Trouble With the Curve

By now you all know that there is never a dull moment in this crazy life we are living.  Our boy keeps us on our toes constantly.  We recently were thrown a "curve" ball that we weren't quite expecting.  But then again, were we really expecting any of this?

Some of you know the majority of the story I'm about to share, some of you know just a portion of it and some of you don't know any of this at all.  So I'm going to start from the beginning.

It all started with an appointment about the structure of John's feet.  A little over a year ago, Tommy got a recommendation from our pediatrician for a pediatric orthopedist here in Houston.  He took him to have John's feet checked and to see if there was any cause for concern.  He told us there wasn't much to be done, other than to continue supporting them with orthotics (braces for his feet).  He recommended a different orthotist than we had been using, and one that he has done quite a bit of work with.  He wanted us to follow up with him after we got John fitted for new orthotics.  I took John to the follow up appointment.  It wasn't quite what I was expecting.

He did look at his feet and the orthotics and gave his opinion about what adjustments we might make for them to be more comfortable for John.  But then he started talking about something completely different than his feet.  He mentioned the curve in his back.  Now this wasn't new information to us.  John has had x-rays done in the past by his Physical Medicine & Rehabilitation doctor and she told us that he had a curve called Kyphosis, which is different than scoliosis.  But at the time, she said she wasn't concerned about it.  We discussed this curve with the new orthopedist and we discussed whether it was something common for kids with John's genetic syndrome.  Because there isn't a lot of literature about his genetic syndrome, we really don't know the answer to that.  He mentioned that there was a brace that could be worn to help correct the curve, but at that point, he didn't think it was necessary and he thought surgery wasn't even a consideration.

Months went by and we didn't think too much more about that appointment.  Over spring break, John had a follow up with the same doctor, and I was going into it thinking I was just going to get a new prescription for new orthotics.  When we got there, they took us straight back to x-ray and they took a few pictures of John's spine with him standing.  After waiting in the exam room, the doctor comes in and says that the kyphosis has actually gotten worse.  This wasn't all that surprising to me because I had actually been noticing without the benefit of x-ray that it looked worse.  The difference in kyphosis and scoliosis is that while scoliosis has more of a side to side curve in the spine, kyphosis is a curve from back to front.  This causes John to be hunched over.  It had become obvious to me that the hunching had gotten worse.  But the next thing the doctor told me, took me by surprise.

He thought it was necessary for John to start wearing a back brace to help correct the curve.  In his opinion, surgery was too risky for this kind of curve, and the brace was the best option for correcting the curve.  And here is the best part.  He wants him to wear this brace for 23 hours every day, UNTIL HE STOPS GROWING!  Y'all, the boy is not quite 13, so who knows how many more years he has left to grow.  This totally rocked my world.  But he sent me to a different orthotics place to get John fitted for this back brace.

Tommy and I knew that strapping John into anything for 23 hours a day would be difficult.  And then we saw the brace.

Does this look like something you could wear for 23 hours a day?  We got the brace home and tried it on him and quickly noticed a few things that would make wearing this difficult.  Number one, he can't really play on the floor with it.  Sitting on the floor in it is difficult, and when he is lying down, he can't sit himself up.  And another issue we noticed pretty soon is that we can't change his diaper with this on.  We would have to take it off several times a day, when he needs to be changed.  This would also pose a problem with sending John to school in this brace.  His teacher's aren't trained to take the braces off and put it back on the 3 or 4 times a day that they change his diaper.  With all of these problems factoring in, we decided to seek a second opinion.

A couple of John's friends here in Houston had been to a doctor in San Diego in the past couple of years to have their scoliosis corrected.  So I talked to these two super moms and got their opinion of the doctor out there.  Now, I know what you are thinking.  You live in Houston, home to one of the largest medical centers in the world.  Surely there is a doctor there that you could consult with.  And you are probably right.  But after talking to my two super mom friends, they raved about the doctor in San Diego.  This guy is a spine specialist and he does these kinds of surgeries all of the time.  He is very skilled at what he does.  Also, they say the hospital staff itself is fabulous.  They really couldn't say enough amazing things about going out west.  So, Tommy and I decided to get John's most recent x-rays, along with the ones he had from his physical medicine doctor and send them out to this doctor to review.  And then we waited for him to look at the x-rays and call us.

About a week later, we received the call we were waiting for.  The doctor was extremely kind and patient and spent nearly half an hour with us on the phone, giving us his opinion on what he could see from the x-rays.  We found him to be quite knowledgeable.  He also had a bit of a different opinion than  the doctor here.  He says that the brace won't correct the curve, but it will delay the curve.  He also said that the surgery really isn't any more risky than any other spine surgery. If we wanted to buy him more time, then the brace was the way to go.  He also said that with a younger child, he absolutely recommends bracing.  But with a child John's age or with someone older, whether to brace or not really comes down to quality of life.  He thought it was likely that John will need surgery eventually, no matter what we decided, but could make a more informed opinion if he saw John in person.  So we scheduled that appointment for April 30.

On the weekend before the appointment, we flew out to San Diego.  We wanted to have a couple of days to adjust to west coast time and to try and make a mini vacation out of it.  We were able to have dinner at the Hotel del Coronado, spend a day at the famous San Diego Zoo, and we even met up with the flower girl from our wedding and her little family for dinner.  Here are a few photos we took of our time there.

Ready for Take Off

Saturday night

Dinner View

Sunday Funday

He Loved the Bus Ride

Sunday Night with Family

Our appointment was scheduled first thing Monday morning.  The doctor came in and had a nice long visit with us.  We discussed his x-rays and the progression of his curve.  In 2011, his curve was approximately 36 degrees.  In 2016, his curve was around 54 degrees.  In his current x-rays, his curve is about 75 degrees.  With the rate of progression and with as big as the curve is now, he told us that we could probably wait another year to have surgery if we wanted, but he didn't think we would be able to wait 2 years.  If the curve gets too much worse, the surgery becomes much more complicated and risky.  So we left the appointment with a decision to make.  Do we have surgery this summer, or wait until next summer?  With a lot of information to process, we headed back to the airport for our trip home.

It's been a week and a half since our appointment and we have finally made a decision about when to have surgery.  But first, let me tell you a little bit about what surgery will entail.

In order to straighten the spine, he will have a rod placed in his back and vertebrae's T2 to L4 will be fused.  He will be in the hospital for 5-7 days, probably spending the first couple of days in ICU just because of his history with the trach.  Once he is released from the hospital, we will probably spend one more week out west before being allowed to fly home.  It is expected that he will be back to baseline in 4-6 weeks.  Because of the fusion of his vertebrae, his torso will not grow any more.  His arms and legs will still be able to grow, but he will likely not get much taller than he is at the time of surgery.  This of course factored into our decision.

So now for the decision.  We found out that the earliest the doctor could do the surgery was late July.  That is too close to the start of school for both me and John.  And because we weren't too keen on waiting until next year, we decided to split the difference and have it done in December.  This will give him 7 more months of growth, and at this age, it could be a big difference.  The date we picked is December 4.  This will give him the chance to have surgery, recover for 2 weeks and still be home in time for Christmas.  And he will have the remainder of his Christmas break from school to continue to recover.  If all goes according to plan, he should be good to go back to school in January.  He and I will both miss school for the first 3 weeks of December.  But that is an easier time to miss than the beginning of the year.

So that is where we stand today.  I will try and keep you all informed as we continue through the process, and certainly as we get closer to surgery time.  Please continue to pray for us along this new journey.  When John got his trach out, we called him John 2.0.  With a straight spine, he will be known as Johnny 3.0.  He keeps getting bigger and better, but he is still the sweetest, happiest, most loving little guy you will ever meet.  Thanks for always supporting us, no matter what "curve" balls are thrown at us.  We love you all!

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.