Time heals all wounds

Now that we are a couple of months into the school year and have had our first grading period, I thought it was time to update you guys on what's going on.  When I last left you, the classes had just been divided into two and they were waiting to hire a new teacher for the second class.

They have since hired a new teacher, although I don't know anything about her.  But John seems to have settled in quite nicely with his original teacher.  We had his ARD a couple of weeks ago, and a lot of good things were said and discussed.  I feel like we have a good plan in place and hopefully I will start to see lots of good things over the next few months.

Now you all know how much I didn't want John to change schools.  I was really upset about it and had my doubts.  Especially after the first couple of weeks, I still had my doubts.  But I kept saying that I was praying that God had great things in store for John.

Guess what.  It turns out that just maybe, I was the person God was trying to change through this.  Maybe it's me that he has big plans for.  I had an experience today, that I'll tell you about in a minute, that has led me to this conclusion.  I am not a natural born leader.  I do not have the "take charge" instinct that some people, like my husband, has.  I would rather sit back and let someone else lead, and then just do what I'm asked to do.  I'm really good at taking instructions and going with it, although my mother would probably disagree.  But that is just my personality.  However, thinking back on the events of the last several months I've realized a few things.

When I was told that he was being rezoned to a new school, that just awakened something in me that I didn't know existed.  I am not a confrontational person at all, and because of that I tend to let people get their way and kind of take advantage of me.  Well not this time.  I took the situation head on from the beginning, and really was fairly calm about it.  But that was only the beginning.  After the school year started and I felt things weren't going quite the way they should be, I didn't just sit back and let it happen like I might have in the past.  I first emailed the principal, and when I didn't get the response I liked, I contacted someone at the district.  None of that is typical of me.  But we all know that moms will do a lot when it comes to taking care of their kids.

And what did being so vocal about it get me?  I guess since the teachers and school knew that I was very involved in my child's education, they thought I would be the perfect parent to be in charge of starting a Special Buddies program at our school.  Being a new school, I didn't know if or when we would be able to start the program.  But once our counselor got wind of it and began asking around, I was the person who was recommended to do so.  This goes back to not being a leader.  I don't normally like to be in charge of things.  I will help out with whatever I'm asked to, but I don't like to organize and be in charge.  Which brings me to what happened today.

I agreed to be the parent liason for the Special Buddies at the school and Mrs. Leung (the counselor) and I set a date and chose an activity for our first event.  But there were still a few things I was unsure about.  So today I went to meet with Mrs. Leung to ask some questions and get a better idea of what to expect.  We had a great meetings and I got a lot of questions answered.  We discussed what we wanted to do at our first event and how we wanted to put it together.  And then I started to feel excited.  This was kind of unexpected.  I had been feeling dread and anxiety over having to come up with something fun for the kids.  I'm not a creative person so it is hard for me to come up with good ideas.  But as we were talking this morning and things were starting to come together, I actually started to get excited about it.  It makes me happy when John gets to interact with regular ed kids.  It's so important to me that not only does he get that interaction, but that the other kids get to interact with him.  I want kids to learn that not everyone is the same, but that they all matter just as much.  Hopefully if we can train our kids to think this way, we can get a handle on this bullying problem that is out there.

And if coordinating Special Buddies isn't enough, I volunteered to help start a Young Athlete's program at his school.  This is sort of an extension of the Special Olympics program and John got to take part in it last year at OKE.  It was a very fun day for the kids and parents, and then after, they had a parade around the school for the participants where all of the students and staff in the school lined the halls and cheered for our kids as they walked by.  That was my favorite part and made me want to get this started at Shafer as well.  We are probably going to wait until next school year to implement this program, but Mrs. Leung said she is going to go to OKE's program this year to get a good idea of how it works.  I told her I would go with her and help her bring the program to our school. 

This morning was the first time that I really felt happy about him being in school at Shafer Elementary.  I finally feel my heart begin to heal, because it truly was broken when he had to change schools.  I finally see that maybe God put us in this situation not for John's sake, but for mine.  He has forced me to come out of my comfort zone, and as a result, I feel like I'm growing as a person.  I don't think this means I'm going to seek out a leadership role or automatically become better at confrontation, but at least now I know that I have it in me if I need it.  I think he still has great things planned for John, but I have discovered that he still has great things planned for me.  And I am very hankful for him teaching me this.  It turns out, all I needed was a little push, and my heart just needed a little time.

Hurricane Preparedness for Yankees

This is not my normal blog post about life with my sweet son.  That's normally what I blog about. But today, after watching the Today show's ridiculous coverage of Hurricane Sandy, I felt compelled to use my blog to give advice to my northern friends who may have never experienced a hurricane before.  So, for all of my Yankee friends, here are some steps from this Dixie Darling, for riding out the storm.

1.  If you live in a high rise, get out.  You will not enjoy being in the penthouse suite when the winds start to blow and that thing starts to sway.  Find someone with a ground floor apartment, or better yet a house in case that thing topples over.  You don't want to be at the bottom of that.

2.  I know you have a lot of bridges and tunnels around there.  Keep away from them.  They will probably be closed anyway, but even if they aren't, don't be a daredevil and try to cross a bridge in hurricane force winds.  In fact, stay off of the roads, period.

3.  If you don't have storm shutters on your house, use ply wood and board up the windows.  If you don't have time or just can't get to the hardware store, then masking tape will work just find.  Just tape strips across your windows from corner to corner in an "X".  It won't keep the windows from breaking, but it should keep them from shattering.  That's what we like to call redneck engineering.

4.  Make sure you stock up on plenty of drinking water, or soda or juice or beer or wine or whatever you use to hydrate.  Also, have plenty of your favorite snack foods on hand and maybe even some bread and peanut butter, in case you are without electricity for a while and can't cook anything.  Forget keeping things cold.  If you lose power, even if you never open your freezer door (which is impossible to do) it will not stay cold for long and you will lose the food in there.

5.  Make sure you have plenty of flashlights and batteries for them.  Also, get a battery operated radio and or TV so you can hear the news media tell you when it's safe to come out again.  They are, after all, the bravest of us all.  They will ride out the storm and stay on the air for as long as they have power and a signal.  They are the real heroes at a time like this.

6.  While you still have water, fill up all of your bathtubs.  If you lose power and water, you can use the water in your bathtub to flush your toilets with.  Please, do not use kitty litter to dispose of your waste as was suggested on the Today Show this morning.  That is just gross.

7.  Some media outlets will tell you to shelter in place, but a term we like to use down here in the south is "Hunker Down."  This means simply, stay inside.  Stay off the roads, stay in your house, protect your pets and plants, board or tape your windows, grab all of your snack foods and beverages, and pull out all of your board games.  Build a fort with your kids ( this is where the flashlights will come in handy).  Turn on your battery powered TV or radio and listen for the all clear signal.  Another term we use for this is Hurricane Party.

Now I know many of you have never experienced anything like this before.  It can really be scary. This led the Today Show to call in a psychology expert to tell you how to handle your kids and their fear or anxiety as they watch you prepare.  I can give you the same advice and I don't have a Ph.D. behind my name.  I can tell you exactly how your kids are feeling and how to handle it.  They are thinking that this is the most exciting thing they have ever experienced.  School is cancelled and this is going to be a party.  There is no fear or anxiety at all.   Trust me.  I've been there.

After the storm is over, you are going to want a friend that has a boat in his front yard or at least someone with a truck that has big mud tires on it.  What?  No one up there has anything like that?  Oh well.  You will be sorry.  You are going to need it to rescue folks on your street after the 5-7 inches of rain you are expecting.  I mean, with water that high, you might even need a helicopter to pick you up off of your roof tops.  And if the high water stays around for a few days and you need something for your kids to do to keep from getting bored, check out the episode of Duck Dynasty where they teach you to build a Redneck Water Park.  They have some great ideas.

If you are the mayor of Atlantic city, where the storm is expected to make landfall, I would call up the mayor of Biloxi, Mississippi to get advice on what to do with your casinos.  That's your main source of revenue and you are going to need to get them back up and running as soon as you can.

In all seriousness, hurricanes are dangerous and you should take all precautions to keep yourselves and your family safe.

And so you don't feel like you are the only ones in the country preparing for severe weather, my son and I are wearing our sweatshirts today to stay warm in these 50 degree temperatures.  Of course, around here, you practically need a sweatshirt just to go to the grocery store and walk through the cold section.

A Little More Like Italy

If you read the first post on this blog, it explains why my blog is called "Little Postcards From Holland."  I recited a story written by a parent of a special needs child.  It explains how having a baby with special needs is a little like planning to take a wonderful vacation to Italy, and instead, ending up in Holland.  If you haven't seen that post, you can click to see it here. 

When  I got pregnant, I had all kinds of ideas of things I wanted my child to experience.  And when I found out we were having a boy, I couldn't wait to teach him how to play sports.  If you know me at all, you know about my love and passion for all things sports.  I started playing softball at a young age, and never looked back.  Even when I was younger, I played football in the back yard with my brothers.  I tried basketball, but it wasn't my thing.  But I was in love with sports.  I loved every part of it, especially the competiveness.  When I got older, I decided to make sports my profession.  So the idea of being able to share this passion with my son was very exciting to me.

It didn't occur to me right away when John was born and we found out that he wasn't typical.  In fact, it took a very long time for Tommy and I to accept the fact, that he would never be typical.  We kept telling ourselves that he just needed to get bigger and maybe get a little therapy help, but one day he would catch up with all of his friends.  When we finally came to realize that he would never be a typical child, one of the things I thought about was not being able to teach him to play.  But with everything going on and all of the issues we were learning to deal with, I still didn't think about it much.  But when his friends started getting involved in soccer and basketball and even baseball, it broke my heart to think I would not be able to watch my son do these things.

Then a couple of year ago, Tommy came across something about a baseball league designed for kids that have special needs.  It's called Challenger Baseball and they have leagues all around the country.  So we looked into something like that here and found that Houston has two leagues.  One is in the West University area, which is not near us, but there is also one in Katy.  So we started to watch the website to find out when we could sign John up for it.  We ended up missing the spring season, but did manage to get him in to play this fall.  This past Sunday was his first game.

I knew that the basic concept was that all kids on the team would get a chance to bat and then they would switch sides.  I didn't know what would be going on in the field while the other team was batting.  Each kid has a buddy to help them and while they are in the field, all of the kids and their buddies stand around and toss a ball to each other.  So they are staying active while the other kids are hitting and running the bases.  Also, when the kids come to bat, one of the adults toss the ball to them from just a few feet away so the kids have a better chance to hit.  We elected to use a tee for John to hit off of because I didn't know how easy it would be for him to try and swing a bat while sitting in his chair.  Of course I helped him hold it and swing, but his favorite part was running the bases.

Some of our good friends came out to watch him play.  Tommy had asked her to take pictures for us, so the whole family came out.  Their daughter, Mia, is the same age as John.  When they got there, Mia came to say hi to John, and one of the ladies that runs the league asked Mia if she wanted to be John's buddy for the day.  She agreed and even got to wear a buddy t-shirt.  So it was me, John and Mia out on the field. 

We all had a blast, even though it was a little chilly.  John got a cool uniform and his team is the Cubs.  His number is 4.  In our family growing up, my brother and I would always sign cards to our parents or to each other with our name and our uniform number.  So I think I want to start that tradition with John.  Also, when I was younger, playing softball, I had a coach who decided to give every girl on the team a nickname.  The nickname was one that belonged to someone who had played professional baseball at one time.  The name I was given was Scooter, which was the nickname of Phil Rizzuto who played shortstop for the Yankees from 1941-1956.  I think it's time to pass that name down to John.

So after being in "Holland" for the past 7 1/2 years, getting to share this experience with John maybe feels a little more like that Italian vacation I was expecting when I got pregnant.  I know it's not exactly what I was hoping for, but watching him have so much fun makes up for that.

Ready to play
 

Is this how you catch a ball?

It sure tastes good

John and Mia

playing catch with Mia

John's first hit

Running the bases

Scored his first run

Family picture

Laughing at Mia

With dad after the game

Big Leaguer

I love having these things laying around the house

Proud to be a Cubbie

Start to a New Year

After everything we went through this summer trying to keep JT at the school he was at last year, and then finding out he would indeed go to a new school, the much anticipated start to the year was upon us.  I had decided that, since I didn't have any other choice, I would give this new school an honest try and continued to pray that God would have great things in store for John, that this school, could maybe be even better than before.  I'm sure God does have great things in store for John still, but the year didn't start off too promising.

We went to the Life Skills orientation/meet the teacher night the week before school started.  That is where the uncertainty started.  We found out that the one life skills class they were starting at Shafer would have 12 students in it.  That is A LOT!  There would be a teacher and 3 paraprofessionals for a student/teacher ratio of 3:1.  Last year, the ratio in his class was 2:1.  That raised red flags for me immediately.  Then I realized there would be 5 students in his class in wheel chairs.  With only 4 adults, how were they going to push all of the chairs plus hold on to the kids who walk.  You could tell that the teacher was very overwhelmed.  The other concerning part is that there is only 1 nurse on campus.  Most campuses have a nurse and an assistant, but this campus, with 12 life skills students only had 1 nurse.

Finally, the first day of school came and went and from what I could tell, it went fine.  Then came the second day.  All seemed well.  When he came home from school, I began going through his back pack and cleaning out his lunch box.  When I opened the top of the lunch box, I noticed his snack was still in there.  The yogurt and drink were gone, but the snack was there.  I thought it was odd that he didn't get a snack that day.  Then I opened the bottom, where I keep his lunch and saw the container I put his lunch in, and it was still full.  My boy was not given lunch that day.  That sent me into a frenzie.  Well, not really, because I don't usually get frenzied, but I was upset about it.  I knew I couldn't tell Tommy right away, because he would come unglued, and I needed to find out what happened before I told him.  I tried calling the school, but they must have been gone for the day.  So I sent an email, hoping she would get it that day and call me.  After thinking about it a little longer, I decided to call her on her cell phone.  She had given me her number before school started and told me I could call her any time.  She was completely surprised when I told her that he hadn't eaten lunch.  Apparently what happened was the Occupational Therapist had come to work with John on his feeding and decided to give him lunch.  The teacher just assumed she had given him all of his lunch, but she only gave him his yogurt. No one followed up to see if he had eaten everything.  Also, they apparently just skipped snack time that day too, otherwise they would have noticed it when they gave him his snack.  She appologized and assured me it wouldn't happen again.  I just hate to think of my boy being hungry for lunch, but not being able to tell anyone.  That thought breaks my heart.

After stewing over it for a week, I decided, after being advised by a friend, that I needed to make sure the Principal knew about it.  So I sent her an email, telling her about him not being fed, and also to express my concerns about the class size and that they were not having their basic needs met.  If they can't meet the students' basic needs, they can't possibly meet their educational needs.  She responded rather quickly that they were working on opening a new class in the next few weeks.  In my experience, nothing like that works quickly.  So I decided to contact someone from the district to find out what was going on.

I sent an email to the Special Education Instructional Officer for Elementary Programs.  I included the email I had sent to the Principal, as well as the Principal's response and I asked her to call me after she had a chance to read it.  She did call me and was very kind.  She listened to all of my concerns and frustrations.  She told me that they were in the process of splitting up the class and setting up a new room for the new class.  They had hired a teacher substitute for the short term and were working on hiring a new life skills teacher.  They were hoping to have the position filled by September 21.

Yesterday, I received a call from his teacher telling me that the class has officially been divided in two.  She was going to keep the 2-4 graders and the new class would have k-1.  That would give each class exactly 6 kids.  I also found out that they actually have 6 wheel chairs instead of the 5 I thought they had.  And until they hire the new teacher, they would be using the special education lead teacher for elementary programs to teach the class.  I'm pleased that they took action, and this quickly, in order to rectify a situation that never should have happened to begin with.  And I am happy that John is in a smaller class where the ration will now be 2:1 and he will get much more attention.

On a side note, when I picked him up for therapy on Tuesday, the teacher that brought him to the office for me told me that when she brought him to his 2nd grade class that morning for reading, the kids in his class were fighting over which one got to read to John.  That makes me very happy.  I love when John gets to interact with kids his age, who are typical, but I love it even more when they are excited to interact with him.  Most of all, John loves being with them.  I'm so thankful that he is in a 2nd grade class that will include him with the group and where the other students enjoy being with him.

A Day For Remembering

As Hurricane Isaac makes landfall and begins to splash and pound across the gulf coast, I am reminded of a day 7 years ago that feels eerily similar.  Actually, it was this exact day, 7 years ago when Hurricane Katrina came ashore in south Louisiana and became one of only a handful of hurricanes in the history of Louisiana, who's name will go down in history.  We've all seen the images, the very devastating images of the wrath she brought across 3 states along the gulf coast.  We've all heard stories, stories of tragedy and stories of heroism.  And if you go to those parts of the country today, you will still see signs that she was there and that those places will never, ever be the same.

New Orleans is my mother's home town.  It's where she was born and raised and where she lived until she went away to college.  It's also the place my brother, Jason, calls home today.  So it holds a special place in my heart and when something like Katrina or Isaac threatens the area, it makes me pay a little closer attention.  But on this day, 7 years ago, my attention was diverted elsewhere.

After 98 days spent watching over and holding my baby boy in the NICU at Texas Children's Hospital, we were finally preparing to bring him home.  It had been a very long process, one that I wasn't sure would ever come.  We actually thought we were going to bring him home a month earlier, but then it was decided that he would need a tracheotomy, and that delayed our homecoming by another month.  During that month, we spent time loving him and caring for him and learning how to do so at home.  We learned about suctioning secretions from his trach.  We learned how to give him a bath without getting water in the trach.  We learned how to clean the area around the trach and how often and we learned how to change the trach tube out at least once a month.  We went through a few "classes" with one of the nurses on how to do this, using a plastic baby to practice.  Then the day came when we had to do it on our real live baby boy.  That was pretty scary.  But we did it and proved to everyone that we would be able to do this on our own at home.  We had already taken a basic infant CPR class, but now we had to repeat the class and learn how to do CPR on an infant with a trach.  And our baby had to do a little test of his own to prove that he was ready for the trip.  He had to do a car seat test.  This means he had to spend 1 hour in his car seat without having any episodes of desaturation or bradycardia.  So we took that time to attach his car seat to his stroller and walk around the NICU, saying goodbye to the many nurses who had taken care of him over those 98 days and also to the few families we had met along the way.  The hospital did a great job of preparing us and him for the day we had been waiting to come for 3 months.  Then the day finally came.

We got him dressed in the cutest little Polo (yes we started him in Polo very early) onesie.  We got all of his belongings that he had collected along the way packed up and then we sat and waiting for the Kangaroo Crew to show up.  The hospital required that his first car ride home would be in an ambulance, just in case something happened along the way.  Once the crew showed up, and he had finally finished his last hospital feeding, we loaded him in his car seat.  I remember that he was really small in that seat, and we had to roll up a few blankets and put them around him in the seat so he wouldn't flop around in the extra space. We attached the seat to a gurney, and began to walk out of those NICU doors for the final time.  I remember many of the nurses lining up to tell us goodbye on the way out, and I remember one nurse in particular telling us not to come back.  That was just her way of telling us to take good care of him and make sure he doesn't need to come back to the hospital, like some other kids end up doing after discharge.  We went downstairs and loaded him into the ambulance and we were finally ready to drive him home for the first time. 

Tommy rode in the ambulance and I led the way in the car.  I couldn't believe this was actually happening.  When we drove up in front of our house, we were greeted by a few nurses from the nursing agency we would use.  The first few days, we had a nurse around the clock to help us take care of him.  Then after those first few days, we had a nurse for about 8 hours during the day and 12 hours at night, giving us about 4 hours by ourselves.  That lasted about a week before I was done having someone there during the day.  I didn't want to just let someone else take care of him.  I wanted to be just like every other mom who took care of their newborn.  So I really didn't let the nurse do much to help.  I finally decided it wasn't necessary to have someone there during the day when I was doing all of the work myself.

On August 29, 2005, our baby boy was finally home.  We brought him inside and layed him down in his crib for the first time.  He looked so incredibly small in that crib.  I look back at those pictures now and can't imagine that he was ever that small.  He did amazingly well with the trip and he adjusted to his new surroundings in no time at all.  We were finally home as a family of 3.   And with the exception of a few short stays, we made sure to heed the words of that nurse who told us to not come back.

 

 

 

Loaded in the car seat.

 

All tucked in, ready to go home.

I'm not so sure why it's so bright out here.

Loading up in the Ambulance

Home, but it's entirely too bright.

Thanks for the shade.

All comfy in my new bed.

Catching up

Yes, I know.  It's been a while since I have blogged.  It's summer time.  That's the only excuse I have.  Right now I'm sitting at TCH, which John has a bronchoscope and hearing test under anesthesia.  The bronchoscope was supposed to be a month ago, but when we decided to add a hearing test to it, we postponed so we could do them all at the same time.  Only one time under anesthesia is our motto.  So I have a good 2 hours or so to kill.

I was reading back at the last post about his sleep study results and discovered that there have been some changes since I last wrote.  After we saw the ENT and began capping him during all waking hours, he was doing great.  We continued putting him to sleep at night with his trach open and no oxygen and he slept well.  Then we saw the Pulmonologist.  We found out something about the sleep study that we were not aware of.  While his sleep apnea has greatly improved over time, he apparently had high levels of Carbon Dioxide for a large part of the study.  Of course this is not good.  The body needs to expel most of the Carbon Dioxide, otherwise, it can begin to affect other organs.  She said it isn't any kind of structural problem that is causing the retention, but it's just that his brain is not telling him to take deep enough breaths to get rid of it.  So she wants him back on the ventilator at night so it will help him to take deep enough breaths and expel the gas.  This is obviously not what we wanted to hear.  He had gone 6 months without a ventilator and we thought we were done with it for good.  And here we are going back on it.  What a pain.

The next week, we saw the sleep doctor/neurologist.  Her feeling was that if we take the trach out now, he may do ok.  But we don't know that for sure and it would be a risk.  She feels like if we wait 1 or 2 more years, then his airway will grow and he may be ready to have it removed then.  She asked us to just be patient.  I feel like that is all we have done for the last 7 years, but if he's not ready to be without it, then we want what's best for him.  We discussed the possibility of him using a bipap mask when he sleeps instead of the ventilator.  If he were able to use that, then the trach could come out because he would still be getting support.  However, there is no way in the world he will leave that thing on when he sleeps.  We even met with a nurse to work on getting him used to wearing it.  She gave us some tips to use to work on it at home.  He will let me put it on top of his head, but as soon as I get it to his nose, he is ripping it off.  I just don't see that happening, and honestly, I think we are better off just using the ventilator.  If we went to bipap, we would likely lose our night time nursing, which means I will be up and down all night and wouldn't get much sleep.

Last night, I took John to his new school to meet his new life skills teacher.  I have finally accepted that he has to go to this school.  I was feeling a little better about it, until I went to this orientation last night.  I discovered that his new class will have 12 kids in it to start the year, with 1 teacher and 3 paraprofessionals.  That is more kids than his class had last year with the same amount of adults.  I can't imagine why they moved him from the school he was at to alleviate some of the crowding problems, only to put him in a school where his class size is bigger.  I am going to meet with the nurse, teacher and teacher's aides on Friday to go over John's care with them and make sure everyone is on the same page.  But I get the impression that the teacher is going to be a bit overwhelmed.  I am worried about his health and personal care, of course, but now I'm beginning to worry even more that the progress he made last year will suffer this year.  I will just have to keep praying and trust God that  he will take care of everything.

I wanted to leave you with a picture of him in his extra special PJ's that Texas Children's has kids wear when they go into surgery, but my iPad won't let me.  So much for this Apple is superior garbage.

Finding a Church Home

We feel very blessed to be part of a church family that helps us to grow spiritually and who loves our family. Yesterday was the first Sunday in a few weeks that I was able to be at church, and I realized just how much I missed it. When I woke up this morning, it was on my heart that I needed to share with everyone (well, everyone who reads this) just how lucky we are to have such a great church home and why we love it so much. One day, before we were married, Tommy was in the grocery store on a Sunday just after noon. He rounded the corner and literally ran into a couple he knew from 1st Baptist in Lafayette. It was obvious to them by the way Tommy was dressed, that he wasn't at church that day. So they asked if he had found a place to go. They told him about this great church nearby that they were attending and told him to try it out. So two weeks after we were married, we attended our first Sunday at Tallowood Baptist Church. We fell in love immediately. We became regular members of a Sunday School class with other young married couples. We thoroughly enjoyed the pastor and the messages he brought to us each week. We also made good friends through the church, friends who are today some of our best friends. When John was born, most of our time was spent at the hospital with him. For 3 months, we spent every Sunday at Texas Children's Hospital, just being with our son. We had many visitors from our church over those 3 months. We had ministers come to visit us, we had friends from Sunday School come to visit and even once we had a total stranger come to visit. She and her husband had visited our Sunday School department the previous Sunday and she heard about our family. She happened to be a doctor at the hospital so she decided to come down and introduce herself to me and let me know that if there was anything I needed or something medical that I didn't understand, I could call her anytime and she would help me. All that from a total stranger. How awesome is that? We even got phone calls from people in the church that we didn't know, who saw in our Sunday bulletin that John had been born. Our church prints each Sunday when a new baby is born, who the parents are and how much the baby weighed. When they saw his weight, they figured he must have been premature, so they looked us up and called to tell us they had clothes that might fit him or just to offer us advice because they too were parents of a premature baby. All of these things made us feel very loved and gave us the support we desperately needed during those difficult times. When our church decided to start a new church in the Katy area, we toyed with the idea of going there because it was much closer to us. But we thought about how much we love our pastor and all of our friends and we thought about all of the support we got during those months and years after John was born, and we decided we just couldn't leave. After John came home from the hospital, we weren't sure what to do about church. We wanted to go, but because of his medical issues, we just weren't prepared to leave him in regular child care. We talked to the directors of our Sunday School department and they told us we could bring him with us to Sunday School. So that is what we did, for 3 years. Each Sunday, we would go to Sunday School and take John with us. We liked to say that he was our class mascot. But we would leave after Sunday School without going to the service. We felt he would be too much of a distraction during the church service. After 3 years of this, we finally met with the preschool minister to talk about finding John his own Sunday School class. We were aware that Tallowood had a department for kids with special needs, but the minimum age to be in that class was 6 years old. We finally found a class that we thought John would do well in. It was a class of 18-24 month old kids and the teachers of that class was a married couple who had experience with special needs. Once John started that class, we were finally able to go back to "Big Church". He got to spend 2 hours in there each Sunday and he seemed to really enjoy it. When promotion time came around the next year, it was decided that it would be best for him to stay in that class another year. So he did. We loved the Olivier's and the rest of the people who worked with him in there. But by the time he was 5, we all decided he was just too big to be with that same age group of kids. With nowhere else for him to go, the children's minister decided to let him into the Tallowood Treasures class a little early. We were so thankful that our church worked with us at finding a suitable place for John to spend his Sunday mornings, so that we could worship together. John has been part of the Tallowood Treasures for 2 years now. Two of the main teachers are certified life skills teachers. They know how to use different methods to teach our kids about God's love. There are also several volunteers who help the teachers and who love our kids deeply. We've always felt comfortable with John being there without us. Over the years, his medical issues became a little less urgent and since we were in the same building he was in, we knew that if there was a problem, we could be there in a hurry. But this year the church has started to kind of revamp the department just a little. All the teachers and volunteers are the same, but they decided to make one of the teachers the director of the department. And she has been working really hard, meeting with parents and researching other churches with special needs programs to find the best way to meet all of our needs and make it an even better place for our kids to spend their Sunday mornings. For the past two years, John has been able to attend Vacation Bible School as part of the Treasures class. This year, the church decided to go through a nursing agency and have a registered nurse spend the week with them in Vacation Bible School. It apparently went so well, that they decided to hire her on a regular basis. So now, each Sunday when our son goes to his class, not only does he have wonderful teachers and volunteers to help meet his spiritual needs, but he also has a registered nurse present to help meet his medical and physical needs. I am so excited that they have decided to do this. Maybe this will get more parents back to church who have been afraid to leave their child without the care of a medical professional. If you or someone you know has a special needs child and are looking for a wonderful church home in the Houston area, look us up. For more information, you can go to the church's website at www.tallowood.org or you can contact me. We would love to see you on Sundays.

Summer Fun

Last weekend, Tommy and I celebrated our 11th anniversary. If you recall, last year we went away for the weekend for the first time since John was born. It was a really big ordeal for us to leave overnight without him, but we had so much fun. So we decided to do it again this year. On Friday, we left around 1:00 and set out for San Antonio.

 We spent the next two nights at the JW Marriott Hill Country resort. We had lots of good food to eat and of course plenty of time to enjoy the pool and lazy river. Friday night, after a couple of hours in the pool, we enjoyed a casual dinner at the sports bar at the resort and because we were both so tired, went to bed early. After sleeping late on Saturday (oh how I miss doing that) we had a late breakfast and then spent a good bit of the afternoon floating the lazy river and hanging out in the adults only pool. We also did a few trips down the water slide, where Tommy thought it would be fun to flip my tube over, sending me underwater. Fun for him, not so much for me. We had planned on a later dinner, so after taking a late afternoon nap, we went to the golf clubhouse, where they have a very nice steakhouse. Again, we were both pretty tired, so we called it an early night. When I asked Tommy what his favorite part of the weekend was, he said sleeping late. I have to say that I agree. It really was nice to be away together with no responsibility and no need to need to keep an eye on the clock. I think we may try to make this an anniversary tradition.

11 Years of marriage

Of course today is July 4th. Such a fun holiday for families. One of my favorite July 4th holidays was the year we went to see my brother in Arkansas and the family rented a boat and spent the day out on the lake. It was such a fun and relaxing day and I wish we were able to spend more holidays like that. That's just one more reason I hope JT gets his trach out very soon. We aren't able to do any kind of swimming with him because of the trach, and without the pool to keep us cool, it's too hot to spend any amount of time outside. So today we went to lunch at the brand new Rudy's Barbecue here in Katy. Today was their first day open, and while I'm generally a little hesitant about trying a brand new place until they get the kinks worked out, I thought it was pretty good. And we got there at a good time, because by the time we left, the line was out the door. It was a very popular idea today. Now I'm sitting in my recliner, while JT naps and Tommy snores on the sofa. It is thundering outside, so maybe we'll get a little rain.

Because of the holiday, this week was a dead week for John's therapies. But next week, we'll be back at it. His horse therapy is really going well. He is loving the time he spends riding, and I have noticed it making a difference. During his first session, he didn't last the entire 45 minutes, and he spent a good majority of the time lying down on the horse. But last week, he rode the full time and spent most of the time sitting up. They are really working to get him sitting up straight. I've seen him doing that more at home too. He has 3 more sessions for the summer and then they take a break until September. Pray that a spot will open up for him and he'll be able to continue riding in the fall. I feel like more time spent on the horse for him could really make a difference. If he could strengthen his core and learn some trunk control, it could really go a long ways toward him being able to walk.

Other than therapy, our weeks have been pretty easy going. I almost have to really think to come up with ideas for us to get out of the house. Again, the heat is too bad to do much outside, and indoor activities are kind of limited. So I take him with me to the store when I can and yesterday, we just went for a walk around the mall. It was good exercise for me and he got a frozen yogurt treat at the end. We've also gone to see a couple of movies. We enjoy going to Studio Movie Grill because each week they show a different older kids movie and it's just $1 for kids and $2 for adults to get in. That's probably the best indoor activity I can come up with. In a couple of weeks, our niece, Jennifer, will be coming to stay with us so that will liven up the place a little. While he'll still have therapy and a few doctor's appointments, we'll still find some fun things to do while she's here. And he'll have a good time with her, even if we stay at home.

Have a Happy July 4th! Enjoy the time with your families!

Blessings

In light of the week I've had, I thought I'd share the following song with you. This has kind of become our family's theme song. It has such a good message, especially in times of trials and sorrow. The song is by Laura Story and it's called Blessings. Our favorite line is "What if a thousand sleepless nights are what it takes to know you're near." We have had those thousand sleepless nights (I've had two this week) and sometimes that is when I feel closest to God. I hope you enjoy the song.

Sleep Study Results

I'm sorry it's taken me so long to get you this update. I've had several people ask if we have gotten the results from the sleep study and I can finally say, "yes we have." We actually heard from the pulmonologist's nurse on Friday morning, but the results we had left us with more questions. So I was waiting to see the ENT today to get further clarification before updating you. On Friday we were told that he slept really well the first half of the night, when his trach was open. But during the second half of the night, when his trach was closed, he didn't sleep as well and he had some obstructive apnea. So it was determined that he is completely fine to sleep without the vent and without oxygen as long as his trach is opened. My question was how much obstruction did he have and how much was caused by the trach being in his airway. Also, if the trach were removed, would that take care of the obstruction. The nurse was supposed to talk to the doctor on Friday and call me back that afternoon, but I never heard back from her. So today, we saw the ENT. We like this doctor better anyway. She is just as anxious to get rid of the trach as we are, so I knew that we could at least come up with a plan. So she looked at the results and gave me the specifics from the sleep study. With his trach opened, he had approximately 5 central apnea events per hour (which is about what he had before) and he had 3 obstructive events per hour. With the trach closed however, he had 3 central apnea events per hour (less because he didn't sleep as much with his trach closed) and 13 obstructive events. His lowest oxygen saturation while opened and closed was 88%. That's actually not too bad. But it is of some concern that he had so much obstruction with the trach closed. So we came up with a plan. We are going to start capping John's trach for all waking hours. Then on July 20, the ENT will do a broncoscopy on John to check his airway for any kind of obstruction. Once that is done, Tommy and I will meet with her to discuss how we want to proceed from there. We will discuss the risks of decanulating John and whether or not it is worth doing. So, we didn't exactly hear what we were hoping to hear, that he is absolutely ready to have the trach removed, but it's not completely ruled out either. It just may not be this summer like we hoped.

Appeal....denied

Tonight, Tommy and I went before the Katy ISD school board to plead our case as to why we feel John should be allowed to remain a student at Kilpatrick Elementary. This really has been a long process. In case I haven't told you already, let me go back to the beginning. In mid April, John and I were on our way home from his hippo therapy evaluation when my cell phone rang. I was elated that the evaluation had gone well and that he was going to be able to ride this summer. I was feeling like things were finally falling into place for John and that he was finally getting just what he needs to become the person he is capable of being. I recognized the number on the caller ID as being a Katy ISD number, but I knew it wasn't from his school. The lady on the other end told me her name and that she worked with the Katy ISD special education department. She told me that because of the recent growth in Katy, and because of the 3 new elementary schools being opened, the district had decided to move John along with a small group of other life skills students at Kilpatrick, to the life skills program at Elementary #33, Schafer Elementary. I have known for a while this was a possibility because our neighborhood was being rezoned. But when I got that call, my heart sank. I asked the lady if there was anything I could do to change that decision and she informed me that I could file for an intradistrict transfer from Schafer to Kilpatrick. So that is what I did. The process of this is to fill out on online application. Once that was submitted, I then had to pay a $35 fee for the application to even be considered. Then I was told I would hear within 10 business days whether my application was accepted or denied. Talking with many people, I discovered that the office that handles these requests automatically denies all requests that are not from a district employee wanting to move a child to a school closer to where they work. So as expected, I received an email denying my request. I immediately requested to appeal the decision, and was given a date to meet with a district committee to explain to them why I think John should be allowed to remain at Kilpatrick. On May 10, I met with this 4 person committee. I had taken time to write down some talking points so that I could made sure all of my concerns were expressed. I even had a letter signed by John's pediatrician stating that John needed to be in an environment that had a registered nurse on staff to ensure that his medical needs were being met. I wasn't sure at the time, but later I found out that the new school was hiring a Licensed Vocation Nurse for their campus. While, I have nothing against LVN's and there are many out there that are wonderful nurses, I felt that the nurse who is at Kilpatrick is trained in trach care and has years of clinical experience in dealing with kids like John. She had to reinsert his trach tube 3 times this school year after it came dislodged at school. So I knew that he was in more than capable hands with her. I was not and still am not sure what kind of training the nurse at Schafer will have in dealing with kids like John. I felt like the meeting had gone well and was hopeful for a good outcome. A few days later I received an email with the committee's decision. My appeal had been denied. The reason cited was that they felt his needs would be met at Schafer Elementary. To me, that is not a good reason, and considering the fact they have never met my son, how do they really know what his needs are. I knew that we had one more option, appeal to the the school board. Tommy and I discussed whether this was the course we really wanted to take. After a little time deliberating, we decided that it was worth the effort if it would give us the opportunity to have John remain at Kilpatrick. I submitted the appeal to the Superintendent's office and received an email giving us a date and time to go before the board. Last night, we stayed up until midnight, listing out the things we wanted to say and Tommy typed them up in a dialogue format so that he could read them to the board. And today, at 5:30, we got the opportunity to express these concerns to the board. We decided to take John with us so the members of the board could see his face, and hopefully it would help them to think of him as a person and not just a number in the system. We also had Caitlin go with us so she could sit with him while we spoke. We were given 10 minutes to make our presentation then the representative from the administration was given 10 minutes to make his presentation. Members of the board then took turns asking questions of both sides to help them make a decision. We were told they would deliberate privately and then they would either vote on their decision during the open session that followed, or during next week's meeting. So Caitlin and I took John home so he could have dinner and Tommy stayed for the open session to see if they had a decision. He finally called me a few minutes after 7 and said that the board voted 5-2 to deny our appeal. So we had support from two of the board members, just not enough to have John remain at Kilpatrick. I have to be honest, although this decision was not a complete surprise, I was totally devastated by it. I was so in love with John's teacher this year, as well as the nurse at his school, and it completely breaks my heart to know that he will not be able to work with those people again. He learned so many things this year and I have seen a dramatic improvement in his listening skills, his communication skills and even his ability to follow simple commands. On top of that, he is actually learning things like his shapes and colors and even the letters in his name. His teacher found a way to get into his head and to understand him as well as to make him understand her, and I can't believe that he won't have her to learn from any more. Whoever the new teacher may be, no matter how good of a teacher she may be, it will take her some time to figure those things out, and it's not a guarantee that John will even be able to trust her enough to work for her. So instead of building on the things he learned this year and seeing where it can take him, he will be starting all over with a new team of people having to earn his trust. I fear that it will be a lost year and a huge setback for John's overall potential. It is truly shameful to me that the school district would put the business side of the district ahead of meeting student's needs. On top of that news, I also learned tonight that our nurse is not feeling well and would not be able to come in. The agency was unable to find a replacement for her tonight. So after little sleep last night, a full morning of Vacation Bible School, a dentist appointment this afternoon and then the board meeting, I will be getting little sleep again tonight. Tomorrow morning is another day of VBS and then John has an appointment with his ENT in the afternoon. And did I mention that Tommy is leaving tomorrow morning to go to Canada for the rest of the week? He was supposed to leave on Sunday, but stayed the extra day so he could attend the meeting with me. I will need lots of coffee just to get through the day tomorrow, and my emotional state will be very fragile for the rest of the week. My sweet husband did allow me to go to bed early and sleep for 3 hours or so while he was packing and getting ready for his trip. I will lay down on the couch and try to get a little more sleep tonight. Now is when I have to rely on God's strength more than ever. I need it every single day, but there are some days when I am reminded just how much I need it. I have been praying all along for his will to be done, so I choose to believe that he has bigger and better things planned for John. I cannot imagine in my wildest dreams that any school could be better than where he has been, but that is what God does. He goes beyond our wildest imaginations and provides us with more than we can dream of. I am so thankful for a God who loves me like that. Father, please give me strength and courage to face this change. God, you created John and you know his needs even better than I do. Give me peace of mind that you will provide all that John needs and that he will be okay. Use this situation to teach me to rely on you. Thank you for your reminder in Deutoronomy that says you will go before me, not to be afraid. You will never leave me or forsake me. Thank you for friends and family that pray for us every day. And thank you so much for the gift you gave us when you made us John's parents. We are so thankful to have a child that we can worry about and cry for when it seems that life is not fair. Mostly, God, thank you for showing your love for us each and every day. I know that I will be okay with a little time because I know you are still here, carrying me through and providing for me every step of the way.

Sleep Study

Tonight, John and I will be spending the night at Texas Children's for what will be something like his 15th sleep study. And if everything goes well, it could be his last. In the early years, we thought of sleep studies as being very important. Each time he had one, we thought it could mean his last. But after being disappointed over and over again, we came to think of them as just another hurdle on this journey. We stopped getting our hopes up and started to think that he would never be able to get his trach out because of the apnea. We came to realize that the apnea is not going away completely. Yes, it has gotten significantly better. At one time he was having 100's of apnea episodes an hour and as of his last study, he was having only about 5. Praise the Lord for that improvement. But it is unlikely that he will ever be completely rid of the apnea, although not impossible. We know that nothing is impossible for God and if he decided to, he could completely take away the apnea tonight. But we do know that for the last 4 months, John has slept without ventilator support and without oygen support. We have gotten our hopes up again, and tonight is one of those important sleep studies. We have to be at the hospital at 6:30 this evening, and will spend the next hour and a half or two hours getting him all wired up and ready for the study. I will stay over night with him and Tommy will come home. After what will surely be a restless night for me, we will start packing up around 6am and head home. If all goes well, and the doctor feels that he is still capable of getting enough rest without ventilator and oxygen support, we could begin the steps of decanulation (removing the trach). This will be about a 2-3 week process. It will be at least a week before we get results back, so we are looking at the possibility of decanulation sometime in July. But again, that is us being optimistic. It could in fact take a little longer, or it could be decided that he is not ready. Please pray for our family as we go through this process. Most importantly, we want God's will to be done. If it is God's will, then we are more than ready for the trach to come out. Pray that it will be absolutely clear to the doctor which way we should go. Everything with John has been a borderline decision his whole life. This one time, I want it to be clear. I certainly don't want the trach to be removed if he is not ready. Also pray for us tonight. I don't dread the restless night as much as I dread the getting ready part. It is such a tedious process to get all of the electrodes and wires on him. Keeping him still for that long is impossible. And lastly, pray for Tommy and I to maintain strength and peace of mind no matter what the outcome of this sleep study is. Each day is a new challenge. Thanks again for all of your prayer and support over the years. It is through your prayers and God's grace that we have made it this far.

Lucky 7!

Exactly one week ago tomorrow, our sweet baby boy turned 7 years old.  Really?  Has it really been 7 years since we were admitted into the hospital to give birth to this little guy?  Has it really been 7 years since I heard the words "It's a boy" at 9:14 am?  Where has the time gone?

As I wrote about earlier, we had a small get together the weekend of Mother's Day to celebrate with our family.  We decided Saturday would be a great time to celebrate with our friends.  It's always hard for me to decide what kind of party to have for him.  Most of the typical kids parties are out of the question for us because I kind of refuse to have a party that John can't participate in.  I don't do fun jumps because he doesn't like them.  That also typically rules out any kind of indoor inflatable place. The first two years, we invited so many people that we had it at a nearby park.  We reserved a pavilion for a couple of hours and grilled hamburgers and hot dogs while the kids played on the play ground.  One year we had a backyard party after we got John's swing set.  One year we used the indoor playground at our church.  And last year we went to the Little Gym in Katy.  They all were good parties, and John was able to participate minimally.  This year, we decided to do a backyard water party.  I think Tommy was a little skeptical at first, but it actually turned out to be a blast.

We borrowed two blowup water slides from two separate friends.  We put a slip and slide down and we blew up a small pool.  The pool was more for John, since that would be the only part he could participate in, but we found out that all of the kids enjoyed time in the pool.  Of course we also had the swing set.  That was put to good use as well.

I felt really unorganized this year and a week before the party, I still didn't have an idea for a cake.  The theme for the party was sock monkeys (surprise surprise) and I really wanted to try and have some kind of sock monkey cake made.  During a casual conversation with my neighbor, I somehow ended up enlisting her to make cupcakes for me.  Now that it was decided that she was making cupcakes, the search was on to figure out what kind.  It took us several days to finalize the details.  We decided it would be easier to make cupcakes with chocolate icing and to put toppers on them to go with our theme.  So I went online to the website Etsy, and found someone who was selling cute sock monkey cupcake toppers.  I paid her for the file and I was able to print out as many as I needed.  I have to say that it if wasn't for my very creative and helpful neighbor, there may not have been cake of any kind at the party.  She baked and iced all of the cupcakes and she cut out and put together all of the toppers to go in the cupcakes.  She even put together the party favors for the kids.  She definitely wins neighbor of the year award for that.

The party was a huge success.  We grilled burgers and hot dogs and of course had cake and ice cream.  The kids had a blast playing in the water.  I got in the pool with John and he splashed around for a little while.  Then I got him changed into dry clothes and Tommy took him to swing.  Even a few of his teachers from school showed up.  We almost weren't able to get the kids out of the water long enough to eat and open presents.  It was definitely one of the best parties we have put together.  We just might have to make it an annual thing.  Hopefully he will be getting his trach out this summer and next year he'll be able to play more in the pool and some on the slides.

We asked one of our friends if he would bring his camera to the party and take pictures for us.  He did an excellent job.  Go to his website, http://curtislawson.smugmug.com/ and check out his work.  And you can follow the following link below to see pictures from the party.  We are looking forward to another great year with our boy.  Hopefully next year, we'll have even more to celebrate.

http://curtislawson.smugmug.com/Families/JTs-Birthday-Party/

Heart to Heart

I think the last place we left off was right about the time when the MRI was cancelled because the anethesiologist wanted John to have an echocardiogram before he would sedate him for an MRI. I was pretty perturbed about it because I knew he would have a hard time lying still for the echo. But they wouldn't sedate him for an echo. On Tuesday, Caitlin and I (our wonderful summertime nanny) picked John up from school at 1:00 and heading down to TCH to attempt a nonsedated echo. I thought we might be there a while, because my own experience is that echo is behind A LOT. But we didn't wait long at all before they called us back. We got in the room and layed him on the bed and took his shirt off. The first thing he did was put his hands behind his head. That is his sleeping position. Every night, when we put him to bed, he immediately puts his hands behind his head. I then noticed that his diaper was wet and he had wet through his shorts. So I went ahead and changed him and decided to leave his change of clothes off until we were done. So he was layed out on the bed in nothing but a diaper, and he loved it. He wouldn't be a boy if he didn't. I have to say that I thought he did exceptionally well. He never once tried to grab anything, or smear the goo they put on his chest. He did figit a lot and moved his legs around and even bounced his rear end up and down on the bed a few times, but I was pleasantly surprised with how well he did. Finally we were done. So we got him dressed and ready to head home. On our way out, I decided to pop into the pacemaker lab and say hello to my favorite nurses. Isn't it funny that both of them are named Melissa? Anyway, they asked if I had his holter results yet and I said no. So she looked it up for me and said that it was one good looking holter. He had primarily sinus rythmn, no arrythmias and nothing abnormal. She is not used to seeing a holter that good from someone with the last name of Hitt. I called Tommy on the way home and told him that I thought John had done exceptionally well, and he said now we have egg on our face since we made such a big stink about him being sedated for it. The next day, Dr. H called to give me the results. She said that just as I predicted, he had a hard time being still. Really? I thought he was as still as he's going to be and still be awake. I guess we didn't have egg on our face after all. She said that because he wasn't as still as necessary, it wasn't a complete study. But they were able to confirm that there was no hypertrophy and that he would be okay for sedation for the MRI. I'm glad that he had his heart cleared, but at the same time I'm quite frustrated because I knew there was nothing wrong with it and we should have had the MRI done already. Now we have to wait 2 weeks before we get it done. This has been quite the process, but I'm glad our Dr. H is being thorough. On a seperate note, this blog is brought to you courtesy of my iPad. No, the iPad isn't new, but the way I'm typing is. My wonderful husband though that a good Mother's Day present for me would be this nifty iPad case. It is called a Zagg. The case comes with a place for two things. On one side, you put your iPad and on the other, you can put an actual keyboard. And the keyboard has a little ledge where you can prop your iPad up and then are essentially using it as a lap top. A very small laptop. I didn't know if I was going to like it so much, but I do. And now I can blog from anywhere, not just my actual laptop that has a battery life of about 30 minutes. Kind of defeats the purpose of being a laptop. The only downside is that some iPad apps can only be used in portrait mode and you have to take the iPad out of the case for that. And to close out this post, I have to tell you that I am now the mother of a 7 year old. My baby boy had a birthday yesterday. If I think about it in age, it doesn't seem possible for him to be 7. But if I think about it in years, it sometimes feels a lot longer than 7 years. I think that is just because we have gone through so much in those years. But either way, I love him like there is no tomorrow. He had a fun day yesterday and we took him out to dinner last night. We celebrated his birthday with our family earlier this month, and tomorrow we are celebrating with our friends. We are having a water party in our backyard. It should be a lot of fun. I knew this was going to be a busy week, getting ready for the party, but that still didn't stop my body from letting me down. I ended up with bronchitis this week and I have been coughing my head off every day and every night. I haven't had much sleep and I'm running on fumes, but I'm still going. The steroid that the Dr. gave me has turned my face red, but hopefully it starts taking care of my cough SOON. And I have to say that if it wasn't for the help of the best neighbor ever, I wouldn't have gotten everything done. She has all but taken over my party planning and decorations. It will be obvious that I didn't do it, because I'm just not creative, but it will be such a cute party. I can't wait to share with you guys all the fun we have.

Quick Update

I don't really have a lot to update right now. John did have the EEG and EKG along with a holter monitor on Friday last week. The results from the EEG are in. It showed no abnormalities (which is par for the course with him). It showed no signs of seizures either, although that doesn't mean that he hasn't had any. But at least we know his brain is functioning the way it should be for him. It's always good when a test shows no abnormalities, but at the same time, it would be nice to get an explanation for what's going on.

The EKG showed a normal sinus rhythm, but it also showed a possible left and right hypertrophy. I asked what that means. It could mean absolutely nothing, that it is just a variant of normal (meaning normal for him). It could also mean a thickening of the heart wall. My favorite nurse looked back at his only other cardio work up he has had, from his time in the NICU, and the report then said the exact same thing. An echo cardiogram was done then and it showed nothing wrong. But it's been almost 7 years, so the doctor thought it would be a good idea to do another echo. The holter results are still not back, which isn't a big surprise to me. It sometimes take longer than they say to get a report.

He was scheduled to have an MRI today, but the anesthesiologist will not sedate him for an MRI until they get the results back from the echo. Now here is the crazy part. I think John will need to be sedated for an echo. I know how wild he can be and I just don't think he will lay still while they spread goo all over his chest. However, they do not do sedated echos for kids 6 and older. If they do need to be sedated, it has to be under anesthesia, and they say they won't put him under anesthesia until he's had an echo. But he may not be able to have an echo without anesthesia. Confused yet? Yeah, me too. So we are going to try and do a regular, unsedated echo on Tuesday to see if they can get enough information to tell them it's okay to sedate him for an MRI.

So that is a little bit of what I have been dealing with this week. Maybe another time, I'll have enough energy to tell you about what we have been going through with our school district for next year. Needless to say, I still hate May.

A new Chapter

Our son must have thought that life was getting a little bit boring, so he decided to spice things up to add a little more excitement to it.  Last week we began a new chapter in this crazy story we are writing.  John is now being treated for seizures. This is not something I ever expected to happen, but it has.

It all began last Tuesday, at school. I got a call from his school nurse some time after lunch. We always joke when she calls because we talk so frequently. But when I answered I could tell she was not in a joking mood. She told me that she got called down to John's class because he was not feeling well. When she got there, he was on the floor, lying back against his teacher. His body was completely limp and he was not responding. Also, his eyes were constantly moving back and forth. She kept trying to call his name and get his attention, but he wouldn't respond. She said he was so pale that he looked like he wasn't breathing. She was just about to call 911 when he finally snapped out of it. Then he was acting like his normal self. So she called me instead. She said the whole thing only lasted about 30 seconds. I have never seen him do anything like this, so I went to the school. He of course was acting normal. I knew he had a long day on both Sunday and Monday, so I thought he was just tired. I took him home and put him down for a nap and he slept for 3 hours, which is unusual. He was back to his normal self when he woke up. He went back to school Wednesday, and I called his neurologist to let her know what had happened. She wasn't totally convinced it was a seizure. But she said even if it was, she wouldn't consider medication after just one. So she ordered a few tests and I got them all scheduled over the next couple of days.

He was at school on Friday morning, and right about 10:00, I got another call from his nurse. She said he was doing the same thing again. This time she was trying to pinch his fingers but he wouldn't respond to that.  When they pinched his arm, he pulled away, but he was still out of it. So I went to the school and was able to talk to his teacher. This time he was standing in his stander when it happened. He started with a cry and then his whole body went limp. She took him out of his stander and layed him on the floor. After the nurse called me, his teacher picked him up and carried him to the clinic. She said about half way there, he snapped out of it and started to smile. This time it lasted about 1 minute. I got John home and called his doctor again. She decided she wanted to see him right away.

So I took him down to TCH where Tommy met us. We got down there at 1:30 on a Friday afternoon, so you can just imagine what it was like. She arranged to have a couple of the tests I had already scheduled done while we were there. She walked with us to cardiology where he had an EKG and a 24 hour monitor put on. Because he got so pale during the episode, she wanted to make sure he wasn't having any arrythmias that were causing him to do this. Of course, being my son, that is a high possibility. After cardiology, we went up to neurophysiology to have an EEG. Dr. H met us up there and talked with us a few minutes while they were setting up. She said the eyes moving back and forth made her think it was a seizure and since he has now had 2, she wants to start him on medication for it. She also said that some people can tell when they are about to have one, and because he cries right before it happens, that might be his way of telling us it's coming. John never, ever cries unless something is wrong,so there is obviously something going on inside his body that he knows is not right. Tommy asked why she thought he would suddenly start having this now. She said that a seizure is basically any disruption of the normal electrical activity in the brain. John's brain has always been slightly underdeveloped. There is something in the brain called myelin which is kind of what conducts the electrical activity. Because the myelin in John's brain may finally be developing to a point where the electrical activity is conducting better, this may be what's causing the problems. It's a good thing that his brain is developing, but at the same time, we may now be finding out about the seizures. So now we have started the medication. She said that the only side effects we may see are irritability and increased sleepiness. Yesterday, he took a 4 hour nap, and then I had to wake him up this morning at 7:30. We aren't sure yet if it's from the medicine or if it's because we had company this weekend and he was just tired. We are at therapy now and then we will be going to school. Our boy is a trooper and he is just taking it all in stride.

So now we wait for results from our tests to see if there is anything else we need to add.  Even with all that is going on, he is still the happiest kid I know.  It is an extreme pleasure to be that boy's mommy.

Please pray for us as we adjust to this new reality.  Also pray for John as his body has to adjust to this new medication.

Special Olympics

On Monday afternoon, John's school hosted an event called The Special Olympics Young Athlete Program.  This was just for the kids in John's school who are in life skills and PPCD.  I really didn't know what to expect because we haven't gotten much information about it.  I remember signing a consent earlier in the year for him to participate, but I hadn't heard anything about it since.  Apparently, they have been practicing at school for different events.

Now it's not like the Special Olympics where kids compete in particular events and then they get medals for placing 1st, 2nd or 3rd.  I think this is just a warm up to prepare them to participate in such an event.  They were allotted so much time at each station, and each child got to do that activity.  It was just for fun.  The parents were invited to watch and we even got to walk around from station to station with our child.  It was just an exciting time for the kids to participate and have a bunch of people cheer for them.  The staff at the school did an excellent job organizing this.  It was a lot of fun to see the different kids get excited over an accomplishment.  They even invited all of the special buddies to come and watch.  Many of them made signs for the kids participating with their name on it, and it was great to watch these kids interact together.

John did 3 events.  The first was tossing a ball into a basket, which actually was him rolling it off of his lap into the basket that sat at his feet.  He did that so fast that I couldn't even get a video of it.  Then as he sat in his chair, they gave him a large ball to roll on the floor and knock down some large, inflateable bowling pins.  When all of the pins didn't fall, the teacher pushed his chair through and knocked down the rest.  The last thing he did was a regular type of bowling.  They had small plastic pins set up in a diamond shape and they put a ramp in front of John.  They put a small ball on the ramp and he had to push the ball down the ramp and knock over the pins.  I've actually seen ramps like this at bowling alleys for young children.  I think I might know a new family activity we can try.  I did get a video of him doing this and he knocked down all of the pins. 

After all of the stations were complete, they lined up all of the kids and they each got a ribbon.  And probably the best part of the whole experience was the parade they did afterward.  All of the kids in the school along with teachers and staff members lined the hallways around the school.  The kids that participated, along with the Special Ed staff and the special buddies, walked around the school in a parade while everyone clapped and cheered for them.  It was really a special thing to watch.  I was so excited to be able to watch.  And my child was very wild and excited.  He had worked up a sweat by the time it was over.

Here are a few pictures and videos that I took.

Getting ready for the basket toss

Making a silly face

John with his buddy, Evan.

Getting ready to bowl.

I did have a video of the parade, but for some reason it doesn't want to upload.  I'll have to try and upload it to facebook.