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.