A better day

Today was a good day. It seemed extremely good because yesterday was terrible. Today, Stephanie, Harry and I were busy. We like it that way. We took Mike to Camp Invention, went to dad's office, saw a movie (Slappy and the Stinkers), saw a puppet show at the library, ate lunch at Sonic and then picked Mike up from camp. Yesterday, Mike did not want to go to camp. He cried (alot). He says the camp isn't challenging. Hasn't the kid heard of just having some fun? He wants more of those algebra problems from last week. The camp director and three counselors convinced him to stay at camp. I think it sounds like lots of fun. He is taking apart a phone and answering machine and using the parts to create a new invention.

Harry has had a few episodes. I don't worry about him as much now. Still not making much progess swallowing the M & Ms or Skittles or Hot Tamales or any other kind of candy he can use as an excuse. Mike called out that Harry was "acting weird" while they were playing yesterday. I wondered, is he being normal weird or seizure weird. I think it was a little of both. Speaking of weird, for those of you who are blessed to see Harry out and about these days, please excuse his attire. My hope for this Star Wars obsession to wane is not happening. He has not grown hair that we now braid on one side. It is braided brown ribbon with one of Stephanies clips--a sign of a Padawan, a Jedi in training. He also has a glove on one hand which is his "artificial hand." The real one was severed with a light saber. On a good day, we can get him out of his bath robe but he always has his belt to hang his saber and what ever else he can find to make himself look goofy. Why are my children not content to be themselves? This too shall pass just like Peter Pan, Shawn Bell and the others.

Poor Stephanie just wants to go to Cousins camp. We made a chain so she could see how many days until she leaves for Salado. She decorated it, put stickers on it and stapled it together. Now she can't believe that she is suppose to take it apart after all the work she put into it. So it just hangs on the doorknob--decorative but completely useless. Her biggest question today was "is a condo where the houses are all stuck together?" She surprised me today by saying "eventually." I didn't know that word was in her vocabulary. We made "cookie cutters" yesterday. She has been asking to make sugar cookies that you do "like play-do" for weeks. She is now a happy camper!

Ears...

The Mom has pointed out that she has taken over primary posting duties. Well, here I am posting. Much to her dismay, though, I'm posting on the inane type of topic that this blog was originally created. Some levity needs to be sprinkled in with the more serious topics, though...

The Mom seems to think I produce prodigious amounts of ear wax. Never really comparing this particular attribute with my friends, I had not thought much of the volume with which I produce this bodily by-product.

Interestingly, though, it does look like suprisingly like this culinary delight. If that's not gross enough for you, there are other tasty treats to peruse (or purchase, if you have a strong stomach).

My mouth is watering already! (Or is that my ears dripping?)

Summer Days

We spent a very productive weekend at home. The dad worked in the yard and cleaned out the gargage. The Mom cleaned inside and played with the kiddos. By Saturday night, we were ready to enjoy a giant Poppa Rollo's pizza as a reward for our hard work. We like Poppa Rollo's because they put so much hamburger on their pizza. Stephanie doesn't like pizza but she does like hamburger meat. So... everyone has to dump their excess meat on her plate before they eat their pizza. Not only is the pizza good but the boys love watching The Three Stooges there. They laugh so hard that I fear they will fall off of the balcony where we always end up sitting.

I noticed this week that my kids hear and see more of the news than I would like them to. As I was unloading my groceries at HEB last week, Harry saw one of those crazy magazines by the check out with Michael Jackson on it. He asked "Is he a predator?" I wasn't sure how to respond to that. That same night, Mike saw the the aging Klan member who was convicted of killing 3 civil rights activist 41 years ago and exclaimed "What did the Six Flags man do to get into trouble?" Did you notice the similarity? Too much information for little kids. I think we are going to turn off the TV, hit the books and have some good old fashion fun outside.

This should be a great week. Mike is attending Camp Invention. Harry should be seizure free. Please pray that we can help Harry learn to swallow his medicine. Progress has been very slow. He has been a bit fussy and easily aggrevated. My prayer is that he will adjust quickly to the medication changes and return to his normal sweet self. The doctor was very confident that Harry should be completely seizure free soon. He was impressed with Harry and even said he was quite advanced for his age. This was comforting to hear since The Mom has been worried that the seizures have been destroying those precious little brain cells. Thanks for all your support, prayer and words of encouragement. We really do appreciate all of you!

Back to Normal

With The Big Appointment behind us, we are trying to get back into a normal routine. Mike is attending a Math camp this week sponsored by WISD. He loves it! The camp is intended for completed 3rd graders but he was invited to take the test to try to get in. He blew the top off the test! He came home today with algebra homework and a smile from ear to ear! The Mom thinks that math should only involve numbers. After all, there are an infinite amount of them right? Once you start adding in the alphabet, there is just too much confusion. It just isn't right.

Harry is having a decent week. He is still having some little moments where he stares off for a few seconds. He is not getting his medicine as early as he should because he is sleeping so late. The Mom has had to wake him up every morning to take Mike to camp.

The first thing Stephanie says each morning is that she wants to go to the water park. Summer is a fun time but we are so used to structure that we feel a little lost without a calender with hourly events. It is also a hard call for parents about how to keep kids motivated in the summer. Mike has put reading on hold (with the exception of the Sports section of the paper and SI for kids) until the next Harry Potter book comes out. Harry would rather watch Star Wars or Harry Potter for the 100th time than pick up a book. The Mom would love to see them practice handwriting. (That's not going to happen!)

Congrat to the Baylor Bears. It was fun to follow them (on TV) to Omaha but I must admit I am glad we don't have to spend another night glued to the TV.

Got another meeting tonight anyway (PSAA-Parents Supporting Advanced Academics)!

Update

Sorry it took a while to get this out here. We got home and I had to watch the Baylor game, which I had taped. I worked hard to avoid hearing the outcome, which is also why I didn't call some people I should have. What a game, though! But, what happened to Trey Taylor? Hopefully, we'll keep going and he'll have another chance, because he certainly has the ability.

Anyway, between watching the game and being tired, neither of us felt like posting. So here goes...

All in all, we had a great trip yesterday. Dr. R was great. We felt very comfortable with him and he definitely took time with us to talk to us and Harry. Harry did fine for his EEG and following, but once we got to Dr. R's office, his tiredness definitely started to show. We got called back fairly quickly and they did height/weight/BP and got us in an examining room. About this time, Harry started going crazy. He was climbing on everything, doing his "muscle kid" thing, trying to turn the lights off, running around the room, etc. If we tried to hold him, he tried his hardest to get away from us.

Dr. R was in by 2:30, at the latest, and Harry kept up his act. Dr. R did a very thorough "interview" about what's been going on and about our medical history, probably about 30 minutes. We reassured him several times that Harry didn't normally act like this. He pointed out that we had learned the value of sleep on this trip.

He then spent another 30 minutes (or so) doing a very thorough exam of Harry. I guess this gave Harry something to do, because he settled down for this and cooperated very well for this. Dr. R poked, he tickled, he put a "buzzing" tuning fork on Harry, tested muscles, balance, reflex and I don't remember what else, but it took a long time! He also tested his cognitive ability, with some questions and had Harry read a little bit.

Then Dr. R spent another 30 minutes (or longer) with The Mom & Dad. (Yes, that's right, we were there until 4, and we were with Dr. R for at least 1.5 hours.) I had gone to get a blanket for Harry because he wanted to lie down on the examining table. When Dr. R started showing us printouts of the EEG and explaining, I think it bored Harry to sleep. It actually worked out well, as this gave us uninterrupted time to talk to Dr. R.

(I realize this has gotten very long, but I'm almost done.)

We basically got the same diagnosis from Dr. R- complex partial seizures with secondary generalization. However, we felt much more comfortable hearing this diagnosis this time. Perhaps because it was the second time we had heard it, but I think it was the fact that we really felt like Dr. R had taken the time to look closely at the EEG and had done a much, much more thorough exam of Harry. He also deals with kids exclusively, so he has a better idea of what to expect from kids.

We also felt like Dr. R had a plan for Harry and his medication, rather than just throwing different things at him to see what worked. We are going to continue with Depakote, though we will change the dosing. Dr. R thinks that Harry is continuing to have these "breakthrough" seizures and smaller incidents because the level of medicine is not consistent throughout the day. So, he wants to put Harry on Depakote ER (extended release), which is designed to release the medicine over time and keep a more consistent level. Hopefully, this will knock things down and keep Harry seizure-free.

The only problem with this is that the pill (250 mg)-

is approximately the size of a small watermelon. We will have to train Harry to swallow something that big, since it can't be broken or crushed. Dr. R suggested that we start getting Harry to swallow mini M&M's and work our way up to peanut M&M's. I'll try to get The Mom to learn along with him. She has to break a tylenol in half to swallow it, so maybe she can be trained, too.

We will go back to Dallas in August for a follow up, then Christmas time, we will go again and have an EEG at that point. Assuming we can get things under control, we'll go about every six months. Dr. R said there is a 70%-80% chance that Harry will outgrow this, so keep praying that Harry can quit taking this medication at some point in the future.

Well, I've said enough. I'm sure The Mom will post later and fill in the holes. Thanks for reading!

Stage 1 complete.... and Wow!

Thanks for the prayers!

Harry has done great so far! He slept from about 1:15 - 5:15. We left about 5:30 and made it to the hospital about 7:45, after a stop in West for kolaches. He said he was tired, but he was too enthralled in Return of the Jedi to fall asleep (thanks Meme and Papaw for the DVD player!).

He did great for his EEG. He slept most of the time, and of course, the EEG tech came out telling us how wonderful he is. Tell us something we don't know! She also said that he had a seizure during the EEG, so it will be interesting to hear Dr. R's take on what's going on. So far, so good!

Currently, we are hanging out at a mall- The Shops at Willow Bend. Let me tell you- this ain't Richland Mall. After starting to type this post on my Treo, we got here and I saw signs for the Connection Court, with free wireless and free laptops for customer use. It's a lot easier to type on this thing, so here I sit. And, with apologies to my Mac friends, even though I can see the Apple store from here, I'm doing this on an IBM ThinkPad.

Not really sure what the plans are for the rest of the day, but the doctor's appointment is at 2 and I'd like to find a place to watch my Bears for at least a few innings before that. I'll try to post again later, or tonight, at the latest.

Random thoughts after midnight

Our sleepy boy is working hard to stay up. We have played checkers, cards, PS2 and now he is watching a movie. Our dog is terribly confused. I can see the questions in her eyes "Why does little Harry get to stay up so late?" "Where are the other little people?" "Can't I just go to sleep?"

The Mom worked at the hospital this weekend. Work is always busy but a nice break from the world of child rearing. The dad gets to shuttle kids to their activities, kiss boo-boos and answer questions like "Does God have armpits?" The Mom loves talking to other health professionals yet always leaves appreciating getting to stay home with the kids. There are always so many interesting stories from the hospital. General Hospital has nothing on the real thing!!

The Dad got to watch Baylor's gold medal track stars practice Saturday. The boys were not as impressed as The Dad. I never thought I would say this but living in Waco is great! I don't miss the Houston traffic or the hour commute to the Medical Center but for awhile I couldn't imagine living without the museums, zoo, malls and restaurants. Waco has grown since The Mom moved here in 1989. We now have good restaurants, a fun zoo, multiple museums and good sporting events to attend. We were eating at a pizza place one night and sat next to Stephanie Blackmon (Lady Bears Basketball star). She was eating by herself so we just sort of joined her. That is not likely to happen in a big town.

The Grandma has come from the big city (Houston) to take care of Stephanie and Mike. Mike starts a Math camp tomorrow so he will be busy in the morning. Stephanie is looking forward to having The Grandma to herself. We are blessed to have such a wonderful family and great friends. Thanks to all who are praying for us!

Who needs sleep, anyway?

Tonight and tomorrow will definitely by interesting. Harry has his appointment with the pediatric neurologist tomorrow afternoon at 2. First, though, he has a sleep-deprived EEG scheduled for 8:30 am. To sleep-deprive him, we are supposed to keep him up until midnight, then wake him up at 4 and keep him up until after his EEG. So, first we have to figure out to keep him until midnight. Then we have to keep him awake in the car on the way up there. Harry is our child that likes to sleep the most, too. He's always been the late sleeper of the 3 kids.

Then, after the EEG, we get to hang out in Dallas until 2 with a very tired boy and no place to go. I'm not sure he fits, but we may have to resort to a stroller so he can sleep while we hang out at a mall or something. To say the least, it will be a unique experience.

According to Harry's Sunday School teacher, he had another one of his "spells" (as she called them this morning). They were doing their story time and when they were supposed to move on to their next activity, he didn't. They held him for a few minutes, and he was fine. When I picked him up, he said he didn't feel well, but he just said his throat hurt. By the time church was over, he seemed to be fine.

I think I've figured out to post via an email, so I'll try to post tomorrow from Big D to let you know how things are going.

The Queen of our house

Many have asked what Mike could have possibly done to get Playstation 2 taken away for the summer. The story is actually quite funny now but no one was laughing at the time. Mike was upset that The Mom had asked him to set the table for dinner. He was fed up with people asking him to help around the house. See, Mike is really pretty sneaky. When we ask for the kids to help with a task, he conveniently sneaks off to the bathroom with the lastest Sports Illustrated for Kids magazine until our requests is done by the other two. When he said he needed to go to the bathroom, I told him he could quickly help set the table and he was free to go. He screamed, he cried and told me how unreasonable I was being. I have learned after 8 years to read him very well. I knew he didn't really need to go. So I insisted that he help. He said I was too bossy. He wouldn't stop screaming so I said "No PS2 for a week if you don't help." He growled even more and I just kept adding a week at a time. I thought he would stop when he realized he wasn't doing himself any favors by being rude to me. I tried to explain to him that as his mom, it is my job to help him learn to be responsible. To that he replied, "You just think you are the Queen of this house." I didn't know what to say. Harry took care of that for me. He stepped in front of me and in his most serious voice he announced "SHE IS!!"

Bear Fun

Baylor sporting events have always been a part of our lives. Mike has only missed one home football game in his life (when he was 3 months old). He has every Baylor media guide from 1997 to the present. What is crazy is that he has them MEMORIZED! Until this year, we have gone to BU games just to have somewhere to go--cheap entertainment if you will. Many times the boys wanted to go to the games to see the OTHER team play. Today was different! We went to see the Bears beat Clemson to win a trip to the College World Series. It was so exciting. At one point, The Dad took the boys to play on the hill. Stephanie was asleep on my lap. As I sat watching the game alone I thought to myself, I really like this game and I actually understand what is going on. I even found myself giving the umpire a piece of my mind. It was a great way to spend an afternoon!

The Dad decided since he was sweaty he couldn't return to work. So we took a family trip to the Waco Water Park. Yes, Waco actually has a great water park!

Did I mention that we started out the day with VBS? I am awed by the fact that there are kids in our room who may not know the love of Christ and by the end of this week their lives can be changed. I can't wait to see what God has in store for these young ones.

I ended this day with a PTA meeting. The Dad reminded me that this is summer and that school is out. I am perfectly aware of this. I think it is fun to keep in touch with school over the summer! There is actually a lot of work to be done.

::EDIT::

The Dad here, doing the techie things, like adding links that The Mom is still trying to figure out. She told me that we need to figure out how to add pictures. I told her that she needs to re-phrase that. I told her that I know how to add pics; what she really wants is for me to add them...

And I did hear her admit that she actually enjoyed the game beyond the family time that we enjoyed? Would she have gone to the game without me? Hmmm... Questions to ponder.

Sweet Peace

The Dad seems to have taken a leave of absence from blog writing so I guess The Mom will have to do for now. As I write, I am experiencing something so rare and so precious to this only child....peace and quiet. The kids have gone to Salado to spend the night with The Grandparents. Stephanie called The Grandparents to see if she could spend the night with them. She has wanted to spend the night with them but she is a bit of a Cling-On to The Mom and always backs out at the last minute. When Harry heard about Stephanie's overnight plans, he invited himself to Salado as well. Mike wanted nothing to do with that. He is a homebody and never wants to get too far from his media guides, Gameboy or Playstation2. (By the way, his Playstation2 privileges have been taken away for the entire summer but that is another story.) Before putting Mike to bed last night, The Mom said that she and The Dad could go on a date if he went to Salado as well. I don't know if that did it but Mike woke up this morning and said, "I would like to go to go with Meme and Papaw if that is alright." WOW! Did he really think I needed to go out on a date that badly. Was it that obvious? He must know how these last several weeks have been crazy with all 3 kids home. I think he can see that Harry's seizures are beginning to take their toll on my sanity. I feel like I am always on high alert, always watching Harry even while he sleeps.

Speaking of Harry, he has had a few more episodes but they have been much more slight than the previous ones. While writing thank you notes for his birthday, he "zoned out." He had no idea what he had been doing. He quickly recovered and had no residual from the episode. On Thursday, he was lightsaber fighting with Anakin and he had a short seizure. I sat him down and gave him his medicine and soon he came around. What I noticed this time is that Harry's speech is always affected by the seizures. He had no facial expression and a distant look in his eyes. Although I am able to remain calm during these times, I am overcome with emotion on the inside. What is this doing to my little boy? Is this harming him? Harry was crying this week during his rest time. I asked him what was wrong. He said that his life is ruined because he has started having seizures. He is mad at God. We talked about how God loves him more than he could imagine and it was not God who had done this to him. He has a lot of issues to work out. I feel like my words are inadeqate to comfort him. We pray. We cry. I wish I could make them go away. I know God is in control. I know good can come from this. My prayer is that we will allow God to show us through this and that His perfect will be made known to our sweet boy.

Birthday Wishes

Thanks to everyone who called Harry on his birthday! He really loved all the attention. After a while, he took The Mom aside and firmly but sweetly announced "I am not taking ANYMORE calls." He had a rough day but managed to end it on a happy note.

We got lab results back today. The doctor called to tell us to increase the medicine once again!

Summer of Sabers

It's The Mom again! Summer is certainly a reality for the Family of Five. The kids have been going to bed later and later every night. Last night they were up even as the 10:00 news was coming on. Mike had a pizza party to celebrate the end of Little League season. I couldn't be more excited the season is over. What an experience it has been! I am most certainly a Woodway Family Center kind of mom. I am overjoyed that my husband will get to come home from work and we will get to sit down and have a meal as a family again. I am sure that my children will miss Bush's chicken, Mr.Gatti's and all the other quick dinners we have survived on for the last several months.

Harry had blood work done today. He is so brave. Not a tear was shed. Mike got the heebie-jeebies and had to leave the room before the needle even came out! Of course, we didn't hear from the doctor today. I didn't expect we would.

Harry dressed yesterday for his last baseball game but said all along he wasn't going to play. When we got to the game, Harry realized that the game would be forfeited if he didn't play. The dad strongly urged him to play (for the sake of the team). I thought we shouldn't push him because he had a rough day and just wasn't himself. Harry played and really gave it his all. He made his 3rd unassisted double play of the season and got all 3 outs in one inning while playing in the pitching position. My heart was filled with great joy to see Harry smile and jump around the way he usually does.

We have turned into a Star Wars home. We now have 4 lightsabers, a Darth Vader mask/voice changer and several action figures. Even Stephanie has turned to the dark side. She looks like a real live bobble head as she walks around the house with the Darth mask saying "you don't know the powers of the dark side." I just don't get the fascination with this movie that was written in such a weird order. Poor dad, he tries to explain it to me but I don't think I will ever get it

Birthday Surprise

This is the first time The Mom is adding to the blog. The dad wanted to make sure all of you know that he is not responsible for what I write.

Today we had a birthday party for Harry at the Baylor Football practice fields. I'm sure he would have had a great time except for the fact that he had a seizure just as the first guest arrived. As a result he lost his Grape-Nuts and felt "just terrible." Our normally excited, enthusiastic boy was lethargic and glassy-eyed. He asked to sit out of the flag football game that he and his friends were playing with special guest Ryan Jeffrey. As I put him to bed tonight, I asked him if he had a good time today. He said "it was such a sad day." It breaks my heart to see my sweet little boy so lost in those moments. Those of you who know Harry know that he is such a precious boy. He has such a tender heart.

Pedi Neurologist

We finally got an appointment with the Pediatric Neurologist after many phone calls. Harry is scheduled for an EEG on June 20 and appointment with the doctor immeidately after. The EEG will be at 8.

The really fun part? It's supposed to be a "sleep-deprived" EEG. Harry is only supposed to sleep for 4 hours the night before. We figure that means if we leave at 6 am for the appointment, he can't go to bed until 2 am. And then we have to keep him awake in the car. With the other 2 kids, this might not be a problem. But the boy likes to sleep. Almost as much as The Mom. So, one of us will need to stay up with him, which means one of us will be sleep-deprived, as well. Sounds like fun, doesn't it?