March
It has been a pretty busy month, with ups and downs. Miles was in his brace for the first part of
the month, but when we went to follow-up on the brace (1 month later) he had
lost some of the correction in his right foot, so he has gone back to casts for
the past few weeks. We’re kind of bummed
about that, but it’s better to do it right NOW then to try and fix it when he’s
older and his soft tissues aren’t as soft and he may need surgery. Because he has arthogryposis in his hands, it
means his feet are a little more complex than someone born with just club feet
and no other congenital deformities, which means he’s more likely to have
trouble taking correction. His muscles
want to pull him back to the position his feet were in when he was born. Back to casts, which means no exercises,
sponge baths, no socks, no need for footless pajamas, we’re more used to
this. There’s good things and bad
things. I do miss the real baths, I
think he does, too. But it’s really a
short time, and we’re grateful he’s getting the right care, and that they care
so much that he gets nice feet.
We weren’t super thrilled with his doctor who is treating
his club feet. She is kind of rushed all
the time, and quick to make assessments, sometimes without even taking his PT’s
opinion into consideration. She’s
started talking about doing another tenotomy, which is the surgery where they
cut his Achilles, which he already had. We
had heard about another doctor in the area was the best, and had tried to get
in with her originally, but she wasn’t able to fit him in within two weeks of
birth, which gives you the most chance of success, so we went to the one we’ve
been seeing since his first appointment.
There was a lot of things that we thought could be better, and hey, we’re
paying for this, so we might as well try and get the best care possible, so we
switched to the one who is supposed to be the best. There are a few subtle differences, and some
not so subtle, that just make me feel a lot more comfortable. I just felt like it was a little haphazard
before. This new doctor is a lot better
and she is also a hand specialist, which is awesome. The course of events may be the same with
this doctor as it would have been with the other one, but I just feel better
knowing we did all we can, and I’d rather go to the doctor who seems to be more
precise, takes her time, and is willing to answer all your questions. She also tolerates baby’s crying a lot
better, which is a good attribute to have in that profession. She also uses less padding underneath the
casting material so she has more control over the position of the foot.
He continues to see an Occupation Therapist/Hand Specialist for
his hands, which are looking beautiful, and has started seeing a Physical
Therapist for his gross motor skills. I
really like his OT and PT, they have been awesome, and we’re seeing lots of
good things with his development.
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| Watching "Duck Dynasty" with Dad on a snowy day |
He’s started clasping his hands together at midline, and he’s
getting them into his mouth more. He’s
started to grab onto things and holds them for a little while. He has a lot more control over where his
hands are going. When his casts are off he
likes to touch his knees and he’s rolling onto his sides. He’s getting better at “tummy time,” and
spends more time than he did before.
Usually tummy time ends because he’s frustrated with trying to get his
hands into his mouth. His motor skills
are about a 3 month old level (he’s 4 ½ months).
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| Playing cards with Grandma |
He is talking up a
storm, and has discovered shrieking this week.
You would think he’s upset by listening to him, but then you look at his
face and you can tell he’s enjoying listening to himself. Especially when he’s around people that are
talking, he wants to join in, too. He’s
also started sticking his tongue out when he cries, what a weirdo J. He is getting a little personality and we’re
getting to know him a lot better. He
loves to look at himself in the mirror.
Sometimes he smiles at himself and quickly looks away, so I turn around
and he’ll repeat it, it’s super cute.
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| Pre-Walk |
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| Post-Walk |
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| It's nice to look back and realize how far we've come. I loved him then and I love him now. We want to give him the best opportunities we can. Love you, Miles! |
