LJ’s Diagnoses

After explaining Cerebral Palsy, I thought it would be best to explain how it affects LJ, especially considering the many different types and severity of CP.

LJ’s “official” diagnosis is Hemiplegia Cerebral Palsy.  I guessed this before the doctor even told us because, well, he just doesn’t use his left side.  It’s not just the right side of the brain (remember the right or left side of the brain controls the opposite side of the body) that was damaged, but sometimes diagnosis are based on the physical ability.  I often wonder if I asked our neurologist to make a diagnosis if he would concur with our rehabilitation doctor.

One of the main issues with this diagnosis is the formation of muscles, bones, sockets, etc.  For example, since LJ cannot stand, crawl, or walk, his hip isn’t forming correctly and combined with his spasticity (tone), he is at risk for dislocation.  Add to the fact that his left leg is shorter (about 2 cm) because he can’t use it as much during physical activity (think kicking, swimming) and because he’s not regularly bearing weight, it can be a vicious cycle.  Currently, we have AFOs (which are braces for his feet and ankles, to keep them straight while standing in his stander and practicing walking) with the left side having a higher lift to correct the discrepancy.  Despite this correction, surgery is probably in LJ’s future. 

LJ also doesn’t use his left arm/hand.  You’ll see him move it, which is good!  But the farther down the limb you go, the less control he has.  He might be able to use his arm to help him prop up or catch a fall one day, but he’ll probably never write with the hand.

Although LJ’s left side is obviously his weaker side, he still has some overall issues with tone and body control.  When he gets tired, you’ll see his head control get worse; he’ll usually slump to the side.  With our last round of Botox (which helps reduce tone) his posture improved.  I found this fascinating as I had no idea the reason he slumped was due to tone and not because a lack of control. 

Right now, LJ cannot sit unassisted (he can if he’s propped up for a short while), walk, or talk.  Personally, I don’t rule any of these things out for his future.  He’s has already proven us, and many medical professionals, wrong on several other occasions.  He’s a strong, smart boy, who needs lots of repetition and encouragement.

Along with CP, LJ has a Cortical Visual Impairment (CVI).  I could probably write a few posts on this, so I’ll just touch on the subject.  Like CP, CVI is different for everyone.  CVI basically means having a visual problem that has to do with the brain as oppose to the actual eyes.  This makes it really hard to know what a child sees because some children don’t talk and some just don’t have the words for what they’re seeing.  It’s best to present things in high contrast, like in black and white, black and red (LJ’s favorite combo), etc.  For LJ, when he’s tired, it’s apparent that his vision gets worse.   This isn’t surprising since the same thing happens to me.  You’ll see he has glasses for his strabismus, astigmatism, and being near-sighted like his mama (sometimes I think clearing up all these physical issues helps him work through his CVI better).  Light gazing use to be a big issue for us.  If there was sun shining through a window or a bright lamp or flourescent light, it would be very hard to get his attention.  Many times we would have to work in a dark room or place a black Invisiboard in front of the light.

Although many children with CP have issues with seizures, and even though LJ has a history of seizure like activity, we recently ruled seizures out.  Instead, his little jerks or startles that you’ll see are Myoclonic Jerks.  You can read my post about that here.

Eating can be another huge battle with children that have CP.  LJ was on a puree diet till June.  This was an up and down battle for us.  We had stages where we were literally force feeding him and stages where he did very well.  Despite being on a high calorie formula, along with mommy adding any extra calorie she could to his pureed food, he hardly gained weight.  He plateaued at 22lbs.  He never lost weight… until this year.  He’s always been a very healthy boy but this year was wrought with illness after illness.  These were never serious, but anytime he would get congested he would be unable to drink from his sippy cup and we would lose any progress we had made.  We ended up deciding to get him a G-tube.  Read more about that here.  And here.

Those are the major points of LJ’s disability.  There are a lot more minor things, some typical and some not.  I was hesitant to write this because I’m always saying LJ is not his diagnoses (or just a chart if you’re a doctor), but I realize many truly don’t understand just how much is going on with him, pretty much all of the time.  He’s such a sweet, amazing boy and he’s my little hero (excuse me LJ, I mean big hero).

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