N is well into his therapy now.  We go to the therapist twice a week and learn new exercises to work on.  It has actually been very interesting learning to see N from an outsider’s perspective.  I mean, we noticed that N had pointed toes and some trouble controlling his legs.  However, now that we have been in therapy, I have begun to see how limited his movement really is.  No doubt he has a very mild case of CP, and for that we are all blessed.  However, as we have tested him through the therapeutic exercises, I have seen how the CP affects his entire body.  Not only did he point his toes, but his hip flexors are very weak which has prevented him from learning to stand.  He is physically unable to stand straight up at this point.  He is also unable to fully straighten his arms, always having a bend in the elbow. Anything that requires reaching or stretching is very uncomfortable for him, and the slight shakiness in his hands is due to the CP rather than just “baby-ness” as I thought.  Furthermore, his entire left side is significantly weaker than his right, which really limits him the most, and causes the right to “follow” suit.  Since I majored in biology in college, I tend to find it fascinating how everything works together.  For example (warning, tmi!), since starting solids, he has always had pellet-like stools instead of normal mushy, messy ones.  Turns out that is due to muscular function (or, in the case of CP, a lack thereof).  In any case, for those of you who have been asking for more info about his treatment, I thought I would offer a bit of a pictorial to help you understand the descriptions we have been giving you. 

Even though N is 12.5 months old, he still "army crawls" or "creeps" for the most part. This is also due to the weak hip and leg muscles. Real crawling requires a great deal of stretch and muscle function, which he just doesn't have at this point. That being said, however, he IS learning very quickly, and currently uses a lot more leg pushing in his creeping. He also performs a real crawl several times a day now if the surface he is on does not require too much strain for him.

Our biggest focus at this point is his feet and legs.  As it turns out, we caught the issue in the nick of time.  Fact is, he would have eventually learned to walk on his own, however, he would have compensated for his weaknesses by standing on his tip-toes all the time.  Just 2 weeks ago, he was not physically capable of standing on his flat feet (see photo below).

On the rare occasion he would stand, it was always on his very tip toes. His calf muscles and hip flexors did not physically allow him to stand flat-footed.

 Imagine standing/walking in high heels or boots for a long period of time.  If you are used to walking flat-footed, your foot may begin to ache and desire to return to that position.  On the other hand, if you wear heels or boots regularly, then your foot will be trained to desire that elevated position when you are flat-footed.  So, we immediately started re-training his legs to “desire” heel pressure.  We have to do “heel pounds” on the floor.  In this case, he just sits on our lap and we bound his foot on the floor to make heel contact with the floor.  We also began all kinds of massaging the calf-muscles to help loosen them, rotating his ankles, and generally trying to stretch his foot into a flat-footed position.  We were having some trouble though, and the therapist really wanted to train his legs BEFORE he learned the bad habit of toe-walking, so she fitted him with elevated shoes to help with the training between therapy sessions.

First, she fitted some shoe inserts to his little foot, and attached risers to the heel at the lowest level he can stand on his own. (like the duct tape?)

Then we had to go buy some high-top shoes for him. (Do you have any idea how difficult it can be to find firm-soled high-tops for an infant?) The raised sole was then inserted into the shoe. The theory here is that if he can't get his heel to the floor, then we will bring the floor to his heel. Theoretically, as he begins to use his feet more, it will cause his heels to desire that contact, and prevent him from becoming comfortable with toe-walking.

N wearing his custom shoes. His heel is actually a good inch off the floor, but that is much better than the way he stood when bare-foot (see pic above). It allows that much needed pressure on his heel, and his foot is held at a smaller angle with less bend to his toes.

 The next step is to get him standing up and walking–actually using the shoes and his feet.  There are difficulties here, as well, though. 

N standing up. Notice how is little bum sticks out a bit, and he leans forward.

Because of his tight leg muscles, he cannot stand straight yet.  That is why is upper body is somewhat angled.  The flatter his feet get, the more this angle increases.  You should see the contortions I have get my body into when I work with him without his shoes on!  I have to use my hands to hold his heels down on the floor, keep his knees and legs straight, and use my knee to push his bum in, which, in turn forces his body into a more upright position.  It is getting easier, but I think I get as tired as him after these sessions. 

The final problem I was encountering was how to convince a baby to stand, stretch, and walk when it was so uncomfortable to do so that he would just cry.  We tried toys, we tried placing him into position, anything we could think of.  Any little successes tended to be short-lived, and he always wound up frustrated and crying.  Then I figured it out. 

Who can resist some homemade chocolate chip cookies?!  I was eating one today, and N seemed very interested.  So, I placed a few bites onto the trunk and encouraged him to stand.  At first he resisted, but eventually figured it out. 

Instant gratification isn't always a bad thing!

After he figured out that standing was rewarding, then I began putting a couple bites on the exersaucer behind him.  With me simply holding his hand, he had to use his feet to turn his body, and then walk 5-6 steps in order to get to the cookie pieces.  We did this several times, back and forth, until he had it all figured out.  Then we ran into the problem of how to get him back down to the floor in a controlled manner.  So I put a cookie piece between his legs, and supported his body, helping him get into a squat position.  He was then able to tumble backwards into a sit. 

Just writing all this wears me out as much as the therapy I think!  You can probably understand why I didn’t get pics of the rest, as I do only have 2 hands!

You have probably gathered by now that we are working on his entire body simultaneously.  We are teaching him to reach straight up for objects (he previously could not lift his upper arm above shoulder level), extend his elbow as much as possible, use his hips, perform controlled and intentional movements with his arms, hands, legs, and feet rather than just flopping them into position.  The hardest part is definitely coming up with creative ways to make the sessions fun and interesting for him. 

We are going to try the shoes for a few days, but the therapist really feels that she will likely have to cast his ankels in the next couple of weeks.  This will involve a plaster cast being put on up to mid-calf, which will force his feet into a flat position (ankle at about 90 degrees).  The casts will be left on for 2 weeks, with the idea of getting those leg muscles stretched out, and then he will be moved into leg braces for a little while to help the feet stay in the proper position.  We’ll see.  It is all so touch and go right now.  I am just thankful we started early to prevent more problems later.

 Whew, so there you have it.  I can only hope all that makes sense!

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