Two Down

Well, I can check physiatry off the list. The appointment went well.

Charlie isn’t any tighter anywhere and hasn’t lost any range of motion in the last six months. This is a good thing because he is having a bit of a growth spurt and I was worried that he was tightening up in the hamstrings.

The doctor said that I was fine with cutting out milk and urged me to try soy milk. He said that if he’s allergic to soy milk then he’ll probably throw that up too and we’ll know. He said we could do allergy testing if we wanted, but he didn’t recommend it since we seemed to know the source of Charlie’s issues.

I told him about ABR and he was fine with it. He actually said that anyone who does what he does needs to be comfortable with alternative therapies. So many parents of special needs kids pursue alternatives. He also said that any doctor who puts up roadblocks isn’t a very good doctor. All in all, that’s as good a response as I could hope for.

He said to keep doing what we’re doing and to come back in six months for hip x-rays. He also said that things would “ramp up” when Charlie turned three. I don’t know what the heck that means–any more therapy and I think we’ll both go nuts.

So, the two big appointments went well, and the appointment tomorrow with cardiology should be uneventful. I have to admit that I always feel deflated after these things. Charlie is doing SO well, and he looks especially great if you think about all he’s been through. Few people survive the kind of brain damage he’s had, and fewer still thrive. Even so, I wonder and worry and these visits only exacerbates these emotions. I am so excited about what he CAN do, but I realize that he is still behind. Is it OK to be a little blue even though things are really, really good?

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  1. Yeah, that’s totally normal. Especially during the first few years of Max’s life, visiting the doctors always left me bummed even when the report was good. First, I was still wishing Max was perfectly OK and not having to deal with Big Important Doctors for Children. Second, just the emotional energy spent on what the doctors would say was draining.

    It’s hard to accept good news when you know just what their poor little brains have been through–it’s almost a defense mechanism. But just focus on his cuteness (of which there is much) and the amazing progress he is making!

  2. I think Ellen said it all.

    My wish for you and all the other moms of special needs kids I know is to be able to sit back and not worry, knowing your child is fine – whatever the definition of that…The problem is defining for yourself what you think fine means. Difficult when your child is still that small. And with the luxury of that open-ended definition comes the anxiety.

  3. therextras says:

    Ellen and Nelba give perfect answers to your question. Feeling a bit blue is triggered by those visits with the physicians – who I am feeling very kindly towards because they treated you well.

    I think the reference to age 3 has to do with the expected transition to preschool. You probably already have some warning about what that transition will bring. I encourage you to anticipate preschool with the same courage you have for making medical decisions for Charlie.

    Regarding the hip xrays…this does NOT imply more therapy, but I hope you will continue to do what protects his hips – that is standing with AFOs. I address this in my latest post. His hips and ankles are soooo important to preserve and form correctly. (Bells and sirens went off in my head when I read another parent using ABR tell that her MD recommends hip surgery at age 3.)

    I have no doubt that the ABR is having the effects you see, but I am equally sure that standing will protect and promote movement in his legs.

    All the while you are working towards him moving himself, another consideration in the next year is the use of a wheelchair – keep breathing and know that does not mean the end of walking. In fact, a power chair can be a huge stimulus for cognitive development.

    You know I support and admire you, Bird. You are an important conduit to other parents who get support from reading your blog, too. Barbara

  4. Nadine Hightower says:

    Woo Hoo…we are onna roll!!

  5. Rural Felicity says:

    I find that I’m often really blue after a really good appointment, etc. I’m not sure of the why, but I don’t think it’s abnormal. And, yay on the no cardiology appts!!!

  6. I don’t have anything near as insightful as your previous posters, but I just wanted to say that I think I may go ahead and make an appointment for Fletcher to go see an allergist in Feb (the guy I want to see is booked until then). While F has no outwardly visible signs of allergies, I am wondering if at least some of his reflux and motility issues are due to a dietary intolerance and, since he was born at 25 weeks and got blasted with more than one round of the big-gun antibiotics while he was in the NICU, I am sure he GI tract is totally out of balance.