What a day

Today was finally the day that the straw broke the camels back.  I have been watching Willow all month, and with Jon taking note of her 'symptoms' or her little quirks that make the day slightly off, and today I finally took that all and started the calls to the doctors.  What was that last straw you may wonder?  A nap at 9 am - you see Willow is trying hard to cut out naps, and really if I can get her to settle she will take one at 3 pm (and yes she still needs them, her temper stinks profusely if she doesn't get one), but today falling asleep at 9 am after being awake for only 2 hours was enough for me to say time to make the phone calls.

So I started with her opthalmologist, Dr. Geddie; mainly because the lazy eye has gotten significantly worse over the month, and I know that they can look at the optic nerve and see if there is pressure behind the eyes so I felt that was a good place to start.  I have to say that today I was very impressed with how quickly they reacted.  Dr. Geddie's nurse listened closely to my list of concerns, chatted with Dr. Geddie and within 10 minutes returned my call and actually had me come in right then!  So we made it there quickly, and was put right into a room, where they did their work up on her.  I was right, the eye does indeed turn inward much more now than in the past, but there are no signs of damage to the optic nerve, or pressure on the eye either. It actually appears that the muscle has just grown weaker and so we are putting her back into her glasses to see if we can help to correct that eye again.

While in the office there, neuro called me back and told me to come down once done with our ophthalmologist visit.  So from the 5th floor to the 3rd floor we went after 2 hours in the eye appt. Once down in neuro this nurse who has NEVER seen Willow walks in and said after viewing her for literally 5 seconds, well I can tell you by just looking at her she is not in shunt failure.  Um, I am so sorry but do YOU know my daughter's story?  My daughter will smile and giggle while being wheeled into the OR room the last time Dr. Foody had to operate on her.  I am sorry but just looking at her doesn't tell you the whole picture.. UGH!  So, she did her neuro eval on Willow, and said that it still didn't appear to be shunt related.  Basically she dismissed the balance issues (she had her tube removed recently), dismissed the seizures (no explanation as to why), dismissed the headaches (as weather related only), dismissed the lazy eye (per Dr. Geddie it is muscle related) and that all of this together does not mean shunt issue... The MRI in February was good, stable and no change so just go ahead and watch her some more and if something serious happens to bring her in.... Um, what would be serious if seizures are not? What about the balance issues, the increase in headache... Ugh, I feel so defeated for my Willow.

But, 3 naps later (yes today was a 3 nap day apparently), but I just need to watch her... she is laying in bed and not falling asleep LOL  So Care Bears it is to fall asleep with.  Hopefully tomorrow is a better day.


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