The Countdown is on

70 days!  Barring any setbacks, that's how many days are left before John says goodbye to his trach, hopefully for good.  Today we saw the Pulmonologist.  We discussed with her the ENT's time table for decanulation (fancy word for taking that dang thing out of his neck).  She was completely on board.  It's kind of funny because I have always sensed a sort of power struggle between our ENT and our Pulmonologist, but when it came right down to it, they agreed.  That's a nice feeling as a parent.  So the official date is April 7.  The time table looks like this:

April 1 (no joke) John will go to TCH for an outpatient procedure called a DL&B.  This is just a check of his airway.  We do this annually anyway, just to make sure that no granuloma tissue has formed in his airway that needs to be removed.  He will come home that day.

April 6 (day after Easter) John will be admitted to TCH for a minimum of 2 nights.  That night, they will put a cap on his trach and monitor him while he sleeps.  This is the same cap that he has been wearing during the day for a little while now.  It doesn't allow him to breath through his trach at all.  He has to breath completely through his mouth or nose.  We aren't allowed to let him sleep with it at home, so he only wears it during waking hours.

April 7 (DC Day) If all goes well after the first night, they will take the trach out.  The stoma (hole in his neck) will be bandaged.  He will stay in the hospital one more night so they can monitor his sleep without the trach.

April 8 (1st day post trach) If all goes well after the 2nd night, John will be discharged to come home.  And that is when the real fun begins.

This all started about 6 months ago.  On July 22, John went in for his 16th overall sleep study.  Let that number sink in for a minute.  in 9 years of life, he has had his sleep studied 16 times.  And it's not like he just goes in and goes to sleep and they watch him.  If you saw the amount of junk that they put on his head and body, you would be amazed that he's able to sleep at all.  When he was really little, it was a nightmare.  He screamed bloody murder the entire time they were attaching all of the electrodes and by the time they were done, he had himself so worked up he couldn't breathe.  Now, he doesn't cry but keeping him still long enough for them to get it all on is pretty tough.  They usually end up attaching each electrode at least twice after it's all said and done.  The other hard part is that I don't sleep well when I'm there.  So it's just a pretty miserable night all together.

photo from the July 22 sleep study

On July 29, (ironically 9 years and 1 day after his trach was inserted) we saw the pulmonologist for the results.  For some reason, I guess he just had a feeling, Tommy decided to go with me to this appointment.  He used to go to all of them, but after a while, nothing new was going on so he just let me take him myself.  But this time, he came with me.  Dr. K walked in and had already looked at the study.  The results really weren't what we were expecting.  You see, the two previous studies showed that while his apnea was significantly decreased, he was now having trouble expelling enough Carbon Dioxide at night.  He just wasn't taking deep enough breaths to blow it off.  So we continued with the ventilation at night to help him get rid of the CO2.  This sleep study, however, showed that his CO2 levels were in the normal range, but his apnea was higher than it had been.  We were just puzzled.  I thought to myself, this is never going to end.  But then Dr. K said something that surprised me.  She said she thinks it's time we see if taking the trach out will make a difference.  Apparently, he still has a significant amount of obstructive apnea and we think that is caused by the trach itself.  So if we remove the trach, the obstructive apnea should go away.  Also, obstructive apnea can also caused increased central apnea, which is when the brain just doesn't tell you to breathe.  So by eliminating the obstructive, we should be able to reduce the central.  We made a plan that we would get him through cold and flu season keeping the status quo, and then sometime in the spring we would try decanulation.  When this was decided in July, spring seemed like such a long time away.  But here it is.  February will be here in a few days and before we know it, it will be April.  In just a little over 2 months, our world will change.  And I am feeling so many emotions about it.

I'm excited because after nearly 10 years, my boy will be able to leave a more normal life.  Life with a trach is hard.  It goes beyond the realm of having a child with special needs.  It means he cannot be near water unattended, and his head can never go underwater.  That makes bath time especially tough.  It means he is more susceptible to germs because he doesn't have a mouth and nose to filter out many of the bad things in the air.  It means we can't just call the teenage girl next door to babysit.  We have to hire someone and spend hours training them on things like suctioning and how to know if the trach comes out and how to put a trach back in if it does come out.  They can't be left alone with him until they have sufficiently demonstrated they can do those things without me having to tell them.  So after nearly 10 years, we will finally have a little bit more freedom in things we haven't had before.

I'm anxious because although this will make our day time routine much easier and will improve his quality of life, it will mean that we will no longer be able to have night time nursing.  For nearly 10 years we have had a person in our house at night watching our son.  And one of those nurses has been with us since the very beginning.  Once the trach comes out, our insurance will no longer pay for us to keep the nurses.  This means I will be spending a lot of nights watching John.  We will set up some kind of system where I will sleep in the room with him, but that usually equates to not a lot of sleep for me.  I don't know how long that period of time will last.  So I'm anxious, and I'm sleepy already just thinking about it.

I'm nervous because I know this isn't a done deal.  There are a lot of unknowns.  This is not a slam dunk.  If his apnea doesn't improve, it means he will not get a good night's sleep.  His brain does what it's supposed to do by waking him up if he doesn't breathe.  But this means that his quality of sleep will suffer.  He will be more tired and that will affect his behavior, his school and his development.  And prolonged periods of time without good quality sleep can cause organs to begin to fail.  So I'm nervous that his quality of sleep will suffer, and my happy, healthy boy will no be as happy or as healthy anymore.

I'm afraid because if this doesn't work like we hope, he may have to have the trach put back in.  I've always prayed that when the time came for him to have his trach out, it would be a no brainer.  I wanted there to be no doubt that he would be okay without it.  But that's not the case.  This is kind of a trail and error situation, so there is a possibility that he doesn't tolerate it.  And I really don't want to go through the process again of having a trach inserted.  That was the worst week of our life because he had to be completely still and sedated in order to let the track heal.  I couldn't hold him or even touch him and he did not look like himself.  I don't want to go through that again.  So I'm afraid because I don't know what the future holds.

I'm blessed because although I don't know what the future holds, I do know who holds my future.  Our faith has kept us going all of these years.  Tons and tons of prayers have gone up on our behalf and we have received tremendous support from our family, friends and church family.  It is very powerful to know all of those people have been praying for us all of these years.  We have been blessed beyond our wildest dreams in this regard.  But mostly, I'm blessed because I know that it's all in God's hands.  He has had this mapped out from day one and nothing that has happened or that will happen will be a surprise to him.  We may not understand it, but he does, and knowing that he is in control means knowing that even if it's not okay, it will be okay.  He will lead us through the difficult times like he always has.  I hold on to the knowledge that one day, we will be with him in heaven, and my little boy will be made whole.  No more trach, no more wheelchair, no more diapers and no more lack of communication.  He will be walking and talking and doing all of the things he was unable to do on this earth, and that is the greatest hope of all.

You have all been so faithful to pray for us over the years, so I'm going to solicit your prayers once again.  Pray for John over the next 70 days that he will have no illnesses or set backs that will prevent this from happening.  Pray for him that once the trach comes out, his body will respond accordingly and this will be the end for good.  Pray for Tommy and I as we deal with the uncertainty.  Our whole lives and schedules will change completely, so pray that we will handle it well.  And pray that after our nursing days are over, I will find some way to stay rested.  I've been though periods of time with little sleep and it just affects me in ways you can't imagine.  So please pray for easy nights once we get him home and settled in.

Thank you all so much for staying with us on this journey.  It has been a wild ride, but we wouldn't be near as sane as we are without all of your love and support.  And I ask one more thing of you.  Share our story.  If you meet someone in a situation that is similar to ours, share our story with them.  Even feel free to have them contact me.  It can be a lonely world when you are struggling with the health of a child.  Having someone to share those struggles with, to seek advice from, or even just someone to talk to who you know understands can make all of the difference in the world. 

I look forward to the updates in the weeks and months ahead.

School update

This morning, John had an appointment so he didn't go to school first thing.  After his appointment ended, I took him to school.  Today, they were having something they call Super Specials.  This is done every so often for about 3 hours.  The kids rotate through PE, Library time and other things in order to give the teachers extra time to plan.  They use parents to come in as volunteers to help with kids while the teachers are planning.  I told John's teacher that when I dropped him off, I would stick around and help out with his class.  So when I got to school, I checked John in and walked him back to meet his class.

They were actually in the motor lab, which is just a room in the school that has things like trampolines and balance beams for the life skills kiddos to work on their motor skills.  I was going to take him out of his chair so he could play, but it was time for them to go back to class.  So one of the teachers ran down to the class and got his walker so that he could at least walk back to class.

At first, he didn't seem like he wanted to leave motor lab, since he didn't get a chance to play.  But he was so happy to be out of his chair and in his walker.  As they started back to the classroom, I pushed his chair and stayed back close to John.  He likes to stop every time he comes to a window or a picture on the wall.  So it takes him a little while to get where he's going because he is a nosey rosy.  But in the process, I got to observe something that really made me smile.

As John was taking his time walking down the hall, there was a Kindergarten class with their teacher walking in a line behind him.  It was obvious that they were taking their time and waiting for John to get where he was going.  Of course being mom, I was trying to hurry him along so that he didn't hold them up any more.  But instead of being impatient, the teacher (whom I do not know) was patiently walking behind and cheering him on with words of encouragement.  Another teacher (whom I also do not know) walked by in the hall and commented on how well he was walking.  It was not lost on me that both of these teachers, know him by name.  They have never had him in a class, but they still know his name.  And they were both genuinely happy to see him walking and how well he was doing.  Of course that huge smile on his face may have something to do with it.

It makes me very happy and proud to know that my son attends a school where the whole staff takes an interest in him enough to know his name and to take the time to encourage him when he's working on walking.  Even when he may be in their way.

His teachers work on his walking every day.  Yesterday, she sent me an email with this story.

Everyday, when they go to motor lab, they put John in his walker and have him walk down there and walk back.  Sometimes, they take him out just for a walk.  When they go for a walk, they walk in the opposite direction than they do when going to motor lab.  Yesterday, they were going for a walk and for whatever reason they went the same direction they usually go to motor lab.  When they got to the door of the motor lab, John came to a stop and would not walk any further.  She said she could not figure out why he wouldn't keep walking.  Then it dawned on her.  He wanted to go into motor lab.  That's usually where he goes when he walks in that direction and he knew it.  So he wasn't going any further until he was able to go into motor lab.  So they did.  That crazy boy sure knows what he wants and is trying to find ways to tell us.

Which brings me to this thought; We always say that John can't really communicate with us.  Sure we know when he's happy and when he's not and we've learned a few of his other small cues to know when he's tired or even hungry, but as far as letting us know what he wants, we haven't made that connection yet.  But I think he is communicating with us.  He may not be able to use words or even sign language, but he has his ways of telling us what he wants, like stopping at motor lab and not continuing until he could go in.  We just have to listen more closely in order to understand what he's trying to tell us.

His teacher told me on meet the teacher night that it's her goal for him to walk out of the building on his last day of 5th grade.  That's just a little more than a year and a half away. I don't know if John will be able to walk on his own by then or not, but I do know this.  Whether he walks out of school, or leaves in his wheelchair, he will do it with a smile on his face.

Lucky #16?

Most of you know by now that part of John's trach journey is that he has a sleep study once a year.  In the early days, it was more like 2 or 3 times a year, but for the last few years, it has only been annually.  We usually get them done in the summer because when we get home the next day, he is in no shape to go to school.  Although it's called a SLEEP Study, not much sleep is had by either of us.

This year's study was scheduled for July 22.  This happened to be the very next Tuesday after we got home from Austin.  Although I wasn't really mentally prepared for it, I knew it needed to be done.

Two years ago, we went into the sleep study thinking this was going to be it.  This was going to be the time when they tell us his apnea is acceptable and we can start the process of decannulation (removing the trach).  For the 6 months prior to the sleep study, John had been sleeping without his ventilator and without oxygen and had done quite well.  We thought if that was the case, surely he was ready to have the trach out.  After the study, we got the results back and it wasn't exactly what we thought.  We were right in the fact that his apnea was at an acceptable level.  He had gone from having hundreds of apnea events per hour to having less than 20 per hour.  However, a new problem had arisen.  They discovered that because he is sort of a shallow breather at night, he doesn't take deep enough breaths to expel enough Carbon Dioxide when he sleeps.  This may not be significant in the short term, but over time, the increased CO2 can cause damage to major organs.  So not only was he not ready to remove the trach, we had to put him back on the ventilator while sleeping.  We felt like it was a huge setback, but obviously we want to keep his organs healthy.

Last year's study showed pretty much the same thing, so we went into this one not expecting any different.  Our process on Sleep Study days is that John and I meet Tommy for dinner between 5:00 and 5:30 before heading to the hospital.  We go up to the sleep center at 6:30 and they begin the process of getting him all wired for sound.  After we get him set up and in bed, Tommy leaves and goes home and I stay at the hospital for the night.  While we were waiting for the tech to come and get us, Tommy and I were trying to guess which number sleep study this was.  We both were thinking it was #18.  We asked the tech when she brought us back to the room and she said it was #16.  Would this be lucky #16?

Here are a couple of photos of John attached to all of the wires.  We had his hair cut short before hand to make it easier to attach and wash clean after.

We finally got settled in and got the study started.  John did not sleep well that night, even worse than he normally does.  We got up in the morning, detached him from everything and I took him home.  I gave him a good bath to wash all of the goop off of him, fed him breakfast and then he and I took a nap.  I woke up after 2 hours because I had somewhere to be but John slept for 4 hours.  He obviously did not get enough sleep during the night.

A week later, we had an appointment with his Pulmonologist and were looking forward to hearing the results.  She came in with good news and not so good news.

First, the not so good news.  This study showed that his CO2 level was in the acceptable range all night, (yay) but his apnea was worse this time than it had been the last two times.  He had something like 55 events per hour.  While it's still significantly better than it used to be, it was higher than it had been in past studies.  There was some obstructive apnea, which means that there is something in his airway that obstructs the flow of air, but there was a significant amount of central apnea, which means that his brain is just not telling him to breath.  Obstructive apnea can be fixed but central apnea cannot be fixed.  We discussed the possibility of using a CPAP mask to help him breath instead of the trach, but I know my child.  He will not keep that thing on all night and I will be up and down all night putting it back in place.  I told her that for us, that was not an option.

Now onto the better news.  She began to discuss the possibility that the trach itself could be causing the obstructive apnea.  If the trach wasn't there, all of the obstructive apnea might go away.  And she said it's possible that the obstruction of the trach could be causing some of the central.  Either way, we really won't know as long as the trach remains in place.  So we made a plan.  In 6 months we will go back to see her.  Then when it turns to spring and we are out of cold and flu season, we would go ahead and take the trach out and give it some time to see how he does.  After a certain amount of time passes, we will repeat a sleep study and see how it looks.  If he's doing fine, then we will be free of the trach.  If he continues to struggle, we will first try the CPAP mask and see how he does.  If that doesn't work for us, then we may have to reinsert the trach.  Obviously we don't want to have to do that as that will involve surgery, but we all kind of feel like we will never know until we try.  I really feel like he will mostly be fine without the trach but there are two areas of concern.  If he continues to have the apnea, he will not get a good night's sleep and that can affect his developmental progress.  It also can put more pressure on his heart, over time causing it to begin to fail.  And if he continues to not expel CO2, then it can, over time, affect his organs.

The last thing we need to do before we make this decision final is consult with the ENT.  We have an appointment with her on September 10.  We will ask her what her opinion is of having to reinsert the trach should it come to that.  There may be scar tissue built up that would make it hard to do.  Once we get the green light from her, then we will be good to go.

Please pray with us over the next 6 months that God will make his plan for John clear to us.  Pray that John continues to thrive like he is now and that his development continues to improve.  And pray for us as we make these big decisions.  We want to do what's best for John, even if that means he keeps his trach for the rest of his life.  I will keep you all posted as we get more information.

Summer Fun

Another summer has come and is now almost over.  It's been a busy one, although thankfully not as busy nor as stressful as last summer was.  We are a little more than 2 weeks away from the start of 4th grade.  4TH GRADE!!!!  I can't believe it.  I may have said this before but I'm struggling with the idea of my baby being a 4th grader.  3rd grade doesn't sound so bad.  It still sounds like lower elementary.  But 4TH GRADE?!?  That is just one step from 5th grade and 2 steps from Junior High. I'm definitely not ready for Junior High.  I taught Junior High.  I know what goes on with Junior High kids.  So I'm begging that time please slow down, just a little, so I can enjoy a little more time with my elementary baby!

Tommy and I took a much needed vacation the last week of May.  We have gone away for the weekend a total of 4 times since JT was born, only once was out of Texas and that was to Louisiana.  We haven't been on an actual extended vacation since our trip to London and Paris when I was just pregnant.  That was 10 years ago.  So we decided it was time to spend more than 2 nights away.  And it needed to be far away.  So after months of planning and arranging child care for John, 13 pages of instructions later, we left on Memorial Day for 5 days in Cancun.  John was, of course, in good hands with my mom, Tommy's brother, Jimmy, and his after school nanny, Haley.  Also, my brother and Sister-in-law were only about 3 miles away just in case.  We purposefully planned the trip while John was still in school so it would be easier on those taking care of him.

The week started off a little rough.  When we landed in Cancun and I turned my phone on, I had 4 emails from the school that they were under a Tornado warning and they were sheltering in place.  They would not be dismissing school until the warning was lifted.  So that resulted in a set of phone calls home to make sure mom knew he would be late coming home from school and then again to make sure he got home safely.  He was home almost an hour later than usual.  Then by that night, the runny nose he had when we left had turned into an infection.  That meant more phone calls home to tell mom where to take him to get the meds he needed.  After the first day and a half, we were finally able to relax and not worry about everything going on at home.  I knew he was in good hands and would be well cared for.

Since neither Tommy nor I are particularly beach people (we can't stand sand everywhere) we pretty much stayed in the pool the entire time.  We slept late, got breakfast, went to the pool, ate lunch in the pool, hung out in the pool some more before finally getting out late afternoon to shower and change for dinner.  We spent most evenings after dinner at the sports bar in the resort, where we met a nice couple from South Dakota who had just gotten engaged.  We only ventured away from the resort twice, both times in the same day.  On Wednesday, we took the shuttle over to a sister resort to spend the day at their pool.  This resort was probably 3 times as big as ours and the pool area was amazing.  We even got a little adventurous and decided to try our hand at body surfing on their "Flow Rider."  That was comical to say the least.  When we got back to our resort, we showered and changed and took a cab to a local restaurant that was recommended by a friend.  It was very nice and the food was delicious.  We spent Thursday at the pool again and then flew home on Friday.  Of course, it wouldn't be our style of vacation if I didn't come home sick.  I ended up in Urgent Care the next day with yet another sinus infection.  It was a great trip and great time of rest.  We are already planning another weekend get-away for Tommy's birthday

School ended officially on June 5th.  However, the end of the year was beginning to get rough and JT was exhausted.  I was getting calls from school everyday to come and pick him up because he was sick.  So I made an executive decision that he was done.  I checked him out on Monday morning and told them he would be sick the rest of the week.  It was a really good decision.  We both needed the rest.

The very next week in June was Vacation Bible School at Tallowood.  Although we no longer attend church there, it was a must for JT to attend their Bible School.  It was great to take him back there everyday.  It was almost as if we had never left.  He had a great time and I enjoyed seeing old friends each day when I dropped him off and picked him up.  Of course this meant that I spent the mornings that week at Starbucks.  That is a great place for people watching and I made friends with a few elderly folks that apparently go there every morning for breakfast and coffee and to read the paper.  The rest of June was fairly uneventful.  Of course we were resting up and preparing ourselves for 3 weeks of Therasuit Therapy in July.

On June 30 (Tommy and my 13th wedding anniversary), JT, Jennifer and I headed back to Austin for 3 weeks of Therasuit Therapy.  If you remember from last year, it was not the best experience and it ended with JT in the ER, followed by 3 nights in the hospital a couple of weeks later.  But after some time to recover and a little bit better planning, I was sure we could do it again and make it a much more positive experience.  The most important change I made was renting a house instead of doing a hotel stay.  The hotel was terrible last year and I figured with a little more space and privacy, the house would serve us much better.  And it did.  It still had it's quirks and issues, but over all it turned out much better than the hotel.  But of course it wouldn't be right if we didn't have a little drama.  We drove in on the morning of June 30.  His first day of therapy was that day at 2:00.  We got to the house around 11:30 and upon trying to turn into the driveway, my "Low Ridin' Swagger Wagon" got stuck.  There was a section of gravel in the driveway and I guess my wheel hit it just right.  I don't know if it was because the car was weighted down or what, but the more I tried to get out, the bigger hole I dug.  I had to call a tow truck to come and get me out.  Thankfully they did easily and we were on time for our first day of therapy.

Therapy itself went quite well.  JT worked extremely hard.  He had a different PT than last year, but the same OT.  It was nice to get the OT's perspective on how much stronger he had gotten since last summer.  Those ladies works just as hard as JT did.  He is not the easiest of kids to work with because he is pretty strong.  Lots of things turned into a wrestling match between them.  I have to hand it to them.  They were persistent and gave JT exactly what he needed.  I would have given up 10 minutes in each day, but they stuck it out the entire 3 hours.  I know they were exhausted by the end of each day.  I learned that his abs and side muscles are already extremely strong and this causes him to lean forward and sideways often.  They worked really hard with activities to strengthen the upper back and neck muscles to get him more upright.  I didn't realize this but the more he hunches forward, the greater chance he has for developing scoliosis.  We definitely don't want that.  You could tell by the end of each week, he was exhausted and needed a break.  So the weekends were always a welcome sight.

We came home the first weekend since it was July 4th.  It was nice to sleep in my bed for a few nights.  The second weekend, we decided to stay in Austin and let Tommy come visit us.  That is another change we made from last year.  While I missed sleeping in my bed on the weekends, it was definitely nice to not have to pack everything up each weekend.  We were also able to spend a lot of time with our friends Chad, Kim and Blake.  If you don't know, Blake and JT were NICU buddies.  We have kept in touch with their family ever since and always enjoy spending time with them.  Kim always takes good care of us while we are there.

JT was able to finish his therapy this year.  Last year he got sick and missed the last 3 days.  This year we made it all the way to the end.  To celebrate, I took him to Dairy Queen where I discovered his affection for hot fudge sundaes.  We packed up and headed home Saturday morning and I was so happy to be in my bed.  While the queen bed we slept in this year was far better than the sofa bed Jennifer and I shared last year, it still did not compare to my own bed.  And of course it was great to be sleeping next to my adorable, snoring husband.

I made a cute little slideshow of our time in therapy.  It gives a pretty broad idea of the things he worked on and you can see he had a smile on his face the whole time.  Hope you enjoy it.

As I mentioned earlier, we got to spend a lot of time with Kim, Chad and Blake.  Here are a few pics of us together.

Since we have been back, I have seen a lot of changes in his mobility.  He is on his feet so much more than before.  That may have some to do with having brand new wood floors.  I think he gets tired of crawling on the hard surface and I find him often times scooting on his rear.  It's kind of funny.  But this may give him more incentive to stand and walk.  I have been making him walk more from place to place in the house instead of me carrying him.  It's helped me, and it's helping him.  Just the other day, we were at my niece's birthday party and I took this video of him.  It was great!

This week John is doing Super Place Camp.  This is the same camp he does this week each year.  It's at First Baptist Church of Houston, which is kind of a drive from our house.  The good thing is that the church has everything I could possibly need, coffee, wi-fi, fitness center and a cafe.  And yes, I have actually used the fitness center this week.  They gave the parents of the campers a 2 week pass to use it.

The rest of the summer we will be in survival mode, trying to stay occupied until school starts again.

1 in a Million

Has it really been almost 4 months since I last blogged?  I guess I'm not very good at staying current on this thing.  We have a lot going on this summer, so I'll try to do better at keeping you updated.  But for now, I thought I'd spend a little time catching you up on what's been happening.

First thing's first....Our boy turned 9 years old on May 24.  I CANNOT BELIEVE HE IS NINE!!!!  Where has the time gone?  It feels like not so long ago, we brought this tiny little guy home from the hospital for the first time.  I remember how small he was.  Now, not so much.  He's huge.  He is about 4'4" tall now and weighs about 60 lbs.  You read that right, 60 POUNDS!  And yes, I am still picking him up and carrying him.  I know I should make him walk more, but when I pick him up, he gives the best hugs, and well, I enjoy his hugs.  He just finished 3rd grade.  He will be in 4th grade next year, and I'm struggling with that one.  3rd grade still sounds like lower elementary, but 4th grade is one step away from 5th grade, and 5th grade is just too old.  He is growing up far too fast.  Last night, he was sitting with me in the recliner, snuggling before bed, and I asked him if he will still sit with me and snuggle in the recliner when he's 17.  Of course, by then, he will be bigger than me, so I'll probably be sitting in his lap.

We had a fun party planned for him with many of his friends and it was going to be on his actual birthday.  We had reserved a place at the park where we had his 1st and 2nd birthday parties.  But he came home from school the day before with fever, and he woke up the next morning, still running fever.  So we had to cancel his party.  I was very sad to cancel it.  We plan to reschedule, but we have not decided on a date yet.  Fortunately, he just had a sinus infection and after a course of antibiotics, he is doing much better.  We go this afternoon to see his pediatrician for his 9 year well visit.  I still can't get over him being 9.

Onto the next thing, and that is his health.  Health wise, he is doing fantastic.  He's growing like he should and there have been no major illnesses, and thankfully, no more hospitalizations.  I get asked all of the time what John has.  In other words, does he have some kind of genetic syndrome that explains why he is the way he is.  And I always have to answer that question with "he's just developmentally delayed."  Well not any more.  We officially have a genetic diagnosis after 8 years of searching.

You may remember that last spring, we had some blood work drawn on John as well as Tommy and me.  They were going to do genetic testing called Whole exome sequencing.  Please don't ask me exactly what that means because I just don't know.  But in a nutshell, they take a close look at all of his pairs of Chromosomes and check for any abnormalities.  This could mean chromosomes that are completely missing or that maybe has a missing piece.  The process takes 4-6 months so we didn't sit around everyday waiting to hear results.  We finally went in to see the Geneticist in August and he went over the report with us.  There were several "affected" Chromosomes in John's DNA, however, for everyone of his that was affected, either Tommy or I had the same one that was affected.  Because we do not have the needs that John has, none of these explained why John has the issues he has.  So the doctor requested the lab send him the expanded report so he could take a closer look.  And on Halloween day, I got the phone call we've waited for 8 years to receive.  It was Dr. Brown and his words to me were "We think we have an answer regarding John."  I couldn't believe it.  I never thought we would ever get that answer.  Of course that would mean that they would need to check his DNA to make sure that specific gene was indeed affected and confirm the diagnosis.  A few months later, we went in for a visit and sure enough, it was confirmed.  Our boy has a genetic syndrome known as Ohdo Syndrome.  Never heard of it?  Neither had we.  In fact, neither had his doctor.  We always knew John was 1 in a million, but actually, that's about the percentage of people in the world with this syndrome.  It's very rare, and relatively new as far as genetic syndromes go.  It was discovered in the 1980's and then later a variant of Ohdo Syndrome was discovered and they call it Ohdo/SBBYS.  This is the variant that John has.  And it explains everything.  It explains his respiratory issues, and his low muscle tone.  It explains the ptosis in his eyes that he had surgically corrected at 3.  It explains his global developmental delay as well as his intellectual disabilities.  It explains why he has two teeth that do not have permanents and it explains why he's a poor feeder.  And we discovered a couple of comical anomalies associated with his syndrome.  Apparently, people with Ohdo/SBBYS has extra long thumbs and big toes.  We never really thought about it before, but he does have these too.  In fact the only thing he has that is not explained by this syndrome is retina problems.  But there are a variety of other things that could have caused that.  The good news is there is no real life expectancy attached to it, meaning he could live a full life.  Some people with this syndrome have heart and kidney issues as well as missing or underdeveloped knee caps.  John doesn't have any of these things.  Because he doesn't have the heart or kidney issues, that makes it more likely that he will live a long and full life.  And, there is nothing that we haven't already been doing that we should have been doing.  And the especially interesting part about it is that this syndrome was not inherited from either me or Tommy.  It started with John.  So I think that maybe takes a little guilt off of both of us since it didn't come from either side of the family.

We have found a group on Facebook of parents who have kids with Ohdo Syndrome.  It's been interesting to hear their stories and how similar we all are.  In fact, these kids all have similar facial features, so it's like they all have a bunch of look-a-likes running around out there.  There is one little boy in particular who is a little younger than John and every time his mom posts a picture of him as a baby, it could very easily be mistaken as a picture of John.  They looked that much a like.

In other news, we had another successful year of Special Buddies at Shafer Elementary.  We had a kick off event in October, a Bowling Party in December, a Winter event in December, a Special Buddies Field Day in May and an end of the year Zumba party in June.  The kids all had so much fun together and you can really see the connection they each have made with their buddies.  And on top of that, Emma's Special Knight Project successfully raised enough money to purchase the Sway Fun Glider and have it installed on the playground.  We had a ribbon cutting ceremony for it in May and we made the news again.  Now all of our kids, regardless of their abilities can play together at recess.

John is in VBS this week at Tallowood so I am hanging out at Starbucks until it's time to pick him up at noon.  That is why I finally had the time to sit down and blog.  I'm sure I've left some things out, but I hit the highlights.  We will be going back to Austin on June 30 to spend another 3 weeks doing Therasuit Therapy for John.  He did so well with it last summer, we thought we'd give it another go.  This time, instead of fighting with a hotel and having the drama that comes with that, we have rented a 2 bedroom house.  I have corresponded with the owner via email and he is such a nice man and has been more than accommodating for us.  Our friend in Austin even met the owner at the house and checked it out for us to make sure it meets our needs.  So we will have more space to spread out and hopefully avoid the germs that comes from a hotel room.  I hope to blog more this summer and keep you posted on therapy.

Major Milestone

If you have followed our journey, even the littlest bit, you know that our son, John, is severely developmentally delayed.  This was not something we knew would happen when he was born.  This was not something we knew would happen when he was 6 months old.  This was not even something we knew would happen when he was 1 year old.  But some time after his 1st birthday, we began to realize this is what we had in store for us.  John would never catch up with other kids his age.  I don't think for a long time we even realized how severe it would be, but we did finally realize that he would not develop at the same rate other kids his age would.

One of the areas John is delayed is his oral motor skills.  You wouldn't know it by looking at him now, but John was considered a "poor feeder" as a baby.  And I guess as far as oral motor skills go, he still is a "poor feeder".  He eats well these days, but not the way he is supposed to eat.  John cannot chew food.  He has to eat food that we puree for him.  Now he can chow down on some pureed food, but he just cannot chew it.  He has made strides in his oral motor skills as far as being able to appropriately move his tongue around in his mouth, but he cannot make the cognitive connection it takes that when food goes into his mouth, it needs to be chewed.  His first instinct is to swallow.  This habit is further reinforced by the fact that he eats pureed food.  So it's kind of a catch 22 he's in.

Have you ever thought about all of the things you have to do with your mouth in order to eat and drink?  Probably not.  It's always just been as automatic as breathing for most of us.  But if you break it all down, it may be one of the most difficult things to learn.  And unless you have ever watched someone struggle to learn how to do it, you probably didn't know how complicated it is.

The other thing John has never been able to do is drink from anything other than a bottle.  And I can remember a time when he couldn't even do that.  Most babies are born and within a few hours, figure out how to suck for nutrition.  Some may even take a little longer than that, but most children figure it out pretty quickly.  It's a natural instinct that they are born with.  John wasn't born with that instinct. He literally had to start from the beginning.

When he was in his little incubator in the NICU, the Occupational Therapist would come in and work with him.  She would put a glove on her hand, and take her pinky finger and just put the tip of it in his mouth.  Almost immediately, his heart rate and oxygen would drop and she'd have to remove her finger.  She did this for several days before he finally could tolerate having her finger there.  Then she focused on trying to provoke his suck reflex.  This took some time, but again, she was just using her pinky finger.  He eventually got to where he could suck on her finger and he even used a pacifier a little.  But he couldn't keep it in his mouth.  We would have to hold it for him.  The next step was to get him to tolerate having any liquid in his mouth.  She would use a syringe and put just a tiny drop of liquid in his mouth.  Of course now he has to figure out that it has to be swallowed.  When he was able to tolerate liquids, we started trying to use a nipple from a bottle.  He was not good with this at all.  His suck reflex just wasn't strong.  So they introduced this special bottle to him.  It's called a haberman and this is a bottle that is typically used for kids with cleft pallets.  It does not require him to suck.  Instead he can bite down on the nipple and the liquid would come out.  He used this bottle for a while.  But he still was only able to drink a tiny amount before he would tire out.  I can still remember the day he drank a whole ounce.  I was so excited that I called my whole family to tell them.

By the time John came home from the hospital at 3 months, he was still drinking from the haberman and he was tolerating about 3 ounces at a time.  Around 6 months old, I noticed he was not drinking 3 ounces any more.  He was tiring out much quicker and we would have to give him the rest through his feeding tube.  Around the same time, he was admitted to the hospital because of his sleep apnea.  While at the hospital, we went to give him a bottle.  We decided to use a regular nipple, but instead of grabbing a regular one, we accidentally grabbed a NUK nipple.  This is more of a flat shape instead of round.  Suddenly he drank all of his milk.  So the next time we used the same kind and he did it again.  We went home and replaced all of his regular nipples with NUK ones.  He started doing really well.

Fast forward 8 years and John is still drinking all of his fluids from a bottle with a NUK nipple.  We have worked with OT's for years trying to get him to use something else.  We have bought just about every kind of cup on the market, thinking this would be the one he could use.  Sippy cups never worked because he would just bite on the spout.  We tried using just an open cup, but it was really hard to control the flow and he couldn't handle large amounts of liquid in his mouth at a time.  We always kind of felt like the straw was going to be his best option, but again, biting the straw was an issue.

It is not convenient for a kid to drink from a bottle.  He is very particular about where he drinks and what position he's in and who gives him a bottle.  When we go out somewhere, we have to time our outings to where we can be home before his next bottle.  And if we go to a restaurant, he can eat plenty, but he gets very little liquid in his mouth until we can get him home and give him a bottle.

For a while, his therapist has been able to get him to suck on a straw occasionally, but never with much consistency.  And when I would try at home, he would just bite on it.  It was really frustrating.  But a few weeks ago, I noticed by accident that he got a couple of good sucks on a straw when I was working with him at home.  So I began working with it pretty hard.  He started getting better and better.  Ladies and Gentlemen, I am very proud to announce that after 8 1/2 years and many years of therapy, we now have a straw drinker.  It has finally clicked for this boy and he is now able to eat all of his food and drink all of his milk in one sitting.  I don't even have to give him any cues any more.  I just put the straw in his mouth and he knows what to do with it.  It is simply amazing to watch.  If you have never watched someone struggle with this, then you can't truly appreciate what a huge milestone it is. But my husband used a pretty good analogy earlier that might help you understand.

This is what he said:


Over the weekend at JT's baseball game his team was down by 3 runs with bases loaded and 2 outs. The coach called in John to bat and he hit a GRAND SLAM!!! His team went on to win 4-3. John was voted MVP of the game.


Now obviously that didn't actually happen, but that is exactly how exciting it is for us. We are such proud parents. This little boy never ceases to amaze us. He just keep going and working and he never gives up. Not ever. He is absolutely the definition of persistence.

More Special Knight News

Just a brief update on fundraising for Emma's Special Knight Project.  Emma's mom, Heather, spoke with the principal of our school about raising funds.  Basically, each school determines the amount of fundraisers they can have during a given school year.  They don't want to constantly bombard the parents with more and more fundraisers.  I understand this, of course, as a parent.  Unfortunately, our school already has all of it's allotted fundraisers accounted for, so we are unable to raise any more money as a school.  However we are able to continue to raise money privately.  So that is what we are doing.

Heather also spoke with a lady from Be an Angel last week and she seems very eager to help us.  Hopefully that will get us to where we need to be.

The good news is that we have already raised over $5,000.  I am blown away by that amount and by the generosity of everyone who has supported us.  You all will never truly know how much it means to us.  Tommy, John Thomas and I want to say Thank you, Thank you from the bottom of our hearts.  And I know that Heather and Emma echo that sentiment.

Because we cannot fundraise at school, it is so very important that we continue to get the word out.  The wider we share this project, the better chance we have to meet our goal.  When you go to the link, Heather has added some updates and there is even a picture in the gallery of the structure we are trying to purchase.  I think it's a great picture of how much fun it can be.  And just in case that picture isn't enough, here is a video of a group of kids enjoying their time on it.

This project means so much to John, Emma and the rest of the Special Buddies at Shafer.  I cannot even describe the connection each of the buddies have made.  So to be able to do something so much fun like this together, would be awesome.  And here is the cool thing.  We have 19 life skills kids and each kid has 2 buddies.  So that is about 57 total kids that are involved in the program.  However, there are even more kids that would have loved to be a Special Buddy, but we just didn't have the space for them.  So having playground equipment they can all play on together is a way for those other kids to spend time with our life skills kids and will help bring the entire school even closer together.

Thank you again for your support, and please help us to spread the word far and wide.


http://www.youcaring.com/other/emma-s-special-knight-project/105598