An Exciting Two Weeks

Owen continues to do well.  This past week we have experienced some minor setbacks from the new and improved Owen we had been enjoying since March.  Based on his coughing, we assume he has a cold, and that means Owen's less desirable habits (not eating or sleeping) have returned.  On the positive side, Owen and Pete are able to stay up late and catch all the overtime minutes the Bruins are playing.

Next Wednesday, my mom (aka Meme) is returning for a month.  We are all very eager to have her back in the house.  Owen gets in some splendid snuggle time with his Mammie (Pete's mom) twice a week so this will be a bonus for him.  The following Saturday, is Ellie's 2nd birthday.  He will be partying alongside her at a very fun music class.   After all of the celebration of next week, we will be getting down to business.

Owen has another MRI scheduled for May 3rd.  Pete and I are very eager to see what it shows and what Dr. T thinks of it.  We were incredibly frustrated by the lack of information we received after his last MRI in December.  This time we are more realistic with our expectations and will take any new information about Owen with eager ears.  We are also awaiting test results from three different disease categories.  Leukodystrophy is still in the mix, but we are also exploring a variant of Rhett's Syndrome, chromosomal defects, and another mitochondrial disease.  All of these are due back in early May, so fingers crossed, we will be learning more about our little guy soon.

Doing Great

It has been a few weeks since I updated the blog because we have been so busy.  The important news is that Owen is doing great!  Last week he officially graduated from Hospice.  We will miss our twice weekly visits from MaryLou, his nurse, but we are very happy to have a healthy(ish) boy who doesn't need to be on Hospice!

Owen's overall temperament has been improving weekly.  We see frequent smiles, he will giggle when we tickle him, and he turns his head in the direction of my voice when I walk in the room.  The other day, I came home from work and he was sitting contentedly on our kitchen island while Pete and Ellie prepped dinner.  I started talking to Ellie and he immediately started to fuss.  Pete turned to calm him and he didn't settle down until I came over to kiss him and talk in his ear.  He for sure knows his Momma!

One of my new favorite photos was captured in the past two weeks.  We purchased a stroller for Owen to be used in the house, a wheelchair alternative, for the next few years.  Owen isn't loving it, but we seem to be having longer successful periods the more we put him in it.  The other morning, I had Owen in it and Ellie insisted on helping me by strollering Owen around in the kitchen.  She had a blast and Owen was on the ride of his life.

Be sure to notice crazy hair his big sister is sporting.  Hopefully, Owen was enjoying this as much as she was!

Perkins School for the Blind has been doing weekly visits with Owen. We are very excited to gain perspective on Owen's vision status and how we can help to maximize the sight he may have.  Last Friday a Little House was dropped off for Owen's playing pleasure.  I will attach a picture of it later, but he loves it!  Both Pete and I felt confident that he was getting some visual stimulation while playing in it.

The other big event keeping us busy this past weekend was a visit from our great friends, BJ and Jenny.  They joined us from Oklahoma with their 23 month old, Silas, and their 2 month old, George.  It was a busy house, but we had a great time catching up!  Owen was on his best behavior and really enjoyed entertaining his house guests.  He made a trip to the park, the ocean, and Hodgies (our yummy ice cream stand).  We were having so much fun, the only picture I could find taken was of Ellie giving George (who was happily test driving Owen's nap nanny) a hug.  We miss the Potters already and are planning a visit to Oklahoma next fall.

Owen has also been doing a bit better with his sleeping.  We are now getting 5 hour stretches which are wonderful!  He is a seven month old, so we could have used these about five months ago, but will take the hours gladly.  Here is a picture of him demonstrating just how sweet he is when sleeping.