Category Archives: Uncategorized

It’s been so long since a last update but I can’t even begin to explain how many views and great feedback that has become of this blog. Every time I turn around everyone is saying how much they love reading these. My first intention was to tell Evs story, talk about his journey, and honestlyContinue reading “Everett Update”

Everett is known by so many names. I always say he won’t know his actual real name. Most of the time he’s well know by Everett in jeans or Everett Eugene given by a friend at school. He also goes by PB, Evi or just jeans. At the really beginning of this blog I wantedContinue reading “Everett in Jeans”

Everett has had his new “feet” as some people call them for about three months now. And as to what any person would expect he is doing absolutely amazing! The decision to get his AFOs were because he stands with the inner part of his feet. So he has no balance. He got fitted forContinue reading “Feet!”

I know all parents go through old baby clothes and think “they were so tiny”! Well the other day I was looking at clothes to give to a close friend and all the memories came flashing back! All the planning and purchasing of clothes before hand was “typical”. Thinking….. Oh we’re not going to getContinue reading “Tiny”

Today Ev had his every 6 month assessment in Iowa City. This is a appointment that I dread every time because it lasts about 4 hours. As much as I’m exhausted from it Ev is just as much. During this appointment we met with PT, OT, Speech, a doctor, a dietitian, audiologist and a socialContinue reading “Ev’s Assessment”

This is the first time we are a part of feeding tube awareness week with Ev’s tubie. I can’t and would have no idea this was going to be a part of our life last year at this time. Even though there still are days that I question this part of our journey, the benefitsContinue reading “Feeding Tube Awareness”

A couple weeks ago I received the news and confirmation of Everett’s diagnosis. You all probably think, yeah we received his diagnosis a year ago. Well…. we decided to get the confirmation of the specific gene that is affected with SLOS, which is the DHCR7. His initial diagnosis was from his cholesterol levels which isContinue reading “Daily Reminders”

I thought I would write this next blog on Everett’s diagnosis, just to give you all some insight of it. Smith Lemli Opitz Syndrome is a genetic disorder and affects every child very differently. So Smith Lemli Opitz Syndrome or SLOS for short, because it can be a mouth full at times to say. ItContinue reading “Smith-Lemli-Optiz Syndrome (SLOS)”

Throughout our journey there were so many obstacles being thrown at us, and having no idea where to even start when finally finding out the official diagnosis. Starting our therapy journey was a huge step. We had more people on our team wanting the absolute best for Everett. When starting PT and OT therapy aboutContinue reading “Therapy Journey”

I have gotten so much feedback and requests about different topics people want to hear. So, I thought I’d share our “Day in the life” Everett’s edition! Our everyday is different depending on where Everett is spending his day. Either daycare, dads or papa and grandmas house. But every place he does go to heContinue reading “Day in the life “Everett Edition””