Wednesday, December 9, 2009

Eye Clinic and G Tube Updates

Today we spent the day at the hospital. No emergency!! Just two appointments. We went to get our updates after all of Wysdom's eye tests. We still don't know if he will need surgery yet or not. That will be decided in a couple of months from what I understand. We are to patch Wysdom's left eye for one to two hours a day for the next couple of months. This is in hopes of strengthening his right eye which tends to turn inwards. Both of his eyes turn inwards but the right does it the most.

We found out that THANKFULLY the CAT SCAN was fine. The VEP that we had done a couple of weeks ago(where Wysdom got to watch TV with the electrodes on his head)was not okay and came back as abnormal(for lack of a better word).

So we will see if his eye can strengthen with the patch and some prayers and then go from there. He does have pendulum nystagmus which is an involuntary rhythmic shaking or wobbling of the eyes. There are over 40 types of nystagmus and it is associated with some vision loss. However there is little treatment for it. If he does require surgery it will for his eyes that are crossing not the nystamus. We are told that the surgery would be before he is two years old.

As for the G tube it looks great. Our surgeon also suggested some options for Wysdoms constipation. He suggested that we add in the use of Senna specifically SENAKOT or PEG. Anyone tried either of these with their little ones? I have heard of both before but would like to know if anyone has tried it.

We are off for an RSV shot in the morning and a trip to see an new PT and OT. Thursday a hearing test and Friday to Sick Kids to see the plastics department for his forehead. Wish us luck!


Kelly said...

Good luck with all of your appointments! Wysdom is a tough little guy, I'm sure all will go well. Lots of positive energy coming your way!

RK said...

You've got alot going on!!

I don't have input on Senna. We use Miralax for constipation for B and it has been great, not upsetting to her at all, but it helps her go regularly.

Hope all your appointments go well!

Beverly said...

glad all is going well and that you are feeling better

Lacey said...

I've heard people use senekot. We just use miralax and it works great. Give it a try and if it doesn't work, miralax is over the counter now.

Tina said...

Saira has the same kind of nystagmus as Wysdom does, but I must say it is much much better now compared to when she first got her glasses. It's therefore very importnat she keeps her glasses on all the time, not to mention that her vision loss is quite high. She right eye also tends to turn inwards sometimes, but is also getting a bit better as I'm seeing less often. I hope you manage to solve the constipation problem. What worked really well for Saira was avacado#s but then I don't know if Wysdom has started eating stuff like that as yet, or if he only gets formula through the tube. I'm sorry bit I'am totally ignorant when it comes to the G-tube and how it works.
Hope all the appointments go well and you're happy with your new OT and PT

Brandie said...

I've never used Senna,but I have heard that it works well and the "dose" can be adjusted by how long you brew the tea. Goldie's ped wasn't comfortable with using Miralax, so we tried Lactulose. I've only had to give it to her a handful of times, though.
As long as she gets her probiotics, fish oil, and enough fluids (thats the tough one for her) she goes everyday.