We are still having issues with our Sarah. I just know it has to do with the shunt replacement surgery she had. Also she is loosing her hair and it looks like some hair was cut or something. I remember it being that way, but did not think a thing about it a few weeks back. I don't think anyone did it.... it just looks that way.

So I decided to start doing some research on the seizure med she is on the Onfi/Clobazam. There are a few places where hair loss is a side effect... but like other meds there are a laundry list of side effects too.

Also, I signed up for NeuroTalk.org and asked questions on some of the issues that comes with the after effects of surgery.

The are still having issues that replied was so incredible informing. Stating that they had many revisions, and here is a bit of what they said: "First thing I can address is the amount of time it's taking her to recover. There are many factors that go into a recovery time and it sounds like your daughter had a lot of those factors. For instance, the fact that (it sounds like) it takes a while for her malfunctions to be pinpointed. It's the curse of the slit ventricles, (i've got them too). The problem that it poses for recovery is that the longer your daughter was living with a shunt malfunction (headache, dizziness, blurry vision, balance issues)the longer it takes for all of those things to return to baseline. For example, I had sunset eyes and blurry vision for two days before a shunt surgery, and it took two months for my vision to return to normal. It was incredibly frustrating, and I only had that symptom for 2 days before it was corrected! 

Also they stressed that IS major surgery. Here is another part of what they stated. "Another thing you mentioned was that it sounds like she had incisions in her abdomen and head, indicating that they replaced the entire tube. This is in fact a pretty major surgery and recovery should be assessed separately from the short surgeries on the proximal catheter at the end. When new tubing is put in your body many times there is bruising along every spot that they had to jam the tubing through (sorry to be crude but that it literally how they have to move it around in the body sometimes). The small incisions that you see on the outside of your daughter's body, are no indication of what her body went through, and that's one of the hardest things to remember." 

As much as I need and have to hear this.... it still breaks my heart that she has to go thru ANY of this. 

Also they said as for the pains on her head and scalp... this is what they said... "my scalp and incision was EXTREMELY sensitive (and still is). The nurses told they thought it was because we have so many more nerves in our faces so the fact that the incision was so close to my face probably lit up a bunch more nerves. 

So now the question is... if in fact she is still having sensitivity issues with the incisions.... maybe when we do find an OT, we can figure out a sensory plan to help overcome this issue. 

Just wanted to post this while I had a moment of free time and to hopefully think this through and figure out where we go from here. 

Love, 
Vicki