It's been almost a month I know. Several people have been hinting to me that they are still checking the blog! Let's see. What's been happening over the last month. Yesterday marked 10 weeks since the last seizure! Hooray!! Aaron is still doing therapy for his right arm/hand. These last few weeks have been spent working on a contraption for his hand and doing electro stim.

At therapy yesterday Aaron discovered that there is a little bit more sensation in a couple of his fingers -- after Michael stuck him in the finger and Aaron jumped! He goes back on Friday for a final fitting on the contraption and then I think he'll have a bit of a break. We are still believing though, that even with this plateau that feeling and use will still return! I will post pictures of Aaron wearing his contraption when we bring it home. It's pretty interesting looking!

Aaron will be gone next week on the much anticipated camping trip. He's a little leary of fishing since he's only got the one hand to use now. We looked online and there are actually several companies out there who make fishing gear for one-armed fishermen! If only we had looked sooner and had the time (and money) to get it here before he leaves! Oh well, maybe next trip!

Well, I know this isn't much, but at least it's something, right? I'll be posting pictures soon! Thanks to everyone who continues to ask about and pray for Aaron. That has been such a blessing to him and us! Blessings to all!

By now I'm sure I'm the only one checking in on the blog. It's shameful that it's been this long since I last posted. Let's see -- what's been happening? Aaron had another re-evaluation at therapy last week. He has hit the dreaded "plateau" on the progress chart. He has made tremendous strides in the area of "gross movement", ie lifting his arm at the shoulder, improved strength, etc. The plateau comes in where the use and strength of his hand is concerned. He has made progress in that area, just not as much since the last re-evaluation. He still has decreased sensation/feeling/movement. Michael, Aaron's therapist is in the process of constructing a contraption of sorts to assist him in opening his hand. It's quite the sight, but if it works for him, then we will start bugging the insurance companies to foot the bill for the real thing. As soon as I remember the name of the company that makes it, I will add a link. It's pretty interesting!

Aaron saw his neurologist last Thursday. Tomorrow will be 7 weeks since the last seizure!! Dr. Chung said to come back in September and if he continues to be seizure-free, then we will begin looking at reducing one of his medications with the goal of being on 2 versus 3. He said that the short-term memory issues that Aaron is experiencing may be permanent. He also said that typically 6 months post-surgery a person will have recovered 90% of what they will recover. Six months will be in September. Aaron wasn't exactly jumping for joy over that news, but I reminded him that doctors tell you only their best guess -- he could just as easily recover 100% at the 6-month mark! God created that brain so we're trusting Him to have the final say!!

All in all, things are going very well. Aaron has waffled back and forth on whether or not he should start looking for work or continue to pursue school in August. The biggest question mark of course is whether the memory problem will be an issue in school. Obviously if you're forgetting what someone says to you, being in a classroom could be a bit challenging. He's still got some time to make that decision.

Well I guess that about does it. Aaron will finish out this week and possibly next week in therapy and then take a break. The idea is that if/when movement returns, then he would resume therapy. That's what we're counting on!

Thanks to everybody who continues to ask about Aaron! Blessings!

Has it really been that long? I guess it has. I have been trying to get on here to write a post, but I don't think I have held still since the last one! Aaron is doing very well! He was approved for another round of twice a week therapy. Today the therapist gently brought up the idea that there's the possibility Aaron won't regain use of his right hand. He said he didn't want to be discouraging, but that we have to be realistic and consider the possibility. Aaron nodded, knowing that of course that could be the case. He's been kind of quiet since the appointment as I'm sure the weight of that thought is on him. My feeling is that if the surgery is successful at eliminating the seizures, then we can deal with the loss of use. Easy for me to say as I sit here typing with two good hands.

Aaron has been giving some thought to school in the fall. It's hard to know what to do. Memory is still an issue and he has finally acknowledged that. Guess we'll see.

On a brighter note, it has been 3 weeks and 3 days since the last seizure!!! Hooray!! Aaron sees his neurologist on June 12th so we're looking forward to that!

I guess that's all from here! Thanks to everyone for your continued care and concern! Blessings!

Progress measured in inches. Aaron had a re-evaluation yesterday at therapy. (I'm sure you remember that he graduated from physical therapy very, very quickly which is miraculous!) In occupational therapy, which works with small coordinated movements (fine motor) like grasping, etc, progress is measured literally in inches. Even the slightest movement by a muscle can be charted through bio feedback. When Aaron began therapy his ability to "pinch" (thumb and index finger) was 0. Yesterday it was as high as 9 pounds of pressure! His ability to grip (whole hand) went from 3 pounds to 38! Wrist extension, which measures his ability to move his wrist has improved from a limp wrist up to even with the level of his arm!

Needless to say, Aaron wasn't jumping for joy with these results. But his therapist, Mike, is very good about reminding Aaron that progress is sometimes measured in inches! He also said that recovering use of his hand may take as much as a year, or even longer. Again, Aaron wasn't impressed by that news.

It will be 2 months next Wednesday since the resection surgery. Aaron has come a long way, but we know there's a ways to go. Short-term memory is still an issue and a rogue seizure will still pop up every once in a while. He is still contemplating school in the Fall, but of course memory problems will have to factor into the decision.

We know that God is in control and quite honestly, I'm very thankful for that! I certainly would not want to have to carry all of this around by myself! Time is definitely on Aaron's side so he (and we) just keep moving forward! Blessings!

Healing is an interesting thing. Aaron is doing really good! What's interesting is that there seems to be a sort of cycle that his body is in where healing is concerned. He seems to go in spurts where he has great energy levels and feels great. Then he has a day where he hits the wall. Today is one of those days. Nothing frightening by any means, but I think he's going through another healing phase. He'll get to late afternoon and then he just crashes. He'll sleep for a few hours and then just kind of lay around the rest of the day/night. It's barely been a month and a half so he's got a ways to go, but all in all I think he's doing quite well!

Tuesday he had another seizure -- after showering again. It was exactly two weeks after the last one -- same scenario! He gets a little discouraged but all in all handles it well. He's still going to therapy twice a week and has made some progress. Of course, it's not nearly fast enough for him! We aren't seeing a lot of new sensation and movement of his right hand/arm. Hopefully it's just a plateau before the next big leap! I know that's what Aaron is hoping for. We have discussed the possibility that the additional weakness may turn out to be more permanent -- especially since that is something the doctors all said was a possibility. Aaron doesn't like that thought much, but he is very strong and determined, and if there is a way to regain what's not there now, he will do it!!

Back on the seizures after showering topic. I have been doing a lot of research on the subject, and believe it or not, there's quite a bit out there on the worldwide web! I have found a considerable amount of info coming out of countries such as Brazil, India and Australia. I even came across a term for it: bathing epilepsy. Go figure. A study out of Brazil looked at 3 particular subjects, all of which showed the same "symptom", which was seizures after showering/bathing. The hypothesis all along has been that it's the temperature (hot to warm) of the water rather than the showering itself -- in fact that's what Aaron's neurologist attributed Aaron's pattern to. What the Brazilian study concluded was that in some subjects water temperature was the cause and in one, it was just the water itself or the "complex tactile stimuli". Yeah I know, too much information. But I find all of this so fascinating! Anyway, bottom line is, limiting the amount of time that the water is hitting directly on the head as well as on large areas of the body seems to decrease the chance of having a seizure! And of course water temperature plays a role too. Here's another fancy term for you -- "water reflex epilepsy".

What I want to know is how come it took us so long to finally put 2 and 2 together on this??? We know that getting overheated is a trigger for Aaron, as is not getting enough sleep and illness. But showering?!?!? Needless to say, Aaron is going to be a guinea pig for a while. Can't wait to see his neurologist in June!

It's hard to believe that it's been 5 weeks since the surgery! Aaron has made truly amazing progress and will I'm sure continue to improve over the coming weeks! I have put up new pictures of Aaron at occupational therapy earlier this week. He goes twice a week and I think that each time he goes there's something he can do that he couldn't do the last time he was there! All of the "gadgets" you see in the pictures are designed to help him not only with strength in his hand/arm, but also to gain coordination. His brain is having to be trained to "recognize" that there is a right side to his body. The sensation hasn't changed much on that right side, but he is slowly regaining control and use. He is very determined to get that right hand working again!

It's been over a week since the last seizure!! Hallelujah!!! Aaron has gotten into a routine of taking his showers in the mid to late afternoon and of course, taking coool and quick ones. There are other subtle changes that we notice in him since the surgery. Before surgery, he was very jumpy -- I could walk up behind him and pat him on the back and it was as if he'd jump out of his skin. That doesn't happen anymore! Short-term memory has improved some, and he doesn't seem to get stuck on words as much anymore either! Don and I just notice something "different" about him. It's not a very pronounced difference, but we do notice something. It's going to be interesting to see how this all shakes out as time goes on. Believe it or not, even after 5 weeks, his brain is still healing and reconnecting, so I'm sure we will notice more in the coming months.

Hope you all enjoy the pictures -- even the goofy ones! Blessings!

Aaron went to rehab twice last week and on Friday, the decision was made to discharge him from the physical therapy portion! His balance has greatly improved and he's walking much, much better. It's been tough for the therapists to know just exactly how far to go with him, given the fact that they didn't know him pre-surgery and how pronounced the weakness in his right side already was. He was sent home with some exercises to continue doing and he will also continue with occupational therapy twice a week. That seems to be going pretty well for him. He has sort of reached a plateau where the return of use/sensation is concerned. He is very determined to at least get back what use he did have of his right hand/arm prior to surgery. Knowing him, he'll do it!

Other than that, he's doing quite well! There are still some issues with memory and his ability to get certain words out and with their sounds in the right order. He also still gets pretty tired about mid-afternoon. All in all, I'd say he's recovering quite nicely -- even quicker than I would've anticipated!

His buddy is home for the summer from Pepperdine so he's pretty happy about that! In fact they're spending some time together tonight! Welcome home Matt!

That's about it from here. Time is certainly on Aaron's side! Blessings!

Well it's been a week since I last wrote. Aaron had another seizure this morning -- again after his shower. There is some kind of connection there but we just can't quite put our finger on it. Is it the heat or the actual water itself? I think I'd mentioned earlier that I read on an Australian epilepsy site about water from the shower or bath causing seizures in some people. That was the first time I'd ever seen that. We continue to trust and keep perspective though. Aaron is 1 month tomorrow away from brain surgery.

Today was the first "real" rehab sessions. They worked him over good! He now has enough control to be able to pick up a golf ball (with some effort) and put it in a bucket, and do a few rounds on the leg press machine! More of the sensation is returning to his right side and his balance has improved some. There are still issues with short-term memory, which he thinks is a crock, but we notice it. Every once in a while he seems to have a problem calling up certain words. They just don't want to get out of his mouth with the sounds in the right order. That doesn't happen very often, but when it does, he gets a little flustered.

Please continue to remember him in your prayers! He's got a ways to go but each week we see progress! Blessings to everyone!

Had every intention of posting yesterday but time didn't allow it. I was going to make some April Fool's joke like, Aaron's brain fell out! But you all were spared my sick sense of humor.

Aaron had his first appt at the neuro rehab place. We were there for almost 4 hours! His PT, Camille and OT Michael are just really, really nice people! Aaron will be seeing them 2 times a week for the first couple of weeks and then once a week for an undetermined period of time. We've heard estimates of 6 weeks to 3 months, so guess we'll have to wait and see. Michael made a splint for Aaron's right arm that he is to wear only at night, that keeps his hand open and his thumb out. It's kind of cumbersome but it's part of the healing process.

Thanks to everyone who continues to check up on us with notes and/or phone calls! We are continuing to pray for Aaron that he does recover the use and sensation of his right side. He gets frustrated sometimes because initially improvement came almost everyday, and now he's hit a bit of a plateau. I think that's where the neuro rehab comes in. I expect him to see more improvement and progess over the coming weeks as he goes for therapy.

Blessings to all, and Happy Spring!

We had a very encouraging appt with Dr. Chung (Aaron's neurologist) today! Aaron ended up having another seizure on Saturday, both being immediately after his shower. Dr. Chung wasn't disturbed by that at all -- in fact he said that any seizures that occur in the 2 weeks post-surgery don't even count!! That brought a smile to Aaron's face! He told Aaron that he did and continues to do remarkably well! They are all very pleased with his recovery and progress so far! As for the seizures, taking showers has always been a trigger for Aaron. I did some reading over the weekend about water causing seizures in some folks, whether it's shower or bath. Dr. Chung said that in Aaron's case, more than the water it's the temperature of the water -- too hot! He said it's very similar to Aaron being predisposed to having a seizure when he gets overheated -- same concept. So for the last 2 days, Aaron has taken quick and cool showers!

Dr. Chung said that with the neuro rehab (which starts tomorrow!) he should regain the use and sensation on his right side, much like it was before the surgery. He also said that he doesn't want to do anything medication-wise this time, but to come back in 2 months and then we'll talk about making some medication changes.

All in all, we were very encouraged by the appointment! Dr. Chung doesn't sugar-coat anything which is good, even hard to hear sometimes, but I'd rather that than building us up and not being completely forthcoming with things we need to know. No one likes surprises.

So, that's it for today! Tomorrow begins neuro rehab at 8:30 a.m. Aaron will be there roughly 3 hours and I'm sure will be completely exhausted when he gets home! This initial appt will be longer than what he can expect in the future.

Hasta Luego!

Trust in the Lord with all your heart and do not lean on your own understanding....... Aaron had a seizure this morning. Caught us all by surprise. It was very mild and short, but still it upset Aaron tremendously. Don and I weren't feeling so hot ourselves. I called his neurologist who is out of town until Monday, but did get a call back from his nurse who did speak with one of his partners. He said he wasn't overly concerned considering that surgery was 2 weeks and 2 days ago, and that there is still lots of healing going on and brain swelling still going down. We already had a med check scheduled for Monday with the neurologist so that's good!

It took about half the day before Aaron really started to relax again. I pulled out a few emails that I kept from the yahoo group I belong to, where several folks have stated that seizures post- surgery are not all that uncommon. We know all those things, but you know, it's still a bit disconcerting. We will stay encouraged and obviously talk all of this over on Monday when we see his doctor.

More later!

Okay, I've been "chastised" a couple of times for not writing as frequently as I was! I just didn't want to post with nothing new to add and bore everyone! Let's see -- the only thing that's new is that Aaron begins neuro rehab on Tues the 1st. It is an accredited stroke rehab facility that is affiliated with Banner Hospitals. So far, everyone I have talked to there is very, very nice so we are encouraged and excited for Aaron to begin rehab! He has still not regained much use of his right hand, which weighs on him sometimes. A lot of the sensation and movement has returned to his entire right side, but there are still areas that have not recovered yet. I am sure that his brain is still trying to "regroup", after having been messed with just 2 short weeks ago! We remind Aaron of that regularly -- I mean look how far he has come in such a short time! The scar on his head is becoming less and less noticeable, his balance is improving and even though he still tires easily, it's certainly not like it was even last week!

I'm sure there will be more to write as these next weeks come along. Rehab is hard work and Aaron is going to need lots and lots of encouragement! Blessings to all!

Don't know if anyone's still reading this, but what a day!! Aaron saw the surgeon today for follow-up and to have the stitches removed. He told us that he is very pleased with Aaron's progress, almost 2 weeks post-surgery! He also told us something we've waited 21 years to hear. He actually has a name for what happened to Aaron's brain, way back when he was just a little speck! Focal cortical dysplasia. That is the fancy way to explain what happened to cause the damage to Aaron's brain!

He had the final pathology report which he read to us, and of course 99% of it was greek, but he did explain some of it. He said that as an embryo, at the stage where the brain is actually forming, which is done from the inside out, it grows outward to finally form the gray matter (outside). It pulls along with it everything needed to form the necessary connections/wiring, and in Aaron's case, something happened in that process that caused those connections to get all bunched up with nowhere to go -- nothing to connect to. Therefore, a part of his brain had all these short circuits which ended up becoming seizures.

We were completely floored! After 21 years of speculation, to finally have a definitive answer is just overwhelming! I don't mean to sound so melodramatic, but WOW!! For such a time as this! My aunt pointed out to me the other night that all of this is what we have been kept here for! All the years of trying so desperately to get out of Arizona, and hitting nothing but closed door after closed door. And you know, Aaron having this surgery years ago could have meant not having as good an outcome -- technology being what it is today! My uncle said something a few weeks back about Dr. Smith getting all of his training and experience, just for Aaron! Amen to that!

God is faithful to complete what He starts! This is NOT over! In fact, it's only beginning! Aaron will start neuro rehab this week and as time goes on, he will decide when to pursue school again. If you were to see him out and about, you would never know that he is recovering from brain surgery, 2 weeks ago!!!! He will see his neurologist next week for a med check.

Thanks again to everybody for checking in on us! It sure has been hard having to actually make meals this week! We were sooo spoiled last week by all the delicious meals that were brought over! Yum! Blessings to all!

What a difference a week makes! To look at Aaron, you'd never know that just one week ago he had a chunk of his brain taken out! Wow!! He is virtually pain free, until of course his mother accidentally elbowed him in the head -- yes right in the stitches! Way to go Mom!!!

Aaron's balance has improved immensely and the double vision is about 98% gone! He only uses the cane around the house when he starts to get tired. We will be visiting a rehab center tomorrow. They only contract with Aaron's secondary insurance, so we need favor with the primary insurance company. You can add that to the prayer list. It's not very far up the road from us, and they came highly recommended!

Our biggest challenge right now is staying well! Collin is a sick puppy today. Finally took him to the doctor and now he's on antibiotic. I really don't think he's contagious at this point, since he's had this now for over 3 weeks! I think it just stuck around and turned into a nasty sinus/lung infection.

We have been so spoiled this week with different folks bringing us dinner! I think I have now gained back all the weight I lost while Aaron was in the hospital! Thanks to everyone for your kindness!

That's it for now!

Ah sweet sleep! Sunday night wasn't so great, but last night sure was! I'm beginning to actually feel a little more normal now! (hey! no blonde jokes!) The double vision is almost gone for Aaron and he got away with only taking one-fourth of his pain med last night. He took a trip to Wal-Mart yesterday and tooled around the store on one of those motorized carts. Look out! I think it was good for him to get out.

Thanks to Laura for bringing us a very yummy dinner last night! I think we're beginning to get spoiled!!

That's all for now. Just still looking for an OT/PT place that specializes in brain injuries, so if anyone knows of one, please let me know! Blessings!

WE'RE HOME!!!!! Aaron has already had a shower and is resting comfortably! Seems so strange to have all of us together in the house at the same time!

Even though we're home, the work is only beginning! We have doctors' appointments to schedule, physical and occupational therapy to arrange, and a home health company needs to deliver a quad cane for Aaron. The pain has almost completely diminished, with only a few flair-ups at night. The double vision is still bothering him but the doctor said that should continue to disappear with time. Everyday he has increased sensation in his right side! We're anxious to get PT and OT going so that his recovery keeps chugging along!

Already we've had phone calls for dinners being brought over -- THANK YOU SO MUCH!!!! As I've said before, we are just so touched and blessed by everyone's kindness!

Tomorrow is a new day and a new week which I'm sure will prove to be full of activities. I will start taking work again tomorrow and Don is going to work from home. I'll keep posting updates as the days pass! Oh, and of course more pictures are coming as well!

One last night in the hospital! HOORAY!!! Collin and I came up this morning and then Don and Collin went home. Aaron had his first shower in 1.5 weeks and he said it felt great! He's got a cane to get around with and he's managing quite well! The double vision is still a problem but we anticipate it going completely away.

We borrowed a wheelchair and took a walk over to the rehab hospital to have a look around. Wasn't what we were anticipating. Aaron is adamantly against a rehab hospital stay, and we really can't blame him. In fact, being a 21-year-old, he doesn't require our permission so it's pretty much up to him. He/we know he needs PT and OT (rehab) but feel like maybe he can get that on an outpatient basis. His doctor feels like he'll be just fine going home so we're going to press for orders to be written in such a way that he can get his rehab at an outpatient facility.

When I sit down and think about what has occurred in just a mere 11 days, it boggles my mind! Two brain surgeries, two ICU stays and Aaron seems almost unphased by it all! His pain is all but gone, there is increased feeling and movement in his right side everyday and his appetite is almost back to normal!

To think that tomorrow night we will all be in the same place, at the same time, sleeping in our own beds gives me goosebumps! Hooray!!! I can hardly wait!! Aaron is already starting to plan his first big meal after returning home -- from the sounds of things, I'm going to be busy!

I just can't say thank you enough times for all of the notes, phone calls, visits, emails, prayers and encouragement from so many people! God has truly blessed us with caring and loving friends and family!

I will continue to add updates in the coming days so staye tuned! Oh, and of course more pictures -- not the nasty ones from the OR, unless you want them! They are really pretty fascinating! Hasta luego!

HOORAY!!! Aaron's coming home tomorrow! Dr. Smith said it could be today, but we opted for one more day. The feeling and use of his right side is being restored little by little each day! Double vision is still a bit of a problem but you know, I think I'd have triple vision if someone took out a piece of my brain and then kept me loaded on pain meds for 3 straight days!!!

Aaron was able to walk around some yesterday, with assistance, which made him start feeling better almost immediately! His appetite has definitely returned and they removed his IV yesterday.

I came home yesterday morning and slept some, but I did sleep great last night. Still feels like I could sleep another couple of days though.

HUGE thanks to Laurie Woolsey for the yummiest chicken noodle soup I have ever eaten! How great it was to open up the fridge and find a big container of that in there! Yum!

Collin and I will be heading up today, after I try to make a dent in what looks like the Mt. Everest of laundry in my room! Warning to anyone who comes over in the next few days -- we've just been dumping and running for over a week now so this house is a disaster!

Thanks again for everyone's prayers and encouragement! You will never know what it has meant to us!

Aaron finally got moved to a regular room last night. He's on the same floor that he was for the monitoring, but in a different section. He slept like a rock last night -- wish I had. Of course, if I had percocet coursing through me, I probably would've slept too! Hey -- there's an idea! Except I'm not too keen in brain surgery!

Aaron's experiencing a bit of double vision but that should clear up soon. His right hand opened up sometime during the night. Seems much looser now which is so encouraging -- especially for him!

Hugs and thank yous to Joe and Lidia for coming to visit last night. That really lifted Aaron's spirits! Lidia prayed for Aaron and he remained calm the entire rest of the night with hardly any pain or discomfort at all!! In fact, I'm looking at him right now and he's still asleep!

I'm going to head home as soon as Don gets here and try to get caught up on some very needed sleep. More later.

Don't ya just love good news??? Dr. Smith was just in and said he believes Aaron will have a great result!!!! He said he was surprised by the condition of the area of tissue that he removed -- it stood out like a sore thumb! It was all rubbery and bumpy and just basically yucky! Can't get much more obvious than that!! It was a tenuous task, given that this area was right smack underneath an area that is in good shape, that Aaron is using for speech and movement. Already we are seeing some improvement in his right side -- NOT EVEN 24 HOURS POST SURGERY!!! Is God good or what?!?!? There is more movement and more sensation!

Don and I just wanted to jump around the room! If we weren't in ICU, we probably would have! Probably would get thrown out anyway! It sounds like Aaron may be able to bypass a rehab hospital stay -- in favor of outpatient PT and OT! Yipee!!!

The next time someone tells you they don't believe there's a God or that prayer works, refer them to us, would you? My son is living, breathing proof that the prayers of many have been fruitful! More later!