It has been a busy week!  I don’t have any pictures, unfortunately, but I thought I would write an update at least.

I started my new job!  I’m working part-time as a staff pharmacist at St. Luke’s Community Medical Center - The Woodlands.  It is part of the St. Luke’s system in the Texas Medical Center.  I’m glad to be working in pharmacy again.  I’m looking forward to being a part of team there!

Ethan is going to summer camp at The Climbing Tree at Christ Church United Methodist.  Some days he likes it and other days he does not.  Fickle child!  They had VBS last week and he seemed to enjoy that.  He has “Splash Day:” tomorrow.  They kids get to splash around in kiddie pools and slip ‘n’ slides.  They all seem to love it!

Mark is busy with work, as always.  It is always stressful, but he usually handles it OK. 

We are going to Disneyworld on Monday, 7/21/08.  We can’t wait!  Ethan wants to ride Space Mountain first.  We rode that first the last time we went, when he was 5.  Not such a great idea!  He was white as ghost when we got off, literally!!  He seems ready for it this time, however.  I’m sure we’ll have a lot of pictures to post from the trip.

I have a really nice Canon SLR digital camera - the 10 megapixel Digital Rebel.  Even though I’ve had film SLR cameras before, I’ve never really understood how to use them beyond the automatic, “point-and-shoot” mode.  I finally came across some articles on the internet that seemed to make some of the concepts understandable.  So I’ve been trying to put some of the information into practice using the manual mode.  A digital camera is awesome for learning because you can see the photo immediately.  Instant Gratification!!  I shoot several pictures of the kids at the divisional swim meet using manual adjustments.  Some came out good, while others did not.  I still have a lot to learn, but I love it when I get a really good shot.  Here are some of the shots that I liked.

I don’t know this little boy, but I though this photo was good. 

Here is a little boy named Matt.  He was getting ready to swim freestyle and looks as though he is pondering his strategy! 

This is Alex.  He used to live across the street from us.  He swims a mean backstroke.

Aren’t these 4 girls just the cutest?!  BTW, I did adjust the lighting on the shot just a bit.  And I cropped it in closer, too.  The others above are not retouched at all.

And this one is my favorite!  Isn’t she pretty?!  I have not retouched this shot.  I’m so happy with the way it turned out.  I was working on setting the f-stop, ISO, and shutter speed on the manual mode.  With the close-ups, I wanted to blur the background and not have to use a flash.  So, I’ll keep trying and learning. 

The Shenandoah Sharks finished the season on Saturday, June 21st with a fifth place finish in the Northwest Houston Aquatic League N2 swim meet.  The Rivershire Rattlesnakes captured the title, but all the teams turned in great performances. This year has been exciting and the divisional meet was no exception!  There were lots of close races, upsets, and record-breaking efforts .  Congratulations to all the kids for their dedication and hard work!  For the results, visit www.nwal.org and click on the results tab.

 Ethan swam the freestyle and backstroke.  He did great in both events!  But it was a long, hot day and we were all sweaty, tired, and grumpy by the end of his last event. 

Ethan and his friend, Zach, spent most of the daying with their Nintendo DS games. 

 

It was a great season and we all really enjoyed it.  We’re looking forward to the team banquet in August.  We also can’t wait for next season! 

 

I had an appointment with the sleep specialist doctor yesterday.  He looked at my sleep study results again and decided that I might benefit from some oxygen at night.  During REM sleep, my oxygen saturations drop down into the low 60s!  My brain and heart should be much happier and healthier with more oxygen.  So I will be on oxygen in addition to BiPAP at night.  He prescribed 2 liters per minute, which equates to 28% oxygen inhaled.  In comparison, regular air is just 21% oxygen.  I’m waiting for the home health company to call to set up delivery.  I’ll keep you posted!

I went in for my biweekly plasma exchange (plasmapheresis) treatment on Monday.  I had Sal, one of the pheresis technicians take a few photos for me.  I have my pheresis done at Methodist Hospital in the Texas Medical Center.  It’s a great facility with a fantastic staff.  I’ve gone there for pheresis since my son was 4 days old and he’s now 7!  (except for 2.5 years while we were in VA and I had my treatments at Inova Fairfax Hospital - also a great place)  The program is led by Dr. Chris Leveque.  The nurses and technicians include Billy, Sandra, Sal, Xavier, Jack, Robin, and Wilma. 

The whole procedure took about 2 hours from sticks to rinse back.  I get mine done peripherally, which means I get stuck each I go.  Thankfully, they give me lidocaine (a local anesthetic) before each stick.  They use a 19 or 20 guage (medium sized) plastic catheter for the return line.  A 17 ir 18 guage (large sized) metal needle is used for the “draw” line.  Here is a close-up of the “draw line”.

I can’t bend this arm during the treatment.  But I can bend the return line arm.  Here is a picture of the actual machine being used.

To pass the time, I watch TV.  Methodist has personal TV sets, which is nice.  Or if I don’t want to watch TV, I’ll take an iPod to listen to music.  Some people read, but I find it difficult with only one useable arm.  The machines are loud.  But I’ve found that noise-cancelling headphones work well to decrease the constant drone of the machines.  The headphones also make it easier to hear the TV!  Believe it or not,  I even fall asleep during the procedure!

We had a wonderful Father’s Day this year.  Ethan let Mark sleep late.  That was Ethan’s present to his Dad!  A very inexpensive gift!  Mark wanted pancakes for breakfast.  I made them from scratch.  I even whipped egg whites by hand!  The pancakes were yummy.  Ethan said they were the best pancakes he had ever had.  That’s high praise from a 7 year old!  My Mom and Dad came over in the afternoon.  We relaxed in the pool for a bit.  Then we went to Lupe Tortilla’s, our favorite mexican restaurant. 

Mark and Ethan at Lupe’s.

Me and my Dad.  Love you Dad!

Me and my Mom.  Ethan took this picture - he always takes the best photos!

There are a lot of possible therapies for MG and not everythig works for every patient.  I have tried most of them and the one treatment that works best for me is plasma exchange.  It is an invasive procedure, but it almost always works to improve my strength.  Here is a picture of the machine that is usually used for the procedure:

The procedure starts with placing two IV lines.  One line draws the blood out to go the machine.  The other line infuses the blood back into the body.  The “draw” line is always a larger metal needle that can stand up to the high pressure.  Most centers use a smaller, flexible plastic needle for the “return” line.  That way, there is an arm that can bend. 

A small amount of blood is removed (about several ounces) and it runs through a centrifuge in the machine.  The centrifuge separates out the blood cells from the blood plasma.  The “bad” antibodies that attack my muscles are removed with the blood plasma.  The blood cells (red cells, white cells, and platelets) are mixed with a plasma substitute and returned via the “return” line.  The whole procedure usually takes about 2 hours.

Most patients tolerate the procedure very well.  Some patients can experience nausea afterwards.  The nausea is believed to be caused by the mild anticoagulant that is used to keep the blood from clotting in the machine.  The nausea can often be prevented with extra fluid and anti-nausea medications.  Sometimes a patient’s calcium level can drop during the procedure.  The patient may feel numbing or tingling or a buzzing sensation.  The problem can be solved almost immediately with chewable calcium like Tums. 

Right now, I have plasma exchange every two weeks.  I’m very fortunate to have always had the procedure done at great facilities with competent and caring staffs.  But I wish they would all use LIDOCAINE before my sticks!  I’ll discuss more of the treatments in future posts.  

Remember…June is Myasthenia Gravis Awareness Month.  Thanks for reading!

Wow!  My in-laws celebrated their 50th wedding anniversary last Friday (6/6/08).  In this day and age, it is a miracle that anybody makes it 10 years, much less 50!  And my Mom and Dad will celebrate 47yrs in August!  They are role models for us all.  Congratulations!

We arrived on Thursday and had dinner at Mark’s brother’s.  We had Karla’s yummy creamy chicken and the kids had fun playing in the new pool in the backyard.  On Friday, Mark and I went searching for treasures on West Monroe’s Antique Alley.  We all went out to dinner at Outback on Friday night.  Even though we knew it was Wallace and Sue’s anniversary, we did not say a thing!  We acted like we forgot. 

On Saturday, we all left early under the pretense that we were going to take Ethan out on his first fishing trip.  Instead, we all met for a photo shoot!  We had some great portraits of all of us taken by Steve Walker, who attends Gary and Karla’s church.  His is a photographer and videographer and you can see more on his website www.walkervideo.net . Steve was great to work with!  He made sure that we even had some prints for Wallace and Sue for Saturday evening!!  How awesome is that?  Portraits taken in the morning and printed in the afternoon!  He selected several group photos.  Karla and I selected our 2 favorites and they were printed as 18 X 24s and mounted. 

Karla put together a surprise party for them featuring her delicious garlic, rosemary, and thyme pork tenderloin.  She invited a couple of Wallace and Sue’s good friends.  They were SO surprised when we presented them with the portraits!  We really did manage to surprise them!  We all had a great meal and great time!

Congratulations Sue and Wallace - We Love You!

Thanks Gary and Karla for all you did to make the celebration a success!

Ethan and his cousins, Emily, almost 14 and Brandon, 10.   Ethan had a blast with Brandon!  He loves having cousins to hang out with.

No more pictures, PLEASE! 

Mark and his Mom.

 

 

 

The Rattlesnakes ended the Sharks winning streak on Saturday May 31st.  It was a great meet - lots of action.  Ethan swam the freestyle, the backstroke, and swam the breaststroke for the first time.  He did great in the freestyle and backstroke, but disqualified in the breaststroke.  I never realized that the breaststroke was such a difficult stroke.  Most younger kids disqualify because they cannot get all the elements just right.  Here are some pics from the meet.  I was busy scribing results, so I did not get pictures from Ethan’s freestyle or breaststroke. 

Ethan and Dexter on the ready bench.

 The 7 and 8 years olds waiting for the back stroke.  Ethan is in the chair in front.  Alex Burchett is in the chair in the back.  I’m not sure who the child is in the middle. 

Ethan in the water, ready to go for the back stroke.

Check out that stroke! 

 

 

 

 

 

 

Some other kids taking off for the backstroke.  Look at that stretch!  They all do so good!  I don’t think I could have done this at 6 or 7 years old!

Our last regular season meet is on Saturday against Oak Ridge North.  We’re looking forward to a strong finish!  I’ll post more on the Sharks next Sunday or Monday.  To check out results from the Sharks season, check out www.nwal.org and select the “results” from the sidebar.

 

 

In their first away meet on May , the Sharks “chomped” on the Ponderosa Pirhanas.  It was an indoor meet - boy it was HOT inside the natatorium!  And LOUD!  What all the kids did great.  Ethan swam the freestyle and the backstroke.  He got personal best times with both.  His friend Zach swam a relay, freestyle, and backstroke.  This is Zach’s 3rd year swimming and his times have earned him an invitational meet bid.  Zach’s brother, Matt, is also an awesome swimmer.  He is trying to get an invitation to the Ponderosa meet - which is the best of the best in Northwest Houston. 

Its really a fun atmosphere.  Everyone brings their lawn chairs and tents and we all hang out for several hours.  Some of the kids really get into the spirit by decorating themselves with markers!  There is a lot of down time between events, so the kids brings games and other activities to keep busy.  And the parents read the paper, read, listen to music, and just talk.  It was a great meet and we’re really having fun!