11/07 1ere semaine/ 1st week

Decoree aux couleurs des "Thunderbirds", la patrouille aerobatique de l'armee de l'air Americaine, Florence s'est vu munir d'un casque special dont nous avions mentionnes quelques semaines auparavant. Le but du jeu est d'elimine ainsi un applatissement du crane. C'est assez leger, ce qui fait qu'elle le supporte assez bien, et c'est tant mieux, car elle va dorenavant porter ce casque H24, et ce pour les 4 prochains mois environ.

Above is Florence, in her therapeutic helmet, the purpose of which is to control the direction of growth of her skull in order to put it into better symmetry. (we decorated it with the Air Force Thunderbirds logo since we live right next to the home of the Thunderbirds - Luke Air Force Base and because it's about flying).

Essentially, it's like a football helmet. And since she has to wear it 23 hours a day, for up to four months, you can imagine how uncomfortable this would be.

Her first night was awful, crying the whole time. And who could blame her? Not just the discomfort of the pinching helmet, which restricts movement, etc, but also the fact that she's burning up in the thing - sweating like the proverbial pig. Literally, sweat is beading down her face nonstop. So, to help her adjustment we lower the temp in the house so cold that we're wearing knit caps and scarves. Poor girl.

First night finally ends. Who says there's no mercy in this world. The helmet doesn't quite fit right yet (they make weekly adjustments) so she has pinching in different areas and it pushes her left eye closed all the time. Not good. This will interfere with her development. Must get that fixed!

Second night. She sleeps much better. I don't sleep at all. She is so miserable to find a comfortable way to sleep (the helmet thickness makes her head unable to rest in alignment with her sleeping body, so she can't get comfortable). So, she takes to sleeping on her face - literally. I test to see if her nose and mouth have air flow. Her mouth is closed and her nose seems pinched off. Egad!

So, I stay up, all night, again literally (its the new word of the hour, its the new wherein!) setting my clock alarm at three minute intervals to check on her (because supposedly after that without air is when permanent brain damage will ensue), attempt to turn her back to her back, attempt to turn her face so she can get air. But everytime I turn her she reverts back to sleeping on her face (the clinician told me this is common when babies get the helmet because the front is the least thick part of the helmet and, thus, the babies are somewhat less miserable laying on their face). Well, maybe they are less miserable but I am beyond miserable.

So, hour one, hour two, hour three, hour four, etc. etc. all the way until five AM I get up to check on her, refusing to let her suffocate for such a silly thing. Do I take the helmet off? Do we forgoe treatment? After all, who needs a lower jaw which aligns with an upper jaw? Eventually, I take her in my arms and set her to sleep on my lap, where she is more comfortable due to the lap pillow being so squishy. There she stays until morning.

Ah, what to do? The clinician says its no big deal for her to sleep on her face. Of course, this is not her baby. Not even sure she has kids at all. But I do not know if her sense of suffocation is intact enough to wake her up. So, for now I will continue to get up or keep her on my lap. I see a physician tomorrow to discuss this. After all, babies die of SIDS while sleeping on their stomach. And I'll be damned if Florence is one of them.

No Kobayashi Maru in this house, by God.

But, oh, am I so tired. Sigh.