Happy Birthday, William!

January 18, 2008 is the day that James William Mayes, V came into our family.  That's right, I said the 5th.  He is the 5th male in our family to carry this name.  The ironic thing is that not one of them went by the name James.  My great-grandfather went by the name JW.  My grandfather went by the name Jimmie.  My dad goes by the name Chip, because he is a chip off the old block.  My brother goes by the name Jimmie.  And now, my nephew goes by William.

Unfortunately, I wasn't able to see him right after he was born.  In fact, he was 3 months old before I saw him for the first time.  We were at my parents' house and it was Easter weekend.  I spent a lot of time holding this tiny little guy.  He was so sweet and adorable and I just couldn't get enough.  Of course we had our annual Easter celebration that weekend.  So we hid eggs for the older kids and boiled crawfish and spent most of the day Saturday outside.  William enjoyed sitting in his seat, enjoying the sunshine.

But as cute as he was sitting in his chair, nothing compares to the cuteness he was in his Easter outfit.









One of our vacations


We have been fortunate to be able to take several family vacations with my parents and with my brother and his family.  I always enjoy being around William and his big brother, Kash.  They definitely know how to liven the party. 










We have spent time together in Tennessee twice.  The last trip was to Nashville for Thanksgiving.  This is where William gave Tommy the name he now calls him.  When Tommy walked into the condo for the first time, he was on the phone with a friend who's name is Lee.  When Tommy talks to him he always calls him Lee Lee.  Apparently, William heard this conversation and started calling Tommy, Lee Lee.  So the name stuck and instead of Uncle Tommy, he is now Uncle Lee Lee.  I am called Aunt Jo Jo and John has gone from being JT to John John.  Apparently William likes us to have repeating names.



William loving on his cousin, John John
during our Nashville Vacation.



Trying on clothes from his
cousin John John.



Although we were unable to make it to his 1st birthday party, we did make it to his 2nd birthday party.  It was a small party with just family at their house in Monroe.  But he was very excited about his presents and of course the cake.

William is a very active little boy who loves to have fun.  He loves playing anything with a ball, loves the outdoors and has a gigantic sweet tooth.  He loves donuts, candy, snack cakes and especially birthday cake.  Whenever they have a cake for a special occasion, he likes to put candles in the cake and sing happy birthday.  He is very good at blowing the candles out.  I taught him a while back to give "knucks" and Uncle Lee Lee taught him to say "Boo-yah" when giving "Knucks".  He is full of energy and never stops playing.  But he also gives sweet hugs and kisses.  He talks very good for a 3 year old and tries to do everything Big Brother Kash does.  As he has gotten older, his hair has gotten very curly.  This makes for some very adorable pictures.




Looking like a certain famous
genius.  Hint: E=MC2



School Picture









After church one Sunday



This past weekend, we were able to celebrate William's 3rd birthday.  He invited several friends to a party at Jumping Jupiter in Bossier City.  We had a good time at the party and again later at home just playing with his new toys.



Happy Birthday, William Mayes.  We love you very much and look forward to spending many more vacations and birthdays with you!

Proud Momma!

Last Friday, John came home from school with his 3rd report card for the year.  His report cards are quite different than the ones other kids get.  While most report cards come home with the subject and the letter grade beside it, his are print outs on several sheets.  He doesn't get graded on subjects, but how well he has progressed toward each of his goals.  Since he started PPCD 2 years ago, I have seen quite a few of these, but they are still difficult for me to read and understand.  They have lots of numbers and symbols and I have to check the legend on the sheet to know what some of the symbols mean.

John has 5 goals on his IEP (Individual Education Plan).  Some of these goals have a part A and a part B so I consider it 8 goals.  Each goal has either an amount of time attached such as 8 seconds or 20 minutes, or it has a number such as 3 out of 5 trials.  Over the past 2.5 years, I've read his report card and mostly have seen that while he's making slow progress, he's not quite getting a full grasp on his goals.

This report card was different.  On 4 of his 8 goals, I saw the Symbol M next to it.  I did not need to look at the legend to know what this symbol means.  M = Mastered.  That's right, my boy has mastered 4 out of his 8 goals.  I was so surprised to see this.  When I met with his teacher a couple of months ago, she told me that he was doing well and that we may need to adjust his goals or even add some new ones.  But I never expected that he would do this well with them this early in the year.

These are the goals that John has mastered:

John will demonstrate sustained attention with toys, books, or activities for a minimum of 8 seconds.

John will localize environmental/classroom sounds varying by loudness level (ie, drum, triangle, cymbals, different speakers, loud/soft voice) by turning head towards sound source in a variety of positions in 3/5 trials.  a.  five feet    b. ten feet  (he has mastered this from five feet and is at 2/5 trials from ten feet)

John will participate in a variety of classroom activities in varying positions by hitting a switch or simple voice output device with:  a. Hand under hand assistance 5/5 trials  b. Guided elbow 2/5 trials.  (he has mastered both of these)

These are the goals he is still working on:

Once positioned correctly in his walker, John will walk for: a.  30 feet in 20 minutes by January 2011  b.  50 feet in 20 minutes by June 2011, in 3/5 trials for 5 consecutive weeks.  (On Part A he has achieved 2/5 trials and Part B has not yet been introduced.)

During meal times, John will assist with feeding by holding a utensil and bringing it to his mouth with decreasing prompts which fade from full physical to partial physical in 3/5 trials for 5 consecutive weeks by June 2011. (he has achieved 2/5 trials)

I must say something about each of the two goals above.  The goal towards walking he actually can do.  He does it at home with ease.  But when he's at school and trying to walk in the hallways with people walking by and so much to look at, he gets distracted and I'm sure doesn't do as well.  But when I take him outside here, he walks down the block and back.  The goal towards feeding himself is a biggie for him.  I have to confess that this is not something we work on at home.  I need to start working towards it more at meal times.  I'm just usually in a hurry to get him fed and I don't even think about it.  But that would be a huge accomplishment for him if he can learn to do this.

Words cannot express how proud I am of him for working so hard every single day to reach these accomplishments.  Every little thing he sets out to do is so hard for him.  I watch him everyday trying to do things like climb up on something, or pull up to stand and I think of how easy it is for me to do and how much he struggles to do those things.  But one thing I have also noticed is how persistent he is.  He doesn't give up.  If he doesn't do something the first try, he gets back up and tries again.  Sometimes all he needs is a little support or something to hold onto and then he's got it.  It brings him such joy when he finally gets something he's been working toward for so long and it makes me so proud.

And of course, no matter what goals he achieves, you can't take away that sweet smile.  No matter his circumstance or how hard he is working toward something, he always has a smile on his face.  There is nothing in the world I'd rather look at.  We all could learn something from him.  No matter how hard life gets or how tough our circumstance, there is always a reason to smile!

Ramblings

Now that the holidays are over and all of the sickness seems to be gone (fingers crossed), there are a few other things going on. 

Yesterday, John went back to school for the first day after Christmas Break.  But first he had a dentist appointment.  Taking him to the dentist has always been pleasant.  I really enjoy the dentist office we go to.  Kids Healthy Teeth is amazing, not just with kids in general, but they have always been amazingly patient with my difficult child.  When I say difficult, I don't mean he kicks and screams.  He is so excited that he squirms and wiggles and it takes me plus two other ladies to hold him still while the hygienist cleans his teeth.  And he is such an oral kid, that anytime something goes into his mouth, he clamps down.  He's gotten a couple of fingers and even the little mirror.  But they are so incredibly patient with him and they sing to him while they are working.  It makes the experience so much easier.

Yesterday we went in for his 6 month check up.  Other than his teeth being really clean and not needing much work done, they discovered that his two bottom teeth are loose.  You would think that is something I would have noticed before now, but I generally keep my fingers far away from his chompers.  The last time we were there, we discussed what we would do when he started losing teeth.  Tommy and I have been very concerned about him losing his teeth and swallowing them.  We want to make sure that doesn't happen.  So the dentist told me that she would be glad to either pull them for me, or she would show me how to do it.  I wasn't so excited about the second option.  So I asked yesterday if they were ready to come out.  After a quick x-ray with a really cool device that looks similar to a radar gun, they saw that one of the teeth had very little root left.  So she said she would pull it for me.  Instead of doing an injection (like I always had to have), they applied a gel to his tooth and gum area to numb it.  Then 3 of us held him down while the dentist used a fancy set of pliers and yanked it right out.  Usually I don't have a problem watching when he has little procedures or things like this done, but I just couldn't watch this time.  Something about the thought of it grossed me out.  But before I could even hold my breath, the tooth was out and he was laughing.  Silly boy.  He looks so cute with a missing tooth...

Today I had my 6 week (10 weeks later) follow up appointment after my pacemaker surgery.  It was just a quick and easy check up so my doctor could see how I am healing and if the device is working properly.  I was supposed to do this the beginning of December, but of course, I was sick.  The appointment was fine and everything showed no problems.  I have been feeling great and am finally feeling better than I have since June.  Then my doctor decides to spring on me that he is moving to Florida next month.  WHAT????  I can't believe this is happening to me, AGAIN.

In June, Dr, Kertesz,the doctor I had been seeing for 12 years, told me that she was moving to Ohio.  I was devastated by that news.  I absolutely love her and couldn't imagine seeing anyone else.  I tend to be a bit of a complicated patient when it comes to my heart rhythms and she was the only one that could halfway decode what was going on.  She knew me backwards and forwards and when she saw things that other doctors would get concerned over, she knew that it is just what I do.  She knew when to worry and when not to worry and she was very good at making me not worry.  She took excellent care of me and I never, ever had to wonder how I was doing as long as she was keeping an eye on me.

Needless to say, I had a melt down when I found out she was leaving.  I contemplated for a long time, traveling to Ohio once a year just so I could continue to see her.  I didn't know how I was going to find another doctor that I was as comfortable with.  So when I started having problems in October, I was forced to see Dr. Decker, one of the other doctors at TCH.  The first time I met him, I liked him.  He was very similar to Dr. Kertesz and I immediately felt comfortable with him.  He explains things great and he knew exactly what he wanted to do.  So I finally felt a calm and peace about Dr. Kertesz leaving and knew I would be fine with Dr. Decker.

Now I have to start over again.  There are only two more doctors in that particular specialty left at TCH and one of them isn't seeing new patients.  I don't know what I am going to do.  It is so frustrating to be so comfortable with someone who takes care of you, and then have to start all over.  But, I found a doctor I like once when I never thought I would, and I suppose I will again.

Other than those things, there are two big football games for us to watch.  If you know me, then you know how much I love sports.  Friday night, our favorite college football team (LSU) is playing in the Cotton Bowl again the Texas A&M Aggies.  Although you do find quite a few LSU fans here in Houston, we are still in Texas and are overwhelmingly outnumbered by Aggie fans.  I could insert a few Aggie jokes here, but I'll hold back.  So it will be a big game on Friday and I'm sure there will be a lot of bragging going on afterwards, no matter who wins.

The other big game, and probably the one we care most about, is the New Orleans Saints playoff game on Saturday.  It is their first play off game this season.  Last season they were the number 1 seed and got a first round bye as well as the privilege to play on their home field each week.  This year they are the number 5 seed and will have to win one more game if they are going to make it back to the Superbowl.  They also will be playing their games away from home.  This week they travel to Seattle to play the Seahawks, who has a 7-9 record.  I have two thoughts about that.  First it's just wrong that a team with a losing record can win their division and host a first round playoff game against a team with an 11-5 record.  Second, I never say that the Saints should win.  There are a lot of factors such as weather and a hostile environment that can affect the outcome of the game.  I just hope the Saints play to their ability and have a fairly easy time in this game.  If they win, the competition is only going to get tougher.

Looking Back

After our year ended so badly with all of us being sick and missing out on a trip that we prepared months for, I wanted to look back at 2010 and remember the things that went right.  I've been wanting to write this post for several days now, but haven't found the time.  It would have been better coming before the New Year started.  So here are some of the highlights from 2010.

At the beginning of the year, we were able to hire a Nanny to help out with John.  Her name is Shannon and she is a college student.  She began working with us after the first of the year, and she proved to be so valuable to us.  She provided us free time to do things we hadn't been able to do, as well as an extra set of hands when it came to taking care of John's needs.  She was like a part of our family and we enjoyed having her around.  Unfortunately for us, her time with us ended on New Year's Eve, when she left to start a new chapter of her life in Australia.  We will miss her greatly, but we wish her all the best.

For us long time New Orleans Saints fans, the year started off incredibly.  After losing the last 3 games of the regular season, the Saints marched through the playoffs, winning their first ever Super Bowl.  After suffering through 43 miserable seasons, it was amazing to us that they actually made it to the Super Bowl, but winning it was something we never could have imagined.  It was not only a great lift to the city of New Orleans, but to the entire state of Louisiana as well. All that's left to say about it now is Who Dat!!!  This is one of my favorite pictures from the night...

In February, I turned 32 years old.  Not a big milestone, but I am very grateful for another year of health.

In April, I was very excited to spend a weekend in Galveston with a few of my favorite girls.  It was so nice to have those two days to get away from the daily grind and just spend some relaxing time talking and hanging out.  We didn't do much exciting, but we spent the entire day Saturday lounging by the pool at the beach club associated with the house we rented.  That resulted in a bad sunburn for me, but it was just nice to have some peace and quiet and fun conversation with the girls.  Here is a picture of the beach club.

May was a big month for John Thomas.  He turned 5 years old on the 24.  I cannot believe my baby is 5.  It seems like just a few days ago, we were sitting by his side in the NICU.  Now he's five and very tall.  We celebrated with a quiet party at home with just family.  But the highlight of his birthday, was being able to spend a day in San Antonio, Texas at Morgan's Wonderland.  This is an ultra accessible park that was created by the vision of a father of a girl with special needs.  We had an amazing time there and it was so nice to be able to do so many things without his wheel chair being in the way.




Me and John when we first got to the park.





He was able to play on the playground...





He was a superhero for the day...



He worked a little on his walking...













He rode on the carousel...

and he rode the train!!!

Also in May, John had to say goodbye to the teachers he spent the last two years with.  These 3 ladies made his experience in PPCD a very positive one and taught him so much.  He fell in love with all three of them, and so did I.  It was very sad to say goodbye, but I'm very happy to keep in touch so they can watch him grow.



John with his teachers at his Valentine's Day Party!

In June, I went to have a heart procedure done to try and get rid of the irregular heart rhythm that I was having trouble with.  The procedure was unsuccessful so the next action was to change my medication to control it.  In order to do so, I had to spend time in the hospital while the dose was adjusted.  I ended up spending a total of 8 days there.  It was very odd to be there and to not feel bad.  So I used the time to catch up on a lot of reading.   I didn't complain about needing more time to myself after that.

Also in June, Tommy received a promotion at work.  This wasn't something he was looking for.  He was sought out for this position.  He officially started the new position July 1, and while it has proven to be a challenge for him, he has worked very hard to be successful at it.  I am very proud of him for all he does to be a good father and to provide for our family.

In October, it was determined by my doctors that while the medication I was taking was helping control the rhythm, it was causing some other problems that they did not like.  So on October 29, I went in for surgery.  I had my existing pacemaker replaced with a pacemaker/defibrillator.  I was only in the hospital for 1 night this time, but the recovery period was 6 weeks.  6 week of not driving and not picking up John.  I am so thankful to have such supportive parents.  My mom was able to come and stay most of that time to help with John.

Another big highlight for John was starting Kindergarten.  After two years of PPCD and going to school every day for 3 hours, John started Kindergarten and now goes to school all day every day.  It took him a while to adjust to the long day, but now he is a pro.  He loves going to school and seems to be doing very well.



First day of school with his teacher.

After being in school for a month or so, we decided to let him start riding the school bus to and from school.  He absolutely loves it.  I think his favorite part is getting on and off of the bus.

All of these things were fun and exciting.  But probably the most fun and most exciting was watching John begin to walk.  No he isn't walking on his own, but he has made some huge strides and is getting better all of the time.  He is very interested in being on his feet and moving around.  It's only a matter of time before he takes off on his own.

This is when we realized he was ready to learn.



Then he progressed to a bigger cart.

Then he got busy at therapy.

So even though the year ended kind of crummy, it wasn't all bad.  We had some really good times and some wonderful milestones.  Overall, 2010 was a huge success.  We are looking forward to so many new experiences in 2011.