What is Joubert Syndrome?

.2013.



Wow! Cannot believe another year has gone by. I know it sounds so cliche but it really does seem like time goes faster once you have kids. I want to relish every moment and remember everything because it changes so quickly.

2013 was another big year. Lot's of highs and a lot of lows. It seems that we can't just have an uneventful year, but I guess that's what keeps life interesting.

In January, we relocated to Spokane to be closer to family and for me to have the opportunity to stay home. I was excited to move near family and even more excited to be at home with the boys, but leaving Seattle was tough. After 5 years we had grown to love it, had built a strong community, loved our church, and even learned to embrace the rain {crazy, I know}.

Settling into our new life was easier than I had anticipated and we quickly found a new church, I was able to get Parker started back up in his therapy services, and we enjoyed having the snow and a real winter. 

With Spring came the new adventures of enjoying our new yard, playing outside in the SUN, training for a half marathon and completing it, tax season, golfing, and the anticipation of summer.

We thoroughly enjoyed our summer. It was dry and hot and we were able to enjoy many days at the pool, golf course, playing in the sandbox, going for runs, etc. Pretty much anything we could do outside, we tried to do. We even were able to have a small little garden that produced quite a few good crops! It was so fun to go out to the yard and pick some produce for dinner.

We were able to travel to Northern CA to see my parents for a few weeks in July, and then the entire Dietzen family went down to Corona del Mar for a week to spend a week at the beach and send off Auntie Hannah to college. While in Southern CA we were able to connect with the Lee's, another Joubert Family. It was a very healing time for us to meet someone walking the same road as us and Nick and I have been so blessed by their friendship. 

As the year went along, I always had a constant weight in my heart that something was not totally right with Lane. He just wasn't developing at the same rate as he should, and I just felt in my heart that he had Joubert Syndrome as well. After pursuing the doctors and voicing my concerns we finally got an MRI scheduled and Lane was diagnosed with Joubert Syndrome on September 4, 2013. Although I knew this in my heart, it was still hard to hear and to have my fears confirmed.

The fall flew by as we were busy with Parker starting in a special needs preschool 4 days a week, having therapy 3 times a week and Lane having therapy 3 times a week as well. I spent most of September driving the boys to school, dr appointments, or therapy, but we have gotten into a routine and it is much more manageable now.

Parker has absolutely THRIVED being in school and is learning new things every day. His vocabulary has exploded, he is a little social butterfly, has met almost all of his IEP goals for the year, and has everyone wrapped around his little finger- he is quite the flirt! We have been able to meet some friends through Parker's school and it is so nice to connect with other families and parents of children with special needs.

Parker went from screaming every day at therapy to asking to go and smiling through it. He works so hard, but has learned to enjoy it and is continuing to make excellent progress. He got new custom orthotics for his feet that help him to stand and he has a little walker that helps him to walk. We are hopeful and prayerful that he will begin walking within the next year. 

Lane is our silent but stubborn little guy. He is a pretty easy going little dude who smiles a lot, but has a quiet stubbornness to him. Especially when it comes to therapy, he does NOT like someone forcing him to do things and he makes it known :). He works extremely hard too and is doing well, we are just hoping he learns to love his therapy like Parker does because it's not going away anytime soon! He is sitting independently, rolling like crazy, waving, talking, playing peek a boo, and starting to show beginning signs of crawling. We are hoping he starts to crawl soon and bear significant weight on his feet this next year.

Nick is doing great at his job as a CPA as well as exploring some work within the Wealth Management side of his firm. He works hard so that I am able to stay home with the kids and for that I could not be more grateful!!

I have loved being able to be home with the boys this year and be fully present for this time. My weeks are filled with therapy, school, and any other needs the boys have, while trying to maintain the household, but I couldn't be happier doing it. This is my dream job and I am so thankful to finally have this opportunity.

We have rejoiced, we have grieved, and we have grown tremendously this year. Nick and I always look at each other and say "this may not be what we would have planned, but we wouldn't have it any other way". God has met us in some of our darkest times this year and shown us what it truly means to surrender to Him. 

We have been abundantly blessed with friends and family who have rallied around us and lifted us up when we couldn't do it ourselves. Who have loved us and our boys unconditionally. And who have supported us and been there for us when we didn't necessarily deserve it. 

I can't help by look back at this year as a defining one for our family. We are happy, we are blessed, and we have so much hope for the future. I pray that 2014 is a year of growth, of huge milestones, of living each day to it's full potential and living in the moment.

Merry Christmas and Happy New Year!

Love, 

The Dietzen's

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