Thursday, January 30, 2014

Update on our family

It's a new year so here's an update on what's happening in our family.

Ken is still working in IT for the state and got a promotion last year. It was a long time coming and we enjoy saving his raise every month. He enjoys his job and is learning a lot with his new promotion.

Last year, Ken leased an electric vehicle making our gas bill every month cut in half. He is able to charge for free at work and park for free downtown where he works. This has been a big deal for our family as we try to save as much as we can every month.

In June, we leased a Kia Sorento as our family car. I have been wanting a bigger car for a few years now and I was very excited to finally get into my dream car. It has a 3rd row seat and a back-up camera which makes me feel safer driving it.

In early July, I started working at an Etsy shop cutting fabric and shipping it out. I love it! It's only 12-13 hours a week, but gives me flexibility to change hours if necessary for sickness or doctor appointments. I love being home with the kids most of the time, but it's also been a great getaway.

Ethan continues to be in good health. He was sick only 2 or 3 times in 2013 and each time it didn't last very long. He has stayed out of the hospital for 18 months now. He has not cultured anything in those 18 months which has made us more confident in our ability to get him healthy. Some of it is luck and the other is preventative care.

There is a new drug combo that is in the trial phase right now that will target his gene mutation (Double Delta F508). This drug will make it so that any mucus in his body will break down and leave his body like any other person would. This will be life-changing for us. It could mean less treatments down the road and less or no hospitalizations and definitely could mean not culturing these super bugs because they will be able to pass normally. We are very excited to see what the fall and early 2015 bring in research and treatments for Ethan. We are so close to something great!

Lila will be 14 months in a week. She is talking and making lots of noise lately. She started walking a little over a month ago and is into everything. She loves her brother but sometimes can't seem to get away fast enough from him. We just got her to stop taking bottles and the kids newest accomplishment is sleeping in the same bedroom at night. Ken tried it while I was away for the weekend and they have done it ever since with no difficulties. We are happy to finally be putting away the pack 'n play that she has been sleeping in the laundry room for over a year.

We are still living in a 2 bedroom house, but making it work for the time being. We love our neighbors!

Our family is looking forward to what 2014 brings us. That's just some of what we've been up to lately :)

Thursday, January 9, 2014

We have a walker!

Lila started walking on January 4th and now she's walking almost everywhere. Earlier this week I saw her walk from the couch to her toys, pick up a shape sorter box, walk it back to the couch and play with it. It's amazing how fast they learn to do new things.

Lila is now 13 months old and talking a lot more. She likes to say "Tickle, tickle, tickle" when she goes up and tickles my belly. She cracks up when she does this. Her other words are "daddy", "mama" and sometimes I think I hear her saying "What's that?" but I'm not completely sure. I'm guessing the words will come quickly at this point. She's so full of gibber jabber that I think it won't be long before she's talking more.

I'll have to post a video of her walking once we get one :)

My little cheeseball