2015...What a Year!

We are just 4 days from the beginning of a New Year.  This is a time of year for reflection, looking ahead to what the new year will bring, and looking back on what the past year has meant.  Each year, we get Christmas cards from a few friends that choose to send an update letter with their card.  I always enjoy reading about what their family has been up to in the past year.  Now days, social media makes it possible to know more about your friends and their families before ever receiving their Christmas letter.  I've never taken the time to write such a letter to send with our card, although I remember in the early years of our marriage, Tommy talked about sending one.  We just never took the time to sit down and write one.  So this post is sort of my Christmas letter. 

When I look back on 2015, one common theme comes to mind, Health!  It truly has been a year of health for all of us.

Tommy began his journey to being healthier sometime around the beginning of the year.  He didn't follow any particular program.  He just decided he would exercise more and control his portion sizes, while also making healthier food choices.  His preferred method of exercise is running.  He started out by going for walks.  Gradually he has worked his way up to running more than walking.  His current distance is a little more than 4 miles.  Not only has he lost a significant amount of weight, but he now has his blood pressure and cholesterol under control.

It took me until a little later in the year to make the decision to take control of my health.  Sometime in June, I stepped on the scale and saw a number I didn't like.  So I made a change.  I started making smarter food choices.  I was able to lose about 9 lbs with relatively no exercise.  Then July hit and our trip to Austin came and it was harder to make healthier choices while eating out virtually every meal.  So I gained 3 lbs back during that month.  But on August 17, I renewed my commitment to being healthy and this time I used exercise along with diet to make changes.  To date, I have lost 25 lbs since June and have even been able to reduce one of the medications that I take for my heart.

And the biggest story of 2015 is the health of our son.  The trach came out in April and the hole was closed at the end of July and then again in August.  He has done AMAZINGLY without the trach, and I must admit there is nothing about the trach that we miss.  We even have more storage space now that we have gotten rid of all of the supplies that came with having a trach.  He sleeps great and is happy all day every day and life has rolled right along.  And maybe the most amazing thing of it all is that he has not been sick for even a day since the trach came out.  Normally we deal with multiple bouts of congestion and sinus issues and even a stomach bug or two and the occasional fever.  He has not had any of those things at least since April. (Knock on wood)  We are so happy with how well he has done health wise.

Other notable things that happened in 2015 include:
*John started 5th grade, his last year before Junior High
*Tommy and I took in 3 concerts, including Garth Brooks (on my bucket list) and 2 ZacBrown shows
*Tommy and I took a trip to Denver over July 4th weekend to see Zac Brown at Coors Field
*We began weekly date nights back in April and have managed to continue them all year
*I made my annual trek to Ohio in Novemeber and received a good report from my doctor
*John began another year of horse therapy and continues to improve in his balance and strength
*John completed his 3rd straight summer of Therasuit Therapy in Austin


2015 proved to us once again that we are extremely blessed.  We are so thankful for all of the things our God has provided for us and are especially blessed by friends and family who continue to support us through every life change.  From our family to yours, may your 2016 be happy and blessed!

Stop the Insanity!!!!

They say the definition of insanity is doing the same thing over and over and expecting different results.  If that's the case, then you can just call me completely insane when it comes to losing weight.

For years, I have gone through many phases where I try to "get healthy" and lose a few pounds.  And I always do really well for the first week, sometimes two weeks, and then I'm no longer losing water weight so the weight loss stops.  Why?  Because I kept doing things the same way every. single. time.

My process; make healthier choices most weekdays.  Cereal for breakfast, sandwich for lunch, starve until dinner and then pig out on a healthier meal.  I may even lose a little weight during the week, but then the weekend hits and all hell breaks loose.  This is when I decide, "I've done well all week.  I deserve a treat on the weekend."  And that one treat turns into every single meal and then I've undone all of the work I had done during the week.  And did I mention, there was very little working out going on?

I have finally broken the cycle.  Instead of trying to diet, I have decided to make a lifestyle change.  I'm not 16 any more and I'm not playing sports any more, so I can no longer eat what I want and not worry about gaining weight.  I actually had to change my mindset.  That's just what I did, and after 7 weeks, I can honestly say that it's the best change I've ever made.  Even my husband was skeptical when I started this, but now that he sees the progress, he says he's impressed.

What am I eating?  Good question.  I eat whole, natural foods.  I eat foods that our body was designed to digest.  I eat lean proteins, whole grains, veggies, fruits and healthy fats.  And I don't starve myself.  If I get hungry, I eat.  I just make sure it's a healthy choice.  One of my go to snacks is veggies and hummus.  Hummus is a great healthy fat that pairs very well with fresh veggies.  This doesn't mean I will never again eat a cheeseburger, or pizza or Mexican food or any of the other foods that I love so much.  I will.  But when I do, it will be a treat, something I allow myself to have once in a while instead of every day.  I'm even learning to have those things and make them healthier. I still enjoy a good burger, I just eat it without the bun.  I top it with cheese, lettuce, tomatoes, onions, pickles and sometimes avocado if I'm feeling it and I eat it with a fork.  I sometimes add a little mustard to it.  I will have a side of veggies with it instead of fries.  And it's still just as filling without all of the guilt and bloat.  I also have learned to make a pizza or flatbread with a healthier crust, although I'm still working on getting that crust crispy like I like it.  When we go out for Mexican food, I will either have a salad with fajita chicken, lots of veggies and use salsa as my dressing, or I get chicken fajitas and eat it without the tortilla and sour cream.  It still tastes good.  The hardest part of Mexican is the chips and salsa.  So if I'm going to have it, I let that be the treat part of the meal, and I limit myself to how many chips I eat.  I drink lots and lots of water too.  I haven't had a soda in 7 WEEKS!!!

Do I exercise?  Yes!!!!  Exercise is a key factor in speeding up your metabolism and burning stored fat.  And it helps tone up those parts of your body that has gotten a little flabby over the years.  I have a workout program that I can do at home via DVD, but when the weather's nice like it has been lately, I like to get outside and just go for an old fashion run/walk.  Yeah, I'm not a runner, but I try.  I push myself a little harder each time and that's all I can ask for.  And I exercise a minimum of 4-5 times a week.  Ideally I would be doing it 6 days a week and then taking a rest day, but life happens.  I aim for 6 and if I get in 4-5 then I'm happy.

I know you are probably thinking, "Isn't this blog supposed to be about your journey on the Special Needs trail?"  Well you are right and it is.  Here is how my health applies to our journey.

My son is going to be dependent on someone for the rest of his life.  He will never live on his own or probably never get a job.  He will always need someone to help him take care of just his basic needs.  And I want that someone to be me (and my husband).  I am his mother and when I decided to bring a child into this world, I made a commitment that I would take care of him for as long as he needs me to.  I didn't know it would be his whole life, but that's the way it is and that's the way it will be.  But in order for me to continue to take care of him and help him meet his needs, I have to be here.  And at the rate I was going, my health was slowly deteriorating every single day.  I wasn't going to be here as long as I would like.  But now, I feel healthier and stronger and like I can take care of him forever.  Now I know there will come a time where my body just won't be able to physically do the things he needs me to do, especially as he gets bigger.  But for right now, it can and I want to make that last as long as possible.

So here I am, stepping out of my comfort zone, because you don't truly find greatness until you step out of your little circle.  I changed my lifestyle 7 weeks ago.  In that time, I have lost almost 14 lbs and 16.5 total inches.  Those inches are from my chest, waist, hips, biceps and thighs.  Now here is the part where I really do something uncomfortable...a picture from before and one I took today.  So you can see for yourself how much my body is changing.

Taking Control Back

Marriage....Ah, wedded bliss.  You pick out the perfect dress, or tux, you have a final fitting some weeks before the big day, and then you spend the next few weeks eating little to nothing to make sure you can still fit into your dress, or tux.  You hold your breath when you get dressed on your wedding day and pray it still fits.  And when it does, you are so happy.  The day goes off without a hitch (well for some) and you change from your wedding outfit into a going away outfit, relieved because you know you will never have to try and fit into that dress again.

So what is it about marriage that instantly makes you gain weight.  It's like the second I put on that ring and said I do, my waist line started to expand.  I used to have a theory that the ring cut off the circulation just enough that the rest of your body began to swell.  No, I didn't really think that, but I couldn't find any other explanation for why it happens.  I distinctly remember the day, about a month after getting married, I stepped on the scale and saw a number that sent me into shock.  I couldn't believe I had gained that much weight in the short time since the wedding.  I swore right then I would do something about it, and well, here we are 14 years and one kid later.  But now, I'm finally taking back control over my body, my health and my fitness.

Look, I've never been "they skinny girl."  I've always been big, mostly in stature, but I've also always had extra pounds.  And it's not because I wasn't an active kid.  I mean, we really didn't have a choice but to be active.  Am I right?  We didn't have gaming systems like they have today.  The Atari 2600 could just can't compare to the Xbox or Play Stations the kids have available today.  We didn't have social media either to keep in touch with our friends.  If we wanted to know what our friends were doing, we got on our bikes and rode to their house.  We didn't have to worry about child predators like we do today.  We left our house at sun up and didn't get home until sun down.  I rode my bike all over town.  My best friend lived across town, so I rode many miles between her house and mine.  Another friend lived down the block and she and I wore out a path between our houses from walking back and forth.  I played baseball in the yard with my brothers, and every time the ball would go under the house, they would make me crawl under and get it since I was the smallest.  I even played football, yes tackle football, with boys in my neighborhood.  My brother actually put together this small team (I was the only girl) and we would put on full pads and play hard core football.  Once I reached a certain age, my dad put a stop to that.  But my point is, I was active.  I was an athlete.  I played t-ball at 5 and moved straight into softball.  I played all through high school.  I was always on the move.  But I still always had a few extra pounds on me.  It's not until just recently that I have realized why that is.  It's because I ate poorly.  And I have continued to eat poorly as an adult.  But that is finally beginning to change.

I have to give my husband credit.  About 9 months or so ago, he decided enough is enough and started making changes.  He started exercising regularly.  He began just by going for walks in the evenings after dinner.  Well those walks have turned into running.  He is up to a little over 4 miles at least 5 nights a week.  But he also took control of his food.  Because he's a man (grrrr) he can just reduce his portion sizes and the weight starts to disappear.  For me, I have to eat carrots and celery and exercise an hour a day to see any pounds drop.  To his credit, he has currently lost 30 lbs!  That is A LOT.  I am so impressed with how well he has stuck to it and made this happen.  He looks pretty hot too, so that doesn't hurt.  But seeing him take control and make changes, motivated me to do something for myself as well.

You are all fully aware by now of the stresses that I go through having a child with special needs.  It can be down right exhausting carting him around to therapies, and just tending to his every need.  And now that we don't have nursing at night, I am getting up at least once a night to change his diaper.  Sleep has been a commodity around here for the last 10 years.  I've always used that as an excuse to not exercise.  I'd say things like "well I get a pretty good workout just lifting and carrying him around" or "I'm so exhausted after taking care of him that I don't have the energy to exercise.". While all of those things were true, it was really no excuse.  And I still ate terribly, so it didn't really matter how much of a workout I got while taking care of him.  Did you know that 80% of your body make up is due to your nutrition?  You can run 10 miles a day, but if you are eating donuts and Big Macs all of the time, it won't matter.

So what am I doing?  About a month ago, I was contacted by a childhood friend, who I haven't seen or talked to in years.  I see her on Facebook once in a while, but we haven't really talked.  She told me that she is a health and wellness coach with Team Beach Body and she sets up these "challenge" groups through Facebook every once in a while to help people clean up their plates and get more active.  Of course I was skeptical, and my first response was, "I don't think I can do it this time around, but maybe next time," when I knew full well I wasn't really planning to do it at all.  But then I stepped on a scale and saw a number that disgusted me.  It's the heaviest I've ever been, and almost the same as my highest pregnancy weight.  So I knew I needed to do something.  I can't let my sexy husband walk around with a chubby wife. ;) 

I looked into Teach Beach Body and with Amber's guidance, I chose a program that we both thought would be good for me.  Remember, I also have my own heart problems, so I have to be careful with the types of workouts I do.  We both decided that their program called PIYO would probably be the best.  PIYO combines Pilates and Yoga to help increase your flexibility and build strength at the same time.  It's also good for burning fat and calories.  It's low impact and best of all, it's all on DVD, so I can do these exercises from the comfort of my own home.  I'm not really big on attending exercise classes where I'm likely to be the biggest girl there.  The program comes with a calendar that tells you which exercises to do on which days to get optimal results.  It's like having your own personal trainer in a box.  It also comes with a meal guide.  It tells you which foods fall into which categories and how much of each category you should have per day.  And then there is the best part.  If you buy the challenge pack, it comes with a one month supply of their meal replacement shake called Shakeology.  Each shake is packed with nutrients and it will likely be your healthiest meal of the day.  And it comes with lots of different recipes you can try with it so you can get a variety of flavors.  My favorite so far is chocolate with all natural peanut butter.  Tastes just like Reese's Peanut Butter Cups.  I drink one shake a day, usually for either breakfast or lunch.  Not only does it taste great, but it fills me up and helps curb the mid afternoon cravings.  It has helped give me more energy too.  Because I have more energy, I drink less coffee than I used to.  In addition to the shakes, I have cut back on crabs and sugars, and I am eating much more lean protein and veggies.  Of course there are some foods that have natural sugars in them, but I try to stay away from too much added sugar.  The fewer ingredients a food has in it, the better it is for you.  And dinner hasn't been so bad.  I will say that Pinterest is my very best friend.  I have found lots of good, clean recipes on Pinterest.  And I only cook one meal for my family.  If I'm eating healthy, so is everyone else.  And it really makes such a big difference when the whole family is on board.  Most of what I have tried has been good.  There have been a couple of things that the hubs hasn't been so thrilled about, but he eats it anyway.  He's such a good husband!  Last night we had these Greek Chicken Pita pockets.  I thought he wouldn't be so thrilled with them, but he actually liked it enough, he had a second one.  So that is going into the regular rotation.  It was so easy to make too.

So we have exercise and nutrition.  The third element to this magic formula is WATER!  Oh my goodness, water is sooooo important to our health.  We all know that most of our body is made up of water.  And we all know that water is the best thing we can drink.  But most of us prefer to have something with flavor.  I haven't had a soda in a month.  A MONTH!!!!  I drink water all day long.  We are truly supposed to be drinking about half of our body weight in ounces per day.  That's a lot, right?  Yes, it's going to have you running to the bathroom every 10 minutes in the beginning, but as you get used to it, your body starts to crave water.  Oddly enough, drinking more water doesn't make you retain water, it helps you get rid of the water in your body.  Hydration is such an important factor.  And on the occasion when I'm craving a little more flavor, I squeeze a lemon in my water, drop the slice in there and it gives me the little extra kick that I need.  These days, when I wake up, I'm reaching for water instead of coffee.  Amazing isn't it.

But have I seen any results.  Well mostly there are some non scale victories.  I have more energy.  I feel stronger.  I feel more confident.  And I'm happier.  The measurable differences are that in 3 weeks, I lost 7.2 pounds and 8 total inches off of my body.  I can even see the difference in side by side pictures.  I feel so much better about myself and I'm completely motivated to keep going.  I have more weight and inches I'd like to lose.  So one way I am motivating myself (besides my hot husband) is by signing up to be a Team Beach Body Coach.  Initially I signed up because I wanted a discount on the products.  But I have come to realize that by helping others get healthy, I'm helping myself.  By motivating and encouraging them, I'm encouraging myself.  I don't want to be the one helping them clean up their plates and get more exercise when I'm not putting the work in myself.  So by helping other people, I am continuing to strive to reach my goals. 

If you want to know more about what I'm doing, or if you want to join in with me, let me know.  I'll be glad to talk to you.  And if I can't answer your questions (I am new to this) then I have a great coach who can answer them for me.  It's not a diet, it's a lifestyle change.  And the benefits are greater than the changes you will see in your body.  Let's take back control of our bodies together!

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.

Emotions

If you follow Tommy or me on Facebook, then you know this past week didn't quite go as planned.  If you don't follow us, here is what happened.

When John had his airway check on Wednesday the 1st, the doctor told us to plan to be admitted on Monday, the 5th.  I got a call from the nurse on Thursday that said we would get a call on Monday when a bed was ready for John and to wait for that call before coming to the hospital.  So after a fast trip to Kinder for Easter, Monday came and we waited. 

I planned to keep John home from school because I had already told his teacher, the attendance clerk and his bus driver that he would be out Monday-Wednesday.  So with John hanging out at home we waited, and waited, and waited.  Finally around 2:30 in the afternoon, the phone rang.  The nurse told us that the hospital was full and they didn't have any beds for John for that night.  She said they were hoping to have some discharges that evening and he would be put back on the list for Tuesday. 

I decided it best to send John to school on Tuesday since we wouldn't hear anything until the afternoon anyway.  It was around 3:30 on Tuesday afternoon and I still hadn't received a phone call.  So I called the number to admissions and they transferred me to room management where I was told that once again, they had no beds available.  Now on to Wednesday.

On Wednesday, Tommy decided to call around 12:30.  He was told they did not yet know if there were any beds available, but they would call by 3:30.  Around 2:30, I got a call that they yet again had no available beds.  On to Thursday.

I spoke with he nurse for John's doctor on Thursday morning.  She said as of that morning it didn't look likely there would be a bed for Thursday night.  She also said that she had spoken to his doctor and she said she did not want him admitted over the weekend because there would be doctors there who were not familiar with John.  So if there was no bed for Thursday night, we would have to wait again until Monday.  Later, we got the call that there was indeed no bed for Thursday.

So here it is, the weekend, and we are still waiting for him to even be admitted to the hospital just to start the process to see if he's ready for his trach to come out.  To say last week was an emotional week for me is an understatement.  I had trouble eating and sleeping, and trust me when I say I have never had trouble with either of those things before in my entire life.

I know I should be happy that he is healthy and not one of the sick kids in the hospital, whose parents are waiting for them to get better and go home.  I know I should treat each day as if nothing has changed.  I mean, we have done this for 9+ years after all.  What's one more week, right?

On the other hand, WE HAVE DONE THIS FOR 9+ YEARS!!!  I'm ready to be done with this chapter.  Our son has had one diagnosis after another.  Nothing in his life has been easy.  Although, I don't think that he is aware that his life is not easy, I am very aware.  And I am just so ready for him to have one of those difficult parts of his, and our life, go away.  I'm ready to close this chapter of our journey.  Our journey will by no means be over, but maybe it will be just slightly easier and better.  His and our quality of life will be slightly better and we can start to get used to a new normal.

We are just trying to make the most of our weekend together.  I'm trying not to think too much about it all and just enjoy our time as a family.  John has a soccer game today and then I may take him to a movie later.  Tomorrow will be church, nap and laundry day and then Monday, we will start the game all over again.

Please pray that a room will become available sooner rather than later.  And pray for Tommy and I to have patience and peace while we wait.  Hopefully my next post will come from the hospital.

Quick Update

I just wanted to say thank you to everyone who has been praying for us.  We have sure felt those prayers this week and I know we will continue to be blessed by them as we go into next week.  I wanted to update you on a couple of things we asked you to pray for.

First, John had his airway check on Wednesday and everything went great, just like I thought it would.  The Dr. said there was no granuloma that had formed and there was nothing new with his airway.  So the first step is completed and successful.  Now we are on to the next step.

We are expecting to get a call from the hospital on Monday letting us know they have a bed available for John.  When we get that call, likely in the afternoon, we will head up to the hospital.  So continue to pray for that first night, when he sleeps with his cap on.  The doctors will be looking for him to have no significant oxygen desaturations.  If he is able to sleep through the night with no significant desats, then we will be ready to take out the trach on Tuesday.  I'm pretty sure the parameters for the 2nd night will be much like the first.  So please continue to pray for us on Monday and Tuesday, as often as you think to.

And the other thing we asked you to pray about is his congestion.  I am happy to report that it seems to be clearing up.  Although his trach secretions still are more than usual, his nose seems to have cleared up, and that is the part I have been most concerned with.  But we still have the weekend to go and knowing that we will likely be outside most of the day tomorrow, we are still asking you to pray that we can keep his allergies at bay.  He is taking his regular allergy meds so we are just hoping they do their job and he can go into Monday with his nose still clear.  He is in a fantastic mood today and I am hoping that will continue.

There is a slight possibility that they will not have a bed available for him on Monday.  If they don't, then they will put him on the list for Tuesday.  We are really hoping that they have a bed on Monday because we are ready to get on with this and not have it drag out over the course of next week.]

May you all have a very happy and blessed Easter weekend with your families and friends.  And let us all remember what it is we are celebrating this weekend.

xoxo

End of the tunnel

We are almost there.  One week to go before John says "goodbye" to his trach.  Boy, what a long journey it has been.  I can honestly say there were times when I thought he would have it forever.  I never thought it would be possible to get rid of that thing.  But here we are.  One week to go!

Time really has gone by quickly.  When we met with the doctor in July of last year and made this plan for the spring, it seemed so far away.  And then before we knew it, it was 6 months later and we were setting a date.  And even then, we were a little more than 2 months away and it still seemed like a long ways off.  But here we are, just one week out and it's basically consuming my every thought.

This coming Wednesday, John will go to the hospital for a routine airway check.  We do these every year anyway, so it's not a big deal for us.  They will put him under anesthesia and use a scope to look at his airway.  They are checking for any kind of granuloma tissue that may have grown there over the last year.  Only one time has there every been anything there, and it was easy to remove.  Once it is determined that the airway is clear and there is nothing blocking airflow, we will be set.

Monday, April 6, which is the day after Easter, John will be admitted into Texas Children's Hospital.  The first night there, he will sleep with a cap on his trach.  This means he will have to do all of the breathing on his own.  There will be no vent there for support.  Then on Tuesday, April 7, if all goes well the night before, they will remove the trach.  This is not a surgical procedure.  They simply untie the trach tie and remove the trach from his neck.  We do this at least once a month at home to give him a new, clean trach.  They will then put a bandage over the hole.  Then he will spend one more night in the hospital so they can monitor his first night of sleep in over 9 years without a trach to help him breathe.  If everything goes according to plan, we will come home on Wednesday and begin working to settle into a new routine.

For those of you who want to know how you can help, please pray for these things:

1.  Pray that his procedure this week goes well with the anesthesia.  I have no reason to think it won't, but any time anesthesia is involved, you get a little worried.

2.  Pray the first night in the hospital is a good night and he is able to tolerate the cap on his trach as much as possible.

3.  Pray that once the trach comes out, he will be rid of it for good.  We do not want to ever have to put it back in.

4.  Pray for a smooth transition once we get back home.  It will take some time to settle into a new routine, especially during the night.

5.  Pray for Tommy and I to be at peace with whatever the outcome will be.

6.  JT has been congested for a little more than a week.  Pray the congestion goes away before next Monday.  It will be easier for him to sleep with his trach capped if his nose isn't stuffy.


Thank you to everyone who has continued to support us and pray for us through the years.  No words can explain how much the love and support we have been shown has carried us through some really tough times.  I can't wait to update in a week with wonderful news and hopefully some post trach pictures.

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.