Kisses

Surprise, surprise, Alex enjoys chocolate kisses. He has never eaten them before. Something new again for Christmas.

Black Friday

Black Friday, I am off for some great deals. Alex had seizures again, but he got up by 8 AM. We watched videos while Mom got to go out. Now it is time for lunch and we ae at the airport waiting on planes. None so far.

Alex seems grumpy again. All night and again this AM he is squawking at Sophie. We think it may be the medication, but who knows. He has no appetite, loud noises are bothering him again. Loud, to the extent if you carrying on a conversation while he is sleeping or in bed, he will squawk ‘non!’.

Thanksgiving

What a great Thanksgiving we had. Alex did start off the day with 2 early morning seizures but was up, showered and dressed by noon. He watched airplane and train video for an hour or so and then his sisters arrived.

We were joined by both Megan and Malinda along with their significant others, Efrin and Chris. Malinda and Chris had actually come down Tuesday evening. Wednesday they took Alex to ride the Zoo train and then went to Sonic near Walker Ranch. After lunch they strolled through the park as it is in the airport flight path. It affords a great viewing point for airplanes landing. And being the day before Thanksgiving Day, the number of planes was very high.

We had our meal about 2 PM as Malinda and Chris were going to the Texas vs Texas A&M game, in Austin, 7 PM. Marycke, as usual, made a fantastic meal. Our blessings were so bountiful we totally forgot the Tomato and Feta salad. But we had more then enough with the green beans, mashed potatoes, sweet potatoes, rolls, stuffing, turkey and gravy.

After dinner we retired to the living room and got to watch Dallas beat Seattle. Some fine apple pie with ice cream, or perhaps a slice of pecan pie with whipped cream, and we got to watch Texas beat A&M. No need for dinner but Alex and I did get to go look for trains. And we found one. Woo woo!

Seizures & Trains

Couple seizures last night. Marycke was sleeping with him as when it was time for bed he just did nt seem right. So 12:10 and again 12:19 AM and Marycke gave him Diastat. When I got back from church Alex was still in bed, snoring heavily and did not respond to me asking him if he wanted to see trains or planes.

An hour or so later Marycke got him up, fed him a waffle and then showered him off. I loaded up the car, got his meds together and we are over by the airport waiting for a train. So far several planes, one malfunction of the train crossing guard and no trains yet.

Trains & Football

What a great South Texas clear blue sky of a morning. Alex is up early and we are off to the SA Zoo to ride the train. Alex had a grand time and asked to go again We did and then left to go see the BIG trains.

Over near the East yard we picked up several trains and followed them all around the city. Of course we needed to make another stop at Mac Donald’s but he is looking well and may come with me on a service call.

But Mom’s calls in and agrees to pick Alex up while I install a wireless network. The install went better then expected and with 4 hours left in the day we agree to go try and see the Blue Angels. Alex and I travel to the Southside of SA and enjoyed a wonderful air show.

Time for Texas vs Texas Tech football. Alex piles in next to me on the lounger and smiled every time he heard a whistle blow. It took a couple weeks but he finally did decide he want to wear his whistles again. He did not want to eat Pizza but did eat a BIG plate of Cheddar Chez Its, Mixed Nuts and cubes of chunk cheese.

Near 10 PM now and Alex seems a little woozy. So he will spend the night with Marycke just in case he has seizures. I stayed up late and watched a great game, won by Tech with 1 second in the game!

Halloween Fun

Happy Halloween! Sophie’s is greeting everyone coming to the door, but unlike years past, Alex does not want to hand out candy this year. He discovered a video tape from 10-12 years ago and has been watching it non stop for 4 hours. It is call Kid’s Songs: Day at Camp. He laughs at the fish story and’ found a meatball’ song.

Drug change

He is back! Alex is almost ready to go back to school. Maybe Monday. We stopped Phenobarbital Tuesday night, cold turkey. And at the same time put him back on the drugs he was on before going to the hospital.

Within 24 hours he was alert, out of bed and ‘talking’ to Grandpa non stop.

A Little Progress

Still not eating much in the way of solid food. Tonight he did surprise us when he grabbed a box of Cheez-Its and then later enjoyed Dutch Mints.




Too strange. He never has shown an interest in either.

Doctor Visit

Well we are off to see the Doctor. Alex has again gotten a fever. Now at 102. We have given him Tylenol and Bentryl but they have not help.


Alex has gotten a rash. And along with the fever our Doctor wnat to see him. Marycke thinks it may have been the additives she has been putting in the smoothies.

Sleepy Sunday

Alex had a pretty good night and day. His fever is back down but he slept most of the day. Even now, almost time for bed and he has been sleeping all day.

Marycke is hoping it is not the Pehnobarb but something is no sitting well with Alex.

Seizure Saturday

Well from 12:42 Am, 10:27 Am, 4:15 PM and 6:20 PM is seems seizure Saturday is an appropriate name for this post. Who knows why all the seizures. we did have a front move into town and also people are complaining about allergies. we learned early on that Alex is allergic to many things. Maybe that is causing the fever.

Whatever it is it is making for a stressful time. For the last 3 weeks Alex has been sleeping in our King size bed, with Marycke. Then unfortunately, more often then not, when Alex seizes, we pees in the bed.

But we did get a chance step out for an hour or so and attend the Epilepsy 'Day in the Park'. The park is in the flight path near the end of the runway. Alex enjoyed the planes but only for about 15 minutes.

He asked for Mac Donald's and at first said he wanted fries AND nuggets. But by the time we arrived to the drive through he only wanted a coke and fries.


Alex crossed the long bridge to the Park.















Then he 'signs' airplane as one passes over.

Fortune Cookies

Well Alex continues to surprise us. Tonight I got Chinese carry out. At the conclusion of the meal I pull out the fortune cookies. Lo and behold Alex reaches over, cracks one open and eats it. 21 years he has never eaten a fortune cookie.

Then he grabs another and another. Out of fortune cookies Marycke finds a serving of Apple Jacks and another of Lucky Charms. Wow neat to see him eat!

Bummer, time for bed and he has a seizure. Maybe it was not good for him to eat. From Biblical times to the present, epilepsy has been a disease shrouded in mysticism and fear. Seizures, which are now known to be a neurophysiological phenomenon, are the defining characteristic of epilepsy.

It has long been known that starvation is an effective, if impractical means of controlling seizures. There is even a reference in the Bible to starvation controlling "fits." Mark 6:29 "cured by fasting and prayer." The first scientific study of fasting as a treatment for epilepsy was conducted in France in 1910. The researchers concluded that seizures were improved by absolute starvation.

During starvation, the body first burns all of its glycogen. It then begins to burn body fat and protein for the specific purpose of supplying the brain with glucose. As fasting continues, the body shifts into a state known as ketosis. The brain begins to use ketones from the metabolism of fats as energy rather than glucose. This shift in metabolism also correlates with a reduction in seizure activity.

Doctor Visit

Well we are off to see the Doctor. Alex has again gotten a fever. Now at 102. We have given Tylenol and Benedryl but they have not helped.



Alex has gotten a rash. And along with the fever our Doctor want to see him. Marycke thinks it may have been the additives she has been putting in the smoothies.



Yeah! He is over 100 lbs again. Still not eating much more then smoothies and Ensure but at least he is not loosing more weight.



Meanwhile, Sophie continues to be very interested in Alex. Always trying to play with him. And when he has seizures she seems to know something is wrong. She comes over and licks his face or lies on top of him.


She is getting so big. She also is loosing her baby teeth and chewing on EVERYTHING. I always seem to have only one shoe. So Marycke went and got her a BIG bone. She seems to enjoy it!

Little Progress

Still not eating much in the way of solid food. Tonight he did surprise us when he grabbed a box of Cheez-Its and then later enjoyed Dutch Mints.

Too strange. He never has shown an interest in either.

Play time for Sophie

Sophie has discovered the sprinklers. I never knew a dog could have such a fun time with a couple of sprinklers.

Better

Well, a litle sleep (for me and Marycke), Tylenol for Alex, and a 'bath' to cool him down and his temperature is back down to 99.3. If we can keep it under 100 the rest of the day I suppose no trip to the ER - today! Thanks for all the notes and prayers.

Meanwhile, ran across this video from last month. Sophie was trying really hard to wake up alex. But Alex sleeeps... he SLEEPS!

Neal

Still not eating

Unfortunately Alex has developed a fever of 102.4 So we expect to have to go back to university hospital this AM if we cannot get it under control

We are coming up on day 21 of Alex not eating (His only nutrition is Ensure that we giving him 3 times a day squirting it into his mouth with a syringe and hoping he does not spit it back out.) Not eating makes him very susceptible to infection. So Doctor Martin’s office wants to monitor him closely. We may also have to have a feeding tube put in.

On Thursday they determine his medication levels to be 200% of the therapeutic level which may account for his lack of appetite and sleeping 15-20 hours a day. The doctors are now backing off on the drug levels.

On the upside, no seizures for the past 8 days!

Alex Home

Yeah. Alex was allowed to come home late yesterday afternoon. Marycke called and said the docs saw no reason to keep him in the hospital and it would be okay to come home. Alex agreed and was ready to go right then.

As ususal it took a few hours but we finally did make it home. Sophie was happy to see him but Alex was not ready for sophie.


We thought he may eat more at home but not so far. He would not even drink anything. Maybe later today.

We are just happy to be home.

Alex Day 11

Early on yesterday afternoon Alex was up and doing well. we expected to go home today.











Marycke said he was waiting for 'Neal to call.' He kept the phone with him all night.

Well we have reached day 11. And does not look like we will be going home.
Last night Alex did pretty well. Nothing to drink still but ate some chunk cheese.

Then this AM he had seizures at 6:11 and 8:15. So I feel the doctors will want to keep him another day or two.





Alex recovers after seizure #2 this AM.



















The tech agrees to remove his 'hat'. Alex is happy!

For the past few days he has been sitting in a chair. No longer does he want to be in 'that bed.'

Thanks your all your care, prayers and notes.

PS. Marycke’s phone was damaged during one of the seizures so reach her at 210.358.1252

Day 8

Well Alex finally got out of bed and walked around for a while last night. And because of that, they removed the catheter. He was very happy. And because his O2 levels were good, the clip on the end of his finger was removed as well. Boy, life is getting good for Alex!

We watched the Cowboys play football and then finally we got to sleep just before midnight. However Alex stayed up to nearly 3 AM. Every 20 minutes or so he tried to pull something off or out of his body. He just is not a happy camper right now.

Come Monday morning, Alex is up earlier than I expected (7:10 AM) so we sat around waiting on Mom to bring breakfast. Of course the breakfast was for Neal as Alex still has not eaten anything nor has he gone to the bathroom on his own. Until those two things are accomplished we will not be able to leave.

I am going home for a shower and to check on PSU. But on the way back, Marycke called to say Alex has had 3 seizures. Maybe that is why he was not willing to eat. Needless to say with all those fluids being pump in and him not going to the potty, everything came out during this latest episode.

They have given him 2 does of Ativan and as of 2:30 PM, Marycke reports he has not had anymore. He is sleeping and may do so for sometime. So I imagine for now Marycke does not want any visitors.

Thanks again for all the notes and comments of the blog. Looks like we will be there even longer than we expected.

Neal

Neal and Alex discuss what can can cannot be removed.


Alex 'converses' with his faorite nurse, Rebecca.