Little Cades breathing has improved some depending on the time of day. He had a few desats over night, but was struggling with gas. Bearing down and breath holding doesnt help the cause ;) With Krabbe the muscle tone everywhere is effected including his GI tract, so pooping and passing gas are often an issue. Cade cannot coordinate the muscles to poop with ease and needs PEG (a laxative powder) almost daily to prevent constipation. Constipation is the enemy for him and perpetuates the cycle of painful spasms and general discomfort. Believe it or not, but having his mouth suctioned out is thankfully a pleasurable experience for Cade. I posted a video as proof. He will play with the suction catheter and opens willingly for me to clear out his mouth of all his excess secretions. If Cade requires a deep airway suction after aspirating/choking I always suction threading the tube thru his nose and down. I could easily go by mouth which is quicker, but Cades gag reflex is still surprisingly intact. I dont want him to associate anything negative thru his mouth again. We worked so hard to combat his oral aversion last year and conquered it!!! September is over and as you know September was leukodystrophy awareness month. To our family and close friends everyday is a day in which leukodystrophy makes an impact. Cade and I however, are still working hard at raising awareness!!!Today was a very special day for us, as we were interviewed by Shaw TV to do a segment on Krabbe disease to help raise awareness. Im not sure when it will air, but I will try to post a link as soon as its available! Remember to get your cake on for cakes for Krabbe! Its fun and easy for the whole family to take part and will help us spread our message!
Posted on: Wed, 01 Oct 2014 22:13:04 +0000
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