Since We've Been Home

The night we got home, we put up the Christmas Décor.  Since we have just started collecting, that took all of an hour :)  It's ok that there really isn't more because we hardly have the room for it right now.  We need a major bail out in our attic. 

We got things arranged to get Benson's feeding pump and I am starting to feel like it was an ok decision.  I won't say I love it yet, but it isn't that WHAT DID WE DO?! feeling anymore.  

Vanessa had another gymnastics meet and did absolutely fabulous.  I am so proud of her for remembering her routines after not practicing for a whole month!  I was seriously so shocked she remembered them.  She did great.  And we had sitters for the boys this time so it was enjoyable to watch.  She took third overall for her age and level. On the way home, she told Jon she wanted first place next time because they get a bigger trophy ;)

 

We have been trying to do fun Christmas activities. A few have included making a gingerbread house, Christmas movies and hot cocoa, seeing Santa, Christmas books, our Elf named Fred, and Christmas shopping. We went to the mall once to get Jon's present and the kids kept pointing out in utter amazement all the Christmas decor. Haha. Guess ours pales in comparison.

We have had some intense snow this year. We are told its way out of the norm. Last year was too though so I'm thinking there really is no norm.

I have been doing a lot more photography for people and I'm loving it. It can be stressful too though because of all the pressure to please people. I need to learn to say no when I know something will end up not working out. Just keep working on it I guess.

To end, here's a random cutie from Benson: Benson woke this morning and told me all about flying in his power chair at Grandpa Brady's.

This is part of Santa's Wonderland at Bass Pro. I took one pic then my phone died. Darn.

The Drive Home

Thankful

The week of Thanksgiving was lots of fun.  My sister Carrie came in town and we got to see them for the first time in over a year.  On Sunday night we had dinner with all the Bradys.  Matt and Shauna gave all the kids their Christmas jammies and dresses.  We also had the cousins exchange gifts.  We gave Tommy and Nicole their gifts.  And Jenny and Steven gave us their gift.  On Monday night, the Purdy clan had an adult only dinner at the Fancy Schmancy Roof Restaurant.  It was delish.  And afterwards all the guys went to the Jazz Game.  On Tuesday we had pizza and game night at the Bradys, also adult only.  It's basically the only way to play games anymore.  On Wednesday Shauna hosted the Brady Lady Brunch.  It was for all her daughters-in-law and their mothers and their daughters.  It was lots of fun and delicious as well.  Thursday was the real deal day and we spent it with Bradys this year.  Tommy and Nicole were there for dinner and it was delicious.  Shauna made stuffing with croutons from Kneaders with a killer recipe.  I don't always love stuffing but this was awesome.  I made the mashed potatoes and an apple pie.  On Friday we had Thanksgiving with Purdys.  My mom had spent most of the day Thursday cooking and preparing so most everything was ready to go.  Around 1 we did family pix.  Jon and I set everything up on the tripod and Ryan's brother used the remote to shoot for us.  It worked out great.  The pix turned out pretty good.  I was slightly disappointed with my posing skills.  I still don't have it all down for groups that are so large.  It's hard to get that many people in place!  I have a hard time not looking at the picture and seeing what I should have done.  Will I ALWAYS feel this way?!  I hope not.  Dinner was good and afterwards we had a cookie and ice cream tasting competition.  Carrie's cookies won.  But the competition was a lot of fun, even if I didn't win :)

On Saturday we had to make the long drive home.  I hate that drive.  At least it's worth it.  I wish we could just pick Springfield up and move it about 12 hours closer.  An eight hour drive would be ideal, really.  Or, at least do-able.
The first day back from vacay Jon had a 12 hour shift.  Bummer.  Welcome back to reality, huh?!
At the end of a rough year, I feel like I need to reflect on everything that I am grateful for more than most years.  I can't help but see the tender mercies of the Lord in my life ALL the time.  And yet, I struggle to not feel overwhelmed with all that is going on right now.  It can sometimes leave me feeling a little grumpy.  We truly are blessed to have awesome health insurance, with an awesome job, awesome kids, and awesome family (even if they are far away).  We are blessed.

Festivities

Once we were out of the hospital, we laid low for a few days. But we did start to get cabin fever by Saturday so we went on an outing to Scheels. It's a new sporting goods store in Sandy. It has a Ferris wheel, shooting games, restaurant, giant fish tank, and tons of taxidermied hunting game.

After, Jon took the kids to his brothers to watch a game and I went to Ikea with Steph and my mom. I wanted to get a giant expedit but decided it would fit in our car with all our other stuff. So I resisted. Just as well, it's cheaper not to buy something. And maybe I can have Jon teach me how to build my own ;). I did buy a few things and I'll post pix when they're assembled.

On Sunday we did a dinner with Brady's and had a cousin gift exchange. Nicole made Benson and Brigham cute car mats with pockets for the cars. And Vanessa got a cute Fancy Nancy jewelry box. Jenny and Steven also gave us our Christmas gift, a gift card to Texas Roadhouse. Shauna gave all the kids their Christmas pajamas and dresses. 

On Monday, we had an appointment with the surgeon and everything looks good. It worked out amazingly well that this surgeon worked with a surgeon for 8 years in Birmingham. He said they do gtubes identical and getting follow up care with her would be just like seeing him. The best part, she is now at Washington University in St Louis where Benson's neurologist is.

 

Discharge

Isn't it funny how easy it is to get in to the hospital and how impossible it is to leave?!

It's 3:30. We've been ready to go for three hours. Yup, three. Sigh.

Last night I got much more sleep than I expected though we did have a rough patch for awhile. 

Around 2:00am he started to desat to 88-89 and then would jump back up to  the 90s. I tried turning him to his side and coughing with the cough assist every ten minutes or so. The nurse came in and mentioned oxygen. I got nervous and text Jon as well as asked some moms on FB. I've heard oxygen isn't good for SMA but I wasn't sure under what conditions.  Jon woke to get his text and said we should cut back on the oxy, because it will depress ventilation. The next half hour he dropped to the low 80s and wasn't coming back up. I was coughing him constantly. The nurse finally showed up with some o2. This helped to get him over the hump, the oxy wore off and he was fine again. 

They came for more labs. First phlebotomist tried twice and couldn't get it. IV team came and got it on the second try. Poor guy. 

Then there was RT. We asked them to come help us get the endless junk out. Coughing wasn't enough. They used a manual percussion disc he disliked and then ended up needing to suction. Suction is the end of the world to Benson . After being suctioned, he told us at least once an hour not to suction. And anytime someone came in the room he told them not to suction. At this point, the dr came in and said we could go. Hooray. This was at 12. We figured an hour and we would be out. It's 4:30 and we are just entering Bountiful. Four lovely hours to get out. Lots of mix ups and miscommunications. But we are finally out and things look better already.

We did have a few highlights to the day. A therapy dog came to visit. We went and saw the play room. And Vanessa made Benson very happy being there.

Take the bad with the good

We had a fabulous first week in Utah. And then the flu hit. First it was Brody. Then Vanessa, then me.... It continued through 10 of the 11 at my parents house. Luckily it was the "stomach flu" or more formally gastroenteritis. 24 hours and you're done but it feels like a week. It hit Benson as well. He got a fever of 101-102. He fell asleep on my dad's lap and then was given a blessing. Once again strengthening my faith in a kind, mindful, and merciful Heavenly Father. I am so grateful for the priesthood. I can't imagine where we would be without it. Benson slept for three hours, I gave him Tylenol when he woke and the fever broke a half hour later. He was fine the entire rest of the time.

Jon drove in on Saturday and we decided to stay at his parents that night while my family healed from the plague. On Sunday, Jon and I left for Park City. His parents watched the kids so we could have a fabulous getaway. It was so nice to have some much needed alone time with Jon. It felt weird not having to compete with yelling and all other kinds of chaos to talk.  We did some Christmas shopping, ate lunch at a Mexican place, went swimming, sauna, hot tub, steam room, and watched movies. Then I finally decided I was ready to try sushi. So we went to Blue Sushi for dinner. I liked it but my fav was still the Hawaii Five O from Ocean  Zen in MO. 

We stayed at the Westgate Resort near Canyons. It was the perfect getaway. 

On Monday we met my parents at PCMCIA to get some labs done and then headed to City Creek. The kids loved all the water features and playing on the dinosaurs. We had lunch at the Cheesecake Factory and then headed to Brady's. Vanessa went to play with Molly and we finally got to see Jenny and Steven's super cute house. Vanessa slept at Mollys and is sleeping at Brooklyns tonight. I've hardly seen the girl. She is going to be devastated when we leave her cousins.

On Tuesday we got up at 6 am and headed to the hospital with Benson. We had talked to him about getting a new belly button to make him strong. We called it Iron Man belly button. On the way to the hospital, he informed us he wanted a Raphael button. So Raphael it is. They were pretty quick getting us in and through. They said they needed to do IV fluids before surgery. IVs are usually done after induction because it's scary to kids. I told them it was only happening with versed. They gave him the versed, and traumatically got the IV. After all the tears, they never started any fluids.  I call that unnecessary but what do you do?

So back up with me a week.  When we were scheduling surgery they had a spot open but Jon wouldn't be here yet. It was the surgeon we had originally wanted. We tossed the idea around, Jon suggested coming ASAP. In the end, we switched surgeons and got a spot the week we were hoping for.  I can't believe i entertained the idea if doing this without Jon. Sometimes I'm crazy. Jon is always so cool and calm. And what a blessing that he knows all the medical mumbo jumbo and what questions to ask! I tried to listen but at this pint, Benson was going crazy and I just left it up to Jon to communicate with docs. Still no fluids going, we headed to the OR. I passed a hysterical three year old off to the anesthesiologist. It was a heartbreaking moment. I held it together until he was out of sight but this mommy did shed some tears. I knew he was going to be fine. I was just sad he was so scared.

Here's the little man in loopy land. An hour later, I was able to go be with him in recovery. He cried until I climbed on the bed and held him.

A half hour later, we were took a ride to our room. Jon joined us and Benson continued sleeping. I was starting to get concerned about the length of time fasting and asked about his TPN. It hadn't been ordered. Ball dropped. They were able to get it pretty quick though and he had it going within an hour. The next two hours were rough though. They thought Tylenol would be enough pain management. But it definitely was not. A little morphine and some oxy later, he slept a solid six hours.

I went to a gtube class at 4 and he woke up while I was gone. And Jenny and Steven came to visit.

They brought us all kinds of treats and a fabulous balloon that is Benson's favorite form of entertainment currently. I never would have thought of that! It's Monday evening. Jon has headed home to be with Brig. It's just me and the little man tonight. We are praying for a discharge tomorrow but we'll see what happens!

Utah!

We have arrived in Utah.  It is fabulous getting to spend some much needed time with family.  Though we are definitely missing Jon.  The flight getting here was mostly uneventful.  I was equipped.  I had tons of stickers, movies, iPod, iPad, and new toys they had picked out but not been allowed to touch.  They played with the toys the entire first flight.  We had a layover in Chicago.  That involved a chocolate shake, Benson's wheelchair getting stuck on the moving walkway, and Brigham getting slap happy hysterical.  He was out ten minutes after settling into our seats for the journey to SLC.  Vanessa and Benson followed just 45 minutes later.  The hardest part of the flight was finding a spot for the sleeping babes to be.  No one really wanted to be held, they just wanted the space to spread out and crash.  I ended up on the floor with Brig at one point so that he could spread out a bit across my lap.  It got a little crazy when I had to wake the kids up and get them off the plane.  Vanessa and Benson both had a melt down at this point.  Surprisingly, Brigham never had a tantrum, the whole time!  I carried Vanessa and Benson from the bottom of the B gates to baggage claim and learned that I am not strong enough to do that.  I was huffing, puffing, and sweating.  Ha.  Another lady helped carry Brigham and the Air Serve guys carried our bags.  Thank you Southwest for not bringing my wagon plane side.  I figured it was a no-brainer that someone would want that to help carry all their kids and bags, but obviously someone who doesn't have kids unloaded that plane.
Since arriving, we have been getting all kinds of cousin time in.  I have intense mom guilt for having to have someone watch my kids every day except today (Saturday).  That means someone watched one or more children every day for four days.  I can't remember that ever happening.  It was nice to get some breaks but oddly accompanied with that mom guilt.  Hate that mom guilt.  I'm with my kids all day all the time without a break and I feel guilty for losing my patience with them.  I get a break and have more patience but feel guilty for leaving them.  I got probs.
Benson had an appointment with Shriners and was molded for a back brace.  I am super excited to get it and test it out.  We are hoping it will provide him with extra support for times when he needs to do an activity while sitting, especially during preschool activities. 
Vanessa is doing swimming lessons with her cousin Molly twice a week and is absolutely loving it.  Vanessa had her first sleepover with Brooklyn.  She came and stayed at my parents.  Vanessa was thrilled.  I think the older boys overwhelmed Brooklyn a little bit but they had a lot of fun.
Brigham has taken to Papa like they are long lost BFFs and looks for him all the time.  And naturally, he has been hoarding any tools he comes across.
Today was nice enough weather that we were able to go to the park and play a little bit.  We have also been taking advantage of my parents sand box.  Benson loves playing in the sand.  We really probably should get him some sand to play with somewhere!
Jon is at home taking care of Rocky and has been sending me occasional pictures of completed projects.  He's knocking them out!  Although he seems less and less excited about being alone out there in MO.  I think he's ready to have us back.  It's always good to feel loved, and we are definitely excited to see him again! 
Jon and I decided to celebrate our anniversary while we're here in Utah and have some sitters.  So, for the first time EVER since having kids, we are going to do an over-nighter in Park City (kid-less, obviously).  We are quite excited to have more than five minutes to focus on each other.  I can hardly wait!

Gymnastics

Vanessa had her first gymnastics meet as a part of the pre team on Nov 4.  I think I may have been more excited than her.  I was excited to see her do her routines and see where she was at.  We arrived at the gym at 8;30am.  They did beam first, then floor, vault and finally bars.  There were four teams competing.  There were four level 1 four year olds.  (they broke the categories down a bit much this meet but they did each level and each age).  Vanessa took third overall.  She actually has some pretty incredible skills but she was quite distracted this time.  Some highlights were when she decided to start hopping like a frog and jump on the vault mat like a tramp.  She doesn't have her routines quite memorized yet.  And I don't think being gone for the entire month of November is helping.  I would love to see her embrace gymnastics and continue to compete to the upper levels.  I think she has an amazing talent for this sport.  But I am trying my darndest to not pressure her and let it be something she WANTS to do.  She definitely enjoys it and she is one tough cookie.  I am so proud of this girl.  She just makes me fabulously happy.

Halloween

This year for Halloween we had a super heroes theme at our house.  We even found a super dog costume for Rocky at the thrift store.  I feel like I kind of scored on costumes this year.  Benson and Brigham's costumes were clearance purchases from the previous Halloween.  Benson was Batman and Brigham was Superman.  We happened upon a pink costume that looked like a girl version of Spiderman at a thrift store and Vanessa quickly named it Spider Girl.  She loved it.  She's so easy to please sometimes.  I found some red leggings and shirt and black underwear at a thrift store.  Yes, I am admitting to purchasing underwear at a thrift store.  It was embarrassing and please don't throw up.  All were thoroughly washed and the underwear never touched my bare skin.  I spray painted my black to become Elastigirl.  I was kind of proud of my ingenuity.  I got lots of compliments.  Jon, in a very atypical Jon fashion, didn't dress up this year.  But he spent his costume finding time busting out a rockin Batmobile for Benson!
I HAVE to tell this very cute story about Benson's Batmobile.  The wheelchair we used for it is a loaner chair.  His is ordered and should be here before the end of the year.  So we have this chair and  I really wanted to make a Batmobile but a few days before Halloween it stopped working right.  The seat was stuck up high and tilted back.  Benson didn't even like driving in that position and it was not even slightly workable to throw cardboard on it.  I tried random things to fix it and talked with FB SMA friends to get ideas.  Nothing worked.  The night before our ward trunk or treat, Benson prayed in his bed time prayer that his power chair would start working again.  Wouldn't you know, it started working the next day like it had never had a problem.  It made me cry just a bit.  I love that Heavenly Father would answer such a simple, heart felt prayer for my little man.  Just another testimony to me that Heavenly Father cares about the little things too.
At the trunk or treat, Benson got all kinds of compliments on his Batmobile and basically felt like a rock star.  He loved getting the attention and I loved seeing him comfortable getting the attention.  The night was a winner just for that.  Vanessa thoroughly enjoyed running around with Reese and Peyton and we hardly saw her the whole evening.  Brigham was just stoked about the candy.  He never once said trick or treat, though he was capable.  He just stared at people, rather expectantly.  We don't have to worry about that kid talking to strangers.
On Halloween night, our friends the Smiths came over for some minestrone and then hit our street for some trick or treating.  They last up and down River Birch and then were done.  Our neighborhood was INSANE.  We weren't here last year for Halloween and we had only heard it was pretty packed.  This year we lived it and two bags of candy from Sams
Club was NOT enough.  We had to lights out at 7:30pm because we were out of candy, after we had given a lot of the kid's away too.
Overall, it was a fun and successful Halloween.  Next year we'll have to come up with something super awesome for Benson's chair.  And we found Vanessa a super cute witch costume on Halloween clearance this year.  I LOVE post holiday clearance.

Weight

On October 17, 2013 we had well child checks for Benson and Brigham.  They both had to get shots which they did okay with at the doctors but Brigham was a mess after.  And then he got a cold.  I feel like the shots overloaded his system so when he was exposed to a cold, he couldn't fight it off.  Have I mentioned before how much I hate vaccines?  I feel like they have become a necessary evil in a way.  As well as a blessing.  Thank heavens we don't have to see polio anymore, right?!  But, I just quickly wanted to document weights and all that. 
Benson weighed in at 23 lb. 8 oz. (0.13%) and he is exactly 36"(11.20%).  Take that Silver Dollar City!  (another post, for another day).  His blood pressure was 98/66.
Ironically, he gained the weight necessary for us to say he doesn't need the g tube.  But, since he fluctuates so easily and loses weight so easily, we have decided to still go ahead and do it.  We both feel relieved by the decision so it must be the right one!
Brigham weighed in at 22 lb. 12 oz. (26.86%) and 2'7" (13.48%).  Ironically, he is the weight Benson was last month, when we said we wanted Benson at 23 and a half pounds to feel ok about his weight.  I feel like my life is one irony after another.

Change of Plans

When Jon picks his vacation for work, he picks in November of the year before.  So last November we decided we wanted to go to Utah for Thanksgiving.  This will be our first Thanksgiving in Utah since 2009.  Crazy.  We picked the week before Thanksgiving and the week after and Jon got two full weeks for us to visit family.  That has been the plan all along.  Well, on conference weekend, I thought maybe it would be fun for the kids and I to drive out early to spend time with family and then go back with Jon.  No one like the idea of me driving the kids by myself.  So we finally decided we would fly.  We were able to get tickets with our points on Southwest and not have to pay.  Well, $15.  That worked out fabulously.  Though we were planning on saving those points to go to Cali next year :(  Hopefully something else will work out by then.  Anyway, some last minutes scrabbling resulted when I realized Benson would need all kinds of equipment.  We were able to find a stander to borrow but no power chair yet.  His is still in the works :(  He is going to be super sad, I just know it.  But hopefully we'll be able to make it fun without anyway.  We are leaving for Utah on November 4 and we'll drive home with Jon on November 30.  We'll be there a whole month.
It's ironic in a way, this idea popped in my head at a moment of frustration.  I just needed a break and Utah felt like the only way to get it.  The kids were crazy, the dog was crazy, I just felt like some extra hands would soothe my soul :)  But, it ended up being much more than that.  Jon and I have been praying and contemplating doing a G tube for Benson for a long time.  He has only gained 4 ounces in a year.  His weight bounces around in the 23 pound range.  He is 35 inches tall, when we really stretch him all the way out.  It's tough to get an accurate height on him.  Our kids are little and he is always going to be even smaller because of the lack of muscle.  But he is still underweight.  And, having such little muscle puts them at a very high risk of becoming hyperglycemic very quick.  They also have little muscle to break down during times of fasting.  Fasting for Benson is a scary situation.  When he gets sick, he doesn't like to eat much and this causes a lot of panic for me and Jon.  Having a g tube would eliminate that worry for this winter.  It would also ensure he is getting the calories he needs and hopefully help him gain a pound or two.  I am hoping that it'll give him a little more energy as well.  He is tiring so quickly lately :(  The cons of course, are that undergoing surgery is scary.  As well as the regular care of the button and possible infections that can come.  As well as added cost for a feeding pump and formulas. 
We have also been torn on getting a TLSO or back brace made.  This will offer him some support for his back and be a slight preventative measure for scoliosis.  Some cons are that they can offer too much support and someone will become dependent on them for sitting.  We definitely don't want
Benson to lose his ability to sit independently. 
It all sort of came together when we decided to go to Utah.  We got in to Shriners so they are going to do his back brace.  They really pulled some strings to get us in and we'll pick the brace up the day before Thanksgiving!  We also were able to get into Primary Children's for a g tube consult.  Dr Scaife will be the surgeon, hopefully.  I feel good about our decisions and I feel like everything worked out in such a way that I know God was directing things.  I made a million phone calls for a week and every night I would go to bed feeling utterly exhausted and defeated.  I would pray that one little piece would work out and the next day it would fall into place.  There were definitely some little miracles taking place.  I love feeling God's love for my son.  I know that he is watching over Benson and helping us make the right decisions for him.  Things couldn't have worked out any better.
All the kids are very excited for this trip.  They literally ask daily if we are going to Utah yet.  A concept of time would be super helpful here.  Vanessa has her first gymnastics meet on the pre team on November 2nd.  She told me last night that she is super nervous because she can't do a backward roll.  She said she did once but hasn't been able to do it since.  I told her to do her best and we would be proud of her no matter what.  After her meet, she won't do any gymnastics for all of November.  And then she has another meet when we get back on December 7th.  I hope that ends up working out okay.  I'm not sure what I should have her do so she doesn't go back and end up getting hurt or something.  She said she is ready for a break though so I think it'll be a good change for her.  We are going to do swimming lessons with her cousin while we're in Utah.  And she's super excited about that.
Brigham has no idea what is going on but he gets excited when the kids get excited.  He is completely out of his phase of not liking people and actually likes anyone now.  Or, anyone that will pay attention and do what he commands.  He is still very stubborn and full of mischief.  He likes to run in the street when we tell him to stay on the sidewalk and he likes to throw his food when we tell him to keep it on his plate.  Basically, he's 18 months!