Thursday, August 18, 2016

Catching up!!

Wow it's been a while! I know I say that each time but blogging these days is tough for me to accomplish! These boys keep me on my toes for sure! And when I have a free moment I tend to put my feet up and close my eyes! 

A LOT has happened since I last wrote. First and foremost, Evan is now a SIX YEAR OLD!!!! We celebrated his birthday on June 9 and then had his whole class over for a party that following weekend. He was a very excited and happy kid to have all of his buddies come play and celebrate. 

After our many birthday celebrations, Evan finished off his school year as a Kindergartener. So he is officially a first grader! Ahhhhh! I can't believe it! Evan's school is very special. He is surrounded by love and support and we couldn't ask for a better community to live in. This year, as the 6th graders moved up to the high school, they choose someone to dedicate their yearbook to. And can you take a guess at who they chose?? Check out this video. My little man walking up to accept the honor!!

(Sorry about the quality, the sound is all you really need!)

After the school year was over we kept busy doing summer activities. We took a family vacation to the Cape and then up to the Green Mountains in VT to camp. Evan just LOVES to camp. I was always a bit worried how we would work it out considering, camping isn't the cleanliest   experience. Fortunately our good friends live a mile from a beautiful camp area. We have the experience of true camping with a home and bath tub at our fingertips when need be. 

Between trips to the lake, trips to Action Wildlife, adventures walking through the grocery store to pick out snacks (which is his first choice) and the therapy/summer school he attended, we kept pretty busy. Now the summer is winding down and we have a few weeks left to enjoy. 

Another very exciting change for Evan is that he finally got his wheelchair! He's been very anxious to get it and couldn't be happier. I am so proud of him and how well he can maneuver this thing! He will be bringing it to school as his main source of independence. 

Tuesday, May 31, 2016

Ichthyosis Awareness Month 2016

It's Ichthyosis Awareness Month! I know I am about 30 days late, but better late than never! I have been without a desktop for months and writing on the blog using a small device is rather challenging to do! Nonetheless, here I am trying to do what I set out to do by starting this blog.

Learn more about ichthyosis and how you can help at the FIRST Skin Foundation!!!! 

Here is an update on the boys:

Evan is doing amazing! He is wrapping up his Kindergarten year with a bang! He started the year off with little mobile independence and now he is RUNNING around the halls in his walker. He is probably the only kid in school who is "allowed" to run! He has accomplished his Kindergarten goals academically and has pretty much accomplished his gross/fine motor goals as well. Evan continues to have a extreme love for school and I can only assume a lot of that love is thanks to the amazing care he receives from his aide, nurse and teachers. 

As for Evan's ichthyosis, it is the same as last year, the year before and the same as he was born. Ichthyosis does not change or get better over time. Luckily we have been able to avoid any serious skin infections. I like to attribute that to our obsession with keeping his skin in its best condition possible (bathing 2x/day, min of 5 head-toe aquaphor applications/day and intense exfoliation: keeping him as scale free as possible). We still battle with the dry conditions in the winter and the heat, now that summer is at our doorstep. I honestly wish the AC fairy would come and magically install central air in our home! Fighting with window units all summer is quite stressful and nerve wrecking. But as stressful as it can be, ichthyosis is our normal and something that just comes with motherhood, for me.

Evan is delighted to be a big brother and is such an amazing brother to his baby bro. Though the tables are turning a bit since Cenzo is able to walk and move about. Evan, still, has never seemed to be frustrated or discouraged that his baby brother is more mobile than he is. Evan only encourages Cenzo and cheers him on when he accomplishes the milestones that come so easy to most children. Evan truly is such an amazing child!

Side note on Cenzo: after his most recent cardiology visit, he "graduated" to annual check ups rather than quarterly! Everything seems to be the same (with the tumor) and not causing any issues for his heart! Good news on that end! Phhheeeewwwww!

Now for your viewing pleasure, my boys rocking out to Evan's favorite song!