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A Few Updates:

Posted Sep 18 2008 12:00am

11.5 months old

The call finally came. And it was the doctor himself, not a nurse passing on information. That was a good decision on their part. Finally some real communication.

We began the conversation by discussing my disapproval of how things have happened over the past month. He agreed that this must never happen again. I have his word that "this event will lead to something on [his] part" and that he will "make it [his] mission". And yes, those are exact quotes (I was taking notes). So hopefully no one else will have to go through the frustration that I faced. If some good can come of this, than I suppose it was worth it.

Now for the results:

The coronal, and sagittal sutures are not closed as they previously thought. This is a good thing. However, the metopic suture is sealed (but that is not completely uncommon for a baby her age). He also reported regression of the frontal skull bones and that the right half of her brain is significantly larger than the left.

What does all this mean? It means that nothing has to be done immediately. Even though her skull has not grown since birth, her brain is not under any pressure. They will repeat the CT scan in 4 months. If there has been brain growth but not skull growth (meaning that her brain would be getting a little cramped in there) they will operate. If there has been brain growth and skull growth....then we go out and celebrate!

The Ketogenic Diet:

Sadly, it appears that we will have to add this to our list of failed treatments. My post a few weeks back was a bit premature. She had a few good days and I jumped to the conclusion that the diet was working. I was sure it was going to work, absolutely sure. But alas, I don't think it was meant to be. Donald and I do believe that there has been a slight reduction in spasm frequency, but they still occur regularly.

We return to the neurologist in a few weeks to report back on her progress (or lack of). At that time I assume we will start discussing the next plan. I know that there is another medication that he wants to try, but Donald and I are hesitant to go with it. It has a 40% of reducing the spasms, but a 30% of making them worse. I don't like those odds. I am beginning to feel that there isn't a medication or treatment that will work. We face failure after failure. There is an epilepsy surgery, and I believe that it might be our best bet. I will start researching it today.

In other news:

We got the evaluation report back from the speech pathologist who came to our home several weeks ago. Elisabeth failed. Big time. For receptive language (how well she understands/responds) she is equivalent to a 2 month old. For expressive language (how well she communicates her wants/needs) she was equivalent to a newborn. She will be having a speech therapist come twice monthly to work with her.

This seems typical of what we are seeing developmentally from Elisabeth. She is somewhat stuck. At home she seems normal. But when we are out and about and observing other children her age it becomes apparent how far behind she is falling. Other 12 month old children are starting to walk, talk, explore, and feed themselves. They are leaving behind babyhood and entering the toddler years.

Sweet Elisabeth is just content. The calmest baby ever, with no ambition to learn of the world around her. Someday she will get there. I know that. Slowly but surely she will figure out that she can move, that she can talk, that she can eat. Someday.

But until that day comes I will hold her close. I will watch her sleeping soundly in her cradle. I will sing her lullaby's and take pictures of her cute little toes. I will enjoy folding pink onesies and take her on walks in her stroller. I will cherish having a baby. I will cherish the moments where she just wants to be cuddled close. After all...cuddly babies are my favorite kind.


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