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

Lately and ever so slowly escalating, Sarah's desire to "want to take a bite" of ANYTHING, whether it be her sippy cup with water, a spoonful of food or even teeth brushing, has become quite a regression. She was doing so amazing before her shunt surgery. So many things seemed to have changed in the last 3 months.

Bath time is literally a nightmare for her. She will scream and cry, but yet still step in the tub. She wont sit down and will cry as if she knows something painful is about to happen. Last bath on Saturday, she did just that and then hugged me for a very long time. Crying with full blown tears. I finally pulled her away and explained to her that she needed to be bathed and I promised it would be super fast. With the rinsing and washing of her hair, then the final rinse... she cried like it was excruciating. As soon as the final rinse was done, I expected her to fly out of the tub. On the contrary... she decided to sit down and fill the tub with water and played for the next 30 minutes. Happy as a clam.

Some may think that this is behavior and some will just excuse it as so and want to move on. I, however, her mom, the person that knows her best, I refuse to excuse it and just brush it off so fast  and will explore every avenue until I have some kind of an answer. With her being non verbal, I would die if she was going thru some kind of pain and did not try to find out what it is and I would be a terrible mom if I did not investigate it the best I can.

She is exhibiting this kind of behavior at school as well. Crying real tears. Crying is not a part of her pattern.Yes, if she does not want to do something... she will get mad and fight it... but NEVER cry like she has.  She is extremely stubborn and would throw a temper tantrum that to cry like she has been.

Here is a before video of Sarah cooperating during a feeding session and there is one a few months after. Mind you we have tried to work with her in the middle of these sessions. She was in the hospital back in June for an emergency shunt replacement surgery because it had become so clogged. Then stayed the next 7 days because she had a virus. This was a HUGE set back for her.

Now here is a video of her having an absolute melt down. We, her parents, do all we can to work with her every day. Even keeping her sippy cup out and allowing her to want it. We present it to her as often as possible, but we are at a loss. Not sure why she is so upset like she is.

Just wanted to post this as soon as I could just in case ANYONE would be able to tell me what they see that I am not seeing.

Victoria