Recovering and update...

So, surgery went well. It was apparently a bit more difficult then they would have liked, but they were still able to do the surgery laprascopically.

I am now officially gall-bladder free!! I was recovering well last week and felt good. I was up and moving, a very little bit, but making sure that I still moved. This weekend came and now I feel so run down.

I am falling asleep at the drop of a pin, and my muscles have never hurt so badly...my back, neck and shoulder. I am having a few dizzy spells and just a lot of head pressure.

I am wondering if this is normal after anasthetic. I thought that it should have run its course by now, but now am wondering if I should be worried...I go back for post op on May 4th, I think I should be fine to wait and see how I am doing then...

We had an appointment today at the out of town hospital for Faith. It was with the pediatric neurologist. We literally felt like we were floating home on clouds...yup, it was that good!!

To start with, it happened to be the same neurologist we had during the very first week. He was part of the team, the one who showed us the MRI pictures of Faith. He was shocked, seriously and so pleased with how she has progressed. He says they need to see these stories of kids who go farther then ever expected!

First we talked about her seizures. I think he said they were focal complex seizures (I think, I will double check when the report comes in). They are not brain damaging and are minor. Since she has had 2 or more seizures she has been diagnosed with epilepsy. We are going to hold off on medication until we feel it is necessary. The dr said that there is a possibility of the seizures getting bigger and worse, and that is when we will talk again.

Then I asked about the hydrocephalus. There is no hydrocephalus. Her ventricle is enlarged just because of the scarring on the brain. He explained it like sand and water in a bucket. When you take out some sand, the water has to fill in the hole. So, the scarring is eventually going to leave a hole in her brain and it is and will be filled in with cerebral fluid. When this happens it makes the ventricles look a little bit larger and it is normal. There will never need to be a shunt, or any surgery or concern about it...

Then we asked about development. I told him that I was concerned about her hands and how she wrings and washes them, chews them folds them backwards etc...and I mentioned a few other things, such as her lack of head growth, seizures, circulation etc...then I said that I had been helping my sister with her homework and was reading about developmental disorders and I was wondering if there was a possibility of...and he cut in and said Retts? I was happy that he said that, because it meant that I wasn't crazy finding that as a possible diagnosis for her. The symptoms are all there, but because the brain injury happened after the birth, it is just symptoms of that trauma. I was and still am thrilled.

I then asked about what the left frontal lobe controls, I want to know what to look for and how we can work with Faith now, to deter any long term problems from arising. So, that area encompasses the bahavioural center, the social center, some language and others that I am not sure of. I said that we were concerned with her anger, she is so strong and will take her 3 year old cousin down when she is angry...it can be scary to watch. We are starting to do some new discipline techniques with her now to teach her that it is wrong. I don't want to be working on this when she is 3 and 4 and 10 etc...whatever we can nip now, needs to be nipped:-) Socially she is funny. She loves anyone and everyone, pretty much. She will sit with strangers and enjoy their company. Her language is coming. She is also signing, and it is cool because we can actually "talk" to her without her screaming all the time. It seems to give her some sense of control too.

The last thing I asked about was her eyes. She has strabismus, and that is fine. We are waiting for surgery to be done. I wanted to know if it was worth the surgery if it was her brain injury that caused the problem. He basically said that the area that controls her eyes is in the middle area(?) of the temporal lobe(?) and that area was not injured at all. So, even though it may take 2-3 surgeries, her brain could pick up on the change and start controlling her eyes the right way. But, it also may not be able to be corrected, it really has nothing to do with the damage. Which is nice to know!

So, all in all, after 18 months of wondering and worrying and anxiety etc...on my part, we have a diagnosis of something that is livable, treatable and curable. I couldn't have asked for a better ending, for a better appointment, for a better outcome. We seriously floated home.

It almost seems like the fog is gone, and all the things that we were told in the beginning are gone. Like there is no more possibility of mental retardation (I hate that term), cerebral palsy, blindness, deafness...the only one, out of the five was epilepsy, and that is all...

We go on Thursday for her tubes and then back to the other hospital in May for her eye checkup and hopefully surgery soon after that. She is going to be good to go soon and there is definitely a light at the end of the road...

Still Floating:):):):):):):):):):):):):):):)