Wednesday, November 18, 2009

Eye clinic and other updates

Today we went to the eye clinic at the Hospital For Sick Kids. Wysdom has been having several tests done to see if he will need eye surgery in the future or not. Today was our last test before we get our answers. The test that was done today is called a VEP or Visual Evoked Potential. It is essentially visual electrophysiology. What this really means is that they hook you up to a lot of electrodes and then let you watch a computer screen with a bunch of images on it. They record and analyze the data on how you respond to moving patterns that are shown.

Only one parent was allowed to go in so Julian went in with Wysdom, while Blyss and I hung out and tried not to get any germs:). The test went well in that Wysdom was calm and watched the screen which showed patterns and cartoons.He sits with Julian sometimes when he works on the computer so I was sure he would love this test and it would be easy for him. He was done in 20 minutes-yeah. The driving to and from the hospital was not a "yeah" for me as it took a total of about 3 and a half to 4 hours to get there and back. To say the least I am busted tired since I drove. I always drive as I think Julian can handle Wysdom better in the car if his reflux kicks in, which it did many times today. We are praying for good results from all of the eye tests and hoping for the best. To be honest right now I am so not into another surgery as I need some time to recharge my batteries so to speak. Anyways hoping for good results. THINK POSITIVE, GOOD THOUGHTS, THINK POSITIVE..... You get the picture.

As far as the g tube and the reflux goes we still have some issues. The g tube is healing a lot better than before. The reflux on the other hand is still pretty violent and constant. It doesn't help now that he has a cold with lots of mucus. We are using reflux meds that speed up his metabolism and help with the acid. A big culprit I believe is gas and constipation. So I am researching natural things that can be done and am considering going to a naturopath for some help. I do have a background in nutrition(almost, I haven't quite completed the program yet..but maybe one day). I will be looking at a combination of things like increasing fibre, using magnesium and some teas that have been recommended. Last night was another bad night, but not as bad as the weekend. Julian and I had a few hours sleep each and changed off like shift workers. Wysdom cried from the gas again and was in some severe pain however it only lasted for a short while and one dose of Tylenol helped.

Wysdom has already found a way to entertain himself with the g tube. This is and will be an issue. I can feel it. He was so used to the ng that he used to like holding it and playing with the feeding pump tube. It was almost like a comfort thing to him. I think he liked the feel in his hands(not his nose). Well for the last couple of days we have caught him playing with the end of the tube. He is creative in that he uses his hands and also his feet. He rubs his little feet together and catches the tube between his toes and pulls. The nurse has assured me that this g tube is supposed to be hard to pull out-so we are keeping our fingers crossed. He also likes to play with the tube at the actual insertion spot. So far he just holds onto it. What a little trouble maker:)... Oh how I love this little guy, he really is much fun and keeps us on our toes.

8 comments:

ABandCsMom said...

Hoping you get good news about the test on his eyes.

Carly had issues with constipation. Her doc had me up her fiber intake. I started placing her on the potty too. I thought she may be able to bear down and it may help her be able to go. Oh and I added Prune juice to her diet. Which she LOVED! I think the Prune juice really did help. Although I learned to NOT give her 4oz all at the same time...Holy Moly, she blew out her diaper if I did! I normally would give her about 2oz in the morning and maybe 2 oz in the evening.
It did help quiet a bit.

Lacey said...

You know whats so funny, Jax has the cognitive ability of a 2 month old. But he knows were that g-tube is. As soon as I undress him his hands go right for the button. I don't know if he just feels it. Heck, maybe it itches, who knows. Its so funny though.
And don't worry about being paranoid with Wysdom. He is still young, and you are still learning. I've had Jax for 4 years to figure all this stuff out. Plus I used to work at our childrens hospital. Your doing great!

ch said...

love to hear lc isn't alone in her toobie fetish...she loves 'em now...and, of course, her love has transferred to a variety of other toobie-ish wonders...stethoscopes...power cords...anything long and rubbery. What a hoot. She'll be the only one showing up at preschool with a four foot long security toobie.

Kelly said...

I hope you get great test results! Sending lots of positive thoughts your way! Wysdom you little ham!! lol:)

kangfamily said...

Sending you lots of good thoughts for the eye test results! Madi had some slight problems with constipation when she was younger. I have now been giving her ground flax seed in her cereal every morning and her constipation is not an issue at all. I don't know if it was the flax seed or if she just grew out of it. Not sure if this will help you but thought I would pass on what we tried. Good luck!

Kim Rees said...

First, let me tell you that you are doing fabulous Sasha! The g-tube is like an addiction for our little kiddos. Just like everyone else's posts Lily goes right for the button when undressing her. When I am actually feeding her I try to distract her with toys and sometimes it works and sometimes it doesn't. They just become obsessed! Like LC's mom said anything that remotely resembles a long tube shape they want. I have been finding Lily on the floor lately rolling into the corner to play with the stereo speaker wires that I thought were carefully hidden. It's just all a part of the whole process. On another note, I pray that all will go well with Wysdom's eye exam. God Bless ((hugs))!

Hector and Jennifer Varanini Sanchez said...

Yes! Good luck with the eye results and keep us posted. What a little devil he is playing with that G-Tube. I guess it does probably look like a fun toy attached to him :)!!! You are really doing a great job mama!!! Keep that smile on your face :)!

sara p said...

all i have are good, positive thoughts coming your way:)