Monday, October 28, 2013

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.

Wednesday, October 16, 2013

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! 

Saturday, October 12, 2013

Family Pics 2013

Photo bomb.  I don't have time to write all the crazy shenanigans going on right now.  But, I'll update soon.  For now, here are our family pics for this year.  Love them.  Thanks to Danae for helping us pull it off.  The kids burned out before we could get any individuals so that will require further bribery.  They will definitely be posted when we have come up with a sufficient reward (in their minds anyway).  Which one should we frame this year?