Its official – Max has Cerebral Palsy

If you’ve been reading my blog, then you know that we recently found out that our son, Max, has global developmental delays. Today, we went and saw a Neurologist. She confirmed everything that we thought, Max does indeed have Cerebral Palsy. He has Spastic Diplegia which means that it affects his legs.

I had thought he had spastic hemiplegia (where it affects one half of the body) but he does not. This is good and bad. The good news is, chances are higher that he does not have cognitive dysfunction… yeah for that. But it means that walking is not something we should even begin to think about until he hits some more of his other milestones.

The Neurologist was amazing. She was kind, gentle, knowledgeable and frank – everything I want in a doctor. Our meeting went a lot longer than expected but that’s because I had so many questions and she was willing and eager to answer all of them.

Obviously, I’m not a doctor but I have a mind for science and math as well as my love for research. Thus, I’ve learned A LOT during the last few weeks since we got the initial diagnosis. OF course, there is so much conflicting information it was nice to sit with someone that really knew what she was talking about. When I asked questions she didn’t just give canned or dumbed down answers, she went a little bit into the science which was great for me. We went over what was discussed with the other doctors as well.

One of the big things I learned about today was why Max is having trouble eating. I thought it was because the CP affected the left side of his body, but it is actually because Max’s neck muscles are so weak. When you think about it, its amazing that we were able to breastfeed at all considering the condition of his neck and jaw muscles. Max definitely has trouble eating correctly when he’s tired. Breakfast is pretty clean. Dinner is VERY messy!

She recommended getting as much physical therapy as possible for Max. Probably the most disheartening thing about today was learning that Max should’ve been getting therapy since he was 4 months old. I feel some guilt coming on… You see, when Max is older, I’ll never know if Max’s condition would’ve been better if we had gotten him in earlier. I knew that something was wrong. Eli (my husband) knew that something was wrong. We didn’t admit it to each other until a few months ago. We kept hoping that Max was just going at his own pace and that he’d catch up.

If only I knew then what I know now. But I didn’t and I can’t go back and change it.

What I can do is be the best advocate I can for my son. Learn as much as I can so I can help him out as much as I can. Encourage him to be the best he can be. Ask for help when I need it. Shower unconditional love on him. In other words be his mommy.

Posted in Cerebral Palsy, Personal, Special Needs

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