Goodness, where to begin? I have told myself I was going to
write a new blog update at least twice a week since January. We have had a
pretty eventful last few months. As many of you have seen, Nolan got glasses
(which are super cute), and tomorrow he will be undergoing a surgery on his
eyes to keep them from crossing. This seems to be a pretty common procedure
with CDG kids. We are nervous, of course, but we are excited that our sweet boy
will be able to see more clearly. Surgery is scheduled for 7:30 in the morning
and we hope to be home in the early afternoon.
In all other areas Nolan is doing great. He is still behind
developmentally, but is doing well in therapy and showing signs of improvement
each week. Right now he gets physical therapy and occupational therapy once a
week, speech therapy and skills therapy twice a month. Currently we are working
most on sitting up using a side sit method where he uses his arms to help hold
him up. He can currently stay up for about 10 seconds consistently. We also spend
quite a bit of time working on rolling over. He can easily roll from back to
belly, but hasn’t decided he wants to try to roll back. He LOVES tummy time and
will actually push against you when you try and help him roll to his back. So I
think it may be a while before he has mastered this. His head control is
getting so much better; he still struggles some when he is tired, especially if
he is working on sitting up at the same time.
We are happy that springtime is here, kind of, what is with
this crazy weather?? However, we have been able to get out and about a little
more. Nolan has been able to attend a track meet, softball game, and a couple
of baseball games. We still have to be cautious with people touching him, and
our pediatrician recently warned us that though flu season is over, respiratory
virus season is still going strong. He advised that we continue to avoid crowds
in enclosed spaces. Open air and hand sanitizer will continue to be our best
friends.
That’s really all I have for you. Nolan is maybe the
happiest baby ever. He loves kisses, snuggling, being tickled, bath time,
laughing, talking (he will say D’s, M’s, and B’s), he also likes to growl and
screech. His newest thing is spitting and making tooting noises, typical boy.
He loves peek a boo, singing, reading books, chewing on EVERYTHING, and being
outside. We love to sit on our back porch and watch the birds.
I am sorry it has taken me so long to write this, I will TRY
to do better in the future. As always, we appreciate the continued love and
support we receive and would appreciate a few extra prayers for Nolan and his
doctors tomorrow.
