Sitting Woes

Cayman has always been a very happy baby. The only times we have heard her cry was when she was hungry, and even then it was just a crabby whimper.

But over the last couple weeks we have watched our easy going girl go from happy to upset, and now devastation. This past week at her therapy appointment, Cayman cried the worst I have ever seen her cry. Actual real tears for the first time.Going on about a month now, Cayman has been physically resisting us when we put her in a sitting or crawl position. She is more cooperative if she sits in her BeBe Pod but even then it's not long until she is fussing again. It's very unlike her to be so unhappy.

For Cayman's birthday, her Great Aunt Linda and Uncle Martin got her this mirror. She went nuts over it, grabbing at it, staring at it, leaning forward to touch it with mouth wide open in wonder {just as you see in the picture}. But not anymore. If we sit her in front of it she would soon fuss just like she does at physical therapy.

Do you remember back in January how Cayman was sitting unsupported? It was never more than a few seconds at a time but still, she had proven herself to have the strength. It was more of learning how to balance herself was the issue.

About a month ago, Cayman stopped trying. Every time I put her in a sitting position she would fuss and crab, and push against my hands, trying to lay back down. She would get so upset that I just did not have the heart to keep pushing her so I backed off. I left her therapist do the "dirty" work every week. I worked with Cayman some at home, but precious little. She would just get so upset and I did not want emotional harm to come from the therapy exercises than the good we hoped for.

So every week, for the past month, much of our hourly therapy sessions have consisted of trying to figure out why Cayman is so upset. Her physical therapist, Jodi, has continuously checked her spine, muscle flexibility, hip placement, etc. It all seems just fine.

We began to put events together.

Soon after she got her helmet is when I think this all started. It was never consistent though. Sometimes she was very cooperative and happy. Overall, I think she has adapted well to the helmet. She sleeps in it just fine, it has never caused her to be up at night or be fussy during the day, just only when she is sitting or put in a crawling position, so why would we ever think it was the helmet that could be causing this. Besides, the Orthotic clinician said a child usually gets so acquainted with it that they forget they are even wearing it.

Cayman has needed to return to the clinic twice within the first month of wearing the helmet to get it retightened. We had hoped the loosening of the helmet was because it was already beginning to produce results in her head shape, but it's not. It keeps coming loose for two reasons:

1. Her shunt is slowly draining the fluid from her head faster than her body is making it. It's so slow though (0 .5 cm over a 3 month period) that the Neurosurgeon wants to leave it at its present valve setting since the shunt is functioning properly. With the many shunt revisions Cayman has needed in the past, her Neurosurgeon likes to be extra cautious and not mess with it if nothing is wrong. However, this may lower the effectiveness of the helmet in reshaping Cayman's head. But the health of her shunt most certainly takes precedence over any cosmetic changes. So Cayman's head is slowly shrinking still, which does explains why we are seeing some head reshaping but it's not from the helmet.
2. Cayman's head shape makes it terribly difficult to anchor the helmet onto her head so it's effective. Below is my attempt of drawing you a picture to help explain what I mean by this.
   The black outline is the shape of Cayman's head looking from above down onto the top of her head. The pink outline is the way her helmet fits around her head. The two arrows show the points where the helmet fits the tightest. The idea of the helmet is it places pressure at those points that stick out the furtherest, inhibiting them from growing, while the lower areas that are not under the helmet pressure can grow to meet up with the higher points. So in Cayman's unusual shape, her highest points are located on the the same side and that is why it is very difficult to anchor the helmet easily than if it was working with two points diagonal from each other. To compensate for that, the clinician had to tighten her helmet so it fits as snug as possible over those two points {arrows} but still without causing irritation.

When we took Cayman to her routine appointment {every 4 months} with the Naturopath this past Monday, the body scan revealed she is having headaches. The exact cause could not be identified. It could be from the helmet, or teething, or the sinus junk she gets while teething. Either way, we learned something valuable that has helped us understand why Cayman might be so upset.

She still rolls around, all over, and most of the time is happy while doing that. So I thought about that for a minute. I guess when we have headaches we are most comfortable being able to lay our head down, so that makes sense why she would not want to sit up.

At her birthday party when she sat in front of the mirror and played so happily, she was not wearing her helmet.So yesterday evening, Mike and I decided to take her helmet off for awhile and see what would happen.

Have a look.

Getting into position.

Ok, she's not crying yet. In fact, is that a little smile?

She sees her toy and reaches for it. I can't believe she's not resisting.

Look at the big girl!! Contrary to the depth perception in the picture, she is sitting all by herself, not leaning up against my leg.

Still sitting.

Still sitting.

Still sitting.

Still sitting.

Still sitting.

She's starting to fall over...

And she's down!

For about 6 seconds Cayman sat completely by herself!! She didn't cry, she didn't resist. She was happy and content...her usual self.

That sure does make us feel 99.9% sure the helmet is the cause to her sadness.

So what is the solution?

We don't know for sure yet. We're brainstorming all the options to find the best one.

In the mean time we are giving Cayman extra long breaks from her helmet and Mommy is soaking up every minute of cuddling her baby's head.