me understand a few things.

Frustration

I feel like I am blogging the same things all the time. One day he is sick, then fine, then something we can't figure out, on and on over again.

Something is going on with him and we just can't get it figured out. So weird so random but definitely something. It is so frustrating.

He did okay with me gone for 2 nights. This rash issue is getting worse, now he is complaining of neck and back pain, before it was leg pain. The rash is still random.

Doing good

Brae is doing good. Bouncing right back.
I leave town tomorrow night so dad will have him! Brae has been super clingy this week. He is not to sure about this mom leaving town stuff.

As for the lab test and radiation protocol we are waiting to hear from the doc. The metal anaylsis tests have changed things up but how we aren't quite sure.

Right now he is doing well no fever, no sniffles. I will be back Saturday night I am quite nervous to leave him even though of course they will have lots of fun dad time.

Antibiotics kicking in

Fever has stayed down today, we have gotten through so far with minimal seizures which is such a blessing. He is feeling better today and has been up and about much more than yesterday.

Here we go again

Step and Sinus infection. Antibiotics which of course cause their own problems for Brae. UGH. Doing the Motrin/Tylenol switch every 3 hours.

On the way to the doc

Going to see the doctor to see if they can see what is causing the fever. I don't want to wait and deal with fever induced convulsion seizures. Try to find out what is going on why fever is still under 101 (over that is where our problems tend to get crazy).
I will update when we return.

sore throat and fever

Brae started complaining of a sore throat. I thought allergies. Now we have a fever. Not sure what is going on. He is laying with his head in my lap and has not moved from my side.

Matt and I are going to have to be more careful on what we are discussing. I have been discussing the disturbing lab results and this morning he asked me if he was going to die. Talk about breaking my heart. The lab results are serious but not life threatening. We just have to figure out why they are the way they are and make sure they don't increase more.

I am suppose to be going out of town next weekend with several friends to a home school conference. He is already being very clingy and not wanting me to go. I will only be gone about 48 hours. I hope he starts feeling better soon.

lab work

We received some test results in the mail today. It was from the lab in Arizona we knew they would be coming it was the complete metal mineral analysis. I am still trying to process it (over 20 pages) but the levels are not good.

Broke

My boy who runs full throttle when he is feeling good ran a little too fast. Full fledge into a door frame...broke nose and knot on his head. We are SO thankful that even though he was knocked to the ground from it he has not had any seizures from it.

Clear...again

Rash is gone. He is acting normal. Things are fine as of right now. The doctors are truly stumped. We are keeping a diary of when it occurs what happens when it occurs what we have done before and after so far no connection of any sort.

Better

We had a morning this morning.
We woke up and got around for church. Braden was okay. We noticed his rash was here again but it has come and gone so much we just went with it.
About half way through service my cell phone vibrated...not a good thing. The number didn't show up and I didn't answer 5 seconds later Brittney's cell phone shows up on the caller ID. I didn't answer it I just headed across the street I knew something was up. I got there and they had Brae out in the hallway. One of the leaders is a nurse and Brittney was there. He said his legs were hurting and they said he had been staring out. We left church and before we were on the road 4 minutes we had to pull over. Brae had a significant seizure. I held him in the backseat the whole way home. We had a few more stare outs then home some meds, relaxing and he bounced right back.
Tonight he is fine but we are just not sure what we are dealing with. I am afraid a trip back to Austin sooner than later may have to happen. I am going to get him in to his local pediatrician today but I don't expect a whole lot from that as Brae is a pretty complicated patient. It feels like we are on a roller coaster just when I was thinking okay it is pretty smooth we can deal with it boom hits a loop or a big drop I hadn't expected. I would not be truthful if I didn't say it is wearing on me. I am tired. I am also very very thankful of the calmness we have had. I don't ever want to whine about what we do deal with because as I have said before I am grateful for it because in this experience I have met and seen too many moms who didn't get to deal with things anymore and so I remain thankful but frustrated which I guess makes me normal!

here and then gone again

The rash is very odd, Brae has the docs stumped. Last night it was really odd again. We have went through everything jarring our brains but the docs do not think it looks like an irritation or allergy rash. UGH. It is gone this morning. Very frustrating. Other than this though he is doing very well. Seizures are staying minimal which is wonderful.

He is a puzzle

Rash is completely gone again. I had sent a pic to two different docs and both state they have never seen anything like it. Very hard to describe but it was like little red broken lines coming out from the spine and spreading up to shoulders, etc. So it is gone again and we are on rash watch.

Again

I was just thinking this afternoon that I needed to post and let everyone know that things were going good and that was why there was a lack of posting.

Well...we get home this evening and Britt yells at me to get in her room. Brae has a rash MUCH WORSE than before all over his back and seems to be going down his arms. Weirdest rash I have ever seen. I put some of the lotion they gave me before and I took pics of it and emailed it to two different doctors. No fever, no seizures, nothing like that he says it doesn't even itch but I know it means something is going on as similiar things have been a warning sign before.

Disappeared as quick as it appeared

The rash seems to be gone. It disappeared almost as quick as it appeared. Hmmmmm....not sure what it was. We hope it doesn't come back.

Not sure

Brae is really itching and broke out. Don't know if it is a medication or supplement reaction. Not sure. His skin is SO dry anyway and then this he is just clawing at himself. Keeping medicated lotion on it and even gave him a Benedryl so hoping it passes quickly. I have noticed a few more stare out seizures this week than I did last week as well.

A good week

We have implemented several things this week and so far all are going well.
We have had very minimal seizure activity this week all in all a very good week. He has felt better. We will start another protocol next week.

Doing good

Brae is doing good we are just all so tired and wore out.

Poor Brae had a rough day Friday and it had nothing to do with his medical issues. He accidently stepped on our little dog and broke his leg. The dog is back home now with a cast on his leg but poor Brae felt so bad. Today him and I went to pick up Tex from the vet and he had to stop at the dollar general and get Tex a present. He was so worried Tex would be mad at him. Which of course he wasn't he crawled right into Brae's lap and was fast asleep.

Monday we start implementing some new ideas and medicines from our visit in Austin.
Right now we are just trying to get some energy back and get rested up.

Home

Brae and I made it home.
Trip home was much less eventful than the one there! That was fine with me.
I am tired but glad to be home.

Good news

Today was our results day. Like I told Matt I think the results were as good as they could be without them just saying nothing is there anymore and it was all gone. Since that didn't happen I will take the results we got!
Don't want to sugarcoat it he still has a lot to do as far as more radiation, etc. BUT things are going really good as far as MRI's and all the tests show.
We still have some issues but I think this is the first time in so long that the tests didn't give us a new issue if that makes sense. I guess that is one of the reasons I am so thankful. There were no new masses, no worsening results things were either better or the same. EEG results were abnormal but no more abnormal than last time. MRI showed good improvement and we will continue radiation.

I am just very thankful and want to praise!

Monday in Austin

Okay now we are doing better they did tons of detox stuff today. They did a test and he did have pecticide poisoning. All from unloading(playing) in a truck load of mulch at my parents house on Friday. Crazy that he had the reaction but he was laying in the mulch and playing in it full out so I guess it was just too much with his sensitive system. He is already feeling better they are doing what is called a liver flush detox thing and then he should be doing good. I can already tell he is feeling better. So now we can deal with the reasons we came here but at least we have a reason for the seizure and fevers and he is doing better so I feel better.

We did get the MRI and all the tests done today. We will get our results tomorrow.

Kelli

In Austin

Our 8 hour trip took 11 hours but we made it.
The past 2 days Brae has been running random fevers. We had not had any convulsion seizures just stare outs. Brae and I started out this morning for our doctors appointments in Austin. Almost 3 hours from the house I heard a sound and adjusted my mirror, Braden was seizing. I immediately pulled over and got him as much room as possible so he wouldn't break the window hitting it with his head. It last about 3 minutes. He responded well after it ended. I began trying to figure out what to do we were 30 minutes from the nearest town Atoka and about an hour from Durant the next biggest town. I got in touch with our Austin doctor he called in a prescription to the next town for Ativan to get him on as well as a refill on our Diastat. I assessed the situation again in Durant. After leaving Durant and getting the meds in his system he has been fine and the rest of the trip was uneventful. It was quite frustrating and I felt helpless being that far from a hospital. Thankfully we were blessed with a relatively short seizure and fast recovery time. We had debated to go into ER upon our arrival here or to go to our regular appointment. We confirmed with the doctor and since at this time he has no fever and is awake alert and doing fine we are waiting until the morning. Unless something changes tonight which we were blessed our doc was on call.

Fever

Brae and I leave in the morning for Austin. This afternoon he is not feeling well no symptoms besides a fever. So far no grandmal seizures but several petite mal.

Prayer Request

Brae is pretty nervous about going this week to the doctor. Him and I are on our own this next week. Our appts will start at 7am on Monday morning with an MRI. That is where it all went haywire last time so that is a little stressful for me. However after that we have a few other tests. It will be a day of docs. Then Tuesday we should be able to sit down with our doc and whoever he deems necessary and discuss results. We have had a friend move to Austin recently so she will be able to help with Braden. That is such a blessing! She has 6 boys so Brae will enjoy his time with her while I am in conference with the doctors. We ask for prayer for a safe trip and that both our nerves are calmed and that a good appointment will be had with clear direction on where to go next.

A great day

Brae has had a pretty good week healthwise. Today he had a great day. Brae doesn't always do well in a lot of things for several reasons one being he has so many staring out seizures it is hard to concentrate and stay focused. Anyway today was the home school science fair. I knew that he had fun doing his project which was seeing what made soda lose it's carbonation faster (ice, room temp or hot). I wasn't sure about the judging part where they asked questions, etc. Well he did great. He won 1st place! This did so much for his confidence. He was so excited with the cash prize he wants to take it next week to Austin so he can add it to whatever his doctor prize will be!

Up and down

Right now things are so up and down with Brae. He may have super energy and wear us all out for about 3 hours and then bottom out and start running a fever. I realize that is all normal but it is very hard. Hopefully when the radiation is done we can get some consistency this up and down is exhausting. His seizures are better this week so for that I am very grateful. At this time he is in a down point running a low grade fever but not having seizures with it so that is a good thing.

Doing good

He is doing good. We have one more radiation treatment before we leave for Texas appt on the 22nd.

Up and going strong

He is anyway. I am popping excedrin and trying to get my day organized when all I want to do is crawl into bed. No fever everything looks good no seizures in his sleep.

He is up and full of energy. I mean FULL OF ENERGY. Hugs and kisses and I am fine mom.

Hmmm maybe I will have to try over 12 hours of sleep and see if it makes me that energetic and perky.

3 am and all is well

He hasn't been running a fever since about 1:15. No seizures. He has been sleeping very well. Even mom constantly touching his forehead and watching him like a hawk has not disturbed him. I am thankful he is getting a good rest and hope that he wakes up refreshed. When he wakes up feeling better I am taking a nap :)

Won't be much sleep tonight for me

Brae is not having a good evening. I think it was too much today.

We went to a scout meeting this evening and I ended up having to leave early he was just feeling so bad. By the time I got him home he was dizzy and running a low fever. He wanted a smoothie so of course he got one he had it and could barely keep his eyes open. He is asleep now but I am on guard duty watching to make sure no seizures as he sleeps. I am hoping a good nights rest and some of the supplements he takes will help him feel better tomorrow. I pray for an uneventful night and one of rest for him.

Another day

Brae got up this morning and said "Another day another doctor"...bless his heart I know he is tired.

This morning started with the eye doctor getting his eyes dilated which is no fun. But he is having some issues with his eye turning in even with his glasses on. They are treating aggressively by increasing glass prescription. This is to keep the eye straight problem is it makes his vision which was normal before all this started to diminish. But right now we will order new glasses tomorrow. He will try to adjust to them for 2 weeks. If he can't adjust and see with them we will go back. If he can then we will keep him in them 6 months and see if his eye straightens. If it does not we will talk surgical options. He flipped when he heard her mention surgery so I had to calm him and have him play his ds in the waiting room while we finished talking. I haven't discussed it with Matt but I am assuming we will get at least one more opinion before surgery is even seriously discussed if the glass increase does not work.

He has another appointment this afternoon with another doctor.

He was happy because he got to go spend his Toys R Us gift card so that made the doctor appt much better.

Happy boy

He may be sick tomorrow from overdoing it today but he was so happy today. He played soccer for the first time. He may be a little slower and not as skilled as the other boys but he had a grin on his face from one end of the field to the other and it never wavered.
I am so glad that our doctor told us it would be okay (of course no heading the ball).
Today he wasn't sick today he wasn't going through radiation today he was loving that he could play a game. Here is a pic of the VERY happy boy. We all had on shirts that said "Braden's Mom", Dad, and Sis. We cheered loud! His team won 5-2.

Just when he needed it.

Brae is doing good.
Radiation is at 55 now. This is the highest it will go.
We will leave on the 22nd to go to Texas for doctors. Just Brae and I going this time. Matt will keep Britt here and keep her school going, activities, etc.
Brae was pretty tired today and the mail came. He got a special surprise in the mail. He perked right up when he realized it was ToysRUs card he wasn't tired anymore he was ready to go..LOL. It was cute.

Waiting to hear from a doc

Waiting for a return call from a doc I think that is a daily thing for me or at least it seems to be.

I did speak to one doctor yesterday and we made a few changes and he did do somewhat better yesterday. We did not do radiation yesterday we will do it today as I was still too concerned yesterday especially since they were raising it.

We are trying to see if it is necessary to go back to our Texas doc earlier than planned. So many things and so many docs involved makes it quite a balancing act at times. But each doctor we feel led to use and feel that he needs them all even if it does get touchy at times.

Just a feeling

Something is up. One of those feelings that I have learned not to discount. Brae is just not himself and the stare out seizures are coming rapidly. I am watching him closely and will evaluate in the morning if I need to call a doctor and if so which one.

We didn't make it to church this morning. I am having a terrible time with migraines and add in the extra worry of Brae being off with his usual hard time at getting up in the mornings we just couldn't make it. We are staying home all day where I can watch him closely.

We will be praying to be shown what is going on with Brae as I am certain something is off. He had that sinus infection and it may be something as simple as the antibiotics countering his other medications in his system. Also this week radiation will be raised to 55. Which is very high maximum is 60 because over that the radiation can cause more issues and cancers etc.

Seizures

Yesterday was a rougher day with lots of absent and petite mal seizures. He was really out of it. This morning he seems to be much more alert. Don't know what causes those days neither do the doctors it is just some days are worse than others. Thankfully those days are fewer than they used to be.

Long day

Yesterday was a long day. I felt bad because I really pushed Brae too much. The kids and I ended up getting up and around at 5am to go to Little Rock. We didn't get home till 5:30pm and we had about 45 minutes before going to Britt's basketball tournament. I couldn't miss it as it was the last of the games for the season so we all went. The games were running behind and we ended up not getting home till 10. Brae was beyond wiped out he slept 12 hours straight.

He is kind of just tired and laying around today and thankfully it is a day where we really didn't have to be anywhere so he got to just rest up. Actually we all got to rest up which is nice.

His neck is looking a lot better as are the sores on his mouth. His lips started getting really chapped looking and bleeding around them and they said that is all part of it. We got some medicated lip medication and it is already looking better. I kept asking if they hurt because they looked terrible but he said they didn't.

Monday

We are over halfway done with our radiation protocol now.

Brae definitely does not fit the information they give you on how radiation will affect you. Actually he doesn't fit the rules on how any of this is suppose to affect him. Which is wonderful. One my absolute favorite stories was when we were leaving the ICU monitoring area and one of the nurses told Brae he was a lucky boy this was after the Austin incident. Brae looked at her like she had three heads and says "I am not lucky Jesus loves me" just as plain and clear and I just smiled. I loved it.

He is loving this soccer thing. I am so thankful for it. I have prayed for something that would build his self esteem which is low and that he would enjoy. We have tried things but either his sister was with him and did more than he did or he felt he couldn't keep up or he just plain didn't want to do it. Soccer he told me he was born to do. He actually volunteered to run extra laps. Those that don't know him well won't think this is a big thing but as his mother I know how huge that is.

He played over 3 hours of soccer on Saturday. His energy was boundless.
He still has his struggles of course and the radiation protocol is no picnic for him but his attitude just keeps things going. Everyone always brags at how well I deal with everything. But it isn't me one thing we have said since he was 3 was all that was keeping us together was God Glue, the other thing is his attitude it is a blessing beyond belief. One of the things we struggle with are mornings. Mornings aren't his favorite anyway and add in medications and side effects of radiation and they can be pretty hard. Sometimes it may take him 3 or 4 hours to be able to even get around. It takes me holding him and really talking to him so he doesn't have a melt down some mornings.

I will be calling today to set up and confirm our future appointments with Memphis and Austin. Try to get our schedules all planned out and what is needed for what appointment all that kind of thing.

I feel good about the way this protocol has gone I feel blessed by his lack of side effects and as always I am so blessed by his general attitude.

Feeling Better

Brae is already starting to feel better.
He is on antibiotics for the sinus infection. Antibiotics bring their own issues and concerns but he needed them in this case.

Yesterday his neck looked pretty raw from the radiation and some kids asked him about it his response "It's a medicine thing it doesn't hurt don't worry". It was just such a Braden response.

Ear Ache

Brae is complaining of a bad ear ache. They don't see fluid or anything to show infection so they are thinking it is a side effect of the radiation even though it is not a common reaction. So we are watching for fever and giving Motrin for the pain.

*Update
He does have the beginnings of a sinus infection they believe the ear pain may be from that or the radiation but he did not have an infection in the ears. We started him on an antibiotic for the sinus infection.

Lots of energy

Braden is continuing to surprise me in regards to his energy level during his treatments. He says he is ready for soccer practice tonight. He is really having a good week. He had some trouble focusing this morning but that has been better as the day progressed.

Putting it all down on paper for the future starting with the Austin story...

Putting it on paper. I think it is a good idea for many reasons. One I know that Brae is going to do amazing things with his life and I want him to see just how much he came through.

I am starting my stories with the most recent one that occurred in December. I relive that day 100 times a day still.

It was routine time in Austin. We had went early in the morning just Brae and I so he could get his MRI done. I remember sitting in the waiting room, being called back, sitting in the hard plastic chair in the corner while they got Brae ready. I recall the medicine in the cup (he had it several times before). Now looking back I realize they had not hooked him up to a pulse ox machine as they always had in the past but at that moment I didn't catch it. The nurse told me she would let him get sleepy and be back in a few minutes. I was thumbing through a magazine and Brae had a Look and Find book. I had my head bent and I heard the book hit the floor so I looked up. At that point it looked like he just fell back and I thought he was having a seizure.

I moved him from the table to the floor on the side without chairs etc because my mind was moving fast and I knew if he was going to start seizing I didn't want him to hit anything it all took less than a minute I moved him opened the door shouted for a nurse that he was seizing and we were going to need diastat. The nurse ran by me and at this point I looked. I could only see his legs but I remember in that split second thinking if he is seizing why is he so still. The next second the nurse said get in the corner or you will have to get out. I didn't question I did and my mind at this point was in a haze of what is going on. She screamed "code blue" and I think my heart stopped as well. All I could do was scream and ask what was going on from my banished place in the corner. I will never forget the site of him being intibated for his breathing. I had never seen it done and had no idea the roughness that it required. I had seen lots of shows using paddles on the chest but never on someone I loved. I thought it went on for hours all I wanted to do was get out of the hallway and call Matt but I was afraid they wouldn't let me back in if I got out of the corner.

Later I would learn it was 7 minutes and 3 seconds. I still say it felt like hours. There was blood unlike any scene I had ever seen before. He was still oh so still the machines were beeping now. I will also not forget our surgeon who we travel so far to see (and this story tells you why) barging into the room. He is a surgeon and had no reason to have to be there but he had heard it first over the intercom and then had heard the name and he came immediately. He sprung into action making sure my blood pressure was okay, and said "You have been praying you know it isn't his time and God will allow us to help". That sentence you have no idea how comforting that was. The doctor took charge started screaming at nurses for no pulse ox being hooked up ordering med cups pulled from the trash, etc. He knew it shouldn't have happened and was leaving no stone unturned.

We were moved to ICU. I later learned my doctor had cancelled 2 hours of patients. I didn't realize he was there that whole time but he was. It was almost 30 minutes later before I could call Matt, and then my aunt to arrange to get Matt to me because we had thought it was a routine MRI so him and Brittney had stayed at my aunt's so he could work. Before he was completely settled I had to cry I had to let my friends know what was going on. At that moment they were the world that I needed I knew they would pray with me I knew their hearts and that they would pray. I just remember thinking I have to call Adria I have to call Stephanie over and over until I could get a minute to do it.

Things would get bumpy for hours to come he would have more reactions and the crash cart stayed by the door. I was told it would probably be the next day before he came out of all the meds they had given and before he would be breathing on his own. But they didn't know my boy or all the prayers going up on his behalf because mere hours later he was fighting the vent and trying to breath on his own and waking up despite the meds so they weaned him off.

He was so mad at me when he woke up. Because he had an IV in his arm and he knows if he gets stuck he gets a surprise. I didn't care that he was mad I was just so happy that he was okay. I knew as soon as he got mad that it would all be okay. I listened to them talk about damage to the heart and brain but I knew it would be okay and it was.

I will never forget that day and I now can accept that and realize that it is a day full of family, friends, prayers, people I didn't know coming forth a day that God touched our lives and decided to let him stay with us so it is no longer with horror but aww that I look back.

Actual Diagnosis

My friend in Texas called to check on Brae and was asking about his actual diagnosis. This is so hard for me to answer because he has so many things. Some of the things get pushed to the back burner and others are more forefront. But officially these are on his charts: Aspergers Autism, Verbal Apraxia, Celiac Disease, Milk and Soy intolerance, Benign tumors, and metal toxicity. I think those are all!

My friend also requested that I go back and write some of the stories that I have shared such as are experience in Austin when we almost lost him, his first surgery etc. I think it is a good idea so I have those for him and to help some of our friends understand. So I will be working on those as time permits (if that means I have to wait till I have free time the wait will be long..LOL).

Good Night

Braden slept well last night.
He is getting ulcers in his mouth again. But this time we know to start the magic mouthwash right away. The ulcers unfortunately are a part of it due to where his radiation is located.
His neck looks pretty raw. We are trying to come up with another way for him to wear his magnet and medical id tag without having to buy a whole new med alert bracelet. The chain is irritating his neck.
He will probably be tired most of the day so we have a low key day planned with a little school work and some movies to watch.

Praise!

Radiation is being effective!

We had a lot of discussion and are cautiously optimistic. Still lots more treatment and appointments but just to know it is being effective is WONDERFUL!

Currently

Trying to catch this up so that I can post on it regularly from now on.

Currently Brae has two masses one in the cerebral magnum of the brain and the other on the stem. The one on the stem was putting pressure on his spinal column causing pain and numbness in his legs.

We are doing a 6 week radiation protocol.

Brae is doing so good with the protocol.

Today we will get test results back on how things are progressing as well as in regards to abnormal results.

pictures

I keep pictures close to me sometimes just to see how far Brae has come.

Here are a few when he was a very sick little boy.



and here is my little boy practicing soccer for the first time ever yesterday. Out there with all the other 9 year olds running and playing. No one would know that he is currently undergoing radiation, or that he has been so sick. I am so blessed by his attitude with everything.

Brae's Story

To type Brae's story out is no small task. I will hit some highlights and milestones and some I will feel in details that we didn't know until years later but now I can tell them as they happened.

Brae was almost 28 weeks when he came into the world. First thing the doctor said was we will be moving him to NICU and he would be on a ventilator probably 4-6 weeks. A week later he was weaning off the vent onto oxygen. He came home at 7 weeks. Weeks earlier than they had first predicted. He weighed 5 pounds the day I brought him home.

It is hard to pinpoint the exact point when we knew something was wrong. We now know that he had a rare rare reaction to his MMR vacination. We know that Brae's body actually seems to collect metals instead of dumping them on his own. Enviromental metals, etc.

At 27 months we were seeing a speech therapist, occupational therapist and physical therapist. One day the physical therapist told me she had him on the swing and he did a very weird thing with staring and then slumping that she had never seen him do and that he was really out of it. 3 weeks later we would have our first grand mal seizure. Matt was out of town in Pennsylvania and I will never forget the trip to Little Rock. At this point we had no clue what was going on. This would start a pattern that would go on for years without being helped by medication, etc.

At 3 1/2 during an MRI a mass was discovered it was benign but had to be removed using a gamma knife procedure. This too became a pattern. It was not until he was almost 6 that the high metal count was determined and they found that it may be the cause of the masses forming.

Brae is now 9 and I know I have skipped A LOT but know that we are still in a cycle of not knowing a lot about his condition. We know that it is very rare. We know that he has improvments and set backs all the time. We know that when we think we have it beat it rares up again. We know that he has a seizure disorder but not diagnosed as epileptic. We know that he has masses and must undergo radiation. We do not know why.

I remember one visit with a new doctor when Braden was 7. The doctor met with me before meeting Brae and was asking me questions like is he potty trained, etc. I was looking at the doc like he had a 3rd head and saying yes. The doctor told me that I needed to let him know what Braden was really capable of. I told him I was. The doctor then informed me that a child with as much white mass (dead areas) on the brain as Brae has would not be able to function as I have described. 20 minutes later after meeting Brae I got an apology and the doctor got to see a child that did not conform to his medical textbook. This is also a pattern we have....amazing doctors...and not conforming to textbooks.

As Brae's parents we don't stick to one thing either. Why try to force the square peg into the round hole. We use a mixture of mainstream and natural meds, we have both natural doctors, and medical doctors, chiropractors, nutrionalists, etc. We have found that just main stream was not enough and we do not feel that natural would be enough so we blend and so far that is what is working the best. We pray and try our best to listen to the direction the Lord wants us to go as we know that no odds would be defied without him.

Defying Odds

Defying odds.

Those words describe Brae like no other words can.

I have documented in the past Brae's medical and then quit. This time I plan to stick with it so one day he can look back and see just how many odds he has defied.