Accessibility

Having our house accessible so Benson can have as much independence as possible is really important to us. So we tore out the carpet to put down wood. Carpet is tough rolling you see. We also opened up a wall and put in a doorway. This makes the playroom more accessible to Benson and just opens up the whole area. Added bonus we didn't expect was some nice morning light from the window in that room.
It began with ripping the carpet out and then contemplating that wall.  It was WAY more complicated than I even expected.

 But we did finally execute and then there was no turning back.

My in-laws drove the wood for the floor to Missouri from Utah and helped rip out the wall and put up a doorway.  We definitely would not have done the wall project without my father-in-law's help.  It was intense and we had no clue where to start.  Sadly, they were only able to spend two days and it took those entire two days to get the door framed and hung.

It was around this time that Jon sustained an injury.  He just chopped off the end of his thumb.  The dr decided not to do stitches.  That whole black chunk of skin ended up falling off though.  Should have done the stitches.  He's going to have a wicked scar.

 

Here is the door all hung and two rows of the floor in. Let's also note that the first two rows took a couple hours.  I think that was a night in itself, just trying to get started.

Our dining nook looked like this while we were under construction.  It got annoying fast :)

Brigham always wanted to be right in the thick of things.  He wants to see, do, and touch everything the guys do.  I moved in front of him once and was quickly reprimanded and shoved out of the way.

 Progress baby!

 It took a little over a week to get the family room done.  Here is the view from above, almost there.

I haven't taken any completed pictures, though the family room is done.  The path leading to the playroom is not quite done so I will update soon.  In the mean time, here is a funny sequence of Vanessa and Brigham eating some Pirate Booty.

 We also had quite the surprise for Missouri and our garden.  It snowed!  In May!  In Southern Missouri!  WHAT?!!!?!!

 

Mitchell's Journey

I've been following this story on facebook of a family who recently lost their son who was just 10 years old to complications from Duchenne Muscular Dystrophy.  I started following back before Mitch died, but it was only a week or so.  I cried with this family I have never met reading their accounts of their last few days with him, then the funeral, and then the grieving that comes afterwords.  The father usually posts now, recounting stories of lessons they learned as a family while Mitch was alive.  I cry just thinking about it.  It hits home so hard.  Sometimes I'm not sure if I'm crying because of this family or because of Benson.  The lessons they share are beautiful though.  He recently talked of going to a track meet and seeing everyone using all their physical strength being hard for Mitch.  The dad talked to him about how every person has their own race to run and we can't compare to others.  We can only work to be better than the person we were yesterday.  He talked of special olympics, something I had completely forgotten about and hope one day Benson can participate.  Their family is such an inspiration to me.  I hope that I can offer the lessons of spiritual growth and strength to Benson, Vanessa and Brigham that this family gave their kids.

My Husband, the Artist

I had no idea I married such a gifed photographer.  I was the one with the obsession when we got married.  The one that had always wanted to be a photographer but never had the guts to do it.  Jon actually bought we my first SLR, it was 35mm so I could shoot in black and white and develop my own film.  One day, I'll have a dark room.  Because there's just something about having a picture suddenly immerge onto a blank white paper that is so oddly fascinating.  When we decided to get our first DSLR, Jon started picking up photography too.  Pretty much he's freaking amazing.  Like everything he does.  He's just a talented man, aren't I lucky?!

 

Lym Family Pictures

I wish we could go shoot our family pictures here because this place rocked.  It was so fun shooting amongst all the trains.  I love love love these people (they're family) and so of course it was fun to do this shoot with them. 

 

They are heading to Seattle in a month or so and we probably won't see them again until Thanksgiving.  Sad day, living so far from family.  But we sure love them!

How Does Your Garden Grow

The Garden Project.  Oh, what a project.  We already have one garden box from a previous owner.  It was 3'x5' or something, I think.  But it was in the worst spot in the yard.  Literally, I have no idea how they grew anything there.  It was in the shade until 4pm.  So, in an attempt to keep it thrifty, we decided we would just move that box over to a sunny spot, and build another to match.  But it was only 6" deep and we felt like we wanted it to be a little deeper than that, so after digging all the grass out, we dug a big hole.  The plan was to put the weed barrier down, and then level the dirt, place box and done.  Ha!  Nothing is ever that simple.  Intro wires.  Totally in our way.  Shoulda called on that.  Although, I can't say that it would have changed our placement.  It's a good spot, I think.  Back up to pre-garden box idea because the first plan was to consider doing an in-ground garden.  That idea was gone as soon as I started digging in this....stuff.  It's clay/rocks with a little dirt in the mix.  So two ideas were now being scratched and we went back to the drawing board.  I got to fill in that awesome hole I spent two hours digging.  It was an awesome workout and the kids did enjoy playing in it and finding snakes worms.  They're just HUGE!

The old box we had didn't feel deep enough.  Even though Square Foot Gardening says you only need 6", we felt we wanted 12".  Especially because we were putting the weed barrier down and the ground underneath would be completely impossible for weeds to grow in.  So Jon went and bought some ridiculously priced wood, that was the best price we could find, and built some boxes.  We used untreated cedar, so we don't have to worry about anything leaking into the soil and cedar is rot-resistant.  And we drew up a new size to get the most square footage out of our rectangle that we had already ripped up.

Don't the boxes look amazing though?!  I'm always impressed with Jon.  He goes the extra mile to make them look nice, like routing the sides to give them beveled edges, etc.  The stones in this pic are stones that we already had, we think they were laid down for a grill.  There are only six though, so we aren't sure what we'll do with them.  We can't find any to match.

It took forever to get the "mix."  And it was more way expensive than I like to remember.  The peat moss was cheap at least.  I think that cost $10 for all three.  We didn't buy nearly enough vermiculite.  The square foot gardening "recipe" says to use 1/3 vermiculite, 1/3 peat moss, and 1/3 compost.  Had we bought that much vermiculite, it would have been $200!  And I called around to at least five places.  That was the cheapest we could find!  We got compost from four different places, though I don't know how many sources we actually had.  We used cotton-burr, compost from the local recycle plant which is yard waste, compost from Carson's which they said has all kinds of crazy stuff but couldn't tell me what, and cow manure.  That's right, I bucked up and went with a manure.  I bought the cheap bags from Lowes.  At that point, I was sick of spending money on dirt and poop and just wanted something cheap.  The sales associate said it's actually a mix, with lots of fillers so it was probably only 50% manure.  I was nervous to use it, but it looked like black dirt and didn't have a smell, other than earthy.  At first, I didn't want to touch any of it with my hands.  I got away with not touching it while mixing, but once it was time to plant, I kind of had to.  It wasn't too bad and my hands didn't stink or anything after.  So I guess the manure was okay.  There were people advertising on craigslist, that you could have their horse manure or rabbit manure or whatever.  But that was a little too real for me.  I'll take the bagged stuff from Lowes that is already composted and I don't have to take my pitch fork and clean your barn.  Maybe we'll get the kids a rabbit that can poop in the garden all winter long.

 Square foot gardening says you have to have a grid.  But, I was WAY past the point of spending more money on these boxes.  This was supposed to be a $100-weekend project.  It was way over the price and took like two weeks or something.  So, back to the grid.  I used duct tape and string to plant.  It didn't last long, obviously.  But I did eventually go to Lowes and check out prices for the lattice board.  It would have been almost $50 to get enough.  So I bought little hooks for $1.50 and now the string is permanent.  It even remains after our last storm.

 Jon has been working on putting in a cement border around the garden now.  He has two of the four sides done.  It only takes an hour or so to get one side done, but then you have to wait for like two days before taking off the boards/forms.  And we didn't buy a ton of those.  So it's kind of a drawn out process. 

One idea I really liked in the square foot gardening book is that you plant in rotation.  So you don't plant all your tomatoes at once, or all your cucumbers, etc.  You plant one of everything, then plant again in a week.  That way, everything isn't coming to harvest at the same time.  And you have some give in when things need to be planted, so it's kind of fun to try.  It might not make a difference for some of our vegetables.  But at least we won't have 40 carrots ready to be pulled in a week.  Maybe we'll get 10 or so.  We are planting almost everything from seed.  Except strawberries, I bought those and planted them all, obviously.  They aren't too expensive though.  I bought some of the pricier ones, because they looked healthier and they were $8.00 for 25.  We won't get many strawberries this year, so we'll for sure have to stick around here for at least three years, until the strawberries don't produce anymore.  I have also planted corn, green onions, peas (I was probably too late on those, but we'll give it a shot), basil, rosemary, parsley, cilantro, cucumber, tomatoes, cantaloupe, and carrots.  I might be forgetting something, but I think that covers it.  I didn't want to get too crazy this year and get overwhelmed but I kept going back for different new kinds of seeds.  I would read about growing another vegetable and think, I love that one fresh, I better get those.  I just really hope this makes the kids love eating fruits and vegetables.  We'll see how green our thumb is now.  I'll post some pics once we have some growth and the cement border is done.

Is It Just Me or Is It The Time of Year?

I feel like we had this dead lull at our house.  Right before we left for Utah, it was like we were waiting for spring, waiting to go, and just kind of hanging out.  Ever since we have been back, it has been insane.  Vacation recovery and spring mixture make life crazy?  We are trying to get our garden in and it has been this weekend project turned 10 day and counting project.  But it'll get a post and some pics soon.  We have also been crazy with dr appointments.  Our typical week has gymnastics on Monday morning for Vanessa and water therapy in the afternoon for Benson.  Then Thurs we have PT but she comes to the house, so it isn't really too crazy.  The two weeks after coming home for Utah we had one or two appointments per day, most days of the week.  Oh, and two make-up classes for gymnastics. It was exhausting.  Because of course, all appointments are scheduled during regular working hours so it's me and the kiddos.  How do families with both parents working handle kids with extra medical needs?!  You would never be able to actually work!  I have been up way too late on too many nights, planning our garden, learning about gardening and trying to plan Vanessa's birthday.  It is a bit of a shocker that I am actually trying to get ahead of the game on a holiday (birthdays are holidays, right?).  I plan to get it figured out, pre-birthday week.  But, if this garden keeps taking so much time, it won't happen.  I really want to make her a floor pouf with a hanging canopy above it for an adorable nook that she would adore.  Here is my inspiration from Pottery Barn.  It's $140.  I still need to price out fabric to see if I can do it cheaper.  I think I can.  If not, well, she might get a sheet teepee or something ;)

And here is the floor pouf idea.  Though I don't love the fringe on here.  And I found another tutorial that has pieced sections that I think I might actually like better.  It will all be pink and purple, of course.

While we are talking about Vanessa, she has recently became friends with the entire neighborhood, okay maybe just our whole street.  Yesterday, we made her come inside to eat dinner and in that 45 minutes, three different friends came to the door to ask if she could play.  They are all older elementary ages, ranging from 5-10 probably.  We have strict rules that she has to stay in the front yards where we can keep an eye on her.  It hasn't been a big deal because we have been outside working on the yard ourselves.  But I'm nervous and not really sure what we'll do when we can't be outside as well.  It's funny to me though that they all love to play with this little 4 year old.  Tonight, three brothers came into the backyard and played with all three of the kids while Jon and I mixed the garden boxes.  They were so sweet with all the kids and so concerned everytime Brigham threw one of his tantrums.  Benson tipped over one time and one of the boys came running to tell me because I was getting a load from the truck.  Another boy gave Benson his coat because he said he was cold.  I didn't have much hope for our kids having friends in the neighborhood, because it didn't seem like there were many "babies."  Guess I was wrong.

Bedtime Prayers

Bedtime prayers with Benson:

Me: "Do you want to pray or do you want me to?"
Bens: "I don't want to pray."
Me: "Why? Heavenly Father loves it when we talk to him."
Bens: "So he brings us presents?"
Me: "I guess kind of. He gives us blessings. But they're even better than presents."
Bens: "So, like cars?"

Oh the simplicity of being 2

Easter

When we scheduled Jon's time off to go out to Utah it was November of 2012.  And the night before the meeting, we decided we better throw an idea together of what we wanted for vacation.  We knew Benson needed a dr appointment at Primary's so we based our trip around that.  Feb/March time was about right, add in that Brig and I had birthdays, bam, last two weeks of March it was.  We didn't even bother to pull out a calendar and see that Easter weekend would be the weekend we would be traveling.  But, such is life.  So, we drove for most of Easter Sunday.  We did however, do small Easter activities and of course, had a good discussion (as good as it gets with 4 yrs and under) about the TRUE meaning of Easter.  I mentioned in my Utah week 1 post that we died eggs with the Purdy fam.  I did fail to mention though that we died eggs and did an Easter egg hunt with the Bradys as well.  We did this on Friday.  It was H-E-C-T-I-C.  The boys, for whatever reason, decided it was a good time to play some ball right as we were busting out the egg dying.  So it was the chillins and the women.  Never enough hands.  Anyway, we hid some eggs and the kids found them and also died eggs.  I was trying to take pictures and help Benson find eggs and it didn't work.  And Vanessa was upset because she wasn't as fast at finding the eggs as the other kids and they were taking too many!  Haha.  I honestly don't know a good way to do an Easter egg hunt fairly across the ages without making each kid take a turn to run and grab one egg.  But that hardly seems fun.  So I guess it is one of those things you just have to deal with until you are older and faster.  Maybe by next Easter we can convince Benson a power wheelchair is a good idea and he can just beat everyone, or run them over.
Here we are trying to get everyone together and going on the egg hunting.  Restraint is nearly impossible once you have stepped outside.

 

 Brooklyn makes the craziest faces for the camera all the time.  This kid cracks me up!

 I love how when they're really young they are happy with an egg in each hand.

 I debated whether or not to wake Benson from his nap for the hunt but decided that I would.  He was pretty groggy and I probably should have just let the poor kid sleep.  I didn't think he would want to miss it, but it was hard to tell if he enjoyed it or not.

Before Jon and I left Utah, I stopped by Wal Mart and grabbed a few Easter things.  When we got home on Easter Sunday, I tried to distract the kids while Jon hid eggs and baskets.  Er, I mean, the Easter bunny somehow knew that we wouldn't be home until late so he waited for us to get home and then hid eggs and baskets for them.  I don't know if they bought it or not, but they saw Jon's shadow from the bedroom and that it was daddy outside.  I tried to convince them it was the Easter bunny and if they looked, he would take all the eggs back.

 Brig just looks exhausted, poor kid. 

 I think Vanessa thoroughly enjoyed being the oldest and getting all the eggs she wanted, though she did well slowing down to let Benson get some too.

 A basket!  Or bucket, whatever.  And a car!  Always a favorite!

 The last egg.  Collected together. 

I'm not sure who got what, since I make them share it all anyway (I know, I'm mean). But the toys were binoculars, jump rope, a car, frog ball thing, and bubbles.

On Monday, I watched several of the Bible Videos with the kids and we talked about why Easter is special and learned about Jesus.  I feel like we kind of missed Easter this year, but I've felt that way with most things.  It's just always so crazy and I can't seem to get my act together.  Hopefully by the time the kids start to notice, I'll have this whole three kids thing figured out.

Primary Childrens Appointment

On March 26th, we went in for Benson's appointment with Dr Sakonju and Dr Swoboda.  These doctors are considered experts in the field of SMA.  The closest expert to us here in Missouri is a doctor up in St Louis.  We considered going to this doctor for a while but finally decided to stick with Swoboda since we have already established care with her and because she is doing clinical trials.  After this appointment, I may change my thoughts on that, but we'll see.  Anyway, we arrived at 9am, which was slightly late.  Never a good start to a stressful appointment.  Benson hates going to the doctor and Jon had to check his heart rate and breathing since he was freaking about the nurse touching him.  His darn cough was still going (and is still going) so we weren't able to do versed for the EMG.  So Jon sat on the bed and held him while Dr Sakonju worked as quickly as she could to get a reading on the neurons.  The EMG or CMAP basically tells us if he is losing neural responses.  I had to have Dr Sakonju re-explain this to me and I think this is the layman version of what she said.  They get a number that represents how many neurons are firing in a particular area.  Last year Benson was at around 3.5, this year he is at 2.1.  This was slap in the face kind of bad news.  And a total shocker because he seems to be so much stronger than he was last year.  I asked the doctors and they kind of seemed to think that it was possibly a result of him learning to compensate despite further deterioration. 
The whole visit was somewhat chaotic.  Benson was crying most of the time, and this seemed to make it a little stressful for everyone.  I am probably somewhat over sensitive to doctor's bedside manner.  I expect a doctor to have respectable social skills as well as extensive medical knowledge.  I just wasn't overly impressed with the first half of this visit as far as bedside manner.  We didn't see Dr Swoboda until the second half of the visit and I feel she is easier to talk with, but Benson had also calmed down by then and wasn't causing quite as much havic so maybe I should give them the benefit of the doubt. 
I still can't get over a conversation I had with the nurse.  She was asking about his bowel movements.  Probably TMI for the www, but lets just say her and I have different opinions about what is regular but we both agree Benson is not regular.  We also have different opinions about how to achieve said regularity.  Granted, she is a nurse and she works specifically with SMA.  But I'm a mom living with SMA.  I switched from giving him Miralax after reading it can cause neurological problems if given long term.  I am now giving him magnesium citrate, which can cause diarhea or absorption issues if given too much.  Her question to me, "Who told you to do that?" kind of blows me away.  I wasn't aware I had to ask permission.  Again, I didn't love the bedside manner.
I could go on, but I won't.  Suffice it to say, after the first hour and a half, I was feeling like the most negligent mother in the world and like Benson was declining at an exponential rate.  He has only gained a few ounces since last year.  Yes, that was ounces.  But, he has also been sick for a while so it is possible he has even lost a few more ounces in the past couple weeks.  Either way, he's off the charts in weight.  Everyone is concerned about this, of course.  I have talked with the dietician extensively about doing a GTube or just trying to keep him sustained long enough to get through the picky phase.  It's a never ending debate.  It's a decison we won't come to lightly if we ever do decide it's something that needs to happen.
The other issue is the night waking.  He had a pulse oximeter in Utah and has oxygen sats were always pretty good.  He dropped a few times, but less than 2 minutes total throughout a night.  A pulmonologist reviewed this and wasn't concerned.  However, we haven't had a pulse ox since coming to Missouri, so it is possible this has changed.  I scheduled an appointment with the pulmonologist here in Springfield, but it isn't until June.  Dr Sakonju was really surprised I haven't seen the pulmonologist here yet.  Apparently she felt he should be more first contact.  But when we saw the pulmonologist in Utah, he said we didn't need to come back for a year.  So I wasn't concerned.  Considering how many doctor and therapy appointments we have every month, I was okay letting that one wait until the year mark.  I digress, basically they are recommending a sleep study and probably bipap.  The idea makes me cringe.  But, there is nothing we can do until June and I'm sure he will be fine in the meantime.
So the second half of our visit we talked with Dr Swoboda.  She gave us the option of putting Benson on valproic acid or Depacote.  This is a seizure medicine that has shown to somehow protect the neurons for the disintegration caused by SMA.  There isn't a clear reason as to why, but it for some reason works.  There are some very risky side effects however.  Dr Swoboda said she is the only doctor still prescribing this particular medicine for SMA because of the significant risks.  The biggest risk is that 1 in 10,000 will develop liver failure and it can be fatal.  Another possible side effect is learning disabilities.  Dr Swoboda isn't convinced that the learning disabilities are actually caused by Depacote.  Since the drug is only given to young children, that aren't school age yet, they may have developed the learning disabilities regardless of taking Depacote.  Anyway, these were the two biggest factors for us and we ultimately decided not to give him any.
The other thing we discussed was possibly getting in on some clinical trials.  Currently underway are some trials with the pharmaceutical company ISIS.  There is a possibility we could get into this trial sometime next year.  Another company called Repligen is also doing trials.  She recommended we contact a doctor in Maryland if we are interested in doing that trial.  Clinical trials are a bit scary to me but also kind of exciting.  There are definitely risks, but also possibly some huge benefits.  It's a hard decision to make and I don't know enough about either drug at this point to say whether or not it would be something we would be serious about. If a drug isn't going to present some serious advantages, I don't want to risk serious side effects. 
So, the second day we went back for his physical therapy evaluation.  I was really proud of him for showing off his skills.  He did some good rolling.  He is really good at rolling from his back to one side.  His arm gets stuck a little when he tries to go all the way around but with a little help he can make it.  We did some tummy time and he can lay on his tummy and hold his head up for 7 minutes.  And we supported his elbows and helped him get in position to hold himself up with his arms fully extended.  He hyper extends his elbows when he does this, but with a brace I am pretty sure he could do this better and I wouldn't worry about the joint quite so much.  We also put his AFOs on and some knee immobilizers and he stood on his very own, without me touching him for a solid second.  He can stand for a full 15 minutes when I give a little support, mostly balance.  He also played around on some of the sit and ride cars and we tried to teach him how to push himself.  He worked really hard and earned the toys he got so I was really proud of him.  Donata, the PT, was much more positive about where he is at and made me feel much better about his progress.  She said he is definitely a solid type 2. 
Towards the end of our visit, a mom and her son were at Primarys for the ISIS trials and she came over and talked with us for a little bit.  It was so nice to talk with another SMA mom face-to-face, not via Facebook.  She has two kids, both with SMA type 2.  Her son is 5 and even though he is a type 2 because of the physiology of the disease (he has three back-up SMN2 copies like Benson) he is actually a type 3 by function.  He can walk!  It was so amazing to see.  She also has a daughter that is a type 2, and she is 2 1/2 yrs old, but she is significantly weaker and is unable to crawl anymore.  It was really interesting to talk with her and hear her experiences with things and how she gets all the equipment they need. 
After the first day I felt like Benson had lost so much on the CMAP because I wasn't doing enough.  I didn't have him doing the cough assist regularly, I didn't have him on bipap, and he wasn't getting enough nutrition.  After the second day, I went back to feeling like life could carry on as usual and Benson was going to be okay.  Sure, there is room for improvement (especially in the nutrition department) but it's things we are just going to have to work on day by day.  This disease is hard enough without being depressed about it.

Utah Week 2

Saturday morning started off bright and early.  We had to meet at the temple at 9:30 to do an endowment session with Jon's sister who was going through for her first time.  It was amazing to go to the temple again.  It has been way too long.  It's hard when the closest temple is three hours away and you have three little kids.   After the session, Jon and I sat in the celestial room for a few extra minutes to soak in the beauty and simplicity of it all before heading back to "the real world."  We headed to the Bradys that day.  I went shopping with all the Brady women and all the men took the kids over to Tommy's house.  I felt bad leaving the kids again to go shopping, but I didn't spend hardly anything this time.  And everything I got was for the upcoming family pictures.
On Monday Jon, Shauna, Stephanie and I took the kids to City Creek to get lunch and play on the dinosaur playground.  Vanessa loved playing on the toys.  Benson did as well, until I stepped away out of sight for a second and it made him nervous.  It kind of ruined it for him.  But we still enjoyed some yummy McDonalds. 

On Tuesday morning, we had an appointment with Dr Swoboda and Dr Sakonju at Primary Children's.  It was a long, rough morning for all of us but that will be a separate post.  On Wednesday, Benson and I went to a physical therapy appointment at Primary's for an evalution.  This day was much better, but again, more on that later.  After that, we headed home to get ready for family pictures.  I had a few more errands I wanted to run but when I was ready to go, I couldn't find my keys.  I looked and looked.  Jon looked.  His mom looked.  Two hours later, we found them in Stephanie's friend's purse.  Haha!  In the meantime, my sister ran a shirt over to me so Jon would have something for the picture and we called it good.  That evening we took on the crazy task of taking family pictures and being in the picture.  This required some intense photoshop, but in the end, I think it all looks pretty good.

After pictures we all went to McDonalds for dinner and the cousins ran around in the PlayPlace like hooligans.  On Thursday, Jon and I went to a play with my parents.  It was completely coincidence that we ended up doing the same "adult" activity with both families.  Luckily though, it was a different play.  This time we saw Les Miserables, A Lot Less Miserable.  On Friday, I had agreed to take family pictures for my sister at Union Station in Ogden.  I loved shooting here.  I wish we would have had time to get our own family pics there.  It was so fun and cute.  Originally Jon was going to come too but he ended up staying at his parents to spend more time with his brothers and I went by myself.  I was nervous.  I feel like we work so much better as a team.  But I guess I'll let my sister be the judge of that.  I did my best anyway.  I haven't edited them yet.  But I think there will be some cute ones.  On Saturday, we had to start the long journey home.  Vanessa cried when we told her it was time to go back to Missouri.  She loved every minute of having non-stop play dates.  We were all a little sad, but it was definitely time to get back to our house and resume our own routine.  See you in November Utah peeps!