Owen's Wheelchair

Owen's wheelchair was delivered today.  Here are a few pictures of him in it.  I cannot wait to get him outside and try out the stroller frame.  So exciting!!

Front view of the High/Low Base (for indoor use)

Handsome Owen in blue.  It brings out that gorgeous red hair and he has a Nuk to match!

The High/Low base it in the full upright position.  It can also be lowered almost to the ground.  I have already put it down to Ellie's height so she can push him around the house and play with him.  She enjoys putting her snack on his tray

This is the stroller base. The seat just slides off and attaches to this  base.  Super simple and the outdoor base is rugged so we can do some off roading! 

Owen  playing in his light box from Perkins 

Busy Busy

Owen Updates

I have been pretty lazy about posting to the blog this past month.  I am not really sure where my lack of motivation comes from, but mostly I think I am waiting for something newsworthy to report.

Owen has appointments this coming Monday in Boston at Neurology, GI, and Radiology.   Owen's seizures remain uncontrolled by medication and are getting worse.  We are meeting with a new GI doctor to review Owen from mouth to tiny tush because he struggles from top to bottom.  He will have a x-ray of his hips to see if we can use a stander with him safely.  I will do my best to provide an update on the appointments next week once we learn more.

We are eagerly awaiting the WES genetic testing results in the next few weeks.  We were given a 16-week turn around time frame and that will arrive the first week of April.  I am so eager to have the results and eager to learn more about Owen and what is happening to him.  When we sent out for the testing, I had very little hope we would receive any useful information. At some point during this time period of waiting, my position has changed.  I really feel strongly that this test is going to solve the mystery of Owen's disease.  It is very difficult to be patient.

Here are a few pictures of my adorable guy:

Rocking his jeans (and genes) on Rare Disease Day

Sisterly Snuggles

Naptime with Mommy

First time at swim class- LOVED it

Two cute Irish kids

Playing in the snow