So much life – so little to say

Catching a few zzzz on my Christmas present from Santa

Catching a few zzzz on my Christmas present from Santa


I feel badly that I have not updated this in so long. Yet how do you update a blog to say the same things over and over again? How do you write things that make you feel so utterly broken inside?

The “good” news, Rebecca’s tumor only grew a very small amount. This means we are waiting until March to scan again. We know the tumor will have to come out at some point. We originally thought the tumor was 5mm. This was based on our first phone call with Dr. Grant. However since he didn’t have the film in front of him, with the actual measurements, it was sort of a rough measurement. To him, it was just “tiny”.
In December we were comparing that scan to the old one. So we had them to measure side by side. The tumor was about 8mm when it was found. It was about 9mm in December. So about 1mm growth. This was considered good news, it means it is slow growing and not aggressive. Becca did not have to have surgery during the holidays. yeah – that is all old news. Now we just wait for March. Dr. Grant did say that it will have to come out eventually.

On the same token we continue to see an increase in seizures. I was able to get Becca into Neurology last week. It wasn’t with her regular Neurologist, but it was someone in the department at least. We’ve increased some of her meds. We’ve also changed her rescue med. (For those who understand this gunk – we increased her Onfi, and changed her from Diastat to Clonazepam). I found that because of how she gets into “trouble” with seizure activity, Diastat was just too hard to give. She doesn’t usually have true status seizures. It is more like she has what I call a “clusterfuck” – she will have back-to-back (to back) seizure events. Often a vicious cycle of complex partials and clusters of head drops, and back and forth. Since she is still conscious through all of this, giving her a tiny pill that will dissolve in her mouth will be much easier than trying to give her a medication that is administered rectally.

We are also still seeing quite a bit of fatigue. Poor girl is just so sleepy. Now before all of my good-natured friends and family jump to the conclusion that it is her shunt, we do know when she is awake, she is her normal hyper self. She also displays no other signs of shunt failure. Yet we continue to see her take 3 hour plus naps on the weekend, or any other time she is given half a chance. This all greatly affects her school performance.

The good news is Rebecca continues to show how smart she is, even though it is causing me many more gray hairs. Rebecca loves to test her boundaries. There are a few things that are off limits. Reaching over the gate into the kitchen is one of them (whether she is reaching for the trash can, or something on the kitchen counter.) She usually gets a couple warnings “Rebecca, No”, “Rebecca stop touching the trash can” etc. She KNOWS. She will turn and see who is watching. These days she takes it a step further. Because she knows I will give her a smack on the butt for misbehaving (after having been warned to stop, more than once) she will now either sit down, or put her hand over her butt as soon as she sees me move towards her to punish her. So she not only knows she is doing wrongly, she knows the consequence! What a stinker!
And no – time out would not work, this is a child with limited mobility. limiting her to her chair would not be punishment. Rewards have no meaning, so that would never work. Re-direct works for about, ohh 2 seconds.

So that is our life in a nutshell.

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