Happy Spring, Everyone!
I wanted to give you all an update on our little guy.
Earlier this afternoon, Daylon climbed up on a step stool in the bathroom and slipped off. His chin hit the counter and I was prepared for the worst. The impact did take off the first few layers of skin and it bled a little, but nothing like I was expecting. We just ride that cell roller coaster and sometimes he's doing great and other times, it looks like he's fallen off the roof. We're still hopeful that in a few years time, this can be a cure for him altogether.
|Man, I love this happy boy|
|He's taken a interest in tv ...well, more like he's taken an interest in Mickey and Curious George (George is his favorite at the moment)|
|As you can see he likes to be kissing distance from George and Mickey. By the end of an episode my back is usually aching from dragging him back a gazillion times. =)|
Something exciting for us to report is that Daylon has had a burst in talking. He's still not age appropriate but it's been such a huge improvement! We're really hopeful that his recent mental improvement will catch him up further with his peers!
|He's become mister independent this last month and has insisted holding the breathing potion of the nebulizer for his breathing treatments. Such a big boy|
Everything else is about the same as the last time I gave an update: his heart is enlarged, blood clots in both arms, his brain is too small for his skull (but rewiring itself all the time, thank goodness!), he's not had a blood transfusion since Oct. and he continues to have "junky" lungs. His breathing has fluctuated over the last several weeks with our CA wind and then rain and then sun and then wind and rain. It's part of the reason we're so excited for Spring over here! We can go OUTSIDE!! I'm so pasty white I could pass for a ghost. Haha! We have three months before Summer comes and starts to break down his skin and then it's back indoors.
|One of his most loved (or loved on) toys. I picked this beast up at Costco last Spring for $30 and I just saw them there again this week, in case anyone is interested.|
I want to thank you all for all of the love and support our family has received over the last 2 years. It's been amazing, and I'm grateful that there are so many of you who still continue to pray for Daylon and our family and check in on him. I'm sorry I'm such a horrible blogger, but I am grateful.
For your entertainment, I give you dancing Daylon...
PS- I put an email button up on the blog for those of you who have requested it. Thanks for checking back so often to see if I've updated...again, Sorry!