Just another update on Logan. He is still doing very well with his transplant. We has started kindergarten this year and so far is doing really well. We did find out over the weekend that he is allergic to peanuts. He is coming up on his 4 year post transplant date. We are still having an issue with him maintaining and gaining weight and height. So he is on pediasure over night. I am currently trying to find out if there are any other kind of shakes I can give him to help with is weight issue.
September 03rd, 2013
I am sad to report that another HD child, Blake, has lost his battle with HD and earned his angel wings. The only thing I can say is that at least he is not in pain anymore and free of this horrible disease. My heart goes out to the family as well as our thoughts and prayers. I can just hope one day that HD will be in the public eye just as much as anything else. Please pass along information about Hirschsprung's Disease.
SO I thought I would try and write a blog on here once a week. Of course right now our family is very busy with what seems like a million things but hey I can try. I thought it would be nice to let you know what our son Logan has been doing. He is doing great. Ok, bye. No just kidding. He is down to every 6 weeks with his doctor(he used to go every two weeks). He is down to 12 hours of formula at 65ml per hour. He was at 20, went down to 17 and is now down to 12. He is up to stage 3 of baby food that has the little chunks in it and is doing great with it. I did try the little puffs that literally just melt in their mouth and he wasnt too sure at first but took three of them. I would say by the end of the year he should actually be eating!!! Which for us is a huge accomplishment. He still is not walking yet, although that is partly my fault as since we have been super busy I forget to put his leg on him and get him to start standing, but my goal is also by the end of the year to get him walking. Fingers crossed. As of June he will be going to Chicago Childrens Memorial Hospital.
I am still in the process of trying to make up merchandise for HD Awareness along with Organ donor awareness and Transplant awareness. Not quite sure where I am going to get the time and money for it but
Just wanted to start by updating everyone. Logan had come home the end of March after 6 months in the hospital because of a rejection to the transplant. He went back in about 2 weeks later. It was supposed to be a routine 24 hours stay for him that has turned ino a longer stay because of a blood stream ifection. We are hoping he can come home very soon though.
Also just want to say thank you to everyone who has looked at this site and is passing it on to take a look at this site. One of these days this disease will be in the public spotlight just like all of the others we hear about daily. I am currently in the process of creating some HD awareness stuff and once I have it done I will let you know so you can take a look.
Thank you again!!! It means the world to me to see people checking the site out and leaving me messages about their story or just to say thank you for creating the site.
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I am a stay at home mom of 3, one of whom was born with LSHD. I am just one person trying to get the word out there about this horrible disease.