Long time no talk...

I just realized it's been since December 2002 since I've posted!! Wow... that's three years! Our lives have taken many turns in the past three years, but probably our biggest leap is the birth of our daughter in April 2003. Aleice Maelyn arrived six weeks early, but very healthy. She's now a very active 2 1/2 year old! Alex turned 7 yesterday and we're planning a big party for him tomorrow.

Now about Larry... He's doing very well on a combo of Keppra and Lamictal currently. He's had a few break-through seizures lately and a grand mal, but we think they are due to not taking meds on time or tiredness. He has an appointment with Dr. Brower in February, so we'll see if he makes any changes to the meds after reviewing Larry's seizure diary.

Larry is about to buckle down and take all the architectural exams, so hopefully he'll be a licensed architect within six months. The kicker on that is going to be the stress involved...so please pray he makes it through with minimal seizures!

That's our update! Feel free to drop me a line if you have any questions. :-) I'll try to keep this more updated... yeah, right.

Larry is doing incredibly well on his new medication combination. He is now on Keppra and Lamictal and having very few of the smallest seizures he has. Praise God! He seems to have them in clusters through the month...not continually. He is driving back and forth to work now, but not really on the long trips, unless I'm just too tired to go on.

We had a wonderful Thanksgiving and Christmas. For Thanksgiving we went to Temple to visit my family. The long 9 hour drive was made longer when 12 miles from Temple we ran across an accident! ARGH! We found a way around it an hour later and made it to Temple around 1 a.m. I was still fighting the morning sickness, but I managed to put away my fair share of food! ;-) Larry and Alex enjoyed spending a day or two helping my dad at the ranch. Alex really loves going to help his PawPaw at the ranch! Larry loves it, too...it's just such a different life than we have it's so nice to enjoy something so different! When we got back home the following Sunday evening, I was worn out and spent the next week in bed with a Fibromyalgia flare. Unfortunately, Larry had to pick up the slack around the house...which he's done very graciously! I don't know what I'd do without him!

Christmas was a blast. We posted a bunch of Christmas photos on our site. Our Alex really enjoyed it this year...his first to really get into and understand. :)) He just knew Santa was going to bring him a Buzz Lightyear and Sheriff Woody doll. Thank goodness Santa found them at Walmart! He loved playing with all his cousins and getting to know them better. And of course, he loved spending time with his Grandma and E-pa!! We all did! We came back Christmas night exhausted, but very very happy.

Alex's birthday is in just a couple of week now...January 12th. We're having a family party for him on Saturday, the 11th. :)) Boy, more presents for that kid! Larry ha an appointment with Dr. Brower in January, and I have a prenatal appointment also in January. I'm hoping now that the morning sickness has finally calmed down, I can keep up with this site and our Faces of Epilepsy site much better. Forgive me for being so lax!

Well, a quick update here...

We had a scary episode on Wednesday when Larry od'd on his Carbatrol. I don't think I've ever been that scared in my life. He called me from work saying he didn't feel well and would I come and pick him up. By the time I got here he couldn't walk because he was so dizzy, had doublevision, blurred vision, and slurred speech. He wanted to call his doctor's office first, and we had to find childcare for our son, so we headed home first. He got changed, the doctor of course said head to the ER, so we headed over there. I'm so ticked at the ER. I don't know if they could have done anything, but all they did was take his blood and put a heplock in. Seems to me they could have given him an IV to dilute the drug in his system, though! We were there for three hours until they released him. He could at least KINDA walk when we left. He got better as the day went on. Turns out the Keppra they started him on is making his Carbatrol level increase. So we decreased the Carbatrol by 600 mg a day since he's coming off of it anyway. The Carbatrol and Lamictal interact, too, so we're ready for him to get off the Carbatrol! He'll be off it in another 2 weeks. Yay!

Larry's appointment on October 16th went very well. The doctor decided to push his Keppra up and take him off the Carbatrol. So now we'll be doing that a TAD differently than planned, but that's okay! The best news is that Larry has only had one "dizzy" spell (mildest seizure) in October! September was by far his worst month ever and October has been his best month ever! Go figure! I feel the Keppra has really made a difference. I hope we can get through this medicine change without seizures. I doubt it, but we can always hope!

And news about our Jellybean...the next picture will be taken this Wednesday. I'll post it to our website when we get back. We're hoping to see a miniature baby in there! I'll be almost 11 weeks pregnant when we do this ultrasound. I've been very very ill with this baby. Nothing like when I was pregnant with Alex. It's been so difficult to survive this. I'm hoping it ends soon! Please pray it does. I've spent more time in bed the past four weeks than out of it. I also had a fibromyalgia flair up on Thursday...I'm sure because of the stress of Wednesday.

Love and hugs to everyone!

Sorry it's been so long since the last update! It's been crazy around here...

After that last positive update, things changed for the worse. Larry's seizures have increased and he's had at least one more grand mal since I last posted. He's back to having 2-3 seizures a day. So very frustrating when we thought the Lamictal was our hope! I called Dr. Brower after his last grand mal, and he's decided to add Keppra to Larry's drug regime. So he's now on Keppra, Lamictal, and Carbatrol. We are praying fervently this will be the solution. Today was Larry's first day on the Keppra and at lunch he was so dizzy he could hardly walk. I'm hoping that is just a first time side effect and it wears off!

Larry has been walking home from work every day...a mile and a half trip one way. I'm very proud of him. He's determined not to gain back the weight he lost with Topomax. He's only gained back 5 pounds so far...but he's also working on not gaining!

We also got wonderful news about three weeks ago...we're expecting our second child to join our family in May 2003! We're very excited. We had put off trying for this child until after Larry's possible surgery situation was resolved. As soon as we knew he wasn't having the surgery immediately, we decided it was time! It's very exciting and Jellybean's big brother is the most excited, I think! We have posted our first picture of Jellybean at our website. Feel free to browse over and take a look. It's not very thrilling..not much there yet, but we did see the heartbeat. We'll get another photo next month and post it!

Larry's next appointment with Dr. Brower is October 16th. We'll post more then, I'm sure!

Oh! One last thing...I was diagnosed last week with Fibromyalgia. It is treatable, although not curable. Hmmm. Sounds familiar, eh? So I guess we're meant to be together with our chronic illnesses!

We've spoken to the neurologist again. Good news is that Larry has only had 9 seizures (including his "dizzy" spells) this month! Down from around 40. So since we feel the Lamictal is making some headway, we are going to stick with it for a bit. Dr. Brower is increasing it, though, from 200 mg twice a day to 300 mg twice a day. I think Larry will be starting the increase on Sunday, is the plan.

Our appointment in August was cancelled somehow, so Dr. Brower was nice enough to go over Larry's case while he was in Lubbock and make some recommendations and changes. It was a busy day that day as faxes flew between me and Marina, the nurse. ;-) Larry's next appointment is now scheduled for October 16th. We will be there with bells on!

The side effects of the Lamictal have improved...no more itching that he complains of, at least! YAY! We really haven't noticed any other side effects, either. What a blessing, eh? He has gained about five pounds back from all the weight he lost while on the Topomax. Discourages him, but I don't think five pounds is too bad! He still looks great. ;-)

I guess that's it for our updates. I'm heading to Lubbock in September for appointments for myself for allergies and possible fybromyalgia and/or rheumatoid arthritis. We've started the testing to find out. All the stress of this summer caught up with me and I spent more time IN bed than out the past month. :( The pain is the worst part of whatever this is that I have. I'm hoping for answers at my appointment. :)

Get one of us through the doctor's appointments and then the other one has to start, eh? LOL Doesn't that just figure! I'll publish again when we find out more info!

I haven't posted in a while. Sorry. We've been dealing with the thoughts of everything that came back from the patient advisory board. I did call his neurologist about the possibilities of starting the Keppra, but he's out of town, so it will probably wait until we get there on the 21st of August. Larry is doing pretty well right now seizure-wise! I think he's been seizure-free for about a week now! I hate to move him off the Lamictal if it's working, but he can't stand the side effect either...he itches all night! Isn't that horrible? I need to find out if he's still itching like he was. For a few nights he feared for his sanity! There is no sign of the deadly rash associated with the itching, so it's a bizarre side effect.

We will be traveling to Lubbock on the 21st of August to meet with Dr. Brower, his epileptologist. We will be taking all of Larry's medical reports. It's going to be very interesting to see the response from Dr. Brower.

On the personal front, our lives are slowly calming down a bit. SHHHHH I better not say that too loudly! I'm still working on a project trying to get it out so I can get paid! I quit my part-time job with iVillage this week. I just couldn't devote the time they wanted for the job. It's really for the best, I think. This testing experience has been very interesting in the fact that I've learned who our true friends are. I've learned that even though some people say they are supportive, they aren't. They disappear when the tough gets going. It's sad to me, but I suppose it's a fact of life. I've pulled back from some friendships due to this, and created new ones with new friends. I honestly don't know what we would have done without our church family at Sunset Church of Christ. They've called, prayed, sent cards, given us all hugs time and time again. They've just been incredibly supportive and loving to us. Our church family at Fox and Lake Church of Christ has been the same and it's been so wonderful to have that support and love. I've leaned over and over on the motto from the ladies' retreat last October..."Purer in Heart". As one speaker told us, in order to become purer in heart, you have to go through some flames. I'm praying the Lord opens my heart and makes me purer in heart after going through these trials.

Enough philosophy today. :) I'll update you again when Larry goes to Lubbock. Till then... TA-TA!

Final report from the Patient Advisory board came in this morning, and we are disappointed, but willing to go with the game plan. Larry's epilepsy seems to be very complex. He has a lesion in the right side of his temporal lobe, but that is not where the seizures are coming from. The tests do concur they are happening in his left temporal-occipital-parietal area. So...since you can't very well do exploratory surgery on the brain (thanks, Mom for that thought!), they are going to hold off and want to try one more medication. I have a call into his neurologist to start him on Keppra. The Lamictal is working better but not sufficiently, and since they want to try the Keppra, why not just go ahead? We'll see what the neurologist says about it. We are disappointed just because we were prepared mentally for this next step. However, we are very happy they aren't knife happy.

We got back his neuropsychological test results, too. He is above average in IQ and the only deficit they really saw was in verbal learning. The score there wasn't as high as it should have been based on his IQ results. That points to the left hemisphere of the brain, also. Very interesting, eh? The rest of the 3 page report was very interesting, also, but I won't post it as Larry would kill me! ;-)

So...we are back to waiting and trying new things. We have an appointment in Lubbock for August 21st to see his neurologist there. I assume we'll come up with a strong game plan then. I'm waiting for the nurse to call me back now, too, so we can talk about the Keppra. Since he's not on full strength of the Lamictal, I'm not sure if they'll change him over right away or not.

I'll update you more later when I hear back from them.