What is Joubert Syndrome?

.updates.

Whew! January turned out to be even more crazy than December....how is that even possible?!? It's been a few months of ups and downs but so far 2012 is looking up for the Dietzen clan! Hopefully the below will help explain why I have been MIA the past few months.

The first week of November my mom came and stayed with us to watch Parker while his daycare was closed. It also just so happened that Nick had to be out of town for an audit so I was able to spend a kit if time {when I wasnt working} with just my mom and Parker :) It's so fun to get to spend time with my mom. I have a whole new appreciation for my parents after having a child and its really neat to see them with their grandson.

The next week, Nick's mom came and spent the week with us as Parker had ear tube surgery and his adenoids removed. He has snored extremely loud since he was born and had almost 10 ear infections, so this surgery was a must. Mishal was a lifesaver and stayed home with him while I had to go back to work and made sure he got his medicine on time, slept well, and got lots of love!! My dad also happened to be up here the day of his surgery for work, so he came to the hospital and hung out with us while he recovered. The surgery was still a little nerve wracking for me eventhough it is a pretty routine surgery. It's hard to see him go under anesthesia and he has been through so much already, I hate to see him have to do another thing. BUT, it hs been amazing!! No more ear infections and his snoring has almost completely stopped. He is such a trooper!!

SOOO Big!

For Thanksgiving we headed down to California to my parents house for a week. They had just moved into a beautiful new home so it was fun to see their house and spend a week with family in the beautiful sunshine! I love being able to go visit home every couple months and I hadnt been home since May, so it was a much needed trip to CA!!

December started off with our 4 year wedding anniversary {woo hoo!}, and then we had Nick's work holiday party. And between holiday parties, crafting, decorating, and Q4 at work, it as Christmas before we knew it. We spent 10 days in Spokane with Nick's family for Christmas and New Years. I was excited for 10 days off work and relaxing and hanging with family...however, it didn't turn out to be the relaxing week I thought. Right before we left, Parker came down with strep throat so he was on antibiotics and was definitley off. So that allowed for little sleep and sanity for mom and dad. Then about 5 days into his antibiotics Parker came down with a nasty case of the stomach flu and we ended up in Urgent care and he ended up getting an anti nasea shot. Nick then came down with the flu that same night and I got it the next day. So we were one sick family :( We enjoyed being around family but wish we could have all been healthy!
Loving the Christmas Tree!

January started off Nick's busy season and we both jumped right back into work after our break. Parker still wasnt doing very well and was waking up at night quite a lot. We ended up taking him to the doctor again and he had strep still because he never finished his first round of antibiotics due to the stomach flu. This made for very stressed and sleepy parents as it had been about a month since Parker had slept through the night...but we were on the mend. Then "snowpocolypse 2012" hit the Seattle area right at the same time of our 3 day national sales meetings. We got a considerable amount of snow and ice and it pretty much shut the city down. So I ended up having to spend 3 nights in downtown Seattle at a hotel for the meetings. So Nick was playing Mr. Mom all while trying to get the billable hours he needed for tax season and navigate the snow and ice. It was fun and crazy and stressful all at the same time! Then on Saturday night we had my holiday party at the Paramount theatre in downtown Seattle which was really fun! And then that Monday we left for a week to Washington DC!
Snowpocolypse 2010...the beginning!

Holiday Party
We participated in a study at the National Institutes of Health on Joubert Syndrome. They flew us out to Washington DC to study Parker and other children with Joubert Syndrome to follow the different conditions that can go along with that. They were more specifically looking for kidney and liver issues as well as retinal deterioration. I will do a whole separate post on this trip because it was amazing and so interesting, but the good news is that Parker's test came back great and they dont foresee any isssues in the future with his organs or eyes :)

At the Lincoln Monument

Riding the Metro

During the EEG
Now here we are in Febuary! CRAZY!! I am started a new position at work {woo hoo} and Nick is full fledged into busy season with the long hours and weekend working. Parker was doing great for a few weeks and was sleeping through the night, but the past few nights have been challenging with little sleep. And so goes the juggling act of our lives!

Random thoughts and upcoming blog posts: Holidays; NIH; Balancing Act; Future Babies, etc.

Hope that has peaked your interest for future posts :)




1 comment:

Dani said...

I have no idea how you do it, Anna! You're superwoman!