Many exciting things have happened since our last update. I guess the biggest would be that
Owen turned one year old! We couldn't imagine a year ago how things would be now. We couldn't
be more thankful for how things have turned out. I can remember so often saying, "What I wouldn't
give to be a year down the line and just know how everything is going to turn out". Well,
it's a year later and I guess there are still a lot of unknowns, but if I could have seen then
how things are now, I would certainly not have been unhappy about our prospects.
We did the traditional things, including the
first cake, with the wonderful, predictable mess:
As you can see in the
info page, our big project recently has
been the walker. It has been great to see Owen motivating himself around. It takes a lot of
strength and he only ventures about 5 or 6 feet in each session, but each little bit of
independence gives us more hope of great things to come.
He now gets physical therapy
twice a week instead of just once. He was starting to be able to do a lot more and it seemed
that he would benefit from more frequent therapy sessions.
He can lift his head off the therapy ball for a few
seconds, but it takes all his strength and he doesn't really try unless the therapist is
making him do it. Still though, it means that he is definitely gaining strength a lot
faster than we thought he would. If you put him in a sitting position he can stay there
for a few seconds on his own. If you hold his sides to help with gravity, he can hold his head
up in a seated position for about 30 seconds. When he sits in his walker or his bouncer, he
can stand up straight for a short time and he can sit in there holding his head up
away from the supports for a little while all on his own. We thought he'd be a year and a half
old or more before he would even have any hope of doing these things.
We found out that Owen is most likely missing one of his two front teeth. It is also possible that
he had two smallish ones that fused together, or that he grew an extra one that shouldn't be there
at all that fused with the one that should be there. The dentist says mostly likely though that he is just missing one. If he is missing
a baby tooth then he is probably missing the permanent tooth as well. We'll know more when the
rest of his teeth come in. Apparently this probably
has nothing to do with the hydrocephalus and it can happen in anyone. Ah well, with braces and
a false tooth they should be able to fix that when he's older. If it's not one thing it most
certainly is another.
Let's see, what else has happened since our last update? We made a trip down to Duke to visit
another family whose son was having a cord blood infusion. It was great to see another family
taking advantage of this possibility.
Owen had another eye appointment. His left eye still doesn't track quite properly, but it is a
lot better than it was. He does seem to be able to align them properly when he concentrates,
it just slides off to the center when he's not paying attention. So, the doc waved off on surgery
for him again and we'll go back in three months. Any appointment that we walk out of that doesn't
require surgery is a good appointment.
Owen still babbles a lot but he doesn't have any real words yet. He will say dada and mama, but
I think he believes we're both dada. Of course he also calls his bear dada and his sister dada,
so it's kinda hard to convince ourselves that he knows what he is saying. For someone that doesn't
have any words yet, he does talk an awful lot. He can go for an hour at a time just babbling away.
He has also developed quite the sense of humor. Anything with stripes on it is apparently
hysterical. He "talks" to his bear and apparently whatever the bear says back just makes him
roll with laughter. A couple of months ago he was laying out on his blanket all by himself. I
was wanting him to calm down to take him up for a nap, so he didn't have any toys or anything
with him on the blanket. He just started laughing and laughing and I couldn't imagine why
given the fact that he was all by himself. Then I looked down and saw that he had grabbed his
own foot and was managing to tickle himself!
We've had a few colds, but other than that it has been pretty status quo. We have met two local
families who are dealing with hydrocephalus since my last update. One has a son that is 20
years old who has hydrocephalus and the other is still pregnant. I have met so many wonderful people
through this website, and they have all helped sustain me through these trying times. But I have
to admit that it was great to meet someone locally that I could just sit and talk to who
either went through this all already, or who is going through it now and will have a child whose
age is similar to ours. I wouldn't wish this on someone just so that I could have someone to talk
to of course, but I am glad that we can be there for each other.
Next month Owen goes back down to Duke for a CT scan and checkup with his neurosurgeon. We are also
going to meet another family whose daughter is getting a cord blood infusion. Owen's checkup and her
infusion just happened to be scheduled on the same day, even though one was scheduled in May and the
other in October and neither one knew when the other's appointment was. Who says these things aren't
meant to be?
I will close with a picture of Owen taken August 11, 2007 and one taken
on his birthday, September 25, 2007.
Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.
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