Surprises and Hiccups!

I haven't updated since July 15th. So, what's new since then? Potty training. Well, it went much better than I ever expected. He is wearing underpants with very few accidents while he is awake and still wears his diaper when he naps and at night. His diaper is so full when he wakes up. Night training is probably a long time away and I am not at all concerned about it. When his body is ready for it, he will do it. He's not so good at telling us when he has to pee yet although if his pants are off and his potty chair is in the living room, he is great about sitting and going when he has to. It's when his pants are on or the potty chair isn't convenient he has had a few accidents. I have to say that he has not had a single accident while we are out. We put him on the potty every 1 1/2 hours when we are out which I know helps but we went for a walk yesterday and it was over 2 hours before he went potty. Anyway, I am a proud, proud mama! In other news, Landon has started the 12 hour drug, Procysbi. He took his first dose on July 20th. Along with the new medicine, his nephrologist changed a few other doses so that we don't have to give any meds more than 3 times per day. He had 3 medications, including Cystagon, that he took 4 times per day. All in all it has been going well.. We've had a few hiccups and I am so thankful to Landon's nephrologist and some of my friends in the Cystinosis community for helping me to help Landon transition. The hiccup has been increase vomiting. Strange enough but I did not anticipate this. I've always been prepared that when we change doses and add more medication that there is a possibility that he will throw up and we need to work through it. But I didn't prepare myself this time around. I've said it before and I know it to be very true but the better Landon is doing, the harder it is for me to accept the hiccups. The few times this past winter that he got a cold, I really struggled to not get to worked up about it. Is a cold a big deal? Not for the most part, but it means I have to cut back on the amount of formula he gets and his weight gain slows down. Anyway, I have done a bit of experimentation and have written a new schedule and posted it several times. I do not feel that the hiccups are because of the new medication, but I think that there have been a number of changes and I have to experiment and figure out what it is that his body is reacting to. I'm not sure if I explained anything about Procysbi and how it works so I will do that now, to the best of my ability. The difference in Procysbi, as compared to Cystagon, is that Procysbi is released into the intestine rather than the stomach. For those how have a lot of GI issues, this is wonderful because they don't get sick as a result of taking it. When Landon was first diagnosed, he threw up everything that went into his stomach because he had delayed gastric emptying. At the hospital, doctors put a NJ tube in before a G tube which means that all of the fluids, med etc went to his jejunum and intestine and bypassed his stomach. Administering the drug is a little interesting.. Landon gets the drug at 5am and 5pm. I chose these times because he cannot eat 2 hours before and 30 minutes after taking Procysbi. I pull 50mL of applesauce and empty it into a bowl, leaving 10mL in the syringe. I then empty the contents (which remind me of sprinkles) into the bowl with the applesauce and mix it up. I collect that applesauce in the syringe with the leftover 10mL of applesauce into the syringe. Then I collect 30mL of orange juice into another syringe and put some of it in the bowl that has some leftover applesauce and beads from the Procysbi. The orange juice helps to collect the remaining beads. I then push the syringe with the applesauce into the extender of his G tube and orange juice and flush it with water. So that's what's new with us. It's busy but we are getting adjusted to a new routine and I'm enjoying the longer period of sleep. My plan was to stay awake at 5am and work out and get things done before the boys wake up. That happened one day. Oh well.. I'm still working out and still getting what I need to done. =) Oh, and last but not least. We are starting to move on plans for the 3rd Annual Lots of Love for Landon fundraiser. It will be held on November 2nd at the Home Economics Building in South Park (same as the last 2 years). If you want included on the guest list, want to donate a Chinese Auction item or door prize item send me an e-mail at LaurenLHartz@gmail.com.