I'm back...

...Well, maybe.  I knew it had been a while since I last blogged but I had no idea it had been 3 months.  I sort of felt like there really wasn't much to write about.  We have been trudging along through everyday life.  Nothing new or excited has really happened.  But, if I take some of the smaller things and put them together, then maybe I would have at least one good post in me.  So here is what's been going on.

The holidays went by in a rather blur.  Tommy and I hosted both Thanksgiving and Christmas at our house.  While it's nice to not have to travel, there is a different difficulty in having everyone at your house.  But we had a great time.  Thanksgiving seemed to go by pretty easy.  We had dinner instead of lunch and since we did a lot of preparations the night before, we didn't really spend our entire day cooking on Thanksgiving day.  Christmas, however, was a different story.  We had basically the same menu, with a few exceptions, but I spent the entire day in the kitchen, rushing to get it all together to eat at 5:00.  I don't know what happened.  And, if it wouldn't have been for our neighbors letting us use their oven and their refrigerator and a few of their dining room chairs, I don't know if we would have made it.  It's great to have neighbors like that.  Have I mentioned before how much we love them?  I'm pretty sure I have.  The best part of the holidays is we all managed to stay healthy.  No illnesses through the whole month of December may be a record for us.

New Year's Eve was rather uneventful.  We did get to spend some time with several of our good friends.  Each year, one family hosts a New Year's Eve party at their house.  Since it includes kids, we start at 5:00.  We left around 8:00 to get home before John's nurse gets here and we were all in bed asleep well before midnight.  We are some real party animals at our house.

Since the start of the year, John has had several doctors appointments.  They normally are more spread out, but somehow we managed to schedule 3 appointments in January and he has already had one in February with another coming up.

The first appointment was with the ENT.  I mentioned to her that he seems to have this constant nasal congestion and every now and then it flares up to an infection.  She put him on Singulair allergy medicine every day, along with a nasal spray.  We have been hoping this would keep the congestion under control and keep him from getting any kind of sinus infections.  However, he spent two days home this week with congestion.  He got an antibiotic from the doctor on Monday and was finally able to go back to school on Wednesday.  Poor little guy was just wiped out from not feeling well and has slept so much since Sunday.

The next appointment was with Pulmonology and there was nothing new to add.  We did schedule another sleep study for this summer.  Then we saw our Neurologist/sleep doctor.  She decided that since John's sleep seems to be under control, she doesn't need to see him any more, unless he starts having problems with either sleep or seizures.  So we can now cross one specialist off of our list that we see regularly.

Yesterday was a rather exciting appointment, well maybe it depends on your definition of exciting.  We saw our PM&R (Physical Medicine and Rehabilitation) doctor.  She basically follows all of his development progress.  She recommends therapies for John as well as writes prescriptions for any equipment he might need.  She was very pleased with his progress.  She thought that we should get a different kind of brace for his feet.  Instead of the tall kind of brace that goes most of the way up his lower leg, she thinks that short braces that just go up to his ankle would be sufficient.  We are hoping that this will make it easier for him to pick up his feet when he walks.  The other braces are so heavy and bulky, that he seems to have a little more difficult time picking his feet up off the floor when he is wearing them.  But the exciting part of this appointment was that she suggested we start trying to potty train John.  This thought has crossed my mind, but I just never have been convinced that he could handle it.  Her suggestion was that we take him to sit on the potty every two hours and that we should start changing his diaper only in the bathroom so he can correlate that is what he is supposed to do in that room.

**Warning** this next paragraph talks about using the potty so if you don't want to read about it, you can stop now.

When he came home from school yesterday, I decided to try putting him on the potty.  Sitting him on the potty is not an easy thing to do.  First of all, he thinks it's HILARIOUS.  Once I get him on it, he starts trying to grab the shower curtain and anything else he can get his hands on.  Then when he realizes that I'm not going to let him, he puts his hands on the side of the seat and pushes his bottom up off the seat.  Then sometimes he leans his head over and lays it against me.  But the whole time he is laughing.  The funny thing is, the very first time I sat him on it, he actually went.  It was just a little bit, but he did go.  When he was finished, I put a diaper back on him and then he promptly wet it.  Of course he is not going to make it easy.  I tried one more time last night and again this morning, and he didn't go either time.  But we'll keep at it.  His teachers are also going to work on it at school.  We've decided that it will be easier if he is wearing pull ups, so we are going to start using those during the day.  Today I went to Target and bought him a smaller seat to put on the potty and a couple packs of pull ups.  The problem with pull ups is that they aren't generally designed for kids John's size.  So the regular ones are too small.  But they have some called Good Nites that are designed for older kids who have trouble wetting the bed.  So we will just have to use those.  This is going to be an interesting adventure.  I don't know if he'll ever learn to go to the bathroom when he needs to.  It might just be that we train him to go at certain times of the day.  But either way, I'll take it.  I'm glad to have a friend that is going through the same thing, that I can talk to and get advice about it.  It sure makes this journey easier when you have someone going through it along side of you that understands how difficult it can be and can speak the same language.

I'll end this post with a few pictures to show you what we've been up to lately.

Look how tall I've gotten

My new trick

Me and Ms. Caitlin

Two peas in a pod

Mommy's two handsome dinner dates

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.