GRADUATION

I saved these pics for their own post because, let's be honest, this is a culmination of our time and effort for the last two years.  They deserve their own post!  This past year has been HARD.  Like really hard.  The program is 27 months but the first part felt like it was a breeze compared to the last part.  But, I know it is completely worth it.  It's all going to work out and we are finally going to have an income again.  Money we don't have to pay back, woot woot!  I am so proud of Jon.  He has worked so hard and done so much for our family to get here.  We debated whether or not to fly the whole family or just have Jon go.  But I am SO glad we went.  This is a BIG deal.  I think it was important we were there.  And it was a lot of fun.

Siesta Key Day 3 to the end

We love going to aquariums.  The kids love it and we love it.  It's a win-win.  We have been to aquariums in Utah, Miami, Denver, Seattle, and now Sarasota.  We love them all.  There are some pretty crazy things that live in the ocean.

 After the aquarium and naps, we went to the beach for our last night in Siesta Key.  We found a spot of beautiful fluffy sand that I love and just sat there and played for hours.  We watched the sunset and Jon took some amazing shots. 

Aren't they beautfiul?!

Jon does amazing photography.  I am always amazed at what he can capture.  I am not very good at landscapes.  Trust me, my shots come out looking really lame and uninteresting.  I'm just always really impressed with Jon's though. 

The next morning we packed up and drove to Fort Lauderdale.  On the drive out, we took a detour out to Snake Road.  A place we used to go to see the gators.  There were none there!  We were so baffled.  We couldn't figure out where they all went.  Weird.

We don't really have many pictures of the rest of our trip.  But we were able to spend one evening with some old friends from the ward.  It was so fun to see them and talk with them.  I felt like I actually had friends again.  It's been awhile.  The following day was graduation.  Our friends had offered to watch the kids but I decided to take them because I wanted to get pictures and I knew Benson would throw a fit and I still can't leave Brig.  So graduation was LONG.  But I knew it would be and it honestly went better than I expected.  The funny part was that we never took any family pics.  Okay, it's not that funny, but after all that we didn't even take the darn pictures.  After graduation we went to one of Jon's classmates for a class party.  That was fun to see some of his classmates.  We took two of the couples engagement pictures (who are now married).  So it was fun to see them.  And the kids got TONS of attention and loved it. 

The next day was Sunday, so we went to church at our old ward.  It was sacrament meeting only due to tropical storm Isaac brewing in the Keys, threatening to become Hurricane Issac.  Benson fell asleep mid-meeting.  I REALLY wanted the kids to nap during the drive so we bailed on the rest of sacrament and started driving to Orlando.  I know how lame that sounds, but our kids were seriously done.  They were so ornery and sick of being in the car.  I was just praying they would sleep most of the way.  So what happened?  Benson woke up getting in the car and never went back to sleep.  Neither one slept.  Vanessa finally fell asleep about ten minutes from the hotel.  Haha.  Oh, the ironies.  Also ironic that there was never once a threat of a hurricane while we were in school there.  But when we visit for the week, there is.  Isn't it ironic.  We spent the night in Orlando and flew out early the next morning.  It was a really fun vacation and nice to see some old friends.  But we are sure glad to be home, even if we are sleeping on the floor and eating on the ground :)

Siesta Key Day 1 and 2

We flew into St Petersburg/ Clearwater airport.  I guess we brought the lightning storm too.  We had to sit on the tarmac for an hour while we waited for the lightning to clear.  Unfortunately for us, the airport was an outdoor ramp, so that's why we couldn't deplane amidst lightning.  The rampers also had to wait for the lightning to get our bags.  After that excitement, we headed to our hotel.  We stayed within walking distance of the beach in Siesta Key.  This was our all time favorite beach in Florida.  We stayed here for three days.  Surprisingly though, after two days we were pretty beached out.  Even the kids were pretty sun saturated.  Poor Brig's eyes were blood shot at the end of those two days.  We spent two mornings at the beach and then the afternoons were rainy and stormy.  We mostly stayed in the room and watched movies and ate junk food.  A couple of storms had trashed the beach, which was kind of a bummer.  One of the workers said that they aren't allowed to clean the beach during turtle nesting season, so they don't disturb the nests.  Good to know for future reference.  Don't go to Florida beaches May-Oct (hurricane season and turtle nesting).  I like clean beaches.  It was lots of fun to see the kids play in the sand/shells and the water.  Vanessa loved the waves and was so much more adventurous than she has ever been.  It was lots of fun to play with her.  Benson of course loved the sea shells and throwing the shells.  Brig didn't try out the sand for the first two days.  But the third day, we found a patch of real, beautiful Siesta Key sand.  The fluffy white stuff that is like Florida snow.  He was in heaven with that stuff.  So, our third day in Florida we spent the morning at the aquarium and we lucky enough to get a clear afternoon for a beautiful sunset at the beach.  Those pics are to come though.....

Viva La Quinta

We moved!  Or, at least we left Little Rock.  I was so ready to leave.  Being in a hotel that long wears on ya.  We drove up to Springfield on Saturday, August 18th.  We went to our new ward in Springfield on Sunday.  Monday we flew out to Florida for Jon's graduation.  Crazy travels this past month.  The kids and I have been in every time zone in the continental US.  From Seattle to Florida.  Man oh man are we ready to stay in one place for a while.  Our family keeps asking when we are going to come out for Christmas.  As much as I want to see everyone, I am thinking we might stay in our own home, in our own bed, this year.  Stay put for longer than three months.  It's a dream I have.

Benson's Story....a post for a friend

Benson was born at 38 ½ weeks gestation.  It was a completely unmedicated, natural birth.  He was healthy and beautiful.  We requested to go home early and were released from the hospital just 24 hours later.  Benson was 6lbs. 15oz. at birth.

Birth day

After just seven weeks, he had gained four pounds!  He was growing like a little weed.  The nurses at the pediatrician’s office joked that he was soon going to be bigger than his older sister, who is just 16 months older and on the small side.   

Benson, 2 months

Looking back, there were a few indicators of problems long before we realized it.  They were subtle, like a small decline in his seventy-fifth percentile growth.  Then there was that time I held a friend’s baby, who was the same age as Benson; and thought, this baby is really rigid, I like how cuddly Benson is. He hit all his milestones within the range of average.  At eight months old he started commando crawling.  We called it his wounded soldier scoot because he didn’t use his legs, at all.

Benson, 9 months

 I started passively looking for answers at around nine months.  We talked with the pediatrician, asked friends, google.  He wasn’t pulling up to stand and was still scooting without using legs.  At 12 months, with no progression in his gross motor skills, we took him to a different pediatrician for a second opinion.  This pediatrician estimated his gross motor skills to be at about a 6-9 month developmental age.  At the time, this was shocking.  We were still in denial about how much strength he was lacking and absolutely nothing else seemed wrong.  The doctor recommended we either 1)see the neurologist 2)start physical therapy, or 3) wait and see if he catches up.

Benson, 12 months

In October of 2011, my husband and I were talking about possible diagnoses and I had the profound impression that something WAS wrong and I needed to do something now.  The next day I scheduled an appointment with the neurologist and contacted Early Intervention to get physical therapy started.  I called the neurologist in October and the soonest I could get an appointment was January. 

November was a rough month for me.  I spent countless hours researching, googling, and reading the same things over and over.  Praying for an explanation other than a neuromuscular disease. 
In January, we went to our inital consult with the neurologist.  My parents came with me since my husband was unable to get work off.  The doctor mentioned SMA but recommended NOT googling it.  I actually listened for once.  We were scheduled for an EMG three weeks later. 

At the EMG, it showed that Benson was a classic case of SMA.  The nerves responsible for sensation were responding appropriately but the nerves for motor skills were not.  The doctor still would not say it was SMA for sure.  She wanted to do genetic testing to confirm the diagnosis.  The results came back about three weeks later, positive for SMN1 deletion.

The peak of Benson's strength was at around 12 months.  Since that time, he has been gradually losing more and more.  We are doing our best to keep his losses to a minimum.  It feels like it is a constant battle against time and a nasty invisible disease. 

There is a light inside Benson that draws people to him.  He is a handsome little guy and a charmer.  I have no doubt that, despite the physical limitations he may have, he WILL do great things in life.

Down in Little Rock

Little Rock in pictures.  A few random things about life here.  We are staying in a standard hotel room which means everyone has to sleep through everyone else's noise, including for naps.  All of them are doing amazingly well.  It is the fifth hottest summer on record.  Burn bans are on for most of the state.  We are eating junk and watching way too much TV.  We can walk to a really cool park with the best splash pad ever.  We do that nearly everyday.  Brigham has really been such a champ through it all.  He is learning to nap anywhere and doesn't need to be held as often.  He started rolling a couple days after we got here.  He practically flips now he rolls so fast.  Benson is really needy and hates doing PT with me.  A result of all our moving, I'm sure.  Vanessa's protest of moving, or just manifestation of being three, is waiting too long before running to the bathroom.  Trying to do laundry as little as possible has run us into some problems.  Overall, we LOVE being with Jon but we can hardly wait to be in Springfield.  Have an income and have a home!

Life with SMA

I mentioned in a previous post that before the kids and I left Utah we had a chance to meet a family that has two kids with SMA.  It was so great to talk with their mom.  She had great advice as well as encouragement.  It is so weird to suddenly have this devastating disease in our lives. Even weirder is the fact that it is something I had never even heard of.  Spinal Muscular....what?!  Learning all the to-dos and NOT to-dos has been really stressful.  There is also a mantra that I keep hearing from other SMA families that you should be proactive rather than reactive.  Get bipap early, get a Gtube early because they will lose strength quick and things can go downhill quick.  It has been really stressful and hard trying to decide all the right things to do for Benson.  Another thing that was made even more poignant to me, was just how variable this disease really is. 
To have this make sense, you have to know a little SMA basics.  The gene affected by SMA is the SMN1 gene.  When Benson was tested he results came back positive for SMN1 deletion, meaning that gene is not there.  Instead, there is "backup copy" called the SMN2 gene.  There are multiple copies of this gene, I believe up to 8 but don't quote me on that.  Doctors can use how many backup copies a person has to classify their type (Ie SMA type 1 typically has 1 copy, type 2 typically have 2-4 copies).  Clear as mud?!
These two kids were both very strong.  The three year old boy could crawl around somewhat and get the toys he wanted.  The five year old girl has learned to crawl upstairs!  That is literally amazing to me.  Both these kids have three SMN2 copies, same as Benson.  Then today on a facebook SMA support group, I learned of a boy who could crawl until about four years and only has two copies.  Some of you may remember the blog Avery's bucketlist about a little girl that was diagnosed at 3 three months with type 1. She died at just six months. But their as another girl on facebook with type 1 who is in her twenties.
So that only makes things harder.  You just can't look at what someone else has done or what their life is like and know what to expect.  The uknown is scary.   
I still have days where I can't help but get teary eyed over Benson's uknown future.  Will he be teased?  How am I going to potty train him?  Will he be embarrassed if I have to help him to the bathroom or shower, if Jon isn't available?  Is he going to feel left out of all the things he can't do?  Will he cry when the kids play football at recess and he is left out, again?  Should I do homeschool or will public school be okay?  What extracurricular activities will he be able to do?  Will he have to have a trach?  Will he still be able to talk after said trach?  Will he be able to pass the sacrament?  Will he be able to serve a mission?  Get married? 
If I think about it too much, the stress and worry is almost unbearable.  My form of coping has almost been to not cope.  To push it out of my mind and just go with the ride.  Try to do as much for him as I can, let his life be as normal as it can be, and keep on keeping on.
After much debate over whether or not to document this, I have decided that I will.  I want to know exactly where his strength is at given points so I can know whether it is getting better or worse.  As of August 6, 2010, Benson is able to:
Sit independently.  He does tip over so we have to make sure there is nothing nearby that could cause head injury.  We use the bumbo anytime he wants to sit on elevated surfaces.  He is still able to feed himself independently.  His sippy cups are getting heavy and he sometimes needs help getting them to his mouth.  However, once there, he can hold them up long enough to drink.  He mostly eats with his hands as the utensils are heavy with food on them.  But honestly, what two year old doesn't prefer eating with their hands?!  He is standing with assistance and bracing.  His longest stretch of continual standing was about 30 seconds.  He can roll both tummy to back and back to tummy.  He no longer uses this as a means of transportation however.  I think this is because it's easier for us to do it for him and because once he is on his back or tummy, he can't get back into sitting position.  He is great with his manual chair.  He goes slow, but it's an amazing possibility for independence.  He doesn't however, love to be in it.  I think this is because our residences have not been very wheelchair friendly.  We are hoping to change that here in about six months.  Once in his wheelchair, he can get where he wants to be, but there isn't much for him to do.  He can't bend down and get a toy off the floor for example.  This gets extremely frustrating for him.  We are looking into getting a service dog for some of these things.  He has learned when lifting things to his mouth, or placing a toy kind of high, to brace his arm with his other hand.  He most often uses his right arm and braces with his left.  He can throw rocks in the water with a sideways throw. 
He can still eat and swallow.  He is extremely picky and is spitting things out more and more but he still is able to chew and swallow.  His diet is mostly milk and pediasure but we are able to get a few things down him now and then.  A Gtube is possibly in his near future, as much as I dread the thought.
His respiratory health is amazing.  He doesn't belly breathe, which is great.  His oxygen saturation is usually around 96.  He hasn't had a sleep test, but we put the pulse ox on for a few naps and a full night and sent that in to the pulmonologist.  For the duration of the night, he sats were only below 90 for two minutes.  Most of the time, they were about 94-95.  If they did drop, it was for less than ten seconds, totaling two minutes.  He had a runny nose about a month ago but he healed quickly and there were no problems.  Other than that I was scared to death, haha.  His cough is extremely weak and not productive.  He isn't currently doing the cough assist but it is something I plan to do once we are settled into Missouri.
In Utah, we were doing physical therapy twice a week with a home nursing program.  I am really hoping to get him doing water therapy in addition to that and maybe even some horseback riding therapy.  I think he would love both of those.  But we will see what is available to us in Missouri.  In this weird between spot we are in, we are doing as much PT ourselves and playing in the pool often as well.  As I am sure is common, he doesn't love doing PT with us.  I try to get him all psyched to stand and he'll agree and then once we start, he bails.  We also have a stander that should be here the end of the month.  We are hoping to work up to standing for at least an hour a day in addition to his therapies.
That about sums it all up.  I am hoping here in about a year I can write this post again and say that so many of these are improved and he is stronger.  I am hoping that he will learn to adapt and not rely on us to do so much for him.  I am also hoping that we will have been able to adapt our home to him so that it's all that much easier for him to have some independence.