Top 10

Yesterday, as we all know, was Valentine's Day.  I've always been the type that loved romance on Valentine's Day.  However, after 9.5 years of marriage and a child who is more than time consuming, we don't always get the chance to be romantic.  In the past we have had some good Valentines and some not so good.  So this year we decided on a quiet evening at home.  We planned to put John to bed and then order take out and just enjoy the quiet while he slept.  Because it was a simple celebration, I decided to do a simple thing.  Instead of buying him a card this year, I made him one.  It wasn't fancy, especially since I'm the least creative person in the world.  But it told him exactly how I felt.  The front simply said I love you and on the inside I listed the top 10 reasons why I love him.  I thought that I should share with you why I love him so much.

10.  He isn't afraid to watch Chick-Flicks with me.  We don't get a chance to get to movies much any more, but the invention of the Red Box has made it cheap and easy to rent movies at home.  Often times we'll wait until John goes to bed and the nurse gets here for the night, and then we cuddle up in the bed to watch the movie.  While we both enjoy a good action or dramatic movie from time to time, more often than not I find us watching Chick-Flicks together.  Many times he falls asleep during the movie, but sometimes, he enjoys them just as much as I do.  But the fact that he'll sit down with me to watch these kinds of movies tells me that he loves spending time with me.

9.  He cries every time we watch Extreme Home Makeover.  He is probably going to kill me for sharing this one.  There aren't very many TV shows that we both enjoy.  But since this show came on the air, we have both enjoyed watching this.  I think the initial attraction for him was the home improvement project.  But as the years have gone by, the show has become more emotional.  And I often catch him wiping a tear from his eyes, although he sometimes denies it.  But I love the fact that he's not afraid to show his emotion.

8.  He takes care of things around the house, so I don't have to. He always takes pride in taking care of our home.  From paying the bills, to cutting the grass, to doing little projects around the house, he does it all.  He is a pretty handy guy for having no type of training.  He makes sure all of John's medical equipment is kept clean and he orders all of his supplies each month.  If I wanted to do these things, I couldn't because I don't know how.  He does such a good job at all of these things, and it's all so I don't have to worry about it.  I love having my very own handy man.

7.  He can pick out clothes for me better than I can for myself.  Now this one is a little more embarrassing for me.  I hear so many people talk about how men can't pick out clothes for themselves and they would never let them pick out clothes for them.  Women complain that men have no style and should have no say in anything to do with design.  But my husband is quite opposite.  He has a very good sense of style and he has a very specific sense of style.  He knows what he likes and what he doesn't like.  He dresses very sharp.  But more than that, he dresses me pretty well too.  Several times he has gone and picked out an outfit for me as a gift.  Never has he brought something home that I didn't like or that didn't look good.  When we go shopping, I often times bring him along and when I try on clothes, I always get his opinion.  I know that if he likes it, then it will look good.  I love wearing clothes that he likes.

6.  We can be very silly together.  I think all couples have their inside jokes.  We are no exception.  We both like to burst into song, many times to get John laughing.  But the funny thing about it is that neither of us have a great singing voice.  It sounds terrible, but our son smiles and we smile too.  I love that I can be my complete self around him.

5.  He makes me laugh I think in life it's very important to find someone who makes you laugh.  A great sense of humor is one of the top things I like in a person.  Tommy has this.  Sometimes he says things that I think is so ridiculous but it ends up making me laugh.  Even in tough times, he can find something to say that makes me laugh.  I love his sense of humor.

4.  He has made it possible for me to stay home with our son.  When we decided to have children, we concluded that it would be good for me to stay home for at least a couple of years.  That turned out to be a great decision after John was born with special needs.  Tommy has a good job and works very hard at it and this has allowed me to stay home with our son for the last 5.5 years.  I cannot express how much this means to me.  The time I have had with our son has been priceless and I wouldn't trade it for anything.  I've been able to be involved in every aspect of his growth and development.  I have loved watching his progress and seeing him develop a personality.  I have met some amazing people who have been apart of this development, all because I was able to stay home with him.  I will forever be grateful for this opportunity.  I love him for that.

3.  He works hard to provide for our family.  This kind of ties into number 4.  But other than allowing me to stay home with John, he has provided things and memories for us that I will never forget.  He works very hard at his job.  His work ethic is something that was instilled in him by his father and his grandfather.  He takes pride in his work and wants to make sure he puts 100% into everything he does.  He has received a few MVP awards at work for this reason.  And even though I sometimes complain about the long hours, it's because I miss him when he's not home.  I look forward to the weekend each week so we can all three be together, but I know that in between weekends, he is giving his best.  I love his work ethic.

2.  He is an amazing father.  Before John came along, Tommy didn't have much to do with other kids.  Toddlers and older kids were OK, but he didn't go near babies.  I asked him what he was going to do when we had children, and he said it would be different when they were his own.  He was right.  From the moment our son was born, he has been a hands on dad.  He changes diapers, he feeds him (although not always as often as I'd like) and he helps with bath time every night.  He also is a great playmate for John.  He gets on the floor and lets John crawl all over him.  And he can make that boy laugh like no one else.  The best sounds in the world to me are hearing the two of them playing and hearing happy squeals come from our son.  Of course John is happy when his daddy comes home from work, but Daddy may be even more happy to see him.  Those two are buddies, two peas in a pod.  Every time I see them together, I fall in love with him all over.

1.  He makes me feel safe.  All of the reasons I listed above, culminate into this last one.  All of these things that he does for me and for our family makes me feel safe.  I know that everything is taken care of and no matter what, everything will be OK because we have each other.  When he is away on a trip, it takes me awhile to fall asleep.  But when he's home, next to me in bed, I have no trouble.  I know everything is going to be OK, because he is here.  I love having him by my side.

98 Days and counting

Our story doesn't just begin the day our son, John Thomas Hitt, was born.  You actually have to go back a long way before that, to the day I (mom) was born.  You see, I was born with a congenital heart defect.  This defect is called Transposition of the Great Arteries and it involves the two major vessels of the heart being switched and connected to the wrong place.  After having surgeries as an infant to correct this defect, I went on to have a completely normal childhood.  But sometime in my twenties, I began to have a few difficulties.  So when Tommy (dad) and I decided we were ready to start a family, there were concerns about whether my heart would be able to sustain a pregnancy.  My doctor in Houston suggested that we travel to the Mayo Clinic in Minnesota to meet with a doctor there who has had experience with heart patients who get pregnant.  After being seen by her and many tests being done, it was concluded that I would have a very good chance of my heart sustaining a pregnancy.  That was the good news.  My doctor back in Houston decided that to give my heart the best chance of keeping up with the extra blood volume I would have, I needed a pacemaker.  So in August of 2003, I had my first pacemaker implanted.  After I recovered from that surgery, we were ready to start our family.





Right after he was born in an oxygen hood.

A little over a year later, I found out I was pregnant.  While we were both excited, we both still knew in the back of our minds that not only was there a chance that I would have complications, but there was also a chance that the baby would have some kind of heart defect.  I was followed regular by a high risk OB as well as frequent visits with my cardiologist.  At the 22 week mark, we were able to have a fetal echo cardiogram.  This would look specifically at the baby's heart and determine if there were any major defects.  We were very encouraged when the doctor told us the baby's heart looked completely normal.  The rest of the pregnancy was smooth sailing with no complications.  Around the 30 week mark, I began seeing my OB once a week.  He was concerned with the size of the baby.  He didn't seem to be growing like he should.  In fact, he began to drop percentage wise on the charts.  So at 33 weeks, my doctor thought it was best to go ahead and deliver him, because once he was born, we would be able to help him gain weight quicker.  So on May 24, 2005, we checked into St. Luke's Hospital where I delivered our baby boy by C-section.  He was born at 9:14 am weighing 3lbs 5oz and 17 inches long.




This was taken in the first 6 days.

We knew that because of his size, he would be spending some time in the NICU at Texas Children's Hospital.  We were told the magic number for him to come home was 5lbs.  So in our mind, we just needed to get him to 5lbs and we were golden.  We were not prepared for what was to come.

He spent his first 6 days in the level 3 nursery.  Level 3 is for the most critical babies.  Many of these babies are on ventilators or have major life threatening injuries.  But John wasn't really critical.  He required very little oxygen and never needed a breathing tube.  During most of those 6 days, I was still in the hospital recovering, so it was convenient to get over and see him.




Our first family photo.
 He screamed the first time I held him.

 But after I was discharged it became more difficult and draining.  He was then moved to the level 2 nursery, where babies were less critical and didn't require such acute care.   There was a long adjustment period.  There were doctors and nurses everywhere and we didn't know who was in charge of our baby.  But once we got the hang of the whole resident and attending physician concept, it was just a matter of waiting.  Or so we thought.

An MRI was done to look at the development of his brain and that concluded that while it showed his brain was premature in development, there was nothing abnormal.  A bronchoscopy was also done which showed that his trachea was a little floppy which explained why he had difficulty breathing in certain positions.  We were continuously told that when he got bigger, he would outgrow these things.  So we continued to wait.   During this time, John was also having to learn how to suck.  This was not easy.  He had a great Occupational therapist who worked with him every single day.  She finally got him to use his sucking reflex, but getting him to drink from a bottle was a different matter.  We worked and worked and would get so excited when he would drink a whole ounce.  We used a different kind of bottle trying everything we could.  He required a feeding tube through his nose to keep him fed.



This was the funny bottle that
 he first learned to drink from.

I spent all day, every day at the hospital, sitting with John.   Tommy would come in the evenings and spend an hour or so there before coming home each night.  It was exhausting.  But after 2 months passed and he still required oxygen, we knew something wasn't right.

The doctor was considering sending John home still on oxygen and with the feeding tube.  I wasn't concerned about the oxygen, but the tube scared me.  It came out frequently and had to be put back in.  It always made him gag and cry.  I was scared to death that I wouldn't be able to do that.  The doctors decided to run a few more tests to try and figure out a cause for his continued need for oxygen.  It was determined that he was retaining carbon dioxide.  This led to the decision that he needed to have a tracheotomy.  This news brought about so many tears.  I thought I was losing my baby as I knew him.  But we were told that it would only be temporary.  Once he "got bigger" and was able to expel the CO2, he would be able to have the trach removed.  It was estimated that this would take 6 months to a year. 




  The first time I saw him after surgery.

On July 28, 2005, John went into surgery to get his trach.  They also decided to put in a more permanent feeding tube in his stomach.  This would only need to be changed once a month and would make feeding him a lot easier.  So began the wait.  I can't remember now how long we waited, but it seemed like forever.  My mom and dad had come in to wait with us.  My mom and I got very emotional when we had to hand him off to the nurses for surgery.  It was a very difficult day.  But finally, we saw the doctor, who told us that the surgery went well and they were getting him ready to move him to the level 3 nursery.  We were told it would be a while before we could see him, so we decided to go and get dinner.  When we came back to the hospital, we were finally able to go in and see him.  I was not prepared for what I saw.  He had a ventilator attached to his trach.  In order to let the stoma in his neck heal, he had to be sedated and paralyzed.  They gave him a drug to keep him from moving at all, so that the site could heal.  He had to stay that way for a week, and that was the hardest week of my life.  I couldn't hold him and I couldn't even touch him.  All I could do was sit and look at him.  He was being pumped full of fluid but because he couldn't move, the fluid was causing his body to swell, including his head.  It was all so scary. 

After the first week, his trach site had healed nicely and they began to slowly wake him up.  I was so happy when I was finally able to hold him again and when all of the fluid finally worked its way out of his body.  But now we had to learn to take care of him.  We spent the next month watching and learning how to do trach care and how to suction as well as how to use his new feeding tube.  For a short time he was put in a private room, which was nice.  But one day, the baby in the room next to us passed away and I heard the loud screams and cries that came from his mother.  That tore my heart apart.  I was so thankful that my son was never really that sick, and it helped me realize that no matter how bad we thought we had it, it could have been worse. 




Trach Collar

John transferred from the ventilator, to something called a trach collar, to what's called an HME and finally to the one way valve.  It was so satisfying to see him progress to where he needed less and less support.  He still required just a small amount of oxygen, but at least we knew he was expelling the carbon dioxide.

Finally the day had come.  We had learned all there was to know about how to clean the trach site and how to change the trach.  We learned how to suction and how to use the new feeding tube.  We were given a test on correctly packing his travel bag that would have to go with us everywhere we go.  John had one final test to pass before they would discharge him.  This was the car seat test.  He had to sit in his car seat for 1 solid hour without his oxygen saturation dropping below a certain number.  We were able to put his seat in his stroller during this test and stroll him around to visit all of his nurses and friends in the NICU.  He passed the test with flying colors and we were finally given a discharge date.

For us, August 29, 2005 will always be remembered for 2 reasons.  This was the day that Hurricane Katrina made landfall in south Louisiana and changed the lives of so many people.  But it was also the day John Thomas Hitt was finally discharged from the hospital.  It was his 98th day in the NICU and we were so happy to finally bring him home.  As we were leaving, one of the nurses told me to take him home and keep him there.  In other words, take care of him so he doesn't have to come back to stay. 




Wasn't so happy about seeing the sunshine.

John came home in a limousine of sorts.  Hospital policy said that he had to be transported home in an ambulance, just in case something happened on the way.  Since we lived an hour from the hospital, it was probably a good idea.  So Tommy rode in the Ambulance with him, and I followed behind in the car.  That was the first of a few ambulance rides he would take in his life, but probably the only time we were happy for him to be in an ambulance.

We then had to get use to life with nurses in our house around the clock.  But I found that even with the nurse there during the day, I still wanted to do all of the care giving.  So after the first week, we decided to discontinue the day time nurse and just have a nurse at night.  We were able to get a good night's sleep so I could spend the day loving on my baby boy.  Life as we knew it was over, but we were so happy to finally have him home.




His first smile.

Here we are, almost 13 years later.  What we thought would be 6months to 1 year of having the trach, turned into 10 years.  At 4 months old, he began to have sleep apnea.  We thought it was something that he would outgrow, but he never did fully.  That is the one reason he kept the trach for so long.  On April 22, 2015, John was admitted to Texas Children's to have his trach removed once and for all.  Everything went perfectly as planned, and the next day, April 23, 2015, he became a member of the naked neck club.  The trach was removed and he hasn't looked back.  We have not missed that thing for one single day since.


He continues to be developmentally delayed in all areas of development.  He has a hearing and vision impairment.  But even with all that he's been through, you will never find a happier boy.  He loves everyone and everything and lives life to the fullest every single day.

It has been and continues to be a long journey, but I wouldn't trade a single minute that I've had with my baby.  Tommy often reminds me that he isn't a baby any more, but he will always be my baby.

This is a journey we will be on for the rest of our lives, but it is one that is worth taking.  Every time that he gives me his sweet hugs and kisses just reminds me why we continue to do this everyday.  Our life isn't easy, but it could be worse.  I don't know why God chose us to be the parents of this little guy, but we are glad he did.  I know he has a purpose for us and for John that is far greater than anything we can imagine.  I can't wait to see what that is.  It must be amazing.  So I'll close with a few more pictures from his first year.  Thank you for reading this and thank you to everyone who has gone on this journey with us.  We have an amazing support system of family and friends who have helped keep us sane all of this time.  They have loved us unconditionally and we will forever be grateful for all they have done.



Sleeping in his very own bed.



One of his many funny faces.



First Thanksgiving

Geaux Tigers!



Family Photo

Birthdays Everywhere!

This is the first of two times during the year where our family celebrates several birthdays.  It starts on January 18, with my nephew William.  I've already told you how special he is and how much I love him.  The next birthday was my mother's on January 27.  I didn't get a chance to tell you how special she is to me.  So I wanted to take some time to do so.

January 27, 1950 is when Carol Ann Cole came into this world.  Yes, I just put the date and made it easy to figure out her age, but she is not shy to tell you how old she is.  She is proud of her age.  She is the only daughter of Bill and Hannah Cole.  And she is the baby sister (by 18 years) to brother Bob Cole.  She has been married to my dad, Chip Mayes, for almost 39 years.  But probably her most important and most successful role has been mother to Jimmie, Jason and myself.  And now, she is the proud grandmother to Kash, John Thomas, William and will welcome her 4th grandchild sometime in August.

I cannot tell you how much my mother has meant to me all of these years.  Of course I was the typical child who thought my mother didn't know what I she was talking about.  But now that I'm a wife and mother, I find myself doing and saying the same things as her.  And even though I don't often tell her, she is right most of the time.

Mom has always been supportive in everything that we have done.  She has sacrificed so much for us.  We didn't always get everything that we wanted, but we always had everything we needed.  She drove for field trips and summer softball and baseball tournaments.  She never missed a softball, baseball or football game that we participated in nor did she ever miss a band function that we were a part of.  Even in college, she and dad went to many of Jimmie's baseball games, even though his school was 5 hours away and they went to almost every home football game that my college band was at.

She has instilled in us family values and a faith in God that we will carry over to our children.  I remember her telling me that she would never lie to me, and she never did.  She was always upfront and honest, even though sometimes the truth hurt.  She never made us guess how much she loves us.

So to my wonderful mother, I say Happy 61st birthday!  I wish you many more years of happiness!



Christmas 2009

February 3, 1978 is the day that I came into this world.  I was born in Kinder, Louisiana at Allen Parish Hospital.  Shortly after I was born, the doctor's noticed something wasn't quite right.  So I was sent by ambulance to Lake Charles, where I was diagnosed with a heart defect.  I was then flown to Ocshner Hospital in New Orleans where my first surgery was performed within the first 24 hours.  So already, I was a trouble maker.  At 13 months, I went through my second heart surgery to repair the defect.  The doctor must have done an excellent job, because for the rest of my childhood, I lived an ordinary life and did all of the things other kids my age did, including playing sports.

Growing up, I remember having birthday parties at McDonalds, Fontenot's Roller Rink, and Petro Bowl.  They were always fun times spent with a lot of good friends.

My most memorable birthday wasn't because of a fun party.  It was my 22nd birthday and it was the day my grandmother passed away.  I was student teaching that year and had a great day at school.  I got lots of birthday wishes from my kids and a wonderful bouquet of roses from Tommy, who was my boyfriend at the time.  I came home to find out the bad news.  I remember being sad at the time because my birthday would always be tainted with that memory.  But then my grandmother's sister told me that day how special it was that every year for my birthday, I could think of my grandmother and all of the good times we had.  And that is what I have tried to do.  So today, on my birthday I'd like to say, I miss you, Mom.  I look forward to seeing you again someday.

Today has been a pretty good day so far.  I woke up to sweet birthday hugs from my baby boy.  Tommy left me a very nice card along with one of my favorite chocolate bars.  I received lots of birthday wishes from my friends and I got to enjoy a nice lunch with my favorite guy.  I'm looking forward to John being home soon so I can get some snuggle time in.

February 5, 1999 is the day that God gave us Jennifer LeighAnn Hitt.  She is my one and only niece.  She is sweet and beautiful and one of the kindest little girls I have ever met.

2 days after my 21st birthday, I got a call at 5:00 in the morning telling me that she had been born.  I was so excited and couldn't wait to meet her.  Fortunately it was a Friday so I was able to go home for the weekend.  The only problem was my car was in the shop and I needed a ride to get there.  So I bummed a ride from Natchitoches to Leesville with my friend, Cassie, and then my friend Dena met me in Leesville and drove me to Kinder.  I finally got to the hospital with my mom and was blown away with how small and beautiful she was.  There was an instant bond between us and it has been there ever since.



John wanting his cousin's
attention.

 When Jenn was little she started calling me Jo Jo, but many times it came out as Do Do.  After a while it turned into Aunt Jo and that is what she still calls me today.  When you would ask her who her buddy was, she would reply "Jo Jo's buddy."

I have watched her grow up and in two days she will turn 12 years old.  I cannot believe it's been twelve years.  She is an amazing young girl with many talents and a great big heart.  She loves unconditionally and is the best big cousin to John.  Those two are peas in a pod.  Not only does she get excited to see him, but he lights up when she walks in the room.  He treats her just like a good little brother would, pulling her hair one second and giving her hugs and kisses the next.





I love this little girl so much and I look forward to watching her grow into a beautiful woman.  Happy 12th birthday, Jenn Jenn!




With her mother!





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.