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!
Showing posts with label constipation.. Show all posts
Showing posts with label constipation.. Show all posts
Wednesday, December 9, 2009
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.
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.
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