Thursday, December 26, 2013

Merry Christmas, and update of the past year!

Merry Christmas Friends!

I have never sent out a Christmas "letter" but I suppose this is as close as it's going to get for us! I truly miss blogging. Life has been crazy busy around here and with the third child and starting home school my brain is fried at the end of the day.... so this will probably be the longest update yet!!

REWIND to May of this year, Lyla celebrated her 6th... yes, SIXTH birthday! We had the annual Lyla/Papa Steveo joint birthday party with the family. It was a good way to end her Kindergarten year and kick off the summer.

We spent the summer swimming, playing, traveling, and more swimming! We all had a twinge of green in our hair by the time fall rolled around, and I miss it like crazy. We also had a lot of big decisions to make, mostly in regards to if we were going to send Lyla back to public school for this school year. She had a rough go in Kindergarten and after a lot of prayer, talking to our friends who homeschool, praying some more, crying a little (okay, a lot sometimes), and a little more praying we decided to give it a go. We have joined a community of homeschoolers here in Omaha, and I have totally fallen in love with it. It is so fun to watch the girls learn and grow together. I am learning as much as they are, my brain is tired!! Evie is still going to public preschool three times a week which is good for her as she gets speech, PT and OT services, and we will continue to pray and listen for God's leading year by year as we decide what to do with the next two girls.

Our foster daughter is still with us and everything is going well. July 19th marked our first full year as a family of 5. She is an absolutely blessing, full of fun, definitely working through some terrible twos, but that is expected! I wasn't sure what my mom was talking about when she always told me the third kid was by far the hardest... but I am going to have to agree with her! For some reason I feel like I went from still having SOME free time to being totally tied down. Add home school on top of that and we are usually doing something 24 hours a day, 7 days a week. Good thing I love these guys with all of my heart!

As far as Evie's health goes, she finally had her right foot surgery in October. She had a tendon transfer, they lengthened a second tendon, a muscle, and released a few curly toes. I was pretty nervous going into surgery - these elective surgeries seem to be so much harder than the life-threatening ones, which sounds so backwards. Evie's first surgeries were necessary. They HAD to be done, there was no "if." This time we got to choose what month we would do surgery, how invasive things would be, etc. The main reason for this surgery is that she had been walking on the outside of her right foot and is pigeon toed to the point where her right toe constantly trips her on the back of her left leg. The few days we were in the hospital were horrible, lots of throwing up and pain. The 7 weeks in a cast were rough but her foot has flattened out and she is walking beautifully. It's funny because her right foot was so prominently turned in that we didn't bother with her left foot, and now her left foot looks like it needs surgery. I am going to wait until after the holidays to call her doctor about that.

Evie just had her 6 month clinical trial check, and the drug still seems to be working as she is growing physically and making new strides developmentally. This past summer we got the chance to go to Chicago and meet a group of other families affected by HPP - some adults, and some kids. It was amazing to get to meet these other families and see what they have done, how their disease has progressed, and how some of them are doing on the drug trial. We are blessed to know these people and Evie exclaimed on many occasions how she met a friend "who has HPP just like me!" We have already booked our next trip to a patient meeting in San Diego in February, a similar trip to continue to meet families, connect with physicians and educate ourselves and others about hypophosphatasia. It's wonderful to be in a place where Evie recognizes that there are other wonderful people that are 'just like her.'

One of the toughest weeks for me lately was just after Evie got her cast off, and she asked me on a daily basis "why I have hypotasia?" and "when will my scars go away?" I guess I assumed that since we talk so openly about her disease and surgeries with her that we wouldn't have one big talk about it, but we definitely did, and honestly it broke my heart. It's hard to tell a four year old that God has a big plan for her life and hypophosphatasia is part of it, but it's the truth. It's really hard to tell her that when she's in pain. But He is good, and she is wonderful and I am taking this one day at a time.

right foot post surgery (:
This Christmas was very special as my new niece was a part of it. My older sister had her third child in September and Sammie, the new baby, nearly lost her life to heart failure. It was sudden and totally unexpected. To spend the holidays with her and Evie was a humbling experience. It was the perfect reminder of God's blessings, the biggest that he sent his son Jesus, to save the world, and that is He is always with us. Those dark days when Evie was so sick came flooding back as I spent time with Samantha in one of the hospitals that Evie has spent so much time in. What a blessing it was to watch her get well.

Love you friends!! Here are a few pics of the girls (:
Oct 2013

first day of school - Aug 2013
 Evie and Herbie Husker at the husker heroes event
 Evie's favorite birthday present, her mini-cooper
 Evie at dance class this summer