Thursday, July 11, 2013

He's getting older..

How do I know that Landon is getting older? 1. He's bigger! This may sound silly but you all know how much our poor boy has struggled to gain weight and grow taller. Landon is still getting weekly feeding therapy, with speech therapy added to the sessions now. But, once a month, his session includes meeting with a nutritionist who weighs him and then she reviews a food log that I keep and makes recommendations. She came to get me in the waiting room this week and first asked me what I am feeding Jordan (my sweet almost 6 month old weighed what his brother weighed at 1 year old when he was 3 months old) and then asked me what I am feeding Landon. He gained 2 pounds and is 3/4 inches taller in one month! She was thrilled with his food intake, although he still rarely eats breakfast. She isn't ready to cut back on the amount of toddler formula he gets quite yet. To be honest, I'm not either.. My frustration with the formula was because he wasn't eating and I thought that he was too full. He is eating well now and if the formula is helping him to getting bigger then so be it. He eats well now and eats a variety of food. I'm happy. I don't care the least bit about giving him formula for extra calories. 2. He engages in a lot of imaginative play. He makes his cars and trains talk.. He pretends that he's a kitty.. 3. He tells stories.. It's quite often the same few stories over and over again, and you can only understand parts of it because he throws in Landonese, but it's hysterical to listen to him. It's particularly funny when he tells a story that involves him crying and he essentially laughs at himself for crying. 4. He understands and remembers more.. This is good and not so good at times.. Landon has an appointment with his nephrologist on July 19th which means that he has to get blood work. He used to have to get it once a month. Let me tell you that this was terrible! Little kids getting blood drawn is no fun at all, but there are a few added headaches. We have to try to plan having the blood drawn around when his medicine is given. His nephrologist is very understanding that it's hard to coordinate times but it makes me crazy. Landon gets his Cystagon doses at 2am, 8am, 2pm, 8pm.. To get an accurate Cystine reading, we need to know what his level is right before he is dosed again. So, ideally his blood would be drawn right before 8am or right before 2pm, right? Yes, but really we can only work with 8am. The blood has to be drawn before 10am Monday though Wednesday. Managing to get 2 kids up and out the door before 7am and then sitting in morning traffic makes it VERY difficult to get to the hospital by 8am. And even if we do, the liklihood of registering and getting in quickly for blood work is not good- not good at all.. We usually wait about an hour and I struggle to be patient when I see 1 person called in at a time when there is 5-6 rooms in the lab and 6 people behind the desk when we finally get back there. But, I digress... Anyway, I told Landon when we parked that he was going to have to get his blood drawn and that it hurts for one minute and then it's all better. I try to be as honest and prepare him as much as possible. In the past, he hasn't really responded. This time and he yelled "No!" and looked so upset. Ahh!! He understands and remembers now.. We got to the room and he climbed up in the chair, being so brave. As soon as he saw the tubes in which they collect the blood he started crying and jumped on my lap. It's no longer enough for me to hold his arms and legs. He's getting bigger so he sat on my lap as I held his legs and one arm, one phlebotomist held his right arm steady and the other worked her magic. So yes, my boy is getting bigger! He is growing up.. He's not a baby anymore.. It's a wonderful thing to watch, but makes things complicated at times.. If this is any indicator of the complications I'm talking about (aside from understanding and remembering more).. I just asked Jordan not to turn 3 today.. We'll just skip from age 2 to 4..

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