One very common trend in the lives of special needs families is therapy, therapy, therapy, and more therapy.  Pretty much the day after Madeline was diagnosed, the groundwork was being laid to get her into as many therapy sessions as possible–physical, speech, occupational, feeding, early education, etc.  There are times when I resent the strain (financially, timewise, stress-wise) on our family.  I never resent Madeline or her specialness, but I get exhausted sometimes with all of my added responsibilities.  I accept Madeline and the beautiful gift that she is, but that doesn’t mean that I have to accept or like her condition.  In fact, I abhor the fact that lissencephaly exists and that all of the families and kiddos I have met along the way have to know the ins and outs of this crummy condition.  It sucks.  I truly believe therapy has helped Goo baby progress.  The therapists work with her weekly and then in our spare time, usually when Mads is playing on the floor, we work with her some more.  Madeline’s brain does not allow her to do the simplest of movements that come so naturally to other kids.  She has to learn from muscle memory.  Even then, her balance is always a little off kilter.  Madeline has been working on crawling for months now.  She is so very close.  The problem is that crawling requires both hemispheres of her brain to communicate with each other.  This is quite difficult given her banding and brain malformation.  

Here is a recent video of the Mads.

I don’t know if you can tell in the video or not, but Madeline keeps her hips pretty wideset when on her knees.  This is not a good thing as it does not help her engage all of the muscles she needs to strengthen her core and legs.  Typically, when working with her on the floor and in therapy, we get behind her and hold her knees together for her.  But, she is still having difficulty keeping them together on her own (weak hip flexors).

Just recently, her therapists decided to recommend “hip helpers.”  Little biker shorts for babies to help them with their hip flexors.  The middle of the shorts is tighter than normal and connects the legs with a thick band of fabric, which does not allow the hips to spread out.

Here is a video of a little girl showing them off.

You just slip them on right over the clothing and they keep the kiddo from “bullfrogging” their legs.  This is actually a pretty common phenomenon with the liss kids.

Feeding therapy has also been going quite well.  She is eating a more diverse array of foods.  She always, always, always expresses an interest in whatever we are eating.  Her therapists recommended just letting her have it.  Eating is also a social activity for babies.  Now, we put M in her highchair whenever we have dinner and let her partake in our food.  Just last night, she ate half of my pizza!  She definitely loves more savory flavors (last night’s pizza was garlic based).  We add curry powder, cumin, and cinnamon to her pureed baby foods just so she will eat them.  

She loved that Oreo!

She literally ripped this piece of pizza out of my hands and shoved in it in her mouth.

She has also been doing much better with a sippy cup and holding her own bottle.

At the end of every therapy session, I experience such an overwhelming sense of pride and admiration for my darling M.  She works her bootay off!

Though Madeline is still very much behind her peers, she is making progress on an exponential scale.  This is Madeline’s most recent evaluation.  It represents two Bayley tests performed 5 months apart.  The last little dotted line is the 5th percentile.  She is clearly below it.  Yet, her teacher wants us to focus on the sharpness of her trajectory.  It’s almost a vertical leap!  It’s also certainly sharper than the “typical” trajectory.

I think what I take away most from this graph is how amazing little M is.  All of that strength and resilience bottled up in one adorably cute package.