What makes it hard...

As I type this, Jimmy is on the phone with the specialty pharmacy that will send us the eye drops that Landon will begin taking. My guess is that we will start putting the eye drops in his eyes within the next week. It's real now. It's going to happen. It's not a thing of the future. Landon's nephrologist said that we can try and if it's a disaster then we let it go for a while and try again. I feel like this is just another thing that he has to do. It's just not an option. I am anxious about giving him the drops, but have been assured by many parents in the Cystinosis community that this is the least of the worries. I have to remind myself that I underestimate Landon, I always do. I am realizing that as he gets older, in many ways this all gets easier but in some ways much harder. Taking his medicine is just part of his routine. Once in a while he tells me "No" when I tell him that it's time for meds but its usually because I am interrupting his fun. He has been complaining that his belly is sore (the site where the G tube is placed). I have had several doctors look at it and they all say that it looks good. But sometimes it gets pulled or I think he sleeps on it and wakes up with it being sore from the way he was positioned. He has been complaining more lately so I changed it tonight (I will get back to this)... Anyway, he told me yesterday that "it hurted" and asked me to take it out. I told him that when he is bigger and can take put his medicine in his mouth, that we can take it out. It made me really sad though... So, as I said, tonight I decided to change his Mic Key button. He knows what to expect now and my sweet boy tries really hard to be brave. He told me that he wants to do it. He laid on the ground with a syringe in hand and put it exactly where he needed to. I let him help me use the syringe to pull the water out that fills up the balloon inside his belly (to hold it in place). He was okay with that. Then I pulled the Mic Key button out of his belly. He let out a cry. I tried to quickly place the new one in but that's easier said than done. I made a funny face and told him to hold his breath and puff out his cheeks. He laughed but that quickly turned to a panic and crying. We hugged and he cried for another minute and told me that it hurts, then he wiped the tears away and started watching television. He understands more and wants to participate in his care. This is a good thing.. He is more verbal now so can communicate what he is feeling.. also good.. He is learning coping skills. What makes it hard is hearing him say that he wants something to go away when I can't take it away.

The Threes!

I have mentioned this several times before but it runs through my mind often. Right before we left the hospital, Landon's nephrologist gave us the advice to not treat Landon as if he is a sick child because a sick child he will be. I think we have done a pretty good job of this although I have to admit that I hesitate about parenting decisions at times because I worry about how it relates to Cystinosis and how he feels or what he has gone through... But I also may hesitate simply because I am a mom and it's hard to put my foot down at times or know how to handle certain situations. Yes, maybe it's that and nothing to do with Cystinosis. Our evening today was a perfect representation of how one could struggle a bit in having a child with special needs. It's no secret that we have struggled with feeding issues with Landon for some time now. Basically since he was 7 months old and stopped drinking the amount of formula that he needed to grow and thrive. He stopped eating anything at all and relied on the feeding tube for quite some time, then he pocketed food and now, hallelujah!, he is eating. Lunch at our house is pretty flexible. I give him a couple of choices and he tells me what he wants to eat. Today he had Mac n Cheese and ate an entire container (270 calories!)... For dinner I try to make things that I know he will like and won't have problems with eating. We want him to know that he is expected to eat what is served for dinner but I keep it Landon friendly too. We are also sure to only put an amount on his plate that isn't very much to expect him to finish. Today, I made a pasta dish and put 7-8 penne noodles on his plate. He took a bite and told us that he was done and that he wanted "strawsherries" (strawberries). We told him that he could have strawberries after he finished what was on his plate. Let the fit began, and it did... By the way, the child would eat strawberries all day every day. Too bad they aren't packed with calories! Then he asked for Mac n Cheese. We told him no, that he could eat his dinner and then have strawberries (fit continues).. He did eventually eat the rest of his noodles and had his strawberries. Part of me just wanted to give him Mac n Cheese because he would have gotten a heck of a lot more calories out of that than the few noodles he had for dinner today but it's not the lesson that we want to teach him. If it means that we can't cut back on his formula as soon, then so be it. Some may not agree, particularly those who know the complexity of feeding issues, but I know Landon and he is asserting himself right now. In many areas of his life, we are trying to enforce that he needs to follow our rules and that he doesn't not rule the roost. That leads me to bedtime. Landon has been an awesome sleeper for a while now... I had friends over one evening and I put Landon to bed as they were there. They commented how they cannot believe that he went right in and to bed. We've had the same routine since he was a year or so and it works for everyone. He wouldn't get out of bed unless he was given permission. It was wonderful. Then those weeks prior to him turning 3 years old happened and that all went away! In his defense, a baby brother probably hasn't helped the situation. My mom friends are probably so tired of me asking for more suggestions and feedback. Anyway, tonight began as most nights have- we read books, we say goodnight with hugs and kisses, and the "Mommy!!!!!!" starts... I go in and give him an extra hug and kiss. "Daddy!!!!" Jimmy does the same.. He comes out of his room- given a warning and put back to bed, comes back out. I close his door all of the way because he was told if he comes out of his room again, that's what I will do. He screams hysterically because the door is shut (I expected this).. He starts coughing and throws up the formula I gave him before bed and strawberries.. Nice.. I worry all the time when he gets worked up. It's not hard for him to throw up and then not only do I have to clean it up, but there goes the calories...We just can't let that fear prevent us from letting things happen and him learning lessons. Luckily he didn't throw up on himself so I told him to get back in bed, cleaned up and reminded him what the consequence would be if he got out of bed again. He did not... Thankfully because my favorite show and bed were calling my name tonight!