Bitter

I'm feeling a little bitter today.  Last night we watched home movies and it just happened that the first tape we could come up with here in Denver was right around the time Vanessa was learning to walk.  I had forgotten how much fun it is to watch them take those steps into independence and become little toddlers.  It made me feel like my son was being short changed.  Then this morning I took the kids to the mall where they have indoor play toys.  I felt that bit of anger growing inside again as kids younger than him were wondering around, playing on the toys.  I avoided talking to any parents because I didn't want anyone to ask how old Benson was.  Immediately following that question is always a comment about him walking.  I haven't come up with a good response yet.  It's not like I can say "he's just not interested yet." Because, he is very interested.  But he never will.  Do I say that?  My son will never walk.  It's not embarrassing or anything, it just makes my heart hurt for my little man.  And kind of angry at my genes.

On a happier note, the kids are getting better.  No more fevers, coughs mostly gone and so are most of the yellow bougars (I don't know how to spell that).  And here are some funny things Vanessa has said lately.
~As we were driving out to the Denver airport, passing expansive fields of white, "Where are all the polar bears, mommy?"
~One morning Vanessa insisted that she be called Brooklyn (her cousin) and she kept asking me all Brooklyn's family members names.  Benson was Drew and I was Nicole.
~She talks in her "daddy voice" and "papa voice"
~Benson was crying on the floor while I ran to the bathroom.  Vanessa walked over and rubbed his back and sang Twinkle, Twinkle Little Star to him.
~Vanessa woke up really early one morning crying.  "My teeth hurt mommy, I need my toothbrush."  Me:  "Your teeth hurt?  Is it your lips?  Do you want chapstick?"  Vanessa:  "No.  I want chocolate hearts."  And then she was asleep again.
~When we got home today she said she wanted to wear her purple nightgown with her Rapunzel hair and watch Rapunzel.

Hotel Life

Vanessa literally started coughing on the drive here.  She got a nasty cold that is still lingering a bit.  And then Benson caught it.  His cold isn't as bad, it's the darn fever that he gets with it.  It seems like Benson is more prone to getting fevers.  I can't recall Vanessa ever having a fever.  I wonder if this is true for all kids?  Anyway, other than dealing with sickness, this is how we spend our days.  

 

 My biggest mistake was forgetting Benson's high chair.  There are some meals where he just insists on not having any help and feeding himself.  Or rather, making a mess himself.  I learned to use a towel at least, since that is easier to wash.

 The best part of the day of course, is when Daddy gets home.  Both kids get so excited.  Benson yells "dada dada dada" over and over and Vanessa runs and hides.  They love playing with their dad for sure.

 The kids got some trains for Christmas and we ran over to Ikea one day and added some track.  We now hoave a monster track and make a new configuration several times a day.  I was particularly proud of this one, even though you can't see it.  I am getting better at making these kinds of things.  So is Vanessa.  She has made some pretty impressive tracks herself.

 I entertained the kids with colored shaving cream in the bathtub on Saturday morning while Jon was taking an exam.  Darn those online courses!  But they loved it, and it has been a frequently requested favorite.  Vanessa actually woke up at 6:30  winsisting she needed a bath that instant the day after.  We were able to convince her to go back to bed for another hour.

 We couldn't decide what to do on Saturday when Daddy was around to play, so we drove around a bit and then ended up at the downtown Aquarium.  It was a bit of a splurge (okay, a big splurge) but the kids are obsessed with fish and I think they both loved it.  It's kind of mesmerizing watching fish swim around for some reason.

This fish was our favorite of the day.  I haven't ever seen one quite like it.  Pretty cool, isn't it?

A New Look at Life

Um, did anyone else notice the widget on the side of my blog?  Am I REALLY having a baby in six weeks?!  For my physical comfort, it would be nice if she came early.  But because I am no where near ready for this, late would be okay too.  I can't believe how fast this pregnancy has gone. 
So the kids and I came out to Denver for the next three weeks.  We are currently at the hotel where Jon has been staying the past month.  We find out tonight if an apartment will rent to us for only three weeks.  If not, we're going to stay here.  I feel kind of white trash living in a hotel.  And I say living because it's not like we have a home to go to somewhere else.  We're pretty much transients.  Oh well, such is the life.
The last couple days before leaving Utah I was stressed to the max.  I was ornery, grumpy, and moody.  But just talking with Jon on the drive out to Denver made me feel better.  I can't believe how much I have missed being together as a family.  I realized I missed Jon, but it was like peace came back into my mind and I felt like I could cope with everything again just because I was with him.  I am so blessed to have him and even more blessed to get to live in the same state with him again.  I feel like Jon makes me a more positive person.  And I worry less.  I was always such a planner and spontaneity was not my forte.  I think we are a good balance for each other.  Granted, we would both love a little more stability right now, but Jon makes it all feel like it's more of an adventure and less of something to be dreaded.  Having said that, I have started looking at all the positives lately.
~We are having a baby!  When is that NOT exciting?!  And if all these tests come back positive, we have a 25% percent chance of having another baby with SMA.  So, difficult decision of whether or not or when to get pregnant...avoided!
~We are together as a family.  Pros all around for obvious reasons.
~We are in a studio hotel that has a full size fridge and a stovetop, way better than a mini fridge and just a microwave.  Though we do have a microwave.  And, we were also able to push the two double beds together so we have one ginormous beds.  The kids think it's great and it opened up the room to have more space to play.  A lot of hotels bolt their beds down so you can't do that.
~We have a job!  Wow, that feels amazing.
~Vanessa is completely healthy and showing no signs of SMA.  She is hilarious and keeps us on our toes, laughing and shaking our heads along the way.
~Benson is going to have a lot of physical difficulties but man that kid is smart.  He amazes me all the time and I know that he will shine in so many ways.  He is going to have so many talents, and so many amazing things.

Repurposing, Ducks Don't Fly South and Car Tracks

Vanessa loves silky nightgowns.  It is literally all she wants to sleep in.  Her favorite is her "horsey nightgown" which we have all seen way too much of.  I made her two new nightgowns recently.  Both were from the same tutorial but I did slightly different things on each.  I like different parts of both.  Put them together and it would be a pretty decent nightgown.  I got the purple fabric from WalMart for $3.75 and the flowered one was a robe at DI for $5.  It's chemise silk so I feel like that was pretty cheap.  Plus I didn't have to hem because I used the already hemmed edges.  Bonus!

I also made Vanessa this Rapunzel wig.  Her cousin Brooklyn had one so I decided to give it a try.  The yarn nearly made me crazy trying to get it all cut and braided but she loves it so it was worth it.  Poor Benson kind of gets the shaft.  I haven't made anything for him.  I just get more excited about girly stuff.  Sorry bud.

My parents laughed at me when I said we were going to feed the ducks.  Ducks fly south for the winter, right?!  Wrong!  Not if they are domesticated ducks anyway.  These guys are fed year round, I am sure, so food is not a problem for them.

Benson having a stare down with one of the geese. He usually loves throwing the bread but he just held on to it and stared at them this time. Possibly because they just kept getting closer and closer and were really big.

My mom is amazing at spoiling her grandchildren.  I kind of feel like I get spoiled too because it gives us new things to play with.  One thing she has always done is buy four of the really cool toys.  If she thinks the kids will really likes something, she will get one for each family.  She had quite a few of these stored up for us since ours are about three years behind the older group of grandkids.  Today we busted out one of these stored up treasures.  Vanessa has played with her cousin's before and loves it.  She was so excited to have one of her own!  Of course she believes that is "hers" and not "ours" but we are working on that.

Benson enjoyed the mini screwdriver kit I used to get the battery compartment open for a good ten minutes before he got into the car business.

 The track is kind of wiggley and the cars run on battery around and around.  They go really fast for just one little AA battery.

Random New-ness

• Jon is in Denver all week but comes and visits every weekend.  I am staying with my parents and trying to get through doctor appointments.  It is HARD being apart so much.  I think the circumstances right now make it even harder.
• Jon got me a sewing machine for Christmas and I am fully embraced all those sewing/repurposing "pins" I have been wanting to do.  Pictures forthcoming...they wouldn't load today.  Don't I have the best husband ever?!  I can never think of such awesome gifts for him.
• Vanessa is obsessed with princesses.  Her current favorite is Rapunzel.  It was probably Belle first, then Cinderella and now Rapunzel.  I think she currently likes Rapunzel because she wears a purple dress and I just made her a purple nightgown/dress up as well as a Rapunzel wig.
• Benson is a talking machine.  This kid amazes us all.  He is starting to spit out two word phrases on occassion.  He's only 16 months.  It's crazy.  And he repeats nearly anything, if he is in the mood and if he is not feeling pressure to perform.
• Vanessa loves to play dress up with her cousins.  If they dress ups sort of fit (within a size or two) and if they resemble a princess outfit.
• Benson loves animals, knows all the animals by name, and all the sounds that I know.  If anyone knows what sound a zebra or giraffe makes, please tell!
• Vanessa still loves her animals, littlest pet shop.  She now has about a million and a tree house for them to play in.  Her favorites have very original names, like purple cat, pink cat, octopus, and shark.
• Benson is turning out to be a pretty good eater.  He likes a much larger variety of food than Vanessa did at his age, though this last week has been rough with a bout of the flu hitting both kids.
• Vanessa is currently an awful eater.  She goes through phases and right now is a not-really-eating phase.  I think she had waffles and milk for three days straight.  Obviously, her current favorite is waffles.
• Jon is getting more and more comfortable working with peds.  He has been in Denver for three weeks (that's it?!) and this is purely a pediatric rotation.  He feels like he has things down now and is even enjoying it.  He will be in Denver until the end of February.
• I am almost 33 weeks pregnant.  Everything is going great, I am huge and have gained WAY more weight than I would have liked to at this point.  I blame it on Christmas eating.  At the last ultrasound, we got some great pics of the baby's profile.  He or she definitely looks like one of our kids.  Apparently we have a cookie cutter recipe.  There was also some small evidence of hair growing on their bitty head. 
• Benson has a preference for boys.  He loves his dada, papas, uncles and Clay over everyone.  But he still does love his mama. 
• Vanessa is still full of energy, like she always has been.  My father-in-law pointed out that she never walks anywhere.  She is always running or leaping, hopping, dancing, something with a bounce and more energy in an hour than I have in a day.
• Benson has a twinkle in his eye and a charm about him that melts everyone.  There is just something about that little man and the way he looks at people.  He's pretty easy to fall in love with.  Watch out ladies!
• Vanessa is in the age of saying all kinds of funny things.  I wish I were better about writing them down because she cracks me up all the time.  Some of our funniest conversations happen while at the potty.  She doesn't always want me to come, but when she does, she likes to talk to me about what she's doing and always asks me if I can hear it too.  When she was sick with the flu after she threw up for the first time in her poor life, literally, she turned to me and said "I don like that."  She still talks about her tummy ache and how she kept "spitting" in the potty.
• Benson is sort of starting to sleep better.  He was doing great in St Louis, sometimes sleeping all the way through the night, but all the moving around mixed him up again and he was waking up sometimes every hour!  I was DYING.  But, we're all doing better and I am just existing sleeping squished between two very warm bodies.  I have very little motivation with Jon gone and so much moving to get them in their own beds.  We have taken Benson off milk, which seems to have made a huge difference with his waking and gas.  So it appears that he possibly has a low tolerance for lactose?  Not fully lactose intolerant because he still has other forms of dairy.  Apparently this is possible, who knew.

Generally, life is good.  When I keep a bigger picture, we are amazingly blessed.  I look forward to small things, like hopefully getting a diagnosis for Benson in a week, wrapping up some loose ends with Jon's clinical schedules, visits from Jon, etc.  It makes each day and each week more bearable.  And then sometimes, like the other night when I watched Warrior with Jon, I start crying and just can't stop.  It's like the flood gates are opened and don't want to close.  But there is something almost therapeutic about crying in the arms of someone who feels your worries and fears and anxieties and frustrations as strongly as you do.  On a happier note, this is a BIG week for our family, for a million reasons.  Hopefully everything turns out as I hope, and if not, that I have the strength to deal with it! 

Snow Day

This is not our recent snow storm. This was the first one of the year, clear back before Jon had to leave for Denver. It was the first time the kids had been in snow, that they could remember anyway. We had a lot of fun that lasted about an hour, perfect for me. I remember spending hours and hours playing in the snow as a kid. But luckily, most things don't last for hours and hours as a toddler :) Hours and hours making snowmen at seven months pregnant, did not appeal. But I can do an hour.

 

Here is Vanessa, anticipating stepping into the snow.  She was so excited to go out and then as soon as she got to the edge of the snow, she stood there for a good minute.  I would have loved to be able to read her mind at that minute.  I wonder what a toddler thinks of an experience like this, something so new and different.

 Jon with the kids and our niece and nephew.  They all had fun sledding.  Vanessa didn't really love the tube, I think it was faster than she liked.  But she did love the slower sled.  Benson had a couple turns too.  I couldn't quite read his emotion but Jon said he did seem to like it the first couple times (I only saw him the last time and by then he was tired and kinda cranky).

 Benson crashed during the snowman making, so I held him and took pictures.  It was a fabulous excuse.  I love holding sleeping babies and taking pictures.  Double win!

Hard at work making that snowman.  Vanessa also learned how to make snow angels and especially loved eating the snow.  It was all she wanted to do.  What kid doesn't love eating snow?!

Christmas Pictures

For My Yoke is Easy and My Burden is Light

I haven't blogged about our little Benson's physical condition much because I have been waiting for his appointment with the neurologist.  So, I guess it makes the most sense to start back at the beginning.  We first started to notice something wasn't right when he was about nine months.  He had been scooting around for almost a month but still wasn't using his legs to help scoot.  We also noticed that he wasn't bearing weight or pulling up to furniture.  I scheduled his well child check and we brought this up with the pediatrician.  She said she wouldn't say she wasn't concerned, but that we should watch it and possibly do physical therapy if it hadn't improved by 12 months.  So, between 9 months and 12 months we moved to Utah (temporarily).  So, I took Benson in to Vanessa's old pediatrician just days before turning 12 months to get a second opinion.  He wasn't too concerned.  Benson is very age appropriate in every way except that he doesn't use his legs.  Makes things kind of confusing.  So he recommended that we do one of three things 1)see a neurologist 2)physical therapy 3)wait and see if he catches up on his own.  Our situation of moving around the country for the next year made things even more difficult.  How do you follow up with physical therapy or a neurologist if you don't live somewhere for more than a month?!  I explained this to the pediatrician and because it didn't seem that pressing, he just left it up to us and told me to call if we needed any referrals.  About two weeks later, we left for Kansas City, MO.  We were there for two weeks and then we drove to the other side of the state and planted in St. Louis for three months.  I had decided that I would call First Steps (the community development intervention program) while in St. Louis and see how that went and then we would go from there.  Jon and I were going for a walk one day with the kids and he mentioned he had been talking with a doctor that day about muscular dystrophy, particularly duchenne muscular dystrophy (DMD).  It's a pretty agressive form that manifests itself at a young age.  I had a distinct feeling right then that I needed to call the neurologist.  And for a long time, I felt like it meant that he had DMD.  I scheduled his appointment the next day.
November was a rough month to say the least.  I spent hours after everyone had gone to bed sobbing over any information I could find on the internet.  I searched everything from neuromuscular to hyptonia, to brain, spinal, etc.  I finally had to stop. 
First Steps came and did a full evaluation.  Ironically, he was advanced in cognitive skills by several months and less than half his age in gross motor skills.  He qualified for weekly physical therapy, at no cost to us.  Sometimes those government programs really are a blessing :)  The physical therapist came to our house and worked on his balance, trying to improve his weight bearing, overal development of his leg and core muscles as well as massage.  December was a much happier month.  I was feeling more able to deal with the reality that something wasn't right.  That something was wrong, though I still wasn't sure to what extent. 
Right before Christmas, we left St Louis and came back to Utah.  Originally, the kids and I had planned to go with Jon to Denver, where his next rotation is.  But with Benson needing regular physical therapy and having appointments set up with the neurologist and Shriners (we applied for Shriners and he was accepted as a patient there as well), we didn't see how that would work anymore.  Jon stayed with us through the holidays and then left for Denver.  The soonest we could get in to see the neurologist was Jan. 5, and this was scheduling clear out in October!  On Jan 5, my parents and Vanessa and I all took Benson to the neurologist.  I doubt they usually get such a large crew.  Ha ha.  My dad took notes, my mom entertained Vanessa, and I sat with Benson for his evaluation.  I thought I had been thorougly prepared for his appointment.  But, turns out I was unable to answer a lot of questions, including family history (mostly Jon's).  I also continued to think of things I had left out over the next few days.  That is so frustrating.  The doctor felt fairly sure that it was not muscular dystrophy but wanted to do the blood test anyway, just to be sure.  She also didn't feel it was brain or spinal.  She decided to do an EMG, or electric diagnostic.  She will put little electrical impulses on his legs and test whether or not his neurons are firing correctly.  She will also put a needle into his muscle to test the neurons.  She said that usually they use general anesthesia for this procedure, but was willing to do versed only for Benson because he isn't very wiggly.  Versed is not a pain medicine, it is only a sedative.  So he will feel it and he won't like it, but it will eliminate the risks associated with general.  She left it up to me to decide and I wished that Jon were there to decide.  He's the one that has been studying this for the last year!  Finally, I decided to just go with the versed.  We scheduled the appointment for January 30, again the soonest we could get in.  We headed over to the lab that day though and did the blood test for MD.  I called in just today and got the results, everything is normal.
I'm very unsure of what the future holds for our little Benson.  The doctor mentioned that her first impression is Spinal Muscular Atrophy (SMA).  I remember talking with Jon awhile ago and one thing he said was "let's just hope it isn't SMA."  The doctor suggested NOT googling SMA because there are several subtypes, and Benson would be a type 2 or 3.  Type 1, they are usually diagnosed at birth and immediately put on a ventilator.  They usually don't live past 2 or 3 years.  I don't know what type 2 or 3 would look like, but I imagine it isn't much better.  I decided not to google until we know for sure.  No sense worrying about something that may not even come to be.  It is most likely something neuromuscular.  Charcot Marie Tooth (CMT) is another one that closely resembles Benson's symptons and is a lot less horrifying.  He would most likely be in a wheelchair, but it would never affect his organs so he could still live a full and "normal" life.  While it isn't life-pressing that we get an answer now, it would be nice to know and move forward with the facts.  I just really hope that this appointment on Jan 30 gives us some good answers, if not a definitive one.
Surprisingly, I feel like I am doing well.  I can't speak for Jon, because I haven't asked. But I feel like this has come on slowly enough that I have had time to adjust and grapple with it all.  I have always been amazed by people when in times of trial, they can be positive.  How can you be positive when life is throwing you wicked hard curve balls?!  I kind of felt like when we first came out here that our family wasn't sure if I was going to be a complete wreck or not.  At first, they seemed a little tender, just trying to be sensitive.  Things have normaled out now and they have realized that I can have casual conversations about it and I'm not moping around like life is miserable.  We move on and deal with life, because what other choice do you have?  But I can honestly say that I have felt the sustaining power of Christ every step of the way.  I have read the scriptures my entire life, but it has taken me 25 years to finally understand one of them in particular.  I guess that is the whole point of trials, to teach us and cause us to grow.  But I finally understand how things that seem so hard are possible with the Savior.

Matthew 11:29-30 "Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.  For my yoke is easy, and my burden is light"

St Louis Temple

House Time in St Louis

It felt weird to experience cold again.  But cold with toddlers was something I have never done before.  I felt like I was constantly looking for new ways to entertain the kids on cold and rainy days.  We spent tons of time going on walks, feeding the ducks and throwing rocks in the water before it got cold.  But once winter settled in, the plans had to change.  Here are a few things we had fun doing that filled our days.  One day after I had stripped the bed to wash the sheets, Vanessa wrapped herself up in the mattress cover.  I have no idea why, but she just wanted to lay there.  I left her there and about five minutes later, she was out cold.  And out cold for about three hours.

 We tried making "moon sand" as seen on pinterest.  It didn't work for us.  Too many weird divisions in the fractions just didn't come up with the right proportions I guess.  But, the kids still had a blast playing in our "kitchen sand box."

Sometimes while Benson napped, Vanessa and I would work on making ornamnets for our "Christmas Tree."  It was actually brown paper bags I cut up and spray painted green.  But we had lots of fun decorating and getting covered in glitter.  Benson helped us put stickers all over the bottom when he was awake.

I swear my daughter really does wear clothes most of the time.

We bought the kids some hats and gloves and went out for a walk one day after a couple days of rain.  It was nice to get out of the house after several days of rain and gloom.  Vanessa was pretty excited to wear her boots in the puddles.  And Benson chilled in the stroller and enjoyed the fresh air.

Don't you love her outfit?!

Finger painting is absolute joy to toddlers.  My kids don't actually paint much.  Vanessa at least smears it on the paper.  Benson mostly smears it on himself.  But they absolutely loved it.  From the kitchen, we went straight to the bathtub, but even then there were several places that managed to be bumped with fingerprints.  Luckily, it all came out with no problems.

Farewell to St Louis

There is no question my blogging has slacked off really bad lately.  We have done a lot of really fun things, as well as had the usual bummer days, as well as really fun days at home, basically life.  Full of its good days and bad, its ups and downs and everything inbetween.  While things have been slow and just a basic life with two kids for me, regular clinicals for Jon, it has also had this crazy chaos to it.  It feels fitting being right next to the Mississippi.  Apparently no one swims in the Mississippi (other than how dirty and gross looking it is) because there are crazy undercurrents.  You would never guess that from looking at the surface.  I kind of feel like that is our life right now.  It's slow and normal but then just crazy as well.  I imagine this is life for a lot of people and it will most likely be life from here on out, part of having kids I guess.
So how about some of the fun stuff. Back in November, the St Charles ward, which is our friend's ward, had a daddy/daughter dance. My friend was in charge of taking pictures so I tagged along as well and took some pictures of Jon and Vanessa.  They had so much fun and it was so cute watching them teach each other some dance moves.  Vanessa doesn't look too happy in this first pic, but she was just exhausted by this time. 

I had a really hard time deciding the settings I liked.  The lights were out, in a gym, the most un-ideal picture taking scenario possible.  Needless to say, this are less than ideal pictures.  And, we have no photoshop.  What do you do?

For Thanksgiving, we drove down to Oklahoma City to spend it with my sister's family. My parents also flew out and it was total blast. It was an 8 hour drive and getting there was no big deal. We mostly drove through the night :) We did fun things while there, like another hot chocolate taste test, went to the Science Museum, played with NEW toys (new to Vanessa and Benson that is), rode bikes, and made a fabulous dinner (props to my sister who made the best turkey I have ever had). It was mostly just really nice to be with family. It's kind of lonely (during the days, I'm lucky to have Jon around at night!) being on the road so much. Family has a way of making it all better though.

So apparently that is all the blogging that is going to happen for now.  Benson woke up from his random power nap and Vanessa is hungry.  So, I will get back to this in a few days.  Probably after we are in UTAH!  Woot woot!