Blood Draws for Jordan

We got out of the house early today (early as in 8:40am) for an 8:45am blood draw for Jordan, yes Jordan not Landon. I have to tell you that I used to pride myself on being on time, even a bit early, for everything. Now, if I make it on time it is cause for celebration! Anyway, Landon asked where we were going so I told him that Jordan had to get a shot (I really don't know how to explain the difference between a shot and giving blood to a 3 year old) today but that Landon did not. I told him that it would be important for Landon to be extra nice and to help make his baby brother feel better because Jordan might cry because shots hurt for a moment but then it will stop hurting. Landon was up for the challenge. We began in a waiting room full of people in which Landon made it his duty to entertain. He counted, he danced, he talked loudly and looked around the room for reactions. He told me in a very clear, elevated voice that his "pee pee goes down" and "Mommy says, no touch Landon and it go down." Jordan was content to finish his bottle and then warmed up his arm by throwing the bottle across the room and then repeatedly smacked his big brother on the top of his head as Landon and the rest of the room laughed at him. The life of having two little boys, right? Jordan did great with his blood draw which by the way was just a standard check for a 1 year old apparently. He had his finger pricked and only cried because I had to hold him still. Landon told me that he was going to hold Jordan's feet since he could not hold his hand like we had discussed. He did so gently which actually distracted Jordan from not being able to get down. I just love these two boys. So, that was our morning.. A bit chaotic because Landon had therapy right after the blood draw but productive and all went well. Today was our monthly visit with Landon's nutritionist along with his feeding/speech therapist. Landon has been sick off and on since October so hasn't gained weight all that well because he is not consistently eating and taking in toddler formula as he usually does. Last visit, he gained less than a half of a pound in 6 weeks. Today she reported that he grew 1 inch and gained a little over 1 pound. Woohoo!!! It's funny because I noticed the other day that he stands several inches over the counter that is in the kitchen. He was doing his usual jumping around/break dancing and my heart stopped a few times because he kept getting close to the counter and I worried that he was going to smack his head. So I guess I knew that he was getting taller. Oh, and tomorrow is the day, our baby boy will be 1 year old!! This has been such a special, happy and incredible year! This time last year, I was preparing to be induced the next morning and hoping that I went into labor naturally that night. It was such an amazing time filled with excitement and a bit of anxiety. I was hoping that I would not need a C section and that all would go well with his birth. And I was anxious about how having another child would impact Landon. If I only knew then how wonderful it would be! Happy Birthday Jordan!! You have brought such joy to our lives and have completed our family. One last thing I want to add is for your thoughts and prayers for a young man in our Cystinosis community. I don't often mention people from our community in this blog because there are so many stories and I hate to focus on one as if the others aren't happening or aren't important, but this has really affected me. Bailey is a teenage boy who I met, along with his mom, the first time in Atlanta when I went to a focus group kind of thing a couple of years ago. They were both also at the conference that we went to last April. His mom is such an incredible and fun woman and Bailey is a sweet, kind of shy teenage boy. They learned that Bailey needed a transplant and Jessica, his mom, was prepared to donate her kidney. She learned that she could not donate as it got closer to the time when he needed it. She was devastated as was Bailey. He was very afraid to have to go on dialysis. While at the April conference, we met another family, the Jordan's who were the parents of Joey who also has Cystinosis. Joey and Bailey had become friends and actually look like they could be brothers. They didn't leave each other's side at the conference. The friendship and bond they had formed makes me smile to think about. Joey had received a transplant already, and I actually just learned that he had received a cadaver kidney and is doing very well. Well, when his mother Mary found out that Bailey needed a kidney and that Jessica could not donate her own she stepped up and went through the testing to find out if she is a match. She was! So, today she went through surgery to have her kidney removed and is donating it to her son's friend. Bailey is in surgery as I type this. Beautiful story, right? As I said, I don't often post these stories because there are lots. Another young lady in the Cystinosis community received a cadaver kidney last week. These stories happen a lot and are all beautiful stories to relay, but Bailey really pulls at my heart strings and I imagine that it's partly because I have gotten to know him and his mom and think that they are wonderful, strong and loving people. I will end this by asking for a few extra thoughts and prayers for them.