Sorry I have not been good about updating here. The good news is that I have been writing, just have been working on my book when I have the energy and brain power to write.
I realized recently that the insomnia that gave me the time and energy, even if false energy, to blog regularly has disappeared. That's right my head hits the pillow and I sleep soundly through the night. There are exceptions, like last night for example. I think my children were delirious. Somewhere around midnight Izabella stood next to me and stroked my hair and asked me if I would sing to her. It took me a while to realize this was not some crazy mom dream she really was in my room. I said no and her tears began welling up. Well, ask John I am such a softy, plus I am totally out of it when woken up. So I let her climb into bed with us. After about an hour or so, I got tired of having my neck at a weird angle so I told her to go to bed and she did. Shortly after she left I fell soundly asleep, only to be woken up again by Alina claiming to have a bad dream about a shark singing in her swim class. The shark singing is the part that freaked her out because that could never happen in real life. So she conned me out of some nighttime cuddles as well. John woke up in the morning surprised that there was a child in our bed, because he had clearly remembered me sending Izabella packing.
But except for nights like that I do sleep soundly. What I've realized is that my OB was right. I weaned Jasz from nursing in November and around February I started to feel normal again (whatever that means). I can say it means being able to fall asleep and stay that way, as well as no more night sweats, and my heart is normalized as well. Damn I had no idea how much havoc hormones could wreak upon our bodies!!
It also means I seem to be better equipped to deal with my children's woes. They are doing well. Alina and Jasz are on the gluten free diet and although I am not thrilled with the price tag, I am thrilled with some improvements I'm seeing.
Today Jasz had another neurology appointment, and of course she is thrilled with his progress. She pointed out to me how clear Jasz' face is. He has looked like he has Rosacia much of the time. But his face is getting smooth and the red bumps are waning. His little cheeks are no longer bright red. So someone else noticed the improvements too.
We talked about the results from the genetic testing, which appear to be inconclusive. It did show he has a genetic strand missing, but what that means we don't know. The population tested is fairly small and it shows up in 17% of them. Dr. carter explained that for example if they tested everyone in the world and 40% tested this same way, it would pretty much mean that it means nothing. Because 40% of the world do not exhibit Jasz' symptoms. However, micro deletions of this same strand (meaning smaller amounts missing) are linked to autism and epilepsy.
What does that mean for us? Well, she does not believe he has autism, nor does she believe he will develop it. I guess some children do not develop it until later on in childhood. But she believes that to be unlikely because he has such a huge vocabulary for his age and kids who eventually become autistic, do not have his level of vocabulary.
As far as epilepsy, we just have to watch for it. She said sometimes seizures are masked as anger. So she gave me somethings to watch for. It was actually kind of interesting. But it could be something we will see in the future...maybe not...who knows.
We also talked about the MRI. Although John and I need to further discuss it, it does not look likely. She feels given everything it is not unreasonable to order one and take a look. The risks are minimal. The biggest risk with the anesthesia is some kids are cranky for a day afterwards. I asked what is the likelihood we would find something useful. she told me that she is 95% certain we would see nothing on there. I asked about the other 5%, if she did see something if it would be something she could do anything about, and she thinks not likely. So my question is why? Now she pointed out that it's not like a biopsy that would cause him pain. John and I talked about it and have to weigh if just having the peace of mind of being certain there is nothing structurally wrong with him is worth it, or maybe given what Dr. Carter said, we can just assume that peace of mind right now.
So what does it all mean? Basically we have not much new information, but we do have a mommy who is sleeping better!!