A little about my husband...

Here are some updates that I had done on Facebook

March 25, 09:
we went back to have the neuropsychological testing re-done on brad yesterday at the center for developmental learning at UNC chapel hill. this testing was done to compare the testing that he did back in september of 2008. brad actually tried this time and didn't keep telling the doctors 'no' when they would ask him to do something! i don't know if my "please try your best when doing these tasks" is what got him to do it or not, but the doctors he saw were very pleased that he was more willing to do the tasks! he worked with a physical therapist on motor "drills" (i observed) then got his hearing checked (i was in the lobby filling out some paperwork). after that he went in with the psychologist to do more testing and as i was observing this, i got called in to talk to the doctor. so we talked about things i've noticed and such. after we got done...brad and i went to lunch and she went to see another patient. when we got back the doctor examined brad and i hung out in the waiting room texting song lyrics back and forth with sara! lol

anyway...when the doc was done with the exam she called me back in there to discuss things. from her initial discussions with all the other doctors, there has been no significant decline in brad's motor functions and IQ (which as i mentioned before was on the low side in 1 part but normal in the other which made the whole IQ below normal). there were some things that had changed...his "gate" (i think)...is more pronounced (he waddles..lol) and the doctor did notice a substantial increase in brad's restlessness. that boy made me tired as many times as he would get up and walk around and look out the window and sit down and get up and change seats...lol (whew got tired just thinking about it!)

oh, while i was in talking with the doctor, the genetics counselor called and said the latest round of bloodwork came back negative so the good news is that they are thinking it isn't a genetic disease (so i guess if we want kids it's okay..but we haven't been told that directly)...but the bad news is...is that we still don't know what it is.

over all it was a long day at the doctors...but it wasn't bad news all around so that is good! we were told to look into getting CAP assistance. which is someone that would come into the house a few hours a week to work with brad and take him places and help out. so that's my next assignment.

we have the adult neurologist in 2 weeks so hopefully i can have some stuff done by then!!

March 26, 09:
i didn't put this in the earlier update, but sunday a week ago (2 weeks ago from this coming up sunday) brad and i were at dinner and the 2.5 hours prior to dinner, brad smoked 1/2 a pack of cigarettes (he hasn't smoke that much in a LONG time...and wasn't even suppose to have them..but that's another story). well, while we are at dinner, he starts acting funny...he gets this staring look on his face, his eyes start closing but before they do, i see his eyes roll into the back of his head...his hands are trembling when he is trying to dip the chip into his salsa..and his mouth is open....he is talking to me sporadically through this 20 minute phase and he says that it is a "nicotine high"...well when i described this incident to the doctor on tuesday she said the "nicotine high" was a stressor and she was pretty sure he was having a seizure. this is new...so we are keeping an eye on him and hopefully they won't be common occurrences....

April 8, 09:
well, we went to the neurologist at UNC yesterday that specializes in dementia. the short of the long is basically he labeled brad's disease as "frontal lobe white matter degeneration (non-familial)" which means the white matter (which connects the grey matter) is deteriorating and it is not genetic. so when asked if we could have kids he told us "i'm not going to tell you yes and i'm not going to tell you no" so we are going with the "if it happens it happens" philosophy.

the one great news we got out of the appointment was that this doctor does not think that brad only has a year or two left. he didn't want to pin down a time or anything, but said he would be very surprised if it was 2 years, just as he would be surprised if it was 20 years. i got him down to about 5 to 10 years! which alot can happen in 5 to 10 years with medicine...ya know...something might come along and prolong his life even more!

we are still doing everything we want to do when we want to do it and not planning far into the future...living life day by day still.

we are getting his medicine changed to treat the symptoms he is experienceing now..and will have to continue to do that as the disease progresses.

we are at the end of the road as far as blood testing. we have a brain biopsy scheduled for 4/30 with pre-op/pre-care stuff on 4/29...so i will probably be incommunicato during that time...unless i can get wireless in the hospital! lol

please pray for steady hands, knowledge and wisdom for the doctors and that everything goes smoothly with the procedure. there are risks but we think the risks are worth it for the 50/50 chance we will learn something more about what is going on. but there is that chance that a brain autopsy will need to be done after the day brad passes on so we can get a true answer as to what this crap is!

April 30, 09 (brain biopsy):
well it's been a long day today!

we had to be at the hospital at 6am today to get brad prepped for surgery. the procedure was to take about an hour or so but took a little longer (will explain in a minute)...we got a page around 10:45 to go back and talk to the surgeon.

first off, yesterday we spoke to the doctor and he said that he had been thinking and wanted to change the procedure from a needle biopsy to an open hole biopsy. the risk increase was minimal and the doctor felt that taking a bigger portion would allow for a better chance to get results. though we are still not guaranteed any answers. so we agreed. rather have this done and know that we did everything we could than do the needle and get no answers and always wonder if we could have gotten some answers with the open hole procedure.

the doctor said that the procedure went well and that they were able to get a good sample to send to pathology. he said that once they were able to remove the piece of skull that normal brains usually bounce up (kinda like a marshmellow) but brad's didn't..he actually sunk a lil. well this was due to atrophy in brad's brain. this also allowed for a little more bleeding and "oozing" than what the doctor liked, but the doctor said that he was about to contain everything. and that all in all the surgery went well. he said he wanted us to come back in about 10 days to get brad's stitches out and to get the results from the pathology report. if the results aren't back, then we will have the stitches taken out at home and then come up when the report is ready for the results. we could get them over the phone but myself and the doctor would rather meet face to face.

so we waited a few hours for brad to get into ICU (he's going there to be monitored to make sure that there is no swelling or fluid on the brain that could be bad)...when we saw him in recovery about and hour and a half after the procedure, he was out of it but knew who we were (we had to go back 1 at a time)..so that was a positive sign. when i was talking to the nurse as he slept, she said that all of his neurological indicators are in tact...so basically they didn't nick anything! which is good!! lol

i just was in his room and he is drifting in and out of sleep but is aware and alert. his nurse said that brad was doing good and that he was pleased with brad's progress and he thinks brad will be moved out of the ICU to a regular room tomorrow. so i'm thinking we may be going home on saturday. at least tomorrow night i'll be able to sleep in the room with him instead of out here in the waiting room!

May 4, 09:
Just wanted to let you know what was going on with Brad. We were released from the hospital on Saturday and Brad was VERY eager to get out. He was able to sustain a high oxygen level (95), which was a reason we would have been kept there longer, without having oxygen pumped into his nose. So we were happy about that.

Once home, Brad was (and still is) hard to keep from doing too much. He won't ask anyone to get him anything and so he is up and down and up and down. Saturday night we noticed his face was swelling and it wasn't getting any better. In the morning, the swelling wasn't going down and appeared to get worse so I called the hospital and had the resident neurosurgeon on call paged. He called back and I told him about what was going on and he said that it could be like a bruise, isn't that bad for the first couple of days, but then worse after 3 or 4 days and then it starts getting better. He also said that there could be spinal fluid leakage and if that is the case then it will take longer for it to get better. He did not seem concerned about it because there is no leakage from the incision. I explained to him that around Brad's incision there is a glisten, but there was no oozing or anything from the site. He again did not seem concerned. He said that if the swelling hadn't gone down any or had gotten worse by Tuesday or Wednesday, for me to call the surgeon's office and let them know. I looked at him this morning while he slept and there doesn't seem to be an increase in swelling. He is to try and stay upright as much as possible to help with the swelling.

We spent a good part of the day in bed yesterday but then after talking to the doctor, I tried to keep him in an upright position or at least reclined and not laying down. He somewhat behaved..but we had to get on him more than he behaved! lol

We are suppose to get a letter from the Neurosurgeon's office and the Neurology Clinic for follow up appointments in the next 10 to 14 days (from Saturday). We will get the results from Pathology then and Brad will get his stitches out. I will update yall once we get back from those appointments, unless anything happens with the swelling and we have to go back sooner!

Again, thank you all for your prayers and well wishes! God is good and will get us through this as He has everything else in our lives and everything in the future! Our trust is in Him!

May 20, 09:
So over the past month or so I noticed that he drinks a ridiculous amount of fluids a day. Last week alone, he went through 5 2-liter caffine free Mountain Dews, a 18 pack and 6 pack of Propel water and drank about 16 regular bottle waters. That was from Sunday to Thursday and only that was at our house. He also would get drink when he was at his parents (usually Pepsi Max Zero or small bottles of Mountain Dew) He has NEVER drank that much before. He says "it's what I do" now when we talk about it, but it isn't how he used to be.

So I emailed one of his doctors to see if this is something that could be related to his disease or maybe something else...she told me that we need to get brad checked out as soon as possible. She said his adrenal function needs to be checked and he needs to be checked for diabetes (both his parents are diabetic) as well as his electrolytes need to be checked. She also said that because of what is going on with his brain/nervous system it may cause an electrolyte imbalance and ultimately place in him at risk for seizures. So I to call his doctor at UNC to see if we can push his appointment up. If not, I'll call our family doctor and get this stuff checked out as soon as possible!

*sighs* One more thing added to the plate...but God is good and He will bring us through this hurdle too!!

June 18, 09:
Okay so we went back to the neurologist today to get the results of Brad's biopsy. The results showed something and we found out a name of what Brad has...which in and of itself is a victory. Brad has been diagnosed with "Adult Onset Leukodystrophy with Neuroaxonal Spheroids"..I tried googling this and nothing came up...it is that "new". The doctor said that 6 months ago there was nothing written about it and article with 4 cases of this disease that he gave us was published just in the past few months. This type of leukodystrophy is a rare one with no treatment or cure. He said that we will treat the quality of life and give Brad the opportunity to live the best life possible.

He tweaked Brad's meds and has added this medicinal food stuff to help keep Brad's brain functioning on an "alternative fuel". He said that our brains run on glucose..which he compared to gasoline for cars...the stuff he is going to have brad on in about 4 weeks, is a powder that he mixes with 48 oz of water to make a vanilla flavored drink...its called Axona. THe pamplet we got said that since this is consumed like food, it is digested like everything else and that when it is metabolized by the liver, a substitute for glucose is created called ketone bodies. The ketone bodies make their way to the brain and can provide up to 60% of the brain's energy requirements. So by increasing the amount of fuel to the brain...Axona may help to improve cognitive function. The doctor said that we can see a difference in as little as a day..but he said if we don't see any difference in a month, Brad can stop taking it. Hopefully it will help.

In the tweaking, the doctor is also hoping to curb Brad's fidgetiness and constant movement...we shall see.

I'm also going to be in touch, sometime today, with the social worker that works with Brad's neurologist to see about getting someone to come to the house a few hours a day. I found out that while I was away that Brad "snuck" off and made a trip into town to go buy cigarettes...but he didn't have enough money. One of his cousins saw him and asked if he could take him whereever he was going and Brad refused. Brad's mom "looks after him" during the day and I think it is becoming a little hard for her because he is constantly back and forth from our house to theirs. She probably thought he had come home when he went into town. She can't keep an eye on him every minute and if we get someone to come in...they can while they are here and it will give her a break to do things she needs to without worrying about him being at home alone. Hopefully the social worker can get us in touch with someone near by. I will keep you guys updated on that when things happen.

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Thanks for reading...I'll update here now as I update FB!
Krista