Back to School!

I have to admit that I was really looking forward to the fall. Landon is not yet a fan of swimming so we spent not one day at a pool this summer. Jordan is young so can't be out in the sun for very long and can't yet run around so it didn't feel like much of a summer this year. You can't beat this beautiful 65-70 degree weather in Pittsburgh right now so I am a happy camper. And, school has started.. I feel bad saying that I was excited for Landon to go back to school. It's not that I want to get rid of him or necessarily need a break from him, although this giving up nap thing has not made me the least bit happy. But, I like being in a routine and school helps us to do that. And I was a little less nervous this year considering Landon has the same teacher and is in the same class room with a couple of the same kids. I knew the transition this year would be MUCH easier than last year, and it was, by far! It was actually easier than I imagined. One the second day of school, I had the option of staying for the shortened class. My mother-in-law was watching Jordan so I was prepared to hang around. Landon walked in the class room with no reservations and was fine when I told him that I would stay at school but that I was not going to stay in his class room with him. It's almost as if the summer did not happen and he is back on track with going to school and is perfectly happy about it. This means the world to me, as his mommy who hates to see him feeling anxious and sad. In other news, we decided to take Landon off of Procysbi (the 12 hour drug) and put him back on Cystagon (6 hour drug). His cystine level came back at 1.2. Our goal is to have it under 1 and it was as low as 0.4. I know that it takes time for a person's body to adjust to a change in medication and I am certain that if we gave it more time that Landon's body would have adjusted, but it makes me feel physically ill to know that his cystine level and creatinine level went up and I just don't have the patience to wait for it to get better when I know that there is something else that was working. I have said this over and over again but will say it again. The better Landon is doing, the harder it is for me to deal with the hiccups that arise. This was a reminder to me that Landon's health will begin to decline at some point. His numbers won't look beautiful as he gets closer and closer to needing a transplant, whenever that day will be. I hope that he is well into adulthood by that point but there are no guarantees. I'm just not ready to go there right now so we had to go back to what was comfortable and familiar. There really is no reason why Procysbi shouldn't work for Landon and we probably just needed to tweak the dose a bit, but Cystagon was working so we will stick with that right now. I look forward to trying Procysbi again in the future, maybe sometime next spring or summer because I really want him to be on it by the time he is in school all day which will be kindergarten. And I have to tell you, within a day or so of switching back to Cystagon, Landon was acting like Landon again. He had been off for a month and a half and it finally seemed like he was feeling better again. And honestly, I really don't mind the 4 times a day dosing. It doesn't affect him yet. He doesn't wake up at 2am to take medicine, I wake up to put it through his G tube. It's a very small price to pay. If Landon was having the problems that so many who are on Cystagon do then I would have been more committed to it, but he hasn't had any problems with it in a long time. My excitement and motivation about Procysbi had to do with the thought of Landon feeling even better than he was and having an even better quality of life. Last but not least, the Third Annual Lots of Love for Landon Halloween Event will take place on November 2nd!! We are really excited!! The CRF has been kind enough to create a website for people to log onto to order tickets and make donations so as soon as that is ready, the Evite will go out and I will post the link on this blog. Contact me at LaurenLHartz@gmail.com for any questions or to be included on the Evite. We are looking for Chinese Auction and Door Prize items. And a new thing we plan to do this year is give businesses the opportunity to advertise at our event. For $200 a business can take part in sponsoring the event and will have a sign displayed at the party. If you are interested in helping with any of this, let me know!!!