CafeAlex

To the Beach

2009-09-17T09:45:00.004-05:00

Our condo was right on the beach, but up on the third floor. So every trip to the beach begun with counting the stairs down and then the trek across the sand. Alex had a great time!

SPI

2009-09-16T09:12:00.002-05:00

We had a great few days down in South Padre Island. Alex had no seizures, the sun was out, the crowds were sparse and the fishes were everywhere. Maybe only for Alex he would have liked bigger waves. But for Marycke and I the extremely clean water and gentle waves made it much easier to watch him.

SPI Day 1

2009-09-15T18:56:00.003-05:00

Wonderful weather here in South Padre. Fivehours in the car and Alex was reqady to hit the beach - first thing.

Training on a Sunday Afternoon

2009-08-08T19:27:00.001-05:00

Most Sundays, after church, Alex and I go over by the Whetmore train tracks and watch for the afternoon trains. He seems to enjoy it, even more so, with his BIG coke from Mac Donalds.

Lately he has been pushing down on the soles of his feet when trains come by. Not sure what that is all about. He even does it when we are just driving down the highway. Marycke is going to take him to a new foot doctor. The corrective shoes he wears now do not seem to be making things better.

Smelly Dog

2009-07-30T06:26:00.002-05:00

Last night as Alex was brushing his teeth, his dog Sophie though it would be fun to chase a cat in the backyard. Unfortunately that cat was a SKUNK!

We had to wash down Sophie using this. You will want to use this formula for removing the skunk smell from your dog:This formula gets rid of the odor (it doesn't just mask it) and it changes the chemical properties of the skunk spray to break it down.

You will need the following from any local grocery or drug store:

* 1 QT. OF 3% HYDROGEN PEROXIDE

* 1/4 CUP OF BAKING SODA

* 1 TEASPOON OF A LIQUID SOAP ( I recommend DAWN, it breaks down oil and grease well)

MIX AND IMMEDIATELY APPLY TO YOUR DOG. BE VERY CAREFUL NOT TO GET THE MIXTURE IN YOUR DOGS NOSE, EYES ,EARS OR MOUTH.

LATHER UP REALLY GOOD (my husband used a cheap shampoo first just to get the suds going)

RINSE AND DRY OFF YOUR DOG.

* You must mix this is an open container and when you are done with the formula get rid of the remaining formula (if there is any left) DO NOT STORE what's left in a container, the chemical reaction from being closed up can cause an explosion! (interesting side note here: this is probably why this formula has never been patented- if you can't bottle it you certainly can't sell it!

Just hanging out

2009-07-24T11:03:00.000-05:00

After horseback therpay we went along FM78 to watch the trains. Sometimes we will stay out to 10PM.

Saturday Fun

2009-07-24T10:38:00.001-05:00

Good time watching trains and planes this Saturday. Still real hot and dry but we have gone 6 days without a seizure. So no problems here.

Training

2009-07-16T20:54:00.004-05:00

We actually had to go almost to Sequin to find a train. But we found one. Of course we did see a cow or two along the way.

Training

2009-07-16T20:54:00.002-05:00

We actually had to go almost to Sequin to find a train. But we found one. Of course we did see a cow or two along the way.

But we finally did get to chase a train and Alex seemed to have a great time.

Road Block

2009-07-16T18:39:00.000-05:00

Home on VIA Trans by 4:30 and we are off to Bill Miller. Going to get a little BBQ and watch the trains pass by. Oh well the food was good but no train. We are on our way along FM78 towards Marion. We are stopped by flashing lights and a couple of big propellers for the Wind Turbines.

Morning

2009-07-16T09:24:00.000-05:00

Well day two without Mon and our second morning with seizures. If I were peranoid I would let it bother me. But alex did get up okay with time enough for a shower and then a stop at Mac Donalds.

Pancakes and susage, a little juice on the side. But of curse he still likes paying for his meal, getting the chage and then getting a drink from the fountain.

Below you see Alex in action!

Port A

2009-06-30T07:24:00.001-05:00

Alex and Sophie had a good time at the beach. Yeah Mom and I liked it as well.

Bedtime

2009-06-29T20:11:00.000-05:00

Well it is nearing 7 PM and lately Alex has been having seizures close to 8 PM (like yesterday). So we leave the beach with a promise to return tomorrow. Up at the house, Alex once again wants to lead Sophie around on her leash. He enjoys that while we unpack the car and try and get all the sand off us.

After showers Mom fixes Alex sausages, Mac & Cheese and crackers for dinner. He eats it all without us having to force him. I took off and got BBQ for Mom and I. Then we spent the rest of the evening watching Hotel for Dogs. It was fun to see Alex actually watching a video. And even Sophie seemed to enjoy the movie. But about 20 minute into the show Sophie fell asleep.

Hopefully Alex has a good night. This time we switched beds and Alex slept with Mom. The night before I was too hot and Alex would not let me turn on the over head fan. If I turn down the air, Marycke says she hears the fan running and can not sleep. So this time Alex and Mom are together and Neal gets a bed and a fan to himself.

Sunshine

2009-06-29T19:10:00.002-05:00

Ah Saturday morning, up at 5 AM and have the house to my self. Make some coffee and fore up the laptop. Still have lots of work to catch up on for PSU. Alex seemed to have a good night after he finally went to bed. 10 PM and the lights were out but come11:24 I find him on the floor talking to me. I ask if he needs to go potty and I get an affirmative nod of the head. First we had to find it as Mom had closed the door to her room (locking Sophie inside) but once found he sat down. But failed to go. So back into bed and somewhere around 1:00 AM I believe he drifted off to sleep.

Around 7:30 Alex is up and saying beach. First we tell him comes breakfast, then medicine and then we go to the beach. He sat out on the deck listening to the ocean while Mom and I made breakfast. He ate well, eggs, bacon, raisin toast and some OJ. As usually Mom or I had to hand him each piece or forkful before he would eat. But he did finish.

Everyone got greased up. Sophie finally went pee so we were good to go. Pull the car up on the beach, Alex has the door open, across the sand into the water he goods. Quickly he and I are at the third sand bar laughing at how the waves are knocking us over. Usually we can last 15 to 20 minutes then it is break time back onshore. He digs a little, filling up the green bucket a time or two, and then he is ready for more waves. By half past noon he nods yes when I ask about going back to the house for lunch.

Back from the beach on a Saturday afternoon. Alex had great fun in the waves and took great interest in leading Sophie around on her lease. Mom and I have had lunch, Sophie too, but Alex look wiped out. I asked if he would like to nap and I got a faint nod of the head for yes. So he has been asleep now for about an hour and a half. We planned on a return to the beach around four but will wait on Alex.

Yeah for Alex, a solid two hours of sleep and no seizures. He stumbles from the bedroom to the front porch and points towards the beach. Guess we are going to get all greased up again and head back to the beach. This time Sophie is much more attuned to going in the water. She is leaping of the waves and wanting to play with all the children. Alex and I spend lots of time at the third breaker getting pounded by the waves. We count them off as then come it. Twice it was wave number nine that is so strong it knocks Alex off his feet. Hey here comes Mom and Sophie. Sophie is actually swimming in the ocean.

Beach

2009-06-26T21:06:00.001-05:00

Friday and it is time to leave for the beach. Mom has everything packed. Alex is back from Hill Country Center and is ready for the drive to the beach. As is usual he rides shotgun and Mom and I take turns with the driving. Sophie is not real sure what to do. This is her first road trip and takes nearly two hours to settle down.

The three hour ride went well. We even came across a train for Alex to chase just as we entered Corpus Christi. We venture off the highway and find a Mac Donald’s. Alex eats all his fries, six nuggets and quickly sucks down a 32 ounce Diet Coke. Hmmm… live is good. Mom and I pick up subway and we continue to our friend’s house. As we cross the Padre Island causeway Alex becomes very excited and continues to repeat, ‘beach, beach, beach’. We let him know it will take another 30 minutes.

The house we are in is about 3 blocks from the beach. So even though it is after 7 PM we quickly unpack and get Alex and Dad (Mom can wait till tomorrow) ready for the beach. 8 PM and time for meds but then we are off. Alex is all jazzed up and ready to hit the waves. So we pull up on the sand, pop open the door and out we go. The waves were great. The water is warm about 87 degrees and seaweed clear. We had great fun for about an hour. Then I encouraged Alex to return to the shore for the sun was down the moon was out and we need to get some sleep. After some protesting we headed back to the shore (we were about 80 yards out).

Just 10-12 feet from the shore Alex became unresponsive and had a grand mal seizure, right there in about 2 ½ feet of water. I was able to hold his head above the waves but not able to lift him out. Marycke was down the beach with Sophie but saw what was happening. As she past by a family of four, she remarked Alex was having a seizure but it was not anything we had not dealt with before. But now with Sophie on the leash and pulling at Marycke she could not really help me get him out. So the Dad from the nearby family took off his shoes and came in to help me lift him out to shore. As we lay he down he was on his back and nice Hispanic woman came over and told us to turn his on his side. I told her I knew that as Alex had been having seizures his whole life and it was the new thin I was going to do. Well she offered to call 911 and told us she was a nurse.

Wow, once again we are blessed by the proximity and kindness of told strangers. Two hundred miles from home, late on a Friday night, and nurse and strong arm gentlemen are ready to help. This is too serendipities not to have Providence play a hand in our good fortune. Anyway, we got back to the house safely, Alex is fully recovered and we spend an hour or so of quiet time f=before calling it a night.

Saturday Fun

2009-06-20T17:58:00.002-05:00

Alex is back into trains. No more planes. But then when he sees the planes he is excited and wants more. My Saturday tech job got canceled so we had the afternoon to travel all over SA looking and chasing trains.

Hail

2009-02-11T03:57:00.002-06:00

Wow, sever weather just popped up. Alex liked all the 'booms'. Then he was off to the closet to get 4-5 umbrellas. He had fun watching the hail.

Planes and Trains

2009-01-18T20:53:00.001-06:00

One seizure last night, about 1:30 AM. Marycke gave him Diastat. He slept till noon and then we went to look for plans and trains. While there, Megan saw us and stopped to say hello.

Looking back

2009-01-17T04:34:00.002-06:00

While cleaning up some old hard drives I came across this video of Alex at the beach. It is nice to see him with a 'little weight' on. We would spend hours together in the waves.

And now, it is 39 degrees and windy! But still better than the -30 degrees our in laws are reporting from Ann Arbor, MI

Sophie gets a treat

2009-01-13T18:11:00.001-06:00

Alex had a very good day. No seizure during the night. He woke up with a great smile on his face all day. Then at dinner time he agreed to give Sophie some treats. Here is the video.

Kisses

2008-12-22T06:22:00.000-06:00

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

Black Friday

2008-11-28T06:36:00.000-06:00

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

2008-11-27T06:33:00.001-06:00

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

2008-11-02T06:14:00.002-06:00

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

2008-11-01T06:19:00.001-05:00

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

2008-10-31T18:26:00.000-05:00

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

2008-10-25T17:30:00.000-05:00

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

2008-10-19T21:59:00.002-05:00

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

2008-10-19T21:03:00.001-05:00

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

2008-10-19T20:39:00.002-05:00

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

2008-10-18T19:42:00.002-05:00

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

2008-10-16T21:13:00.002-05:00

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

2008-10-14T16:03:00.001-05:00

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

2008-10-10T21:59:00.000-05:00

Play time for Sophie

2008-10-05T19:34:00.000-05:00

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

Better

2008-10-05T15:41:00.002-05:00

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

2008-10-05T07:34:00.001-05:00

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

2008-09-25T17:38:00.001-05:00

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

2008-09-25T10:39:00.004-05:00

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

2008-09-22T14:22:00.003-05:00

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.

Alex Update

2008-09-21T20:20:00.005-05:00

Grandpa stops in to brighten Alex's day. He brought cheese and egg taco but still could not get Alex to eat. Well we had another 24 hours of ups and downs.

Alex did well last night. Sitting up and ‘playing’ with the nurses until after midnight.
He slept through the night and then got to enjoy breakfast with Grandpa.

Unfortunately it is the ‘eating thing’ that is keeping him in the hospital. He still has not eaten since Saturday night a week ago.
They tried the feeding tube of the nose without success. Next they are taking about a tube directly into the small intestine.

His seizures remain ‘below the surface’ but he is continuing to seize. His medicines appear to be working. The doc thinks we are past worrying about seizures from medicine withdrawal.

So we are focused on getting him to eat, walk around and then we could home. I expect with will be Tuesday or Wednesday at the earliest.

Thanks for all the notes.

I am going back to relieve Marycke. I will spend

the night and then be able to come back during the day to work on technoDOCTOR and PSU.

Alex self protrait. He likes to take photos of himself.

Saturday Morning

2008-09-20T14:16:00.006-05:00

Alex was more awake over the past 24 hours. However he still has not had any food since Sunday.

The Internal Medicine doctors have decided Alex needs to be feed through a tube up his nose.

On the better side, his lungs have cleared up. The docotors feel his pneumonia is clearing up. More than once Alex has pulled off his head bandage. Here Dale has to reapply it.

Last night around 4 AM he woke up and realized he had needles in the arms, a catheter, his head rapped, something clipped to his finger and both legs wrapped with something squeezing them to increase circulation. He let out a very BIG yell. Both RNs came running and I said, 'He is awake.'

Now we have to figure out how to keep him from pulling everything off. They considered restraints, we suggested some type of homemade sleeve, but the decided on 'boxing gloves'. Soon they went. The RN was very pleased with his work until 2 seconds later Alex had one off, had tossed it across the room and was proceeding to try and remove the wrapping from his head.

Okay back to last night. From 4 AM to 5:10 I am by his bedding trying to get him not to pull any thing off. He falls asleep. Sure enough 15 minutes later the nurses are in to 'turn him'. Alex gets

He is showing some signs of bedsores and inactivity.

Okay I get him settled back down and 10 minutes later it is time for 'vitals'. Once again he gets wakened. Again becomes agitated (mostly because I think he does not understand he can go 'potty' while still in bed.) So now we have got him back asleep a little after 6 AM. 6:15 it is the respiratory nurse. 'We have to give Alex his treatment." So now they hold a mask over his nose and mouth for 7-8 minutes and pump O2 and drugs into him.

Okay not so bad. I lay down to go to sleep (they have a chair with a pull out cot.) and Alex screams out again. Okay I am up. He is trying to pull stuff off and I think needs to go potty.

7:15 his Doctor (Joe David Bowers, who also happens also to go to my church.) tells me they need to put a feeding tube down Alex's nose. We give him more drugs, take a few more vitals, and now Marycke arrives... just in time to see them shoving a tube up his nose. 3 nurse and Marycke held his hands, legs and head, as the tube is inserted. Looking good, looking goods, BAM! Alex breaks the grasp of someone and yanks the tube back out.

Okay more staff is called and we go for attempt number two. Let's just say it did not work. Marycke was thankful I was not shooting video. The tube started down, there some screaming, some coughing and then lots a blood was spit across the bed and onto the doctor. Guess that says enough that they decided no to do the tube for now.

Marycke is with him now so I can come home, shower, check email and write some new posts. Then I am going back over. Grandpa was on his way up as I left. We have had several visitors and appreciate each and every one. Still, remember to call Marycke first. we are not sure what we will be doing to the boy.

Prognosis, we will be there 3-4 more days. The Dialantin and Phenobarbital are in good therapeutic ranges. However he is still have seizures that never manifest to the 'outside'. The EEG is seeing the activity. Marycke is noticing a few changes in his eye pattern. But a good Mom seems always to be able to do that.

Thanks again. Not sure when I can post again so here are some pictures and even some videos.

Neal

This video shows Alex waking up and me telling him he would have to ‘wait five’ before removing anything from his body.

This one shows a night time seizure. Pretty mild compared to the others.

Alex Hospital

2008-09-16T13:42:00.005-05:00

Alex is currently in University Hospital (Room 1252) recovering from uncontrolled seizures. Here the EMTs transfer him in from Methodist ER. We have been there since Monday and expect to stay through Friday.

Backing up a little let me say, Alex typically becomes refractory to his medication about every 18 months. This was the case near the end of May.

So we started him on a new medicine called Felbatol. He seemed to be doing okay but the seizures began to increase from one every 7-10 days to about 2 per week. But of more concern was that Felbatol reduced his appetite and he had lost 14 pounds (He is now down to 114 lbs.) by the end of August.

So we took him off of Felbatol and started him on Lyrica. He also did not do well on that. Seizures increased to about 4-5 per week and rather than only being at night, he started having them during the day.

So while we were in the course of getting this med adjusted it became harder and harder to stop his seizures. We have a drug called Diastat we could give him at home and it would stop them. But it is a strong drug and ‘knocks him out’ for the next 24-30 hours. Well over the past two weeks Alex appears to have also built up a tolerance to Diastat.

So last week, after multiple seizures Saturday and Sunday, it became apparent Diastat was not going to work. So Monday afternoon we took him to the ER. Normally they administer Ativan and seizures stop. Not this time. Alex continued to have 70 seizures over the next 14 hours. The ER never was able to get them to stop. So we checked him into University Hospital (Room 1252) and they gave him super doses of anti seizure (AED) medications. We had gone near the point of having to possibility putting alex into a ‘chemically induced coma’. But fortunately, just after midnight Monday, Alex stopped seizing.

Now, we have been trying to wake him up for the past 2 days. No luck so far. The doctors have taken him off 3 of the five AED he was on but will not know his reaction to the change until we get him to wake up.

His veins got so beat up we had to have them put in a 'pic line' (tapping a vein below the surface of the skin). They have to draw a lot of blood as well as administer the AEDs throught this 'pot'.

Alex had to get 'mittens' put on since he kept trying to pull out his 'pic line' and remove alos kept removing his 'hat'.

And now they have decided his larnnyx is drying out. Them have had to put on a mask to add moister to this O2

So we are waiting and praying that he will adjust okay and we can come home soon. But it looks like we will be here through the weekend.

Thank you for your support and prayers.

Neal and Marycke

Seizure weekend

2008-09-14T15:47:00.002-05:00

Not a good weekend for Alex. Saturday he had seizures. Then by the afternoon he felt well enough to eat something.

but by the afternon he had rturned to his room, gathered al lhis favorite items, and has now fallen alseep on the floor.

Then Sunday AM, seizures again. Marycke has given him Diastat but they still are not controlled. If we can not ge tthem to stop by 2 PM we will have to go the ER.

Oh good. All done for now. Let's see what tomorrow brings.

Neal

Welcome Sophie

2008-09-11T14:02:00.003-05:00

Marycke returned from Michigan with a new puppy -Sophie! She has joined the Shaver household.

We are hoping she will become a good friend and guardian to Alex. So far they are still getting aquainted.

Sometimes she takes a break from chasing her tail, eating and sleeping to help Marycke with office work. So please forgive any invocies with paw prints.

And of course nap time is important for puppies.

From the back of the couch to sitting on the dishwasher door, Sophie has figred a way to be in the middle of the action.

Up early

2008-08-15T05:42:00.000-05:00

Too early. 3:05 AM and Alex is up. Took all those naps yesterday. So I grab my pillow and push him over to his side of the bed and tell him, ‘Time to sleep.’ Then for then next 45 minutes this little hand keeps rubbing my back and signing ‘airplanes’. 4 AM, I give up. Alex and I are out to the livingroom.

We can not find his dot box, his favorite puzzle. Mom picked it up yesterday so the new puppy would not chew on the pieces. Anyway, we go back and forth from the LR to his bedroom. The whistles are jangling around his neck. I am afraid the puppy will hear us and want to get up as well.

On our own

2008-08-12T05:43:00.000-05:00

Very good day. Alex slept through the night and got up on his own around 7:20. He immediately signed airplanes but I told him first was breakfast, then shower, then medicine and finally airplanes. He held up 5 fingers and said, “Five.”

So I could not get him to eat a normal breakfast but he did have Mac and Cheese again. Then we went off to the showers. He still needs help with every aspect. I guess he sort of can wash his own hair. But otherwise we have to wash him down. He also does not dry himself.

Before going to The ARC, we stop over by the runway and watch a few planes land. Even after all these years he use the word, ‘orange’ for any airplane. I guess it was because of all the orange Southwest planes we use to see.

Early Night for Alex

2008-08-11T19:54:00.004-05:00

Well it is 7:40 PM and Alex has already had meds is asleep.

He had a seizure this AM, 5:33, but then got up on his own around 6 AM. He has stayed up the entire day. We had to have MAC and cheese for breakfast but he had no problem going to The ARC.

I picked him up early, stopped by the house to say hi to Grandpa, and then out to Fiesta Texas again. He was very excited about riding the train, and the horses on the carousel, and then sat and watched the airplanes. After about 20 minutes he finally said he wanted to go on the plane. But alas he was too tall.

But, while waiting, we were near the White Water log rise. He expressed an interest in going. So off we went. And again. And again. Wow he was wet but said he still wanted more. I expected to bring him home and let him get to sleep. Here we are coming down the big drop.

Then we got home and there was a water rise right in our own street! Water main brake.

Sunday Seizures

2008-08-10T19:51:00.000-05:00

Starting out with seizures this AM. 7:50 Am and again 8:22 AM. Shortly after that I was able to get him to take his medicine. And he slept till 12:20 with no more episodes.
Now we have decided to go look for trains, stop by Mac Donald and maybe bring along some Mac & Cheese.

We indeed got Mickey D’s and then stayed along the tracks by Whetmore, at the end of the airport run way, but had to wait nearly an hour for a train. During that time he finished on 32oz Diet Coke and we got a refill at the Broadway Mac.

Back to the tracks. Here is the train? There it is! But wait, it is going backwards. There is no engine. Alex thinks that is just too funny. Lots of laughing. Then they crash couple with a loud – bang!

It is hot, 100 degrees. So we come back home and have a quiet afternoon doing Legos. We go to LIFE group, for bible study and dinner, at the Laxson's where Alex played very nicely with a couple younger kids. Then we went swimming in neighbor Charlotte’s pool. Alex loves to dive under water for the rings.

Mickey D's

2008-08-10T05:45:00.000-05:00

Saturday with Dad

2008-08-09T19:45:00.000-05:00

We it has been a long time but Alex and I finally spent the whole day together. He got up nice and early, 6:30 AM, and decided we should go look for airplanes. So off we went.

Of course, had to stop by Mac Donalds for a biggie breakfast. We could just eat pankcakes while watching the planes.

Then we decided to finally go get our passes for Fiesta Texas. Alex enjoys riding the train and the carousel. We stopped often and sat on a bench to watch the train come by. He also showed great interest in the roller coasters and the airplane ride. After 3 hours he was ready to come home for a rest.

But wait, he is not done yet. After a couple hours of quiet time he agrees to go swimming. He collects his diving rings, gets on his swimsuit and off we go. He loves to jump off the board, do some dead man floating, and of course dive for those rings.

New Puppy

2008-08-09T05:38:00.000-05:00

Marycke and Megan have gotten us a new puppy - Sophie. They are up in Michigan now but are due back in San Antonio Tuesday. I keep telling Alex sheis coming and he smiles. But still says - "No."

Long Night

2008-08-08T18:31:00.004-05:00

Hmm, 1:30 AM and Alex is out of bed. All that sleeping during the day yesterday, as a result of seizures and Diastat, and now he is wide awake. But Marycke is leaving with Megan for Michigan today and I really need some sleep. So I put Alex in bed with Marycke. Wake her up and let he know.

3:10 AM, I am in the office working on a website, and in walks Alex. Okay, back to Marycke. She apologizes for not hearing him get up. I work till 4 AM and go to bed myself. 7:00 AM, Neal, Megan and Marycke are up, time to go to the airport, and of course, Alex is snoring away.

Fortunately Dad is still in town and comes over to stay with Alex till I take the girls to the airport. Everything goes well. Marycke is seeing her parents in Ann Arbor, and rumor has it a new gold retriever puppy will be coming back. Her name is Sophia.

I am home by 8 AM and Dad says.. Alex is up. Huh? I though for sure he would be sleeping. Nope, ready for breakfast and then off to the ARC. Well breakfast was prepared but very little was eaten. Oh well guess he will have a good lunch. The video below shows a typical morning trying to get him to eat after having had seizures the day before.

At The ARC I cannot find his class. With some assistance I find it. Several folks come greet us but the aid is new... he first day. Oh boy. How will she know about Alex. He has not even gone potty yet. Lots of action in the classroom. But after finding some Legos for him to work on Alex seems okay with me leaving. I am not too sure. Seems like I never meet people at the ARC that make me feel secure that Alex will be able to communicate his wants and needs. Anyway, I am of to Alamo PC to volunteer for 4 hours. Fixing computers. Afterwards I stop by Wendy's and get a drink for Alex and some nuggets. I decide to pick him up early.

They are in the sensory room at the ARC. This is an area of the gym that has been divided off and music is booming, the folks all have things to squeeze or hold or touch that affect the senses. Alex is squeezing some theraputty he seems happy to see me. We agree to go back to the office to see Grandpa.

By 3 PM he had crawled into his bed and is fast asleep. Oh well, enough of the blogging. Need to wake him up and get him some food. Otherwise he will be up all night!

Diastat Day

2008-08-08T17:54:00.002-05:00

Well we should have known ... It seems when Alex has a great appeptite, wants to clean his plate or keeps 'saying' yes to whatever we offer, we know later he will have seizures. Tonight is one of those nights. He has finished two helpings of Mac and Cheese, 2 Beef Sausage and wants more.

Then he wants me to take him to watch planes. Of course on the way we pass Mac Donald's and he has to have a coke. He never drinks it but I know he enjoys handing them the money so I pull through.

That night he had multiple seizures and Amarycke gives him Diastat. Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.

Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.

Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.

Day at a time

2008-08-08T05:45:00.001-05:00

Much better

2008-08-04T16:38:00.004-05:00

Today Alex is almost back to normal.

He slept all through the night and seemed to have a wonderful day at The ARC.

At The ARC he is part of The Young Adult Community Integration (TYACI) program provides opportunities for young adults ages 16-26 to develop life skills, receive vocational training, and participate in community activities. Classroom activities are designed to help participants maintain and build upon the vocational, social, and life skills they learned in school.

Long day

2008-08-03T13:44:00.000-05:00

Today was an early one. 3:15 AM and I heard whistles through the intercom. I know Alex is getting restless or about to have a seizure. I lay awake for the next 40 minutes, waiting. Then I hear shuffling footsteps. Alex is up, 4:10 AM. Hmm, seems very early.

But I have some work to do so Alex and I are out to the living room. He quickly becomes engrossed in his Lego puzzle. But after 30 minutes he is by my side pointing to the kitchen.

I try and get him to eat cereal but he refuses and points to the macaroni and cheese. Really? Mac and cheese this early? Yep, He eats a plate of Mac. And a little water.

Now 7:30 Am and Alex is loosing steam. He pulls everything off the bed and makes a ‘nest‘ for himself on the floor. But meds are at 8 AM. So a quick consult with Mom and we keep him up long enough to have meds.

Hmmm, this new med, Lyrica make be responsible for his change in sleep pattern and appetite. Well it has only been one week but the seizures have been more frequent. And that one Friday night at the table really was unusual.

Doctors have studied large numbers of people with epilepsy to find out how well Lyrica controls seizures. When it was used as an add-on with another seizure medicine, a number of adults had large reductions in their seizures, and side effects were not much trouble.

Lyrica is not the best add-on seizure medicine for everyone. Sometimes, a series of combinations must be tried before finding what is best for the individual. Lyrica does have an advantage over some other medicines used for add-on therapy, because the doctor won't have to change how much of the first medicine is prescribed. The lack of interactions also makes Lyrica a good choice for people who need to take medicines for other disorders.

After lunch we tried to go watch the planes and trains but his drooling was just too much. He only lasted 45 minutes. When we got home he took a nap. But 4 PM he is back signing for me to take him to the planes. Off we go.

Not too many planes but one train. He signs ‘M’ for Mac Donald’s but I ask if he would rather get sausage from Blue Cactus Café. He shakes his head yes but then refuses to eat any. Oh well, into the frig for lunch tomorrow.

Now he is helping Mom vacuum and is bringing things to me at the desk. Hope he stays up for a while so he will sleep in.

More seizures

2008-08-03T06:05:00.000-05:00

Too early, 6 Am, but he is having seizures. Couple more since yesterday at dinner. He had gotten up around 1:10 AM. Marycke sensed it. Sure enough, he was out in the living room doing puzzles. Marycke took and hid all the keys. I got up with him for 2-4. Then into our bed. I slept in his.

Next morning I am off to fix a computer. Marycke reports he has had two more seizures and may not make it to Rosa’s for his haircut. Sur enough that is what happened.

When I got home around 1 PM, I was tired and took a nap. Two hours later I wake up o find his older sister home. Megan is coming to stay with us a for a month or so. Alex seems happy to see her.

Seizure Day

2008-08-02T16:51:00.001-05:00

Too early, 6 Am, but he is having seizures. Couple more since yesterday at dinner. He had gotten up around 1:10 AM. Marycke sensed it. Sure enough, he was out in the living room doing puzzles. Marycke took and hid all the keys. I got up with him for 2-4. Then into our bed. I slept in his.

Next morning I am off to fix a computer. Marycke reports he has had two more seizures and may not make it to Rosa’s for his haircut. Sure enough that is what happened. Before I left I checked in his room, and there he was, alseep in mid day. Note, he still brings the hedge trimmer to bed. He also has found my computer vacuum and takes that to bed too.

When I got home around 1 PM, I was tired and took a nap. Two hours later I wake up o find his older sister home. Megan is coming to stay with us a for a month or so. Alex seems happy to see her.

Horseback

2008-07-31T06:06:00.002-05:00

Marycke and Alex are back from horse back. To Alex had a great time. After three years they got to do some trotting. Alex was laughing so hard it was hard to keep him upright. He keeps sign ‘more’ and making ‘horse’ sounds. But with the heat and time for the instructors to ‘recharge’. No horseback for August.

Port A pictures

2008-06-29T18:15:00.000-05:00

Port A

2008-06-28T17:34:00.004-05:00

Off we go to the Coast! Okay they have sand dunes but not like these they showed in the brochure. A friend has lent us their house for the weekend. It is Marycke's birthday on the 29th. We get down in the evening but have time to take Alex down to see the beach. He is very excited. But we explain he has to go to sleep first.

Next morning Alex got up very early, 6:30 and started right away with - beach, beach, beach. Marycke got breakfast down him, meds, lots of SPF50 and then we were 'off to the beach.' I took him down and Marycke joinded us around 9:30.

We stayed till Noon. Drove around Port A. They have a Ferry connecting to Rockport. It is really fun, free and sometimes we see dolphins by the sea wall.

After the ferry we had lunch and a everyone took a nap. Alex fell right asleep. After he got up we went back to the beach for more swimming. He has a great time standing in the waves, point to the 3 rd sandbar and saying, 'beach!' . What he really wants is bigger waves.

We had seen lots of photos from Port A's annual Beach Fest but this weekend no one was building them like these.

Next morning Alex was ready for the beach!!

Frio Wedding

2008-06-14T05:38:00.001-05:00

School is over. MAC has asked if Alex wants to participate. We tell them no. We do not think Alex recognizes graduation. And crossing the stage wit all those folks.. Oh well we know.

Karessa Laxson, a neighbor’s daughter is getting married in Concan, along the Frio river. We have book 3 nights and the girls are coming down from Austin to join us. I got a Wii for father’s day and plan to bring it down. Maybe the boys of the girls can teach us how to play.

Alex had a good time. He did not really think the river was the same as the beach. We only got him down to the river 2 times. He did okay but kept saying, ‘beach’.

We did not last the 3 nights as night 2 Alex had seizures. We kind of expected it. So we packed up and headed back into San Antonio.

Botox

2008-03-04T21:38:00.003-06:00

Alex had his botox shots today. His physical therapist recommended 8 shots on the inner thighs to relax the tight muscles. This should help him stand more erect.

Botox Injections to Reduce Spasticity - from Boston Children's Hospital

A child with spastic muscles (tightness) finds it hard to move. As the child gets older, contracture (permanent tightness) of the joints, and deformities of the spine and limbs may develop. Usually spasticity is treated with physiotherapy, bracing, and surgery. Botox injections are another way to deal with muscle spasticity.

How does Botox Work? The "tone" of a muscle -- how floppy or tight it is -- depends on the nerve impulses (messages) which reach the muscle from the brain. These messages are carried by chemicals in the nerves to that muscle. Botox is a substance which blocks the chemical message before it can enter the muscle. In this way it prevents the muscle tightening which results in spasticity. Botox does not cure spasticity. The "block" is most effective 1-2 weeks after the injections. Three to six months later the spasticity usually returns. We do not usually recommend more than 2 Botox injections into the same muscle.

What are the Main Benefits of Botox? a) Botox injections offer a chance to see whether reducing spasticity in a muscle makes a big difference for your child. If it does, you may want to consider the more permanent solutions which surgery offers. b) Botox is also useful before a new treatment like a brace or splint. Bracing a relaxed muscle helps prevent contractures. This is easier than trying to "undo a contracture, therefore, younger children benefit more than older children.

How is Botox Given?Botox injections are given in a room in the Orthopaedic Clinic. The place where the Botox will be injected into the muscle is marked, by your doctor, with a pen. This area is covered with a cream called "Emla" which numbs the skin. The orthopaedic surgeon injects Botox through the skin into the spastic muscle fibres using a very fine needle. Most children do not feel pain or even remember the injections. A nurse will stay with you and your child until the procedure is finished. The procedure takes about 2 hours to complete.

What happens after Botox Injections? Your child can go back to his/her normal activities. Avoid bicycle riding or climbing --may be a little unsteady for a few days. Some children require a cast to help stretchout tendons and muscles. This is usually put on 1-2 weeks after the injections. Your child will return to his/her therapy program. The therapist will work on the particular muscle injected, as well as, encourage new skills.

Ice Cream

2008-02-14T22:33:00.002-06:00

Ice cream! Yes Alex is back to liking ice cream. This week he came home from school with a note saying Alex had had an ice cream Sunday and really enjoyed it.

So that night we asked if he wanted ice cream. A strong quick shake of the head let us know he wanted ice cream!

Next morning as I was asking him if he wanted bacon - no; sausage - No!; he grabs my wrist and pulls me over to open the freezer. Once open he points down to the Blue Bell ice cream.

No way! Sorry my friend, no ice cream for breakfast.

He continued to ask for ice cream the whole week. He even once agreed to pull in to DQ for a Heath bar blizzard. It has been 3-4 years since he showed interest in ice cream.

To funny. Change the meds, change the appeal of various foods.

Whew!

2008-02-11T10:46:00.000-06:00

Made it through a night without seizures. Alex looks good and ready for school.

We had a triple play weekend. A seizure Friday AM of course but then he made it to school. Then 11:30 and 5 AM Saturday so he got DIASTAT and slept till 2 PM

Then Sunday AM another one in the early morning, but he got up by 11 AM. Thankfully none last night so perhaps you will have a good day.

We did get to go looking for trains yesterday. But we only saw a couple stopped ones. But Alex did enjoy the cows and has decided to once again ‘talk to them’. Alex hangs his head out the window, says, ‘Uhhhhhhhhhh!” and then follows with a big ‘COW!’

Marycke and I have noticed with the change of meds Alex seems to want to communicate more. Then yesterday he mad coffee on his own (a little strong) and then spend most of the evening in front of the oven getting whomever would walk by, to help him set the timer. He would watch it count down and then 2-3 minutes later get the beep! Then reset it to go again. For sure he did that for more than 2 hours last night.

Double Seizure Morning

2008-02-09T08:21:00.000-06:00

Well, no DIASTAT on Friday AM, but this morning he had seizures 1:30 AM and again at 6 AM, so Marycke has given him DIASTAT. Guess we will have a quiet day at the Sahver house.

Yesterday he had a seizure 6:34 AM but was up later and able to go to school. Once he got home, we got a visit from Jennie. She is his case worker for Hill Country Service. They provide him with his medicaid.

Of couse with those fingers forming an 'M' and pinting down I knew he was mor einterested in going to Mac Donald's then getting his picture taken.

Sunday training

2008-01-20T15:16:00.000-06:00

Although very cold overnight, this afternoon the sun has come out and Alex and I enjoy watching the trains. They move rail cars of lumber every Sunday. So we get Mac Donald's and then hang for a couple of hours.

Doctor's visit

2008-01-17T15:25:00.000-06:00

Today Mom and Marycke are off to see Dr. Szabo. They are going to review the weird blood levels. And as it turns out they decide to take Alex off Trileptal and put him back on Felbatol.

This will take nearly 3 months. We did have good control in years past. But then there were safety concerns.

So after 2 hours they finally got to see the Doctor for 20 minutes or so.

Seizure Day

2008-01-16T15:23:00.000-06:00

Well just could not wait for his visit to the Doctors. Alex had a seizure over night (11:30)but just one. Marycke gave him DIASTAT.

Tomorrow we see the Doctor.

Helping out

2008-01-13T14:55:00.000-06:00

Alex enjoys suing the blower or running the lawn mower. Here he is helping Mom with the leaves.

Much Improved

2008-01-09T21:29:00.000-06:00

Alex is much improved. After the blood test Monday he seemed to perk up. It also sinc ehe has returned to school. Maybe he was just too comfortable here at home. Maybe we let him sleep too much. Whatever it was, he seems to be returning to his normal routine.

Wednesday, horseback resumed. Alex again gets to ride Cheyenne. Marycke helps out by walking along side. They see to have a good time.

Not so great

2008-01-06T04:35:00.000-06:00

Another day without seizures but maybe Alex is having little ones we just can't see. He seems to be sleeping a lot. Like 14-16 hours a day and is drooling a lot. He does not want to watch trains, do puzzles, eat, drink ...

No talking. No alllll rights!. Just a lot of leaning, drooling, and eye fluttering. We miss our happy buddy!

Maybe his meds are out of balance? Marycke is going to get a blood test tomorrow.

Morning Moanings

2007-12-22T05:57:00.000-06:00

It's early on a Saturday morning. Nearly 4:30 AM. I am working in the offie and as always I have the intercom on. I here Alex russling in his bed. It is getting louder and louder. Now he is snorting. Bummer! First day of the CHrsitmas holiday and he is having a seizure. I am up out of my chair, through on the hallway light, trying to decide whether to wake Marycke or allow her to sleep. Into Alex's room I barge, throw on the lights, and whoa! He is sitting up in bed, no seizing but laughing. I guess he had passed some gas and was laughing - not seizing. So off go the lights. He gets a little back rub from Dad. And I am back in the office. Thankful that there was no seizure and we all may have an enjoyable Christmas. We hope you all have a great time as well.

Seizure Monday

2007-12-19T06:07:00.000-06:00

Well we made it through the weekend but now 5 AM Monday morning and Alex is seizing. He had crawled into bed around 3:30 AM. I tried to get him to go potty forst but he refused.

So of course now he is seizing and wetting the bed. Looks like another weekly trip to the Wash Cycle to wash the kingsize mattress pad.

Marycke gave him 20 mg DIASTAT. No more seizure till, 3:00 PM. Hmm, that is unusal. So he gets another 10 mg.

We got him dress and hopedd he would be ready for school. He had slept through the night and remainded home all day Tuesday.

Another Monday Moaning

2007-12-10T08:18:00.000-06:00

Well we made it through the weekend - no seizures. BUt 4 AM this morning he had another seziure. Marycke gave him 20 mg DIASTAT. No school.

We did have a fun weekend watching trains and planes. It was a nice December, South Texas Day, you know, mid 70s. So we went to the TTM and rode the train. Alex also likes the scale model trains inside.

But I guess weekly seizures remain the 'name of the game.'

Making Coffee

2007-12-08T09:59:00.001-06:00

Not only does Alex like to drink coffee, he enjoys making it as well. Here is the video.

Nice week

2007-12-07T08:48:00.000-06:00

Alex is doing well. He has been sleeping in his own bed. Eating well and generally been in a good mood. He did have nose bleeds Wednesday and Thursday but they were easily stopped.

Nose Bleed

2007-12-04T19:33:00.000-06:00

The weather must be getting cooler and dryer. Alex has had several nose bleeds. Here is his note from school.

Neal & Marycke,
Hi, Alex has been working great at McDonalds and MacArthur Park Lutheran Church. Today he had a nosebleed and got some blood on his clothes. I wanted to tell you so you would not worry. Alex has been asking for a coke at the MacArthur Park work site every time he is there so we are working on using vending machines for our break.

Enjoy this great day,
Linda Higgins

Eye Fluttering

2007-12-02T07:28:00.000-06:00

Alex continues with weekly seizures. Usually Saturday night or Sunday AM. Quite often while watching trains or doing a puzzle, he will stop, flutter his eyes, and then resume what he is doing. We are checking with the Doctor to see if these are peti mal seizures. You may be able to see it here on this video.

Horseback

2007-11-29T07:40:00.000-06:00

Finally, after nearly a month we got to take Alex for hippo therapy. He really enjoys the horses. It is cold but other than beign distracted by the trains he is doing well.

Seizure Saturday

2007-11-24T15:59:00.000-06:00

Well for a change Alex had seizures on Saturday. He had a mild one around 2 AM and then a stronger tonic clonic at 7:20 AM. We held off giving him DIASTAT and he slept till noon.

Now he has been up enjoyimg a toasty fire while doing a puzzle. Neal and Alex have watched a little football, made and drank coffee and just picked up Sonic for Alex. He loves those foot long cheese dogs and tator tots.

Happy Thanksgiving

2007-11-22T16:07:00.000-06:00

Alex enjoyed a great turkey day. He got to have both his sisters come home and then dinner with Grandpa.

Training

2007-11-17T11:51:00.000-06:00

Yeah it is the weekend again. Love hopping in the van and chasing trains with Neal.
Sometime by the harley store as well.

Another Seizure Weekend

2007-11-12T16:08:00.000-06:00

Another weekend. More seizures. This time not as bad as last.
He had 1 Sat PM, 1 Sun AM and another Sunday afternoon.
Fortunately no need for DIASTAT this weekend.

Strange this time was the Saturday seizure which was AT 9 o’clock while he was awake and doing a puzzle. These non sleeping sudden onset seizures always throw us off.

Anyway we expected to have him to school by 10:30 but he crawled back into bed and slept till 1:30. No school today.

Bowling

2007-11-09T18:09:00.000-06:00

Alex seems well. He certainly had fun at bowling. Cool, silver medal! He came home off the bus and just talked and talked all afternoon and night. He is totally into wanting to be with his loved ones.

Doctor Visit

2007-11-07T20:12:00.000-06:00

Alex had a good visit at the doctor. We still have some work to do on his hamstrings, but he enjoyed dinner with his Grandpa and then we watched airplanes for awhile.

ALex really enjoys doind puzzles in Neal's new 'techno DOCTOR' office. He can open and close the garage door while looking for the bus to come.

He seems ready for school and we hope all goes well.

Airshow and another Seizure Sunday

2007-11-05T17:16:00.000-06:00

Sad to say it was another Seizure Sunday. Alex will not make it to school today.

We had a fun Friday night watching the Night Air Show out at Randolph. Alex really liked the old airplanes.

Then we spent Saturday working on computers and watching a few trains. Come Saturday night (11 PM) he started with his seizures. Back to back, very hard ones. So Marycke gave him Diastat. That lasted till 8:55 AM when he had them again. So more Diastat. Bigger dose. Fortunately he had no more and slept all of Sunday.

Once again it seems after adjusting the VNS he has increased seizures. July and August were great with only 2 per month., But now after the adjustment he is back to weekly. And they seem more violent.

He is still sleeping this AM and we hope he can get to school tomorrow.

Feeling good!

2007-11-02T20:29:00.000-05:00

Alex had a great day. He got a haircut and then we went to Grandy’s for a little sausage and ‘plane watching’.

He slept well and is ready for school.

Halloween

2007-10-31T20:32:00.000-05:00

Alex had a fun time last night opening the door and handing out candy.
Hope you all had a frightful night as well.

He had a good night and ate well. He was ready for the bus. Forgot his wrist band but there is one in his backpack.

Seizure Sunday

2007-10-29T08:36:00.000-05:00

Well no Alex at school this morning.

We had a pretty good weekend but this AM he had seizures and we had to give him DIASTAT.

Friday and Saturday were fine. We did lots of train and plane watching, even got to go by the Harley store again. Then Sunday 8 AM he had a single seizure. He got up okay around 10 AM and seemed okay,. We spend the day doing yard work and then some late afternoon train watching.

Come time for bed we ask he to go potty. And there, straining on the pot, he goes into a seizure. We expected more but nothing till 6 AM.
Hmmm.

Seizure Day

2007-10-16T20:42:00.000-05:00

No Alex at school again today. Yesterday he had seizures at 5 and 8 AM. Then later more between 3 and 4 PM. We were able to keep him home and give him DIASTAT but that means he will not be in any shape to day to enjoy bowling. Maybe tomorrow.

Yeah for Linda and the kids for a Silver Medal!!! The NEISD Special Olympians in Team USA Basketball have won silver medals at the 2007 Special Olympics World Summer Games. The students will return from Shanghai on October 13, 2007 with their medals in hand. The students are Jennie Cardenas, Arturo Esquivel, Naser Harhara, Wayne Hoffman, Stephen Koehn, Ashley Muth, Jim Scarl, Joe Spade, Zack Thompson and Katy Walding. Coaches Donny Horadam and Robert and Linda Higgins (Alex's teacher) also accompanied the students to the games.
The 2007 Special Olympics World Summer Games were in Shanghai, People's Republic of China, and was from October 2 through October 11, 2007. The event marked the first time the World Summer Games was in Asia and the second time outside the United States.

Bowling

2007-09-11T20:53:00.000-05:00

Alex had a good afternoon and a good night. He never got to sleep and around 11:00 PM pushed me out of bed and we switched places. But then he was fine the rest of the night.

This morning he seems a little crabby. More protests than we would have preferred.
But he had a good breakfast, French Toast and bacon, and was ready for the bus.

He did have a number of BIG sneezes this morning.
Have fun bowling!

Camp CAMP

2007-07-22T19:12:00.000-05:00

Alex is off to Camp. For 15 years he has gone to Summer camp for one week in July. The camp is located Northwest of San Antonio in a little town called Center Point. CAMP, or Children's Association for Maximum Potential, enables children with disabilities to thrive in a recreational environment where safety and nurturing are primary.
CAMP continues to provide summer camp experience for children with no verbal communication or self-help skills or with need for multiple medications around the clock.
In order to allow regular care providers a complete respite experience, we accept the siblings of our campers CAMP was organized in 1979 and is accredited by the American Camp Association. more
Alex seems excited to meet his new counsolers Chrisey and Tyler. She is from San Antonio and he from Houston.
Camp CAMP has a bed capacity of over 300 overnight guests. CAMP's 55 acres include an archery range, dining hall with kitchen, outdoor sports court, medical library, swimming pool, several covered classrooms, and an activity pavilion. Campers sleep in large air-conditioned and wheelchair-accessible cabins.

Campers are assigned to tribes based on age and gender. Each tribe has an experienced supervising Chief Cabin Counselor (CCC), an Assistant Cabin Counselor (or A1), and 8-10 additional counselors. This year Alex is a pawnee (17-21 year old) and can attend for two more years. They have now started an adult camp, so Alex may still be able to attend as he gets older.
Here Marycke checks off with his counselors what Alex has packed for camp. Later we will meet with the medical staff and review his meds. Everyone of course is hoping he will have a GREAT week with no seizures!

Much improved

2007-07-20T10:52:00.000-05:00

After no appetite last night, Alex has been eating everything in site. Just for breakfast he has hand 6 sausage, coffee and two crepes. He slept well. No seizures. And did not get up till 11 AM. He still gets his medicine at 8 AM and I am always surprised we can get him to 'open', swallow two teaspoons of apple sauce (which contain his meds), and then roll back over and go to sleep.

Now we are having a down pour again. So Alex is out in the garage, sitting in his cahir, sipping coffee and watching the rain come down.

Night Seizures

2007-07-19T12:28:00.000-05:00

It's early Thursday morning (1:06 AM) and Alex just had a seizure. It was not very long nor very hard. So I figure we 'missed a bullet'.

But then comes the second one (1:16) and a very hard seizures. So I pull back the sheets and wait for it to end. I lasted about 4 minutes and then came the tell tale sign of Alex emptying his bladder. This is not unusual but sometimes we are able to get him up and to the bathroom before he wets the bed.

But not this time. So once the seizures stop I have to try and strip him down, give him a sponge bath, strip the bed, redress him and put on new sheets. Whew! Sure miss Marycke. She has gotten very good at doing this.

Now the bad part is usually he is in his bed which is only a double but I had him sleeping with me in a King. So the bed mat cannot be cleaned in our washer dryer. Oh well, off to the laundry mat tomorrow.

I did have to give him a 20 mg dose of Diastat. But then after that he went into his 'antsy' 'walk about' routine. This is where Alex is disorientated and will not lay down. He gets up and starts walking the halls. All the way out to the livingroom, then back, then to his room, then to Grandpas office. After 30 minutes of this I get him to lay down and he falls asleep (thank you Diastat).

I too get to sleep and how he does not have a second seizure.

Yeah he made it through the night without a second seizure.

Neal

Looking good!

2007-07-18T16:30:00.000-05:00

Much better night. We got to go to Joe's Crab Shack where we could have a a little dinner and hope to see a train come by. Alex did very well eating salad, mac & cheese and of course enjoying a coke.

I tried to get him to eat some coconut shrimp but ne begged off. Alex loves to give the waitress his empty cup for a refill. We did see a train come by! And when all done Alex got to pay. He gets fired up when the wait staff gives him money back.

Photo Blog

2007-07-17T20:48:00.000-05:00

Alex and I shared Mac Donalds at the office.

Driving with Dad looking for trains.

Hope she comes soon so I can pay.

Alllllllright! She gave me money back!

BOOM!

2007-07-17T14:06:00.000-05:00

More thunderstorms. Wow this has really been a wet Summer. Usually by now we are under water restriction. But so far I have not had the automatic sprinklers on, nor have I lowered my lawn mower from the tallest setting.

I mention this because Alex has really been enjoying the rain. He still sleeps through the night thunderstorms but those that fire off during the daytime bring a big smile to his face. He even likes to go open the garage door, pull up a chair and just watch it rain. Sometimes for nearly an hour.

Today is a special day. Marycke and Malinda have left for Ann Arbor to visit family and friends as well as attend th annual Art Fair. So it is just the 'boys' for six days!

Today Alex was very sleepy so he did not make it to school. He does not seem to be having the petite mal seizures we have seen over the past 2-3 days. His balance is good and he has a great appetite. Now he is helping Grandpa with the typing.

We just got back from watching trains during our lunch hour. He got nuggets, fries and a Diet Coke and off we went to Whetmore along the train tracks. There we also can watch the planes take off and land.

Now it is late afternoon. Alex is enjoying a cup of Joe and seems to have made himself right at home at Grandpa's desk.

I'm back

2007-07-16T19:52:00.000-05:00

Got my camera fixed today. Time for Alex to resume taking self portraits. We must have nearly 500 so far.