Birthday Fun

Every year I marvel as Kai grows older.  From the small three pound baby he was to the solid almost kindergartner he is now.  I know I've said it before, but I'm going to say it again: five years ago I couldn't even envision him now.  I couldn't see past the day to day, let alone even think about future Kai.  I scoffed at words like wheelchair and school because I was just trying to get through "now," and he was literally fighting for his life every day.  We were terrified of the ventilator--not because of the vent itself, but because what it represented.  To us it meant regression.  We saw how he hated and fought it in the NICU.  We worried that it would lower his quality of life--being tied to one more machine.  However, the opposite occurred.  He started to thrive.  We were able to get on the TC Waiver program, giving us respite nursing, which has saved our sanity, and we were able to start looking beyond the immediate day to the next week, to the next month, to the next year.  Suddenly, the future not only seemed possible, but expected and anticipated.

 Now our Little Mister is turning five.  Five.  He has taught me so much.  I am a different person because of him.  Hopefully better than I was before.  I value life and friends and family so much more because I have seen how fleeting it can be.  Everything can change in an instant. 

So we celebrate.  Kai's birthday weekend started off early with his school nurse bringing him a couple presents.  Kai has been showing more interest and awareness in toys, so she gave him Spiderman and a Transformer car.  He was pretty funny exploring Spiderman for the first time.  We put it by his side and he immediately lifted his foot up, exploring first with his foot, then cautiously with his hand--never letting go of his ballard until he must have deemed it as safe.

  We celebrated Zuri's and Kai's birthday together.  The idea was to go to the park and let the kids play in the splash pad and on the playground, but the splash pad doesn't open until Memorial Day and it was super windy.  We made it through eating lunch/dinner, but decided to do cake and presents back at our house.  I've decided that I'm not going to host any more outdoor events because it seems that every time I host something outdoors the weather doesn't cooperate.

Alisia and Maria made Zuri's and Kai's cake.  Didn't they turn out amazing?

The kids had fun playing on the playground though, so at least that part went well.

Ridge

Kai was spoiled for his fifth birthday this year.  His big present was a swing from J's side of the family.  It was a hit!  Not only with Kai, but the other kiddos as well.

It was fun to watch as Kai's level of comfort increased the longer he was on the swing.  He started off with his hand covering his eyes--his way of blocking out the world.  As we swung him, he laughed and laughed.  Slowly he lowered his arm and started chewing on his ballard while still laughing.

Once Kai was done, the other kids got on and had a blast.  We started with two and kept adding kids.  We ended with five kids, but there was room for a sixth.  They loved it! 

River was put down to bed, but she likes to play in the window.  We were outside, just enjoying the nice evening (of course it would be nice after the party was over), and I heard a little voice.  River was watching us from her window.  It was so adorable I had to get a picture. 

This Adventure Called Life

I'm going to say it out loud, and I'm going to say it proud: I love my life.  Sure, I have my challenges (don't we all?), but I have a pretty darn good life when all is said and done.

I think there's a huge misconception in the world, that those who have special needs, or are caregivers for those with special needs are....miserable.  That our lives, because of the unique challenges we face, are somehow less.  Sometimes when I talk to people, especially people who knew me pre-Kai, there is a sympathy for my life--for my "situation."  I believe it is quite the opposite, actually.  I believe that our life is actually richer and more fulfilling in many ways.  Granted, it's not ideal and would have never been my choice (I don't think anyone having a child thinks "oh please let this child be medically complex"), but this is the life we've been given and I intend to make the best of it.

I intend to live out loud.

Top of Angels Landing, Zion National Park

When I was pregnant with River, I was asked to speak in Relief Society about overcoming challenges and moving forward with life.  At the time I didn't know how to articulate what was inside and ended up rambling; but really, it is simple: I can either bow down to my fears and wallow in self-pity and despair, or I can meet life head-on and make the best of the life that I have been given.  I love life.  There is so much wonder and beauty in the world.  I grew up hiking, camping, swimming, and just being surrounded by the tranquility of the earth.  I still love all those things today--perhaps even more so, because it is harder--but not impossible--to do those things now.  I don't take it for granted as I did when I was younger. We are surrounded by people who love us.  Some are near and others are far, but their love and support has helped sustain us through some of the tough times.

Kai has changed our life, no doubt about it.  Developmentally, he is 3-6 months old in his motor skills, and 6-9 months old cognitively, in a five year old body.  He will always need 24-hour care, even if he was able to get off the ventilator.  Hourly eye drops, nightly feedings, turning him every couple of hours so he doesn't get sore, monitoring his oxygen levels, keeping an eye out for seizures, and that is just at night.  Daytime includes all of that and more--so much more.

But I don't look at my life that way.  Yes, my life is completely different than the majority of people.  I love my "little mister," and I have adapted to all the cares for him.  Caring for him isn't a "burden."  It isn't something I have to do, but something I choose to do--because he is my child and I love him for the unique individual he is.  I celebrate milestones when he achieves them.  I'm more cognizant of the amazing things our bodies do naturally, and in many ways having Kai has given me more appreciation for the two typical children I do have.

Everyone has challenges.  Some people are masters at presenting the world with the perfect facade while other people's challenges are more apparent.  This is true even in the special needs realm.  Parenting is hard, no doubt about it.  Some days are just brutal, and bedtime cannot come fast enough.  Whether you have typical or special needs children, parenting is hard.  I often joke that most of the time Kai is my easy child.

Yet parenting is also extremely rewarding, and Kai and the girls have brought so much to our family.  Challenges, yes, but so much more as well.  Zuri has infectious energy.  River is mischievous.  Kai simply radiates love.  It's amazing how much a child who is non-verbal is able to communicate, especially one who cannot hear  and rarely makes eye contact.  We have met people whom we would have never met otherwise through Kai.  Some of those people have become dear friends.  We have seen a softer, more loving side to human nature than is typically seen in the world through our little guy.

I do worry about the future with Kai.  He's only forty pounds, but feels much heavier.  Forty pounds of dead weight because he cannot support himself.  While I am not a tiny woman, I'm not particularly large, either, and the bigger he gets, the more I wonder how long I am going to be able to carry him around.  At some point we are going to need to get a house which is disability friendly.  It would be way too expensive to do the needed modifications for our current house.  We are talking about narrow hallways, stairs, bathroom, entryways, etc.  With his back rods we cannot pick him up under the shoulders and carry him upright; we need to carry him cradle style--not bending his back, and he already barely fits that way through our hallways and stairway.  I worry about how other people are going to treat him as he gets older.  It's a sad commentary on society, but the younger one is, the more accepting people are of differences and disabilities, as though one has the ability to outgrow all disabilities by the time one reaches adulthood.
I'm excited for Kai as well.  He will start kindergarten in the fall at a school designed for special needs kids.  It's one of only a handful in the United States that is accredited.  The students from one of the local high school's interact with the children in the school constantly.  They even take them to prom.  The school has monthly plays, a swimming pool, sensory rooms, PT, OT, etc, etc.  They are on 30 minute blocks so the kids are constantly engaged.

Kai has loved preschool.  He is in a mixed preschool of special needs kids and a few typical kids.  Everyone loves him and are sad to see him go--even the other kids.  Kai even knows the difference between kids and adults.  For example, he hates when adults hold or manipulate his hands, but he will allow kids to do the same thing that he wouldn't allow an adult to do.  He definitely has his own personality.

Statistically, 80-90% of couples with special needs children divorce.  The strain of appointments, medical bills, hospital stays, emergency situations, all coupled with day-to-day life stuff takes it toll.  We have learned the value of getting away--of time for ourselves, both individually and as a couple.  One of the best things we have done is to have our vacations, whether it's just a quick trip into the mountains, or a week get-away out of state (or country).  It's not only the vacation itself, but the planning and having something to look forward to during the days that are hard.  I think that it's something everyone should do--whether you have kids (typical, special needs) or not.  Getting away from the mundane and doing something new is so revitalizing for the mind, body, and soul--and marriage.

Mangrove Lagoon, USVI

We also understand the importance of letting each other have a bad day.  Life isn't always sunshine and roses.  Clouds come and thorns pierce the skin.  We buoy each other up on those days.  We learn to work together.  We laugh.  We cry.  We get angry.  But at the end of the day, we support each other.  We make time for one another; even if it's something as simple as snuggling on the couch watching Netflix, playing a board game.

So while my life may be hard at times, I don't count it as harder than others.  My challenges are different, but something that is easy for me may be hard to someone else.  There is a meme that I really like:

 I believe that it it's our attitude which determines how we make it through the mud...and my attitude? I intend to play in the mud; get dirty and messy and have a smile on my face while I do it.

First Expansion

Kai had his first expansion for his growing rods, and I must say, technology is certainly amazing.  Instead of having to have repeat surgeries every few months to change/lengthen rods as he grows, Kai will have this less than five minute out-patient procedure every few months for several years.  The recovery from surgery alone is more than worth it.

The doctor first used a blue magnet to find where the rods are, then he marked the spot (on both sides).  He used the machine, which rumbled and clicked for about 20-30 seconds per side (if even that long).  He explained everything he was doing each step of the way.  When he got to the actual lengthening of the rods, he said, "I'm performing surgery right now!"  It was pretty cool.

Afterwards, Kai was slightly fussy, but I think that was more due to lying face-down than the procedure, because once he was picked up he immediately calmed and was in a very good mood the rest of the day.  I would even say that he felt better after the lengthening than before.

One rod was lengthened more than the other due to sensitivity of the rods to the machine.  One side lengthened while working on the other, but the doctor wasn't worried about it.  I guess there is a mechanism that stops it when it gets to where it needs to be to help prevent over-lengthening.  If I remember correctly, one side was lengthened eight millimeters and the other side was just over six millimeters. 

Absolutely amazing, I tell you.  When we arrived at the appointment, they took x-rays to see how everything looks, and make sure the rods are still correctly placed and whatnot.  After the expansion they took another set of x-rays (not included in this post).

 In case you missed the original post, here are the after and before x-rays of his spine.  Definitely a huge difference!

Wheels

Today Kai was fitted for a new wheelchair.  Typically, insurance will only pay for a new wheelchair/stroller every five years, but we were approved for a new chair early for a couple reasons.  First, we had a different insurance company when Kai got his first stroller, so our current company hasn't paid for one--and they approved the need for the new one!  Second, with the Magec rods giving Kai an extra four inches, he had grown out of his old chair.  Badda-bing, badda-boom! 

I kept hearing how great Shiner's is for wheelchairs, but in order to get to their wheelchair department, the child has to be in the system and referred by one of their physicians.  To be in the system, they have to be followed by one of their physicians.  Kai is so involved that he is already followed by all the specialists that he needs, which created a conundrum for us--how do we get in?  Finally, one amazing receptionist (I don't know her official title), discovered that Kai's orthopedic doctor works with one of their orthopedic doctors (they are in the same team) and we were able to see this new doctor, which gave us an in!  Yay!  We really liked the Shriner's doctor, and he gave us some useful information to help with Kai.  He also sent us straight up to the wheelchair clinic--since he could clearly see the need for a new chair.

We were excited.  We hadn't expected to be seen right away...and in fact, we weren't.  We had to make an appointment to meet with the physical therapist/seating specialist.  The earliest appointment was over two months out.  Wow. 

 So we waited, and found new ways to adapt his stroller to his new height and vent.  Finally, today was the day!  The PT was amazing.  He spent two and a half hours (and would have been longer, but Kai's external vent battery died, leaving us with only the internal one--and us without his backup/cord--d'oh!) making sure that everything in the new wheelchair would be perfect--and that Kai would be sitting properly and comfortable.

When he was fitted for his stroller, they spent maybe 15-20 minutes with him, and he never looked truly comfortable in his stroller.  Every time I would go in for adjustments, I would mention it, and while they did what they could, something just always seemed off with his positioning.  Today, however, Kai was happy and comfortable as can be.  He was interacting with his environment and playing around.  It was so amazing.  While he wasn't in the wheelchair that he will be getting (it will be three months before we get the actual chair), the seat will be taken from the same measurements as the one that he was sitting in today.  Also, once the chair comes in--all custom made and whatnot, they will make the necessary adjustments so that he is nice and comfortable.  The PT said that Kai is a great sitter and was pleasantly surprised.  I was too, considering that he didn't sit very well in his stroller.  It really is amazing what a few tweaks can do.

When we went into the appointment today, I was all set to get a Zippie Iris wheelchair.  I had done my homework and was quite convinced that was the best option.  Therefore, I was very happy when the PT suggested the Zippie Iris as one of the options.  However, one of the other PT's made a comment about a new chair, the Ki Focus, and how it might be better suited to our needs since Kai is a little more involved than most children (i.e support, vent, bags, etc).  After looking over everything, we went ahead with the Ki Focus.  It's streamlined like the Iris and in looks virtually identical, but it allows for a few more options to hold all his things.  We even got it in a fun royal blue color.  I'm really excited about the Focus and can't wait until it comes!

Magec Rods

January 2016 was a blur of exhaustion.  On the 5th, Kai went in for scoliosis surgery and they placed Magec growing rods in his back.  According to the doc, the surgery couldn't have gone better.  Kai's spine was also more malleable than expected, so they were able to get him pretty straight.  He still has a slight curve, but it is barely noticeable.

The great thing about the Magec rods is that it they don't have to go in for repeat surgeries as Kai grows.  They take a machine and place it on Kai's back.  The machine vibrates and lengthens the rods as needed.  Technology is amazing.  Kai's breathing has also improved, although there is still no word on lowering his vent settings.  So far, he remains stable on that end.

The biggest drawback to the rods has been Kai's regression.  He no longer rolls as he used to, and makes little to no effort to hold his head up.  He isn't scooting around his bed either.  However, it has been less than three months, so he still has some adjusting to do.  Hopefully with time he will be back to his old tricks.

The rods also make Kai heavier--or at least it feels that way.  For whatever reason, he feels an extra ten pounds heavier than before, although the scale tells us differently.  Perhaps a big part of the feeling of extra weight is that straightening him out lengthened him a good four inches or so.  He has outgrown his adapted stroller, nearly outgrown his carseat and his green chair.  It's crazy.  So now we are transporting a child who is four inches taller of floppy, dead weight.  You know when kids drop their weight and somehow they feel heavier?  That's how it feels to carry Kai.  I'm worried about how I'm going to continue to transport him around as he gets bigger.  He's only four, so he still has a lot of growing to do.  The rods make it harder to lift and carry Kai since we can't lift him from under the armpits and we have to be careful to not bend his back--supporting him at the shoulders and hips. 

After surgery, Kai stayed in the hospital a little longer than expected due to incontinence.  The poor boy just wouldn't give a bowel movement and he was super gassy and backed up.  They gave him three (if I am remembering that right) suppositories and two enemas before he finally "went."

Once we got home, recovery was slow.  He was in some major pain, but was mostly managed through diligent use of Children's Tylenol and Motrin.  January was also the month that one of our nurses had wrist surgery, which left us with one nurse who only came a couple times a week.  We went 17 nights without a nurse--not including the time Kai was in the hospital.  February was better--it was only 5 nurseless nights.  I don't know why they didn't rotate some of the other nurses who take care of Kai to our house while the one nurse was out, but it was the snowflake that caused the avalanche for us and we became serious about switching nursing companies.  Unfortunately, the nursing company we were looking into didn't have the staffing to add Kai as a client, so we had to wait until they were able to hire the nurses to cover Kai. Or, as in our case, a void happened because of the passing of another client.

Kai is now doing much better.  He still has moments of pain or tenderness when he has been moved too often.  He still loves to be held and cuddled, so luckily we can still do that with him.  We believe as he gets used to the rods, he will regain the motor functioning he has lost.  We are seeing a little more effort to roll (especially onto his back if we have him on his side).  He now prefers to lie on his back more than any other position.  Little stinker.

Before surgery.  Notice how he is leaning, and even with the harness he just looks uncomfortable in the chair.  He was always tipping himself forward

After surgery.  This was taken after OT had adjusted his chair to its maximum height.  His head barely fits on the head rest and it can't go any higher.  We're working on a new chair

In his car seat.  We've adjusted the straps and headrest since, but he will be needing another car seat sometime in the near future!

At home--he's so straight!

Our first outing since his surgery--even though he is now too big for his chair, he still looks much more comfortable than before

Dealing with Loss and Change

Forty consecutive nights with a nurse.  It feels like a dream; one we used to take for granted, and now finally, a reality again.  For more than six months we have been sleep-deprived through nurse-less nights.  I would stay up anywhere from three to four-thirty in the morning, then J would take over, and wake me up as he went into work for the day.  Needless to say, I was tired.  Then I got pregnant, which pushed me past the realm of tired to utterly exhausted. 

Still, we persevered.  The worst month was January, where we had a whopping seventeen nights without a nurse, with Kai just having had major surgery and in slow recovery.  That was the month I got pregnant.  I joked to those in the know that J and I had to do something to help keep us awake.  Wink wink.

After wrapping my head around the idea of four children, we began to get really excited.  We decided that since it would be our last child that we wouldn't find out the gender beforehand.  Normally, J won't even entertain the idea of names until the 20-week ultrasound when the gender is generally discovered, but he was as engaged as I was as I went through names during some of those long nights.  In fact, we had even pretty much agreed on names: one for a girl, one for a boy.

I originally had my first prenatal appointment on a Thursday, but J had a conference he was attending that weekend, so I changed the appointment to the following Tuesday so he could come to the appointment with me and hear the heartbeat.   

That Saturday, I had an appointment to get my hair done.  My mom had taken the girls overnight, and since J was at the conference, I took Kai with me to the appointment.  I didn't think anything of it.  I hauled him in and out of the car, as well as his adapted stroller and all his equipment.  Everything was normal.  After my appointment I spent some time at my mom's house, picked up the girls, and went home.  I started Kai's feeding with the intention that once his feeding was done, heading back out to the store for a birthday present for my nephew, and then go to the party.  However, when I took a bathroom break, I discovered I was lightly bleeding. 

I texted my sister (who has had several miscarriages and is a nurse), and her advice was to rest.  So, I contacted J, who was almost done with the conference, and he came home right away.  He took the girls to the party while I stayed home with Kai.  The bleeding stopped and I heaved a big sigh of relief.

The next morning, however, as I was getting ready for church, the bleeding returned, a bit heavier.  I stayed home from church and we called the on-call doctor.  The advice was to rest.  He gave me some hope that I wasn't miscarrying, saying that since I wasn't bleeding heavily and passing tissue, that it could just be a placental abruption and could repair itself. 

I took it easy for the day, resting as much as I could, with the bleeding remaining about the same.  Around eight I started cramping and went into the bathroom, where the real miscarriage began.  At that point I knew what was happening.  I will spare you the details, but I sobbed during those long hours.  It wasn't until after four in the morning that the cramping and bleeding stopped enough for me to sleep.

My baby, never held or seen, was gone.  It was devastating, both physically and emotionally.  It doesn't matter that he/she wasn't born yet.  A life is a life, and a loss is a loss.  The idea of a miscarriage had never entered my mind, and that baby had already wormed itself into my heart.  For a week afterward I was barely functional--physically and emotionally.  I was grieving.  However, each day was a little better than the day before.

Family and friends who knew were super supportive, and I am grateful beyond words for their love and support.  We hadn't told many people of the pregnancy--we were waiting until after the first appointment, although I already had our Facebook announcement ready to go (see picture above--I wanted to see how long it would take people to figure it out).

The next weekend we went to California for my niece's baby blessing.  The trip helped me immensely, and while I still feel the loss, it's not crippling like it was in the beginning.  My doctor said that up to 25% of pregnancies end in miscarriage, and I know many women who have been through it.  The number is so much higher than I would have ever thought.  I admire their strength.  I don't think that it's something that is talked about enough.  Miscarriages are often dismissed, but shouldn't be; that baby was real to me, as was the loss.  The toll that it took on me was something I never expected. 

While we were in California, we received a phone call from another nursing company, one that we had been working with for several months to get switched from our current company.  We had been working toward integrating the two nursing companies so that we would have full coverage between the two, but they had a patient pass away and were able to cover Kai at 100%. 

It worked out perfectly, because we had three unscheduled nights in the next week (this week), which are now covered.  It came at an unfortunate time, since the old nursing company changed schedulers, and the new scheduler had been getting some unassigned shifts filled.  Change is hard and scary, and other than the coverage issues, we were happy with the old nursing company.  I tend to grow quite attached after more than four years.

The new nursing company does things a bit differently, and yesterday was a whirlwind of information.  However, Kai is going to have a primary nurse who seems like he is going to be excellent.  Despite everything we are excited for the change (and the sleep!).  Our old nursing company said we are welcome back any time, so if things don't work out with the new one, we can always switch back.

Spring is now here.  Change is in the air.  I will work on getting myself back into shape, and with some family vacations coming up, there is much to look forward to.  Who knows, maybe even a baby announcement later this year...             ;-)