Another HD mom that I connected with on Facebook did a blog for a week straight, documenting life with HD. She really inspired me to do more blogging about Mateo, not only to inform others and to spread awareness, but also it records what we are going through, and gives a "record" for us to look back at...
So, Mateo is continuing to do well. We still have not had any abdominal distension, dehydration, or any of the complications that used to be our "norm". And I am so grateful that we have avoided hospital stays going on 3 months now! I think it is a new record!
The only complication we have had, is a problem we have always had, and that is that we STILL have to change Mateo's bag at least every 24 hours. Even if the bag is not leaking, Mateo will come to me, rubbing or scratching at where his stoma is (through his clothes) and will tell me, "mama, tummy hurt." Or "empty bolsa"-spanish for bag. When I look at his bag, it is usually starting to lift up around his stoma, which means the stool is getting underneath his bag and sitting on his skin. If he is saying his tummy hurts, the stool is more than likely eating or breaking his skin down.
So from here, I don't have much of an option, but to change his bag. I cannot ignore him and leave him like that, for fear that it will cause greater harm to the skin around his stoma. I have yet to find a bag that I can leave on him for more than the 24 hours... The plus is that I have been doing less poopy laundry, since Mateo has learned the signs and the feeling-- he tells me when he needs to be changed before there is a mess. The only exception to that is in the middle of the night while he is sleeping.
I am trying several different products now, thanks to yet ANOTHER HD mom. Her name is Vanessa, and she is truly amazing. She read about our struggles on Facebook, and jumped to help! She mailed us 2 boxes of ostomy supplies. Pouches, closures, barriers, the works! I am sooo blessed to meet HD moms and to have support from others who have or are going through what we go through on a daily basis! I am beyond grateful to her for all of her help and advice!
I will continue to update as things progress and change. Thank you to those who keep up with us and follow Mateo's adventure. Please help us to spread HD awareness!