Family 2012 Pictures

Yay for family pictures.  This may honestly be our first official family photo shoot, that actually worked out.  Haha.  I'm super happy with the results.  Although, Vanessa was done with the camera so she wouldn't do any shots with me.  And we didn't do anything with Jon and each of the kids.  Guess that just means we have to go out again. :)  Our friend, Danae, helped out a ton and was amazing. 

Of other note.....
Jon
Started his job just over a month ago and is working like a crazy man now.  There was a big mix up with schedules, it's a really long story.  But end result equals, he is now working 11am-7pm.  So far, Jon is not a fan of the new schedule.  It is yet to be determined for me.  Afternoons/evening is the worst time of day for the kids.  The last two days I have managed okay though.  I kind of thought this schedule would end up giving me and Jon a little more alone time, but that hasn't worked out yet either.  So, we'll see.  He has this schedule for three weeks, then back to 7am-3pm, then a week vacation, then back to the midday shift.  And on and on and on....  Other than the crazy schedule mix up, he likes the job.  Or so I'm told.  It's different than expected.  Not the nature of the work obviously, but just all the small nuances that are different with each hospital and the work environment in general.  But overall, it's good.
Me
Through the last year, I kept thinking that as soon as we got to Florida things would settle down and all would be good.  Except, things are STILL crazy.  And in some ways, crazier.  We are trying to get everything settled with Benson's doctor appointments/therapies, etc.  That is a ton of work.  AND, wait for it....
WE BOUGHT A HOUSE!
or rather, we are buying a house and will close on Nov 15.  Which also happens to be very time consuming.  So, I feel like things are still rather crazy.  But, it's slowly settling.  But then I add new craziness to my schedule because I can't get my mind to just shut down and chill!  haha
Vanessa
Is growing up so darn fast.  She feels like she has been a bit more challenging lately.  I've been trying to sort through the possible reasons why.  TV, computer, iPod playing has been a little less regulated and I'm wondering if that is factoring in.  And she is also getting a little neglected with the two boys taking up so much time and all the other stuff going on.  I am trying hard to make sure she gets some individual attention and one on one time with both Jon and I.  But the tantrums are still crazy.  Yesterday, she was getting so crazy, I decided we were done with any and all "screen" time.  Hid the iPod, and refused to turn the TV or computer on for her (luckily she doesn't know how to operate everything yet!)  She cried for an hour.  Literally.  I was able to stay completely calm, which I was pretty proud about.  I even tried to be sympathetic.  She kept telling me I was making her cry.  It took a good 45 min. before we finally agreed that she was crying because she was mad that I wouldn't let her watch TV.  But before we came to this conclusion, she told me I was also a mean mom, I was being mean because my hair is a different color, I am not as nice as she is, and she just wished I were a nice mom. 
This evening as we were laying down for her to go to sleep, she said to me.  "Do kids grow bigger by sleeping?"  I said, "yes, and just time.  You grow up a little everyday."  Vanessa, "wow, that's pretty cool we grow at night."
Vanessa is also starting a dance class next week with her friend, Reese.  We have her ballet shoes and leotard all ready to go.  She isn't quite sure what all this means yet, but I am pretty sure she is going to love it.
Vanessa still wants to go to school and it still makes me sad that she doesn't want to do homeschool.  Oh well, can't hold on to them forever I guess.
Benson
Is doing so much better with sleeping.  He is easier to get to sleep at least.  He goes to sleep at a reasonable time most nights and still takes naps.  He has to have a nap.  Which I am super happy about.  Vanessa quit napping at his age and it was kind of a sad day.  Anyway, sometimes he cries for about ten minutes when I lay him down.  I've figured out though if I leave, he cries.  Then when I come back, I hold him for two minutes and he's out.  It's almost like he needs that time to really accept how tired he is and that I'm serious about the sleeping thing.  At night, he goes to sleep fairly well though.  Usually no tears.
He recently went to the doctor and he now weighs 21.6 pounds and I think he was 33 inches tall.  He is actually in the 10th percentile for height but off the charts for weight.  It's stressful knowing what to do about the weight issue.  I sent in a three day food diet to the dietician.  She will analyze it and get back to me with some recommendations.  I'm just praying that we don't have to do a Gtube any time soon. 
We have started regular weekly physical therapy through the First Steps program.  They will come to your house until the child is three years old, which I love.  I just wish they would come to your house beyond that, but they expect you to transfer care to the school system at that point.  Bummer.  We'll cross that bridge when we get there though. 
We found an awesome Hippotherapy program we want Benson to participate in.  And an awesome bonus is that his PT with First Steps is also a PT with the hippotherapy program.  And she is great.  Benson loves her, which is saying a lot.  It took almost a month for him to warm up to his other PT.  Anyway, this program is $80/hr!  Yikes!  And, our insurance won't cover it.  But we are applying for a grant/scholarship so hopefully he can start it next year.  The neurologist explained SMA as having a 30 month period, from the time of onset, that the most strength is lost.  The goal is to have them start to plateau as high as possible, to minimize the amount of strength that is lost.  I really feel like this therapy could be a huge factor in this.  So let's hope the grant works out!
We also made another big decision.  We are going to start working with the insurance to get Benson a power wheel chair.  It's a huge investment $$$.  Not only do we have to get the chair, but we are going to have to become a minivan family.  I never in my life thought I would drive a mini van.  But I am actually super excited about it.  They are crazy expensive, to get a van with a conversion kit, but we are going to start looking and hopefully something will pop up in the next year or so.
We are also stoked to be moving into the house to fully adapt a play room for Benson.  We have BIG plans of ways we want to make everything more wheelchair-friendly for him.  Don't worry, pics are sure to come!
Brigham
He is seven months old now.  He is sitting really well.  He practically sits in the splits.  But he has great balance.  He LOVES pulling hair.  If hair is ever by him, he gets this mischevious grin and lunges for it.  We tried to all lay on our bellies in one pose for family pics.  Ya, it didn't work because Brigham went from person to person attacking their head.  And, those are the ONLY pictures he smiled in.
This boy still drools with no abandon.  It's acutally kind of odd to me that he hasn't stopped drooling yet.  There are no teeth coming in.  And he eats really well.  I mean, when I am feeding him baby food, he swallows just fine and isn't a giant mess.  But not so with his spit.  I've also noticed he doesn't mouth things like most babies.  I'm not sure what all this means.  He also doesn't make consonant sounds.  He growls plenty and screams and has the cutest giggle in the world, but no dadadada, babababa, nananana sounds.  I'll stop being paranoid.....now.
Brigham was in the 25th percentile for both height and weight, around 17 pounds.  He has the most adorable thunder thighs.  And a couple chins, they're cute too.  He grins at anyone that talks to him.  Overall, he is a very happy baby.  Though he is a very particular baby too.  He wants things a certain way and he will let you know it.  He loves to "play" with Vanessa and Benson.  When he is up for play time, he wants to be around them.  He is slowly starting to be a better sleeper.  He's still a cat napper though, like his sister.