The Answer

Lara's appointment last week with the developmental Pediatrician felt like a whirlwind of information, a lot of which we already knew or expected.

Okay, so here it is.

Lara most likely has spastic diplegia (interpretation: tight muscles in lower extremities). Spastic diplegia is a form of cerebral palsy. Yes, we have known since about September that this was a probability. Cerebral palsy is brain damage that occured during pregnancy, during L & D, or right after birth. This brain damage affects the movement of muscles, causing them to either be too tight (hypertonia) or "floppy" (hypotonia). The muscles themselves are fine; the problem lies in the messages to the muscles from the brain. That's the main thing; CP can cause a host of other problems, but we haven't experienced any of the others.

Lara's CP is very mild, the doctor informed us.

Cognitively, Lara is right on target and there is no worry there at all, she's doing very well. As such, the dr. said there is no reason at all to have her do developmental therapy because Lara doesn't need it (we already suspected this). It's still up in the air as to whether Lara needs to continue occupational therapy. The doctor doesn't think she does, but we would like to see more ease of motion in her left arm. But as I said in a previous post, she has great control and fine motor skills in that arm, so we aren't exactly sure what's going on. This was really nice: to be told we could get rid of some of the therapy! Physical therapy will be continued 2x/month.

Basically, because of the hypertonia in Lara's legs, she has a hard time with standing without support and walking unassisted. However, this will not prevent her from walking. It will just take her longer to accomplish this, but she'll certainly get it. Lara's physical therapist told me that she expects Lara to walk sooner than is what is typical of babies with spastic diplegia, actually, because she is progressing so quickly through her challenges. It would be fine if she doesn't, also, but it's nice to have an idea of a time range that doesn't consist of "sometime in the next 6 years." We're talking, probably, in a year.

But the diagnosis is not definite; it could be another type of CP (though I think the outcomes will still be the same) or another type of disorder all together (highly unlikely, the dr. said). It is an interesting case, because the signs of CP that Lara is showing are characteristic of premature babies. But Lara was born at exactly 40 weeks (no induction). Therefore, the speculation from the doctor is that "something" happened at that 27 week mark when I was in the hospital for 2 days for possible pre-term labor, effecting the part of the brain that develops between 28-30 weeks. We may never know, and that's okay. Because of this, we will be doing an MRI to officially confirm the diagnosis. The doctor knows exactly what he should be seeing on the scan, so if it something different, then we will have to go back to the drawing board to figure out what is going on.

I want to mention here that Lara will NOT get worse. The doctor said it is really normal if she has phases in which her muscles actually get tighter; he explained that because of her age, sometimes it will get worse in order for it to get better (when trying to reach a new milestone). But her muscles will loosen up soon enough once she figures out a new motor development.

Some people may wonder where we go from here...basically, with therapy and with daily exercises, there's nothing else we need to actually DO. Lara says several words, eats wonderfully, crawls everywhere, brushes her teeth, reads books, and loves to hug the kitties. It doesn't mean she needs to be held differently or talked to differently (her communication is fine). She is still Lara! And please don't say "poor baby" or "well, she's cute anyway" or "it makes me realize how lucky I am that my child doesn't have any issues." Also, please don't feel that it is your responsibility to inform me when you think Lara is struggling in a certain area-I KNOW. Need I say more?
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Many have voiced their surprise since Lara doesn't "look" like she has CP. CP differs in levels of severity between children. Some children experience very severe effects of CP, while it's also very true that you passed someone in the store or at work today who has it and you would never know. Some people do not learn they have it until they are into their adult years!

I delight in my daughter. I love being a mom, and Lara and I have a lot of fun playing together and enjoying life everyday. Our goal is to be positive about this and proactive in helping Lara deal with the hard work that is before her. In general, we are really happy. We are holding on to God's promises and we are in a really good place. How can we not be?

Again, just want to reiterate that this diagnosis could change after the MRI, but it's not likely. The MRI will be on the 16th, and I am obviously nervous about it. I know that she will be fine, but we have not even had to TAKE Lara to the hospital for any reason, much less to do something like this. Our most severe problem in 14 months has been one fever of 103-and now we jump to doing an MRI. But I know it'll be okay. It needs to be done. So prayers please for this date-comfort for Lara and...comfort for mamma.