Caping on

Today was our follow up appointment with ENT since we were discharged from the hospital last week.  During the course of the last week, I have been cleaning his wound site twice a day and applying a new dressing each time, as well as changing the packing every 1 1/2 to 2 days.  It is obvious that the wound is healing.  It is not nearly as deep as it was.  Each time I change the packing, I am putting less packing back in because that is all that will fit.  Also, the wound is not as wide.  The hole is slowly closing.  It truly is healing from the inside out. 

I anticipated seeing the doctor today and she would tell us that the wound is healing nicely and to just let it be.  But as my mother says, she always does opposite of what I think she is going to do.  I guess that is why she gets paid the big bucks.  She thinks it will be a good idea to take him back into the OR and put a few stitches in to close the hole.  We discussed this last week before leaving the hospital.  She was hesitant in doing so then, mainly because the tissue was infected.  She was afraid that because of the infected tissue, and because of how much John moves around throughout the day, the stitches may not hold and it may open up again.  Another reason she was hesitant is because of the size of the wound and the depth.  She wouldn't actually be able to close it all of the way because there would be too much space behind the stitches and that would increase the chance for further infection.

The reason she changed her mind today is because the tissue is not infected like it was.  It is healthier.  Also, because the wound has healed partially, she may be able to actually close the whole thing and it would be okay.  It would only be a surface closure.  She also is concerned with what the scar will look like if we continue to let it heal like it is.  She thinks she can clean it up a little and make it look a lot better if she closes it with sutures.

Of course, she wants to do it next week and of course the only day she is in surgery next week is Wednesday.  That means we will have to reschedule our trip to Austin to see the Rehab doctor.

It is frustrating that this is still an ongoing saga.  I had no idea it would turn into the drama it has.  But just like every other curve ball we have been thrown, we adjust to it and move forward.  I am really glad that we are getting this all done before school starts.  I'm REALLY glad I thought ahead and requested we do the initial surgery 2 weeks ago.  Initially we were going to wait until today to schedule the surgery and that would have put this happening after school started.  This would have all just been a mess trying to handle if he were in school.  I am really hoping this is the last hurdle, that the stitches will hold and there will be no more set backs.

As usual, John has been amazing.  He has been especially giggly the last couple of days, even though he has been to the doctor each of the last two days.  He's the only kid I know that enjoys going to the doctor and starts giggling the minute we pull into the parking garage. 

Keep Calm and Cape on!

Welcome to Holland...A different Perspective

If you are new to my blog and haven't been following from the beginning, I thought I would take you back and share my very first post and offer a different perspective.  I started this blog 4 1/2 years ago partially for therapeutic reasons and partly to share with others who may be going through some of the same things.  I thought maybe they could find comfort in some of my words.  So let's take a quick look at the very first post I ever wrote.


For a while now, I have thought about starting a blog.  I just never knew exactly what I had to write about.  I decided that being a mom of a son with special needs gives me lots to say.  I also find that sometimes I have things weighing on my heart that I don't share with anyone else.  This gives me a forum to share those thoughts and feelings instead of keeping them bottled up inside.  And maybe someone who is going through a similar situation will stumble upon this blog one day and find something that I have written to be of comfort to them. 

I'm sure you are wondering about the title I have chosen.  Let me explain where it came from.  A little over 5 years ago, shortly after my son was born, I received an email from a friend.  We were just coming to terms with the fact that our little boy wasn't exactly what we were expecting.  This email contained a story, told by Emily Perl Kingsley, a mother of a child with disabilities.  The story was titled "Welcome to Holland" and it perfectly described how I was feeling.  It goes like this:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

After reading this story 5 years ago, all I could focus on was landing in Holland instead of Italy.  That's how I was feeling.  I had dreamed for so long about having a baby.  I dreamed of holding him for the first time in the delivery room, and leaving the hospital with him in my arms.  I dreamed of all he would become and all of the things he would do.  I dreamed of hearing his first words and watching his first steps.  I dreamed of teaching him how to play baseball or how to throw a football.  And now, none of that was going to happen.

But now, 5 1/2 years later, I have learned to focus on the rest of the story.  I've gone out and bought new guide books and I've learned a new language and I have met some fabulous people who I otherwise would have never met.  I've learned to enjoy Holland.  And even though I still dream of going to Italy someday, I would not trade the time I've spent in Holland for anything.  It has shown me a strength I never knew I had and I have learned to do things I never thought I could do.  So Holland is where I am, and Holland is where I will stay.

It's been 10 years since we landed in Holland.  Holland has become home.  It's no longer a place we are just visiting.  We have learned to speak the language (medical lingo).  We have met lots of people and it turns out, while Holland can at times have harsh conditions, the rest of the time it's beautiful.  We have seen our boy grow up and make friends and be more excepted than we ever thought.  I have become more comfortable around other residents of Holland and I try to welcome others who are just landing here unexpectedly.  Today I came across a different perspective, one from a sibling of a child with special needs.  I thought I would share that with you.

When I was young, I heard the essay, “Welcome to Holland,” by Emily Perl Kingsley, which compares being a mother of a special needs child to planning a trip for Italy, only to find your plane has landed in Holland. Both have their beauty, but Holland was not what she had in mind.

I understood that this poem resonated with a lot of parents, but for some reason it never resonated with me. “Surely it should,” I would think. “After all, I’m a sibling of special needs kids, and that’s close to a parent, right?”

Wrong.

After weeks of mulling it over, I’ve finally realized why: I grew up in Holland.

As a younger sister of a brother with special needs and sister of 13 siblings, 11 of whom have special needs, I was an American born in Holland.

Although I always knew I was American, Holland was home. In a land where medical procedures roll off the tongue and auto-correct in your texts, I learned to speak the language of prescription medication. I learned to appreciate the celebrations, like the getting-off-medication parties and the happy tears when a 4-year-old with delays says your name. I learned the culture, where co-sleeping, oximeters, doctor’s appointments, wheelchairs, hearing aids and restricted diets are the norm.

I love Holland. It made me into the person I am today. It’s made me appreciative, compassionate, more gentle, more forgiving and more willing to serve. It’s made me more aware of the people around me, and most of all, it’s given me many friends who, too, live in Holland.

Here’s the problem: There’s a big world outside of Holland.

The world outside of Holland is a fast-paced race to the top, where test scores and high pay reign supreme. Where we always need to know who is the best and where the different, the odd and the outcast are looked down upon with pity or distain.

As I grew up, I thought there was a lot that I was missing from not being around “normal” people all the time. But as I grew up and ventured out of my little Holland, I realized something…

I don’t like life outside of Holland much.

I don’t like a world that can’t or won’t accept all people, regardless of their ability. I don’t like a world that thinks my siblings are a waste of resources or that intelligence is measured by a score on a standardized test. I don’t like a world that won’t stop to see the beauty of my siblings’ smile, their life and their joy.

As an adult, a lot of people come to me to ask about what having siblings with special needs has “done to me.” I won’t lie, it can be hard. It’s true you might have to share a room and might have to give up extra things. It’s hard sometimes to have to pick and choose activities and hard to have parents split between home and hospital. But the more I grow up and assimilated myself into the real world and the work force, I realize how blessed I have been to have been gifted these siblings. I believe God chose them and brought them to my family for a reason. They have taught me grace, peace, love, joy, sorrow, faith, and so much more. They have taught me to sacrifice myself for the needs of others, to consider others above myself, to celebrate small victories and to always show love.

This was posted on the Facebook page called The Mighty and was written by Cassie Ellsbury.  I thought about what she had to say and found her perspective a very interesting one.  For her, she has never known a world that didn't consist of doctors appointments and therapies.  The language spoken here is her native language.  She understands all of the medical jargon without needing anyone to translate for her.  And she's right, the outside world can lack compassion and understanding and it's difficult to understand why others don't see your loved one the way you do.  We don't have other children, but for those of you who do, I imagine they feel much the same way.

But as a parent, my perspective is the same as it was in the beginning.  The poem still resonates with me.  I still wonder what it would have been like to carry my baby out of the hospital in my arms when he was just a few days old instead of him leaving in an ambulance when he was 3 months old.  I wonder if he would enjoy playing sports as much as I did and if he would be a good athlete.  I wonder what he would be really into and what kinds of posters he would want on his bedroom wall.  Those are the things he is supposed to be doing at this age.  As long as I stay in our little cocoon, it's perfectly normal to me that he still wears a diaper and doesn't talk.  It's okay that he crawls and scoots around the house instead of walking.  But when I get around other kids his age and see the things they are doing, I am very acutely aware of just how far behind he is.  Typically developing 10 year olds are becoming independent little people, while my son is still completely dependent on me. 

We have made a normal life for ourselves here in Holland.  It may not be normal to others, but it's normal to us.  And it has it's upside too.  John thinks it's a party when he has to stay in the hospital.  I don't have the scared or crying child when we have to be there.  And when they start an IV or do things like pack a wound in his neck, he doesn't even flinch.  He has been stuck with needles so much in his life, that it doesn't scare him. 

And I rather enjoy the life we have made for ourselves here.  I have learned so much from it and I feel I have become a better person and much more compassionate person because of it.  I have learned that I can't always live within my comfort zone.  And when the conditions get a little harsh here, we have our moment of panic and "how are we going to do this" and then we just do.  We make a new normal and then we move along with life.  But as much as I love our life and we as much fun as we have here, I still find that it's nice to take a little vacation to Italy once in a while.  And, while it's nice to get away, I always find myself ready to return home to Holland.

It didn't go as planned

A lot has happened over the last week, since my last post. It's been kind of a wild week. What started out as a simple procedure, has turned into 3 nights in the hospital. Here's how it all happened. We went to the hospital on Wednesday as planned for John's trach closure surgery. The first sign that this was going to be a wild week should have been when the fire alarms went off WHILE HE WAS IN SURGERY. There was no actual fire, and it didn't affect the surgery, but everyone in the waiting room had to go and stand behind the fire doors until the all clear was given. It was kind of a crazy thing to happen while your child is in surgery. Surgery went well. Apparently it was more involved that we originally thought. I thought it was just a small procedure, but it was definitely a surgery. Because of that, he actually had to stay a night in the hospital. That is apparently normal with this surgery, but we just weren't completely aware of that ahead of time. So we were not prepared. But it wasn't a big deal. Tommy went home and got John and I what we needed and we stayed one night. The hard part was that we didn't get our own room. We got a bed in a pod, with 3 other beds. Two of those beds had patients so we did not have a restful night. Also, there was no bed for me, only a chair that didn't recline all the way. The only actual sleep I got that night was when I crawled in bed with John. I should have just done that all night. After the surgery, the doctor left a drain in his neck to drain off any excess fluid. Early Thursday morning, one of the residents came by and took the drain out and put a steri strip over the hole so that it would close on it's own. We came home like everything was normal. We just had to keep the incision site clean and dry over the next several days and eventually the steri strips would fall off on their own and it should all be healed. Monday, John started Super Place Camp. This is the same camp that he has attended in August for about 7 years. It is held at a different church each year, and I usually spend the morning at Starbucks while I wait to pick him up. I dropped him off Monday morning, then went to Starbucks. When I picked him up about 12:15, I immediately noticed that his neck around the surgery site was red and puffy. That concerned me that he probably had an infection. Then I noticed a little bit of leaking from the site. By the time I got him to the car, it was full on oozing. So I drove him straight to Texas Children's ER. We got into a room right away and it didn't take long to see a doctor. They called the ENT team to let them know we were there. The same resident who was in John's surgery the previous week and who had taken his drain out before we came home, came to see him. By then, some of the steri strips had come off when the doctor was trying to clean the area in order to get a look and you could see a small hole. So the decision was made that they would admit him, start him on IV antibiotics and they would pack the wound and let it heal itself from the inside. With an active infection, it's not a good idea to suture the hole closed because that would just make the infection worse. You want the excess fluid to drain. So we got a room, this time on a different floor and we had our own room. Yay!!! They started the IV antibiotics and we were planning to be discharged the next day. When the doctor came in the following morning to remove the old packing and put new packing in, I noticed while he was packing that the hole opened wider than it was. That really concerned me and honestly it was really gross to look at. John's ENT came by to see us later that morning and she decided to keep him one more night so he could get more IV antibiotics. So we settled in for another night. By that evening, the site just looked nasty and I was very concerned about our course of action and what it would mean for him starting school. The same doctor from the morning came back that evening to change the packing again and he told Tommy and I that we should not cover it with a dressing. I couldn't see him going anywhere with a gaping hole in his neck. The next day, our ENT came back to see us and gave us our options. Either, we could go home with oral antibiotics and the supplies to pack the wound ourselves at home and let it heal itself from the inside, or we could go to the OR and she would put a few stitches in the wound. She wouldn't close it completely, but she could make it smaller. But she was concerned that because the tissue there was infected, it wouldn't hold the stitches well and it may make the infection worse. So we chose to go home and take care of the wound at home. We have a follow up appointment with our ENT next Wednesday and she'll check to see if there is any progress in healing. If not, she would consider going ahead and doing the few stitches. In the mean time, we are cleaning it a couple of times a day and changing the packing every other day. And we are putting a dressing over it to keep any dirt and bacteria from getting in there. She told us if things got worse to call her and she would see him right away. She even gave us her cell phone number to call her on. She is a pretty amazing doctor. She has taken care of John for all of his 10 years and is always so great with him. So it turns out what actually happened is that the incision didn't open back up. The hole with the drain seems to never have closed all the way. When he got the infection, it started draining and the hole opened up wider. The hole is actually bigger than it was when he had his trach. It's just really weird. But through the entire process, John has been completely fine. He has never run a fever and he never even acted like he felt bad. He was his typically happy self, and was having a great time flirting with all of the pretty nurses. This kid is something else. Hopefully we are through the worst of it and he can finally start to heal. I think I will keep him close to me until school starts, just to be sure nothing crazy happens again. With the amount he moves around, there is some concern with how long it will take to heal completely. Thanks to everyone who called, texted, sent messages and most of all prayed for us. It's so tough being in the hospital with your child, but knowing we have so many supportive friends and family, makes it all a little easier. Hopefully now we can just enjoy what's left of our summer.

End of an Era

It was 10 years ago today, when we sent our 2 month old baby boy into surgery for a tracheostomy.  I remember that day so vividly.  I remember that our surgery time kept getting pushed back, which meant even longer that he had to go without anything to eat.  Try explaining that to a 2 month old, especially one that was tube fed.  He probably didn't really know what it meant to be hungry.  All he knew was that every 3 hours, his stomach would suddenly get full, with no idea how that happened.  I remember spending a lot of time that day holding him, knowing that our life was going to change so much in a matter of hours.  I remember my parents being there when we sent him off with the nurse, and how much I cried when I had to hand him over.  My mom and I both cried.  I remember seeing him in the NICU for the first time after the surgery was over, and thinking that he looked like a porcelain doll.  He had been given a sedative and a paralytic drug so that he would be completely still while the stoma, (trach hole) healed.  I remember how hard it was to sit next to his bed and not be able to hold him or even touch him.  For a week he laid in the bed, without me being able to hold him and without him being able to move at all.  It was the hardest week of my life.

It's been 3 months since John got his trach taken out.  Going into it, we had no idea what to expect.  We didn't know if he would tolerate not having it.  There was always a possibility that he would either need to use a CPAP mask at night when he slept, or worse case, have the trach put back in.  One month after the trach came out, John had a sleep study.  This would determine how he was doing without the trach and whether or not he could continue without it.  The results came back a few weeks later and were better than we imagined.  He went from having more than 200 apnea events per hour many years ago, to only having 3 apnea events per hour.  His oxygen stayed stable throughout the test and the doctor said we would repeat it in a year and see if he's still doing well.  The whole decannulation process went easier than we imagined.  Even losing the night nursing was easier than we thought.  John sleeps in a big boy bed all by himself now, and he loves having the extra space.  I get up once during the night to change his diaper and then Tommy checks him when he gets up for work in the morning.  It has all gone so smoothly.

Tomorrow, we will officially close the book on this chapter of our lives.  10 years and 1 day after handing my baby boy over for surgery, I will once again hand him over to a nurse, this time to have the hole in his neck stitched closed.  Typically, the hole closes on its own, but we were pretty sure that because he has had his for so long, it would not close on its own.  So with a minor procedure tomorrow, his ENT will stitch the hole closed, marking an end to an era.

A lot of times, when some major event in one's life takes place, they say it is bitter sweet.  For us, this is not bitter sweet.  It is just sweet.  Life without the trach has been fantastic.  Sure, I would like not having to get up at 2am every night to change a diaper, but that is a small trade off for the joy we have experienced the last few months.  All of this will culminate in one final event.  We are planning a trip as a family of 3 to Lost Pines Resort in Bastrop, TX for a weekend.  While there, John will be able to spend time in the pool and floating the lazy river, something he was unable to do as long as he had a hole in his neck.  I can't wait to watch him lounge around the river.  I know he will enjoy it and mom and dad will enjoy, just as much, watching him. 

There were honestly times when I thought this day would never come, but now that it has, what a SWEET, SWEET day it is!

Therapy Results

It's the end of July, and another year of Therasuit Therapy is behind us.  We made it through all three weeks for the 2nd year in a row.  If you remember, the first year, he got sick the last week and we missed the last 3 days.  So, in our mind, it's a success just to complete the full 3 weeks.  I will also say that it seemed to go really fast this year.  I think leaving early the first week for Tommy and my trip to Colorado really helped.

John did really good work throughout the time he was there.  He worked harder, I think, than he's ever worked in his life, and on occasion, he let us know just how he felt about it.  Spoiler alert, he didn't like it.  As I said, each session starts off with him doing pulley weights with his arms and legs.  What I didn't mention is that each week, the weight increased.  So by the time he would finally get over the initial soreness, the weight would increase and he would be sore all over again.  Usually by Thursday each week, he was spent.  Some days he spent more energy fighting against the therapist than he did actually doing the therapy.  But the therapists were awesome.  No matter how hard John fought, they fought just a little harder.  They never gave up on him and they sweated just as much as he did.  I joked with them that they did not need to go to the gym on the days they worked with John.  The funniest day, though, was one day that he had just had enough.  It was the very end of the session and he spent the last 30 minutes refusing to do anything the PT wanted him to do.  She even tried to get him to just lay on his belly so she could massage his back, and he wanted none of it.  He started crying when he couldn't get his way.  So he crawled over to his walker, stood up in it, and walked himself over to the door.  If he could have gotten the door open, he would have walked right out of that room.  It was really pretty funny to watch.  But no matter how stubborn he was getting, anytime the therapist pulled out the walking sticks, he was ready to go.  He really liked walking with them.  In fact, we only used his walker once the entire time we were there.  He by far preferred the sticks.

We have begun our second week home since therapy ended.  I have to say that I LOVE sleeping in my own bed at night and not having to make that drive to Austin each Sunday.  But is it weird, that I kind of miss being there?  I mean, Austin is a weird town, but it's also not a bad place to hang out.  And I wish, wish, wish, he could go to therapy at that clinic on a weekly basis.  I think if he had those therapists once or twice every week, he could really make some big progress.  They are so good with him, and he needs someone who isn't going to give in when he gets stubborn.  Also, the PT mentioned a doctor that comes to the clinic and sees their patients.  This doctor is a Physical Medicine and Rehabilitation doctor that gives recommendations for the types of therapies they think will be most beneficial to a patient.  John sees a doctor like that here in Houston.  But I wouldn't mind taking him back to Austin and letting him see someone with a fresh set of eyes.  Also, he would see him in a therapy setting and get a better idea of John's movements and what might work best for him.  So that is something I'm considering doing before he goes back to school.

Since we have been home, I've already been asked by a few people whether or not we have seen any progress since his therapy.  I have learned over the past few years that John is the type of person that has to bring home everything he has learned and process it in his own way and his own time.  Usually, we don't start seeing much change for a couple of months, and then he'll start doing big things all at once.  This year seems to be a little different.  We are already seeing some changes in him.  For example, he is really wanting to be on his feet walking a lot more.  Also, before he went to therapy, he tended to scoot around the house on his bottom.  While he is perfectly capable of crawling, I think the scooting is just easier on his knees.  The therapists wanted us to emphasize crawling a little more because it helps him to keep his back straight, and that is a point of emphasis.  We haven't had to correct him much, because since he's been home, he has done more crawling than scooting.  So as hard as he fought against the therapists, he really was learning from them and he's already implementing that into his daily routine.

Yesterday, I was sitting on the couch and out of the corner of my eye, I see this little sneaky rascal, walking along the wall in the hallway.  It kind of looked like he was trying to sneak by without being seen.

Later in the day, we went to Home Depot so we could buy some PVC pipe to make his own set of walking sticks to have at home.  After Home Depot, we went to dinner, and then we wanted to take John to this new park that was just recently opened in Katy.  We have heard a lot about it and that it is a different kind of park.  When we pulled up, I immediately saw a section that John would like.  It was poles, cemented in the ground that was painted to look like grass.  But I could tell that it would be a cool place for John to walk though.  So that was the first place he went and boy did he have fun.

And we took some fun videos too where he was just walking along.

watch how he lets go at the end

 

 

We really enjoyed this park.  It felt like this particular part was made with John in mind.  If it wasn't so blasted hot all of the time, I would take him here every day so he could just walk.

Today, we got to use our own walking sticks for the first time.  As soon as he saw them, he got excited and knew exactly what to do with them.  We walked around the house a few times in the morning and again in the afternoon.  Apparently, walking is really funny.



 

 

 

 



So as you can see, therapy was good for him this year.  I'm going to try and take the at home program and really work hard on it, especially this last month before school starts.  I can't wait to see how much further he can go.  He really is my very own Super Hero!

Therasuit 2015

Well it's summer, 2015, and that can only mean one thing...Therasuit time!  We weren't sure if we were going to be able to come this year.  When I contacted the clinic earlier this year, I was told that all of their summer sessions filled up in two days after they opened the calendar.  They put us on a wait list.  After John got his trach out in April, I got back in touch with them and they told me that a spot opened up.  And it happened to be the exact session that I wanted.  Sounds to me like it was meant to be.  Then the scramble was on to try and find a place to stay while we are here.  Fortunately, we found a place at a decent rate and booked it. 

John and I arrived yesterday afternoon.  The place we rented is much smaller than I was anticipating.  But for just the two of us, we are making due.  Besides, we really don't intend to spend too much time here other than to sleep.  But the best thing about this place is that it is less than 5 minutes from the clinic.  If you have ever spent any significant time in Austin, you will know that traffic is not friendly.  Of course it's not Houston traffic, but it is weird in the sense that there is traffic at all times of the day, not just during morning and evening rush hour.  So being so close to the clinic, and not having to actually get on any highways to get there, is a pretty special thing.

One difference between this year and last is that his therapy this year is from 9am to 12.  Last year, he was having therapy from 2-5 pm.  I am kind of excited about the morning therapy slot.  Yes, it means that we can't really sleep late in the morning, but John isn't really much of a late sleeper anyway.  And generally, I don't like to get up and be in a hurry to get ready.  The afternoon session allows us to take our time in the morning and kind of veg out instead of rushing to get ready.  But being this close to the clinic, we really don't have to rush.  Once we woke up this morning, we lazed around for about an hour before we started getting ready.  We left the house at 8:40, ran through the drive thru at Starbucks, and still made it to therapy 5 minutes early.

I could tell pretty quickly once we got into therapy that mornings were going to work out well for John.  Mornings are really his best time of day.  He's well rested, he's happiest, and he's more focused.  He was in such a good mood this morning, and he was excited to be there.  He even giggled when we pulled into the parking lot, which is usually a sign that he recognizes where he is.

During the course of a week of therapy, John sees a physical therapist for 3 days and an occupational therapist 2 days.  Today we started with the OT.  We are very fortunate that we have had the same OT for each summer that we have come.  Her name is Julie and she's fantastic.  It's great to have someone who knows him.  One reason is because she has an idea of what to expect from him and how to handle him.  It saves a lot of time trying to figure out the best way he learns and she can jump right into work.  Normally, a therapist will take a good 30 minutes or better of evaluation time, asking questions and watching what he can do before starting the actual therapy.  So it saves significant time when she already knows him.  The other good part of having the same therapist, is she can compare how far he's come and how much stronger he is since she last saw him.  During the course of the year, it's sometimes hard for us to tell that he is making any significant progress.  But when I bring him back here each year, I have things to compare him to and since she hasn't seen him in a year, she can tell the difference.

Therapy starts the same way each day.  The therapist lays John down on a table in a open cage and uses pulley weights to work on strengthening his arms and legs.  That takes 1 to 1 1/2 hours to finish.  Then they put John in the suit.  The suit is a compression suit that uses bungee cords.  The bungees are used to help cue certain muscles, depending on which ones the therapist wants to use.  So if they want a particular muscle to kick in, they can tighten the bungee associated with that muscle in order to cue it.  Once in the suit, they do lots of different exercises with him. 

The focus with John is the same this year as last year, to strengthen the muscles in his upper back and neck area in order to get him sitting up straight and to keep him from hunching over so much.  His abdominal muscles are pretty strong already, and that is why he seems to sit hunched over.  So most of the exercises they will be doing will be focused on that part of his body.

Today, after getting into the suit, John was put back in the cage in something they call the spider.  The spider is a set of bungees that attach to the cage and then to a belt around his waste.  They can use up to 8 bungees, hence the name spider.  It is like giving him 8 extra legs.  Last year, when John would get in the spider, she would try and get him to stand, but he wouldn't have it.  All he could handle doing was kneeling, or his legs would be like Jell-O and he would just collapse to the ground.  But today, he got in the spider and he stood right up and he looked great.  He wasn't completely stable but he was able to stand there without the OT holding onto him, with only the support of the bungees.  We hung something from the top of the cage for him to hold onto and keep him occupied.  I was so impressed with how well he stood in there.  And instead of using all 8 bungees, there were only 6.  So he had less support than normal.  He spent probably at least 30 minutes in the spider and didn't fade. She would make it move every now and then so he would have to try and correct himself and find the center again.  He worked so hard and I was super impressed with him on the first day.  It makes me really excited to see what else he will be able to do.

He was pretty tired when he was done, and even yawned a lot after, but I couldn't get him to nap today.  I think after a few more days, he will likely come home and take a nap after lunch.  But he went to sleep at 8:00 tonight.

He will only have 3 days of therapy this week.  We will go home Wednesday after lunch.  Tommy and I are leaving Thursday for a trip to Denver to see Zac Brown Band.  We have really been looking forward to this trip.  It was planned before he got into therapy, so we had to work around it.  But John and I will be coming back here on Sunday evening, and he'll start back to therapy on Monday.  Next Friday, we will go home after therapy and then return on Sunday for the last week. 

I have to say what a difference it makes being here now that John doesn't have a trach.  We didn't need to secure nursing for each night.  That's great because I didn't have to worry what kind of nurse we would get.  We carried way less baggage with us this trip.  The car wasn't even fully loaded down this time.  And going home on the weekend will be much easier because there will be less to pack up each time.  We have the house rented over the weekends too, so there are some things we will be able to leave here.  We won't have to completely pack everything each weekend.

Here are a couple of pictures I took of him in the spider today.  And I also have included a video.  Tommy posted a video to Facebook today, but this one is a little different.  This was my favorite part of therapy today.

You can see she doesn't have any hands on him.

A Sense of Purpose

Have you ever wondered what exactly your purpose on this Earth is?  For some of us, it's pretty clear.  Doctors and Nurses seem to have a purpose to help the sick and mend the broken.  First responders such as police, firemen, paramedics, and military personnel, have a purpose to serve their communities and protect it's citizens from harm and provide help when needed.  Minsters and Missionaries have a purpose to spread God's word to the world.  But where do the rest of us fit in?

Most moms will say that their purpose is found in their children. We are here to set an example for our children.  We try on a daily basis to raise our kids to know right from wrong, We want to teach them to be kind, compassionate, smart, generous little people so that they will grow up to be kind, compassionate, smart generous big people.  We want them to have an impact on the world.  We want for our children, a better life than what we had.  Maybe our child will grow up to be President and have a profound impact on our country.  Maybe our child will grow up and discover the cure for cancer.  Maybe our child will grow up to be a fireman, who pulls a child out of a burning building, allowing that child to grow up and do amazing things.  The sky is the limit when it comes to our hopes and dreams for our children.  But what about a kid like John?  What could he possibly have to contribute to this world, to make it a better place?

We had dinner last weekend with a family, whom we love dearly.  After dinner we were sitting around talking and our friend told us that he had talked about John with an acquaintance of his.  I'm not sure if this man was a coworker or a long time friend, but with all that we had going on with John at the time, our friend felt compelled to tell this acquaintance about John.  This man, a stranger whom we have never met, decided to pray for John.  After telling us this story, our friend tells me "look at all of the people John has brought before God in prayer."  Let that sink in for a minute.  Our little John, who can't walk or talk, who can't use words to tell others about God, has in his own way brought many people, near and far, friends and strangers, to their knees in prayer.  Some of these people may not regularly pray.  They may not have a close relationship with God.  But because of the impact that John's story had on them, they decided to take the time talking with God and asking his protection and healing over John.  Who knows what that one prayer might lead to?  It could be the start of a closer relationship with God that they never had.  It could lead someone who prays sporadically at best to become a prayer warrior for others.  There is no way for us to know how that one prayer may have changed the course of someone's life.  And it all started with a little boy who can't walk or talk.

There are countless other ways John has had an impact.  Some we can see, while others we may never see.  3 years ago, I spent many weeks praying that God would allow John to continue attending school at OKE.  I truly believed that was the best place for him and the teacher he had there was the best teacher for him.  I had seen so much growth from him since he started Kindergarten and I just knew that was the place he needed to stay.  But God said no, and in 2012, John switched schools to Shafer, where he still is now.  At the time I was devastated and I knew that if God wanted him to change schools, he must have big things in store for John.  So as hard as it was, I embraced Shafer and gave it a chance.  Now, 3 years later, I can see why God wanted us at Shafer.  The school has had a profound impact on us, and it turns out, John has had an impact on it and the people there.

You all know the story of Emma and her quest to provide playground equipment for kids like John, who are in wheelchairs and who cannot properly play at recess like the other kids can.  What you may not know, is the impact John had on Emma.  For a while I thought that God brought Emma into John's life to be his friend.  We all know that friends are hard to come by for kids who have different abilities.  It turns out, God also brought John into Emma's life for the same reason.  Emma was struggling socially until the day the teacher parked John's chair next to Emma's in their second grade class.  Emma found a friend in John who didn't care who she was, or what she looked like, or how she acted, or what other people thought about her.  All John cared about was being Emma's friend.  He couldn't talk to Emma, but she still knew that he was her friend, and in turn John got a sweet friend.  Of course the rest of this story is that Shafer Elementary now has playground equipment that is wheelchair accessible and because of this friendship, Emma's parents, along with Tommy and I, are working to get wheelchair accessible playground equipment at more schools.

Not only has John brought countless adults before God in prayer, but he has also helped to spark faith in kids.  We were told by one mom that the first night John was in the hospital for his decanulation, she heard her daughter upstairs in her room talking.  Thinking she was on the phone, she went up the stairs and into her room to see who she was talking to.  What she found was her daughter on her knees, praying for John to get his trach out.  Another friend told us that the moment we let them know way back in July that John might get his trach out this spring, her daughter began praying for him every day.  And everyday while we were waiting for John to get a hospital room, both of her daughters would come home from school and ask if John got a room yet.  After being told no for probably the 3rd or 4th time, her youngest daughter said "maybe we need to pray for all of the sick kids to get better."  Talk about changing my perspective.  And on the day John was finally admitted to the hospital, her oldest daughter told her that now that John is getting his trach out, she wants him to be able to talk to her.  And although she knows that when they both get to Heaven, he will be able to talk to her, she has now begun to pray that he will be able to talk to her here on Earth.  Talk about faith of a mustard seed.  Now I'm pretty sure that the parents of these girls have quite a bit to do with the kind of faith they have, but I like to think that John gives them just a little extra reason to have faith.

He has also had an impact on me and has helped bring me out of my comfort zone.  I am not the type of person who likes to lead.  I would much rather be a follower.  I like to help by doing the things people ask of me, not by making decisions and asking other for help.  But when we got to Shafer, Special Buddies was starting and I was asked to be the parent liaison.  I was not overly excited about it, but I knew the program was a good program and I figured if I didn't do it, I didn't know if anyone else would.  So I said yes.  I met our school counselor, who is the sponsor of Special Buddies, and she is an amazing woman.  With her help, we have started and maintained an amazing program that just keeps getting better and better every year.  Thanks, John, for pushing me out of my comfort zone.

I don't know what the rest of John's life will be like, but I know that God's purpose for him is not done.  My prayer is that he continues to have an impact on those around him, whether big or small.  I hope that more people feel led to go before the Lord in prayer.  And I hope he continues to make friends and can inspire a little more faith in everyone he meets.  I do know that our little guy is going to do great things.  We may not be able to see everything he does, or every life that he touches, but I know that it will be pleasing and glorifying to God.  After all, that is the purpose for all of us in this life, to bring Glory and Honor to God in all that we do.


***Just a quick update on how John is doing.  A week and a half post decanulation, and he is sleeping like a champ.  Both nurses say that he sleeps better now than he did with the trach.  His oxygen levels are staying up and he seems to be getting good quality sleep.  And John is rocking the naked neck.  His stoma still hasn't closed on it's own, and probably won't.  We have discovered that his skin does not like any kind of adhesive that we use, so when we are home, we are leaving his neck uncovered.  I did cover it to send him to school today because he will be around so many other kids.  I am using a gauze wrap to do that so that I don't have to put any adhesive on his skin.

Our nursing ends this week.  After Wednesday night, we will have no more night nurse so we will have to figure out a new routine.  Our first step was to install a camera in his room so that we can monitor him with our phones.  Tommy did that yesterday, so now we have to figure out the best way to use this technology in order to assure he gets what he needs during the night, and we get the most sleep we can get each night.